Patient-Centred Care and Patient Advocacy

20232023I,

TABLE OF CONTENTS TABLE OF FIGURES ................................................................................................................................. iv BACKGROUND AND OBJECTIVES ............................................................................................................. 1 Overview ............................................................................................................................................ 2 Rationale ............................................................................................................................................ 2 Aims and Objectives ........................................................................................................................... 4 A BRIEF REVIEW OF THE LITERATURE ...................................................................................................... 5 Patient-Centred Care: Definitions and Approaches ............................................................................ 5 Experiences of Patient-Centred Care .................................................................................................. 5 Challenges and Issues of Patient-Centred Care ................................................................................... 6 Role of Patient Advocacy .................................................................................................................... 6 Best Practices in Patient-Centred Care and Patient Advocacy ............................................................ 6 DESCRIPTION OF THE RESEARCH METHODS ............................................................................................ 9 Research Approach and Sampling ...................................................................................................... 9 Research Materials and Data-Collection Procedures ........................................................................ 10 Ethical and Data Analysis Considerations ......................................................................................... 11 KEY PRESENTATION OF DATA AND FINDINGS ....................................................................................... 12 PATIENTS/CLIENTS OF THE HEALTHCARE SYSTEM................................................................................. 14 ❖

General Views and Perspectives of Healthcare Patients/Clients .......................................................... 14 Patients’ Focus Group 1 .......................................................................................................................... 14 Patients’ Focus Group 2 .......................................................................................................................... 15 Patients’ Focus Group 3 .......................................................................................................................... 16

❖

Positive and Negative Patient Care Experiences of Healthcare Patients/Clients ................................... 17 Patients’ Focus Group 1 .......................................................................................................................... 17 Patients’ Focus Group 2 .......................................................................................................................... 19

❖

Factors that Promote and Inhibit Patient-Centred Care Experiences ................................................... 20 Patients’ Focus Group 3 .......................................................................................................................... 20

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Factors that Promote and Inhibit Patient-Centred Care Experiences ................................................... 21

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Facilitating the Role of Patients in Patient-Centred Care and Accompanying Challenges ...................... 22

i

Patients’ Focus Group 1 .......................................................................................................................... 22 Patients’ Focus Group 2 .......................................................................................................................... 24 Patients’ Focus Group 3 .......................................................................................................................... 26 ❖

Patient Advocacy and its Role in Improving Patient-Centred Care ....................................................... 28 Patients’ Focus Group 1 .......................................................................................................................... 28 Patients’ Focus Group 2 .......................................................................................................................... 29 Patients’ Focus Group 3 .......................................................................................................................... 31

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Key Summary Points and Takeaways from Patient Focus Groups ........................................................ 33 Views on Patient-Centred Care ............................................................................................................... 33 Patient-Centred Care Experiences ........................................................................................................... 33 Patient Advocacy and its Relationship to Patient-Centred Care................................................................ 34

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Key Recommendations for Enhancing Patient Advocacy and Patient-Centred Care ............................. 36

HEALTHCARE PROFESSIONALS .............................................................................................................. 39 ❖

General Definitions and Experience of Patient-Centred Care............................................................... 39

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Inhibiting and Facilitating Factors for High-Quality Patient-Centred Care ............................................ 40

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Role and Benefits of Patient Advocacy ................................................................................................ 42

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Suggested Recommendations for Improving Patient-Centred Care and Patient Advocacy ................... 43

HEALTH-BASED NGO LEADERS .............................................................................................................. 50 ❖

General Definitions and Views of Patient-Centred Care and Key Benefits ............................................ 50

❖

Beliefs about the Role of NGOs in Patient-Centred Care...................................................................... 51

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Role and Benefits of Patient Advocacy ................................................................................................ 52

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Suggested Recommendations for Improving Patient-Centred Care and Patient Advocacy ................... 53

KEY SUMMARY CONCLUSIONS .............................................................................................................. 55 Healthcare Professionals/Providers: Summary Perspectives and Conclusions ................................. 56 Health-based NGOs: Summary Perspectives and Conclusions .......................................................... 56 MAIN RECOMMENDATIONS FOR ACTION ............................................................................................. 58 Main Actionable Recommendations for Patients ............................................................................. 58 Main Actionable Recommendations for Healthcare Professionals/Providers .................................. 59 Main Actionable Recommendations for Health-based NGOs ........................................................... 60 Main Actionable Recommendations for the Government ................................................................ 61 ii

Main Actionable Recommendations for the Healthcare System....................................................... 63 Reflection and Future Directions ........................................................................................................... 66 REFERENCES .......................................................................................................................................... 68 APPENDICES .......................................................................................................................................... 70 Patient Advocacy Project Photo Gallery ................................................................................................ 71 ABOUT THE RESEARCH TEAM ............................................................................................................... 75

iii

TABLE OF FIGURES Figure 1: FOCUS GROUP KEY FINDINGS .................................................................................................. 37 Figure 2: HCP KEY FINDINGS .................................................................................................................. 48 Figure 4: NGO KEY FINDINGS ................................................................................................................. 54

iv

BACKGROUND AND OBJECTIVES In ancient Greece, “the father of medicine” Hippocrates, distinguished diseases that were acute (abrupt, sharp, and brief) from those that were chronic. Derived from the Greek word ‘chronos’, the term “chronic” means lasting a long time. Today, chronic diseases are defined as illnesses that persist for a long period of time with the U.S. National Centre for Health Statistics specifying chronic diseases as those lasting 3 months or more.

Chronic diseases such as Lupus, Sickle Cell and Arthritis are often debilitating and irrespective of the healthy lifestyles adopted, the onset of these diseases is inevitable for a growing number of young, unsuspecting people. Preventative care is not an option so that what cannot be cured must be endured, therefore, those affected must be afforded social, medical, and economic well-being as a right.

Lupus and Sickle Cell affect mostly young people in their most productive and reproductive years. The unseen pain of Sickle Cell has led to patients in crisis at the Accident and Emergency Department of the Queen Elizabeth Hospital being told that they are neither accident nor emergency and must ‘wait their turn’. Compounding this unfortunate situation is an exaggerated fear of physicians, inducing dependency and addiction to drugs used in the pain management.

Established in 1991, Hope Foundation has defined itself as a legitimate player in the health sector through patient advocacy and has stuck steadfastly to its primary objective of raising awareness around the lesserknown chronic diseases in Barbados.

From inception support groups and patient educational seminars have formed the bedrock of building relationships as support mechanisms. For example, annually a seminar for Newly Diagnosed Lupus Patients is held. This format brings together patients and healthcare professionals in an informal setting that improves communication; instils confidence in patients to ask questions; promotes self-awareness to identify evolving problems and includes relatives and friends so that they too have a better understanding of the disease to lend appropriate support. This approach is also an opportunity for healthcare professionals to see patients beyond diagnosing and prescribing.

Patient-centred care is considered as the accepted principle to deliver quality healthcare. It is defined by the Institute of Medicine (IMO) as ‘providing care that is respectful of, and responsive to, individual

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patient preferences, needs and values, and ensuring that patient values guide all clinical decisions. This requires patients to have the ability to fully participate in their own care.

Patient participation is however dependent on the following factors: lack of fear; understanding the health system; respect for and from HCPs, confidence to meaningfully engage; education; adequate support mechanisms and self- management. Such attention would ensure that the patients are truly empowered.

The articulated policy in Barbados is that healthcare is free at the point of delivery. However, the complexity of the healthcare system is apt to compromise that laudable goal and there is often a vast difference between articulated policy and practice. The conflicting instructions given to patients by HCPs is contrary to the spirit of free healthcare at the point of delivery. For example, while HCPs may determine in the patient's best interest that certain critical investigations should be conducted, these investigations may not be available in the public sector. The patient may then be faced with the frustrating dilemma of having to attempt payment for a test, the cost of which compromises their ability to afford their other life essentials.

Overview This study aimed to explore and understand the occurrence, perceptions and quality of patient-centred care within the Barbadian healthcare system. In addition, it examined the role of patient advocacy in advancing this form of care within the sector. To achieve this, the researchers conducted qualitative research to examine in-depth the experiences of three different stakeholder groups; Barbadians who have undergone some form of care within the local healthcare sector (e.g., treatment clinic, hospital, polyclinic), health care practitioners/professionals (doctors, pharmacists, nurses), and heads of healthbased NGOs in Barbados. Through examining these various perspectives, the researchers hoped to gather key insights around the extent to which patient-centred care is experienced and practised within the local health sector and to determine any barriers to achieving this.

Rationale Over the years, there has been an increasing recognition of and emphasis on the role of patient-centred care and advocacy in clinical practice. Past research has highlighted the negative consequences related to the absence of patient advocacy (Stewart-Amidei et al., 2010, Black, 2011). For example, a study by Page | 2

Norman et al. (2012) suggested that in some Ghanian hospitals, patients suffered complications and died because of healthcare professionals not attending to them in time, rather than due to their illness(es).

Patient advocacy has previously been seen as a key part of nurses’ job roles and included: protecting patients, acting as their voice, providing the highest standard of care, educating patients about their condition and care, and building interpersonal relationships (Nsiah et al., 2019).

Despite recognising its importance, the research on patient-centred care and patient advocacy and its impact on health care delivery is limited, and even more so in low- to middle-income countries. Most studies have also used a quantitative approach to examine the correlation between overall patientcentred care and improved population health (E.g. (Guanais et al., 2018). While these are informative, more qualitative research is needed to explore how specific characteristics of patient-centred care might be capable of increasing the quality of individual and wider health care in these countries.

To enhance and deepen understanding of the impact of patient-centred care and advocacy within the Barbadian context, this study will adopt a qualitative approach to gain in-depth knowledge of Barbadians’ experiences within the healthcare system, as well as patients and healthcare professionals views on the existence, importance, and feasibility of patient-centred care within the local context.

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Aims and Objectives Given the above rationale, the key objectives of the research project are as follows: 1.

To examine the experiences, evaluations, and perceptions regarding patient-centred care (barriers and facilitating conditions) among Barbadian residents who had received some form of healthcare treatment (or medical intervention) within the local healthcare sector.

2.

To explore the practice of patient advocacy and the delivery of patient-centred care among healthcare professionals within the local healthcare sector.

3.

To assess how health-based NGOs perceive patient-centred care and advocacy and the ways in which they can bolster and support the local healthcare sector in delivering the best quality patient-centred care for Barbadian residents.

Outline of the Research Report The next section of this research report presents a brief literature review on the topics of patient-centred care and patient advocacy as well as their key definitions, roles and benefits, and main challenges, especially within the healthcare context. The research report then moves on to explain the key methodological approaches, sampling and data-collection methods, and other activities that were conducted to gather, interpret, and analyse the data for addressing the main objectives. Next, the report addresses the key results and findings of the data analysis, covering the different groups of participants in the study. Finally, the report culminates into key summary conclusions and several sets of practical and strategic recommendations for various target stakeholder communities to address to enhance patientcentred care and patient advocacy in the local healthcare setting.

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A BRIEF REVIEW OF THE LITERATURE Patient-Centred Care: Definitions and Approaches Common definitions of patient-centred care in literature include themes such as “involvement of the patient in clinical care and decisions” and a “provision which addresses the needs, values and desires of the patient” (Constand et al., 2014).

Although population outcomes may also improve, “the primary goal and benefit of patient-centred care is to improve individual health outcomes, not just population health outcomes” (Massachusetts et al., 2017).

Healthcare institutions approach patient-centred care in four distinct ways: 1. Improving access to care and continuum of care with clinicians; 2. Bolstering patient participation in care by making it easier for patients to become actively involved in the design of their care; 3. Encouraging self-management by establishing systems which facilitate patient and community confidence in care and; 4. Ensuring that there are reliable mechanisms for the coordination of care in and out of healthcare settings. (Bergeson and Dean, 2006).

Experiences of Patient-Centred Care Patient-centred care is shown to increase cultural competence by highlighting foundational communication skills, overlap between healthcare and social issues and variations in health beliefs among the desired population (Epner and Baile, 2012). It has also been seen as sound business practice. There are numerous benefits for practicing patient-centred care at the clinical and organizational levels which include an increase in consumer (patient) satisfaction, higher quality care, and employee satisfaction (Charmel and Frampton, 2008).

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Challenges and Issues of Patient-Centred Care The main challenge of patient-centred care is to understand the distinction between the disease and illness. Effective care utilizes attention to both the disease process/diagnosis, as well as the patient’s experiences with illness feelings, thoughts, and altered behaviours of someone who is unwell (Brown et al., 2002).

Other challenges include patient knowledge of the roles and responsibilities of providers, as well as hesitancy in approaching providers due to barriers in open communication. In a study by Hariharan et al.

(2006) from the Caribbean, patients were not provided with enough information on the role of the anaesthesiologist and did not feel comfortable asking their provider questions about complications following procedures and common side effects of treatment. (Hariharan et al., 2006)

Role of Patient Advocacy Healthcare providers such as nurses, patient support groups and representatives in some hospital settings have traditionally been patient advocates. Their general duties include but are not limited to the following: 1. Sharing information through conferences, workshops, etc 2. Establishing fundraising for patient needs 3. Advocating for research on specific diseases and participation in research 4. Facilitating social events to provide emotional support for families and; 5. Becoming involved in developing and updating guidelines for the patients affected by the disease(s) of interest (Brown et al., 2002) Due to NGOs in Barbados adopting many of the above roles, they were identified as a group of interest in this study.

Best Practices in Patient-Centred Care and Patient Advocacy In general, there are three main tenets of effective patient-centred care: (1) effective communication, (2) partnership and (3) health promotion. Successful programs for patient-centred care addressed key areas such as empathy, engagement, respect, relationships, shared decision-making, holistic focus and

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coordinated care. When these areas were addressed, there were marked improvements in patient quality of life and provider satisfaction, as well as reduced associated costs.

Kleinman Questions (Kleinman et al., 1978)

• • • •

•

What do you think has caused your problem?

Why do you think it started when it did?

What do you think your sickness does to you?

How severe is your sickness? Will it have a short or long course?

What kind of treatment do you think you should receive?

What are the most important results you hope to receive from this treatment?

What are the chief problems your sickness has caused for you?

What do you fear most about your sickness?

• • • • • •

Beliefs about health (What caused your illness/problem?)

Explanation (Why did it happen at this time?)

Learn (Help me to understand your belief/opinion.)

Impact (How is this illness/problem impacting your life?)

Empathy (This must be very difficult for you.)

Feelings (How are you feeling about it?)

•

Listen with sympathy and understanding to the patient's perception of the problem.

Explain your perceptions of the problem.

Acknowledge and discuss the differences and similarities.

Recommend treatment.

Negotiate treatment.

• • •

The BELIEF Instrument (Dobbie et al., 2003)

LEARN (for clinicians) (Berlin and Fowkes Jr, 1983)

• • • •

Table 1 Widely accepted approaches to facilitating patient-centred communication that account for a diverse population:

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A study focused on implementing training for providers on directing cancer patients toward appropriate resources in the Caribbean and Latin America further identified key strategies to help providers become advocates: 1. fostering strategic academic partnerships to bring additional expertise and support to the effort; 2. careful adaptation of the curriculum to the local context and culture; 3. early identification of feasible metrics to facilitate program evaluation and future outcomes research; and 4. designing training programs to meet local health system needs. (Stoltenberg et al., 2020

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DESCRIPTION OF THE RESEARCH METHODS Research Approach and Sampling The main research methodology employed in this study was the qualitative research approach, which involved the following methods and sampling profiles: ●

Three (3) focus groups of patients: Focus groups were

conducted

with

a

diverse

range

of

patients/clients across the local healthcare system during the period of April and May 2023. Focus

HCPs (n=11)

Focus Groups (n=32)

groups carried specific profiles of healthcare patients/clients

extracted

health/medical

conditions

across

a

range

(currently

of

NGOs (n=4)

under

treatment or care of healthcare practitioners; or those who have recently undergone treatment or care) as well as across a range of sectors of the

Qualitative Data

healthcare sector (primary/secondary/tertiary care settings; private and public sectors).

Each focus

group ranged from 8 to 12 participants. A total of thirty-two (32) healthcare patients were sampled and interviewed across the three focus groups. ●

One-on-one interviews with healthcare practitioners/professionals: One-on-one semistructured interviews were conducted with a purposive sample of eleven (11) healthcare professionals/practitioners (including nurses, doctors, pharmacists, physiotherapists, mental health specialists, policy-based personnel) across a range of specialties, sectors (private and public) and care settings (primary/secondary/tertiary care).

●

One-on-one interviews with health-based NGO leaders: One-on-one semi-structured interviews were conducted with a purposive sample of four (4) health-based NGOs resident in the local healthcare and community-based sector of Barbados, extract across a range of thematic healthbased areas (e.g., cancer, hypertension, and other chronic diseases).

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Research Materials and Data-Collection Procedures All instruments (i.e., those used for patients’ focus groups and one-on-one interviews with healthcare professionals and NGO leaders) were semi-structured in design, inclusive of all open-ended or qualitative type questions covering key areas such as patient-centred care and related definition; views and perspectives of patient-centred care; the facilitating and inhibiting factors of high-quality patient-centred care in Barbados and exploration of positive and negative patient care experiences; definition and views of patients’ involvement in their own health care and the related challenges; definitions and views of patient advocacy and its contributions to and benefits for high-quality patient-centred care and related stakeholder groups; and key recommendations for improving both patient advocacy and patient-centred care in Barbados’ healthcare system. Focus group and one-on-one interview sessions were conducted using a mixture of online (e.g., Zoom-based focus group interviews) and in-person modalities.

Focus group and interview sessions ranged from 1 to 1.5 hours each and were led by a trained

and

experienced

interviewer/facilitator.

Each

session

and

was

recorded

supported by a trained research assistant who either performed the relevant notetaking and/or

RESEARCH TEAM DISCUSSES INTERVIEW PROTOCOL.

editing of the transcription which was mechanically conducted by an artificial intelligence (AI) software programme (Otter AI.). Reviews were done on these artificially generated transcripts to ensure they were accurately representative of the recordings that were uploaded in the system.

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Ethical and Data Analysis Considerations A full examination of the study protocols, methods and materials were assessed by the local Institutional Review Board (IRB) prior to the official start of the data collection and approval was obtained (Reference Number: CREC-CH.00168/03/2023). All considerations regarding participants’ confidentiality, anonymity and informed consent procedures were adequately followed and applied in practice and all participants were sufficiently informed about the nature and purpose of the research before their acceptance to be part of the study group of the research.

Given the study was entirely qualitative in nature, the use of thematic analysis was employed to generate the needed thematic categories which were explicated in fuller detail across the three categories of respondents. The findings of these analyses, according to the main objectives of this study, are described, presented, and discussed in the following section of this Report.

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KEY PRESENTATION OF DATA AND FINDINGS This chapter of the Report presents the key data and findings extracted from the detailed qualitative analyses of data derived from the patients’ focus groups as well as healthcare professionals’ and healthbased NGO leaders’ interviews. The chapter is divided into several sections inclusive: of key findings from the patients’ focus group sessions; healthcare professionals/practitioners’ interviews; health-based NGO leaders’ interviews regarding patient-centred care and patient advocacy; and the relationship between both domains within the local healthcare sector in Barbados.

•

Section 1: Patients/Clients of the Healthcare System

•

Section 2: Healthcare Professionals

•

Section 3: Health based NGO Leaders

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SECTION 1

PATIENTS/CLIENTS OF THE HEALTHCARE SYSTEM ❖ GENERAL VIEWS AND PERSPECTIVES OF HEALTHCARE PATIENTS/CLIENTS PATIENTS’ FOCUS GROUP 1 Views, Definitions and Perspectives of Patient-Centred Care In the first focus group, participants shared their general views and perspectives on patient-centred care during the interview. A majority of the participants indicated that they were aware of the concept, with one participant expressing some uncertainty. When asked to describe what patient-centred care meant to them, the participants provided insightful responses.

Most participants emphasised the importance of the patient's involvement in their own care and decisionmaking. It was also highlighted that there is a need for healthcare providers to listen to patients, respect their dignity, and make them feel comfortable throughout the care process. One participant also shared about her personal experience as a sickle cell patient, expressing the challenges she faced and the significance of maintaining patient dignity in healthcare interactions.

Another participant shared his experience of initially receiving inadequate care for a condition affecting his head/scalp. He mentioned visiting multiple doctors who dismissed it as a fungal infection until he consulted with another well-known specialist, who conducted further tests and eventually diagnosed him with lupus. It was further emphasised the importance of doctors delving deeper into patients' symptoms and not settling for surface-level diagnoses.

Several patients in the group highlighted the importance of building a respectful relationship between patients and doctors where open and comfortable communication is encouraged. They emphasised the need for doctors to listen attentively to patients' concerns and views, creating a collaborative environment for decision-making that aims at providing the best possible care.

The participants' shared views which emphasised the significance of feeling comfortable and having open communication with healthcare providers. They stressed the importance of being heard, respected, and not feeling judged or dismissed by doctors. Participants all agreed that the patient-doctor relationship and the ability to openly express concerns and ask questions were critical components of patient-centred care.

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Overall, the participants recognised the value of patient-centred care and expressed their expectations for healthcare providers to prioritise their comfort, dignity, and involvement in decision-making. Their insights provided valuable perspectives on the dimensions of patient-centred care that they considered essential, emphasising the need for respectful and collaborative healthcare interactions.

PATIENTS’ FOCUS GROUP 2 Views, Definitions and Perspectives of Patient-Centred Care

In the second focus group, the participants are asked about their awareness and understanding of patientcentred care. They describe patient-centred care as an approach where the patient is the focus and receives treatment and care with their comfort and well-being in mind. They underscored the importance of making the patient feel valued and ensuring their needs are addressed.

Several participants highlighted and agreed that the need for effective communication to convey that the patient is at the centre of care. They mention instances where lack of communication led to confusion and dissatisfaction. Another participant stressed the importance of patients speaking up for themselves and being able to ask questions, especially when it comes to understanding their treatment and care.

The participants discussed the challenges they have faced within the healthcare system, such as long waiting times and inadequate communication. They expressed the need for healthcare professionals to be responsive, respectful, and provide timely treatment. Some participants also mentioned the role of triage in determining the urgency of patients' conditions, but they expressed concerns about [a lack of] fairness and feeling overlooked when seeking healthcare attention in Barbados.

The participants generally recognised the need for education and training for healthcare professionals to enhance patient-centred care. They suggested that training should focus on effective communication, listening to patients, and creating a supportive environment where patients can voice their concerns without fear of victimisation.

Overall, the participants' views on patient-centred care revolve around the importance of effective communication, patient empowerment, and timely treatment. They highlight the need for healthcare professionals to prioritise patient needs, address their concerns, and create a supportive and respectful environment.

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PATIENTS’ FOCUS GROUP 3 Views, Definitions and Perspectives of Patient-Centred Care

In this final focus group, participants shared their understanding and perspectives on patient-centred care. The qualitative analysis reveals several key themes that highlight the participants' views on what patient-centred care means to them, which were consistent with the above-mentioned groups and their responses: •

Focus on the concerns of the patient: Participants acknowledged the importance of healthcare providers being attentive to the concerns and needs of the patient. They believe that patients possess valuable self-knowledge and expect healthcare professionals to listen and respect their insights.

•

Emphasis on empathy: Participants stressed the significance of healthcare providers demonstrating empathy towards patients. They valued health professionals who genuinely care and show understanding, going beyond surface-level interactions to establish a meaningful connection with patients.

•

Inclusion of the patient's family and caregivers: The participants underscored the importance of involving the patient's family and caregivers in the care process. They believed that patient-centred care should extend beyond the individual patient to consider the broader support network.

•

Patience and understanding: Participants highlight the need for healthcare providers to be patient and understanding. They recognise the time constraints and pressures healthcare professionals face but expect them to prioritise patients and ‘make an effort’ to comprehend their unique circumstances.

•

Ongoing training and education: Participants valued healthcare professionals who engage in continuous training and education. They believed that staying updated on the latest advancements and best practices ensures the delivery of high-quality care.

Overall, the participants' perspectives on patient-centred care reflect a desire for healthcare providers to actively listen, show empathy, involve the patient's support network, demonstrate patience and understanding, and continuously improve their skills and knowledge.

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❖ POSITIVE AND NEGATIVE PATIENT CARE EXPERIENCES OF HEALTHCARE PATIENTS/CLIENTS PATIENTS’ FOCUS GROUP 1 Positive Experiences of Patient-Centred Care During the focus group, participants shared their positive experiences of patient-centred care. One participant recounted a situation where she sought medical help for flu-like symptoms and breathing difficulties. Despite initially suspecting COVID-19, the doctor provided personalised care, taking into consideration her pre-existing condition of sickle cell anaemia. The doctor actively listened to her concerns, acknowledged her medication regime, and worked collaboratively with her to address her immediate symptoms while also considering her overall health. The patient noted that she felt empowered and proud of her experience, as she was able to advocate for herself and have her needs addressed. Another participant shared a positive experience with an ophthalmologist who provided exceptional care and built a strong doctor-patient relationship. The ophthalmologist's attentiveness, availability, and willingness to address her concerns led to a trusting and long-term partnership.

These positive experiences of patient-centred care were characterised by active involvement in care decisions, personalised attention to individual needs, effective communication, and collaboration between healthcare providers and patients. Patients felt empowered, supported, and valued, which positively impacted their recovery and overall well-being.

Negative Experiences of Patient-Centred Care and Factors

Participants also shared negative experiences of patient-centred care, highlighting instances where they felt the delivery of care fell short. One female participant recounted an incident where she felt dismissed and unheard during a hospitalisation. Despite expressing her concerns about abnormal heart rhythms and hearing the term "heart failure," she received little information or follow-up from the medical staff. The lack of communication, dismissive attitude, and unfulfilled promises left her feeling defeated, anxious, and uncertain about her health condition. The participant shared a distressing encounter with a female doctor who demonstrated a lack of compassion and gentleness while performing a breast examination.

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The doctor's rough and callous approach caused extreme pain and left the participant feeling disregarded and emotionally distressed.

These negative experiences were characterised by poor communication, lack of empathy, dismissive attitudes, and inadequate attention to patients' physical and emotional needs. Patients felt overlooked, disregarded, and unsupported, leading to heightened anxiety, emotional turmoil, and a sense of abandonment.

Factors that Promote and Inhibit Patient-Centred Care Experiences

Factors that were identified as promoting high-quality patient-centred care included: 1. Communication: Effective and open communication between healthcare providers and patients, where information is shared, concerns are addressed, and patients are actively involved in decision-making processes.

2. Access to Care: Timely and efficient access to healthcare services, minimising waiting times and ensuring patients can receive the care they need promptly.

3. Empathy: Healthcare providers demonstrating empathy, understanding, and compassion towards patients' concerns, emotions, and overall well-being.

4. Mutual Respect: Establishing a relationship built on mutual respect and dignity between healthcare providers and patients, fostering a sense of partnership and collaboration.

Factors that were identified as inhibiting high-quality patient-centred care included: 1. Financial Constraints: Limited financial resources hindering access to necessary medical tests, treatments, or private care options, leading to delays or inadequate care.

2. Lack of Attention to Detail: Healthcare providers failing to pay attention to individual patient needs, missing important details, or neglecting to provide comprehensive care.

3. Dismissive Attitudes: Healthcare providers displaying dismissive behaviour, disregarding patients' concerns, and failing to address their needs, leading to feelings of being unheard and undervalued.

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The identification of these factors provides insights into the elements that contribute to or hinder patientcentred care experiences. By addressing these factors, healthcare systems and providers can work towards delivering care that is personalised, empathetic, respectful, and attentive to patients' needs, ultimately improving overall healthcare outcomes and patient satisfaction.

PATIENTS’ FOCUS GROUP 2 Positive Experiences of Patient-Centred Care

The Forlam Health Clinic (in Carrington Village) emerged as a shining example of patient-centred care.

One participant recounted a positive experience of taking their children for free kidney testing. They were impressed by the expeditious and respectful manner in which they were treated. Notably, the nurse displayed remarkable patience and gentleness towards the participant's autistic son, creating a comfortable and pleasant experience. The participant commended the clinic's facilities and went on to write a glowing review of their encounter.

Another participant affirmed the positive reputation of the Forlam Clinic, praising its professionalism, community-mindedness, and affordability. They also highlighted the existence of other private healthcare facilities in Barbados that offered high-quality care at reasonable prices. Despite the low cost, these clinics maintained high standards and saw a significant number of patients, emphasising the importance of emulating such patient-centred practices.

Negative Experiences of Patient-Centred Care and Factors

Some participants shared distressing experiences where patient-centred care was lacking. One participant revealed that their sister-in-law had passed away in the Accident & Emergency (A&E) department after not receiving timely care. They believed that if she had been attended to promptly, her outcome may have been different, expressing disappointment in the care provided.

Another participant recounted an incident involving their terminally ill mother. Due to miscommunication between doctors, their mother was prescribed medication that she already had at home. This lack of

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coordination raised concerns about the quality of care and the potential for medication errors. The participant stressed the need for improved communication and more thorough record-keeping.

❖ FACTORS THAT PROMOTE AND INHIBIT PATIENT-CENTRED CARE EXPERIENCES In addition to the specific positive and negative experiences, participants identified overarching factors that promote or inhibit patient-centred care in the Barbadian healthcare system. Factors promoting patient-centred care included effective communication, empathy from healthcare providers, high-quality training, responsive feedback systems, adequate resources (both human and financial), good interpersonal relations, and the involvement of professionals such as chaplains or psychologists to support patients and their families.

Conversely, factors inhibiting patient-centred care encompassed resource shortages (including human, material, and equipment resources), delays or inadequacies caused by non-medical staff, absence of patient files leading to disorganised care, insufficient staffing and rest periods for healthcare professionals, and inadequate laboratory support causing prolonged waiting times for test results.

PATIENTS’ FOCUS GROUP 3 Positive Experiences of Patient-Centred Care

Participants in Focus Group 3 shared several positive experiences of patient-centred care. One participant expressed gratitude for the healthcare professional who took the time to listen and be professional despite a delay in the appointment. The participant appreciated feeling valued and acknowledged during the interaction, highlighting the importance of healthcare providers being attentive and responsive to patients' needs.

Another positive experience involved a participant's late mother who was admitted to the Accident and Emergency (A&E) department. The attending doctor exhibited excellent communication skills by thoroughly explaining the tests, involving the patient's family in decision-making, and showing concern for the patient's well-being. The participant appreciated the doctor's holistic approach, admitting the patient based on their condition and intuition rather than solely relying on test results. This exemplified a

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patient-centred approach where the healthcare team considered the patient's overall health and clinical presentation.

A participant diagnosed with lupus shared a positive experience where a doctor went above and beyond to provide accurate diagnosis and care. The doctor listened attentively, ordered additional tests, and even facilitated an appointment with a specialist, leading to a definitive diagnosis. This example highlighted the importance of healthcare professionals who go the extra mile to ensure accurate and timely diagnoses, resulting in appropriate treatment and management.

Negative Experiences of Patient-Centred Care and Factors Participants also shared negative experiences where patient-centred care was lacking. These experiences included instances where healthcare professionals appeared dismissive, showed a lack of empathy, or failed to prioritise patients' needs. Participants cited examples of delayed treatment, inadequate pain management, and situations where healthcare professionals seemed more focused on bureaucratic procedures than patient well-being (especially within the public health facilities/institutions in Barbados).

❖ FACTORS THAT PROMOTE AND INHIBIT PATIENT-CENTRED CARE EXPERIENCES Participants in the focus group identified several critical factors that promote patient-centred care in Barbados. They emphasised the need for healthcare professionals to be understanding, empathetic, and attentive listeners. The participants appreciated doctors and nurses who demonstrated a genuine interest in their well-being, respected their concerns, and involved them in the decision-making process. They also highlighted the significance of having a personal relationship with healthcare providers, where patients feel comfortable reaching out for assistance and receiving prompt attention.

Training and education were also mentioned as essential factors. Participants recognized the value of healthcare professionals who possessed the necessary expertise and were up to date with medical knowledge. However, they expressed concern about an over reliance on technology and the need for doctors to trust their clinical judgement instead of solely relying on tests or online resources. Other factors facilitating patient-centred care included addressing stigmatisation, treating patients as individuals rather than just medical cases, and creating a healthcare system that supports healthcare professionals.

Participants acknowledged that healthcare providers often face significant workloads and fatigue,

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impacting their ability to provide optimal care. They called for improvements in staffing, workload management, and support systems to ensure healthcare professionals can deliver quality care while maintaining their own well-being.

In contrast to the above, participants also identified several factors that hindered the delivery of patientcentred care in Barbados. They mentioned the presence of arrogance or an inflated sense of superiority among some healthcare professionals, which affected their interactions with patients. The participants also expressed concerns about the over reliance on technology and the excessive paperwork that impeded direct patient care. Additionally, participants emphasised the impact of healthcare professionals' fatigue and heavy workloads on the quality of care provided.

❖ FACILITATING THE ROLE OF PATIENTS IN PATIENT-CENTRED CARE AND ACCOMPANYING CHALLENGES PATIENTS’ FOCUS GROUP 1 Including the Patient as a Partner in Care The focus group participants (Focus Group 1) strongly believed that patients should be actively involved as partners in their own care. They emphasised the need for healthcare professionals to recognise and respect the patient's perspective and to involve them in decision-making processes. They also identified some key elements that would support patient involvement: 1. Avenue for Patient Involvement: Participants stressed the importance of creating avenues for patients to be involved in decisions about their care. They expressed the need for clear channels of communication and mechanisms through which patients can contribute their insights and preferences.

2. Representation for Patients: Participants highlighted the importance of having bodies or organisations (e.g., NGOs) that can represent patients' interests and provide a voice for them in healthcare decision-making. They suggested the involvement of advocates or intermediaries who can bridge the gap between patients and healthcare providers.

3. Holistic Approaches: Participants emphasised the need for a more holistic approach to healthcare that considers the physical, mental, emotional, and spiritual aspects of patient well-

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being. They suggested that healthcare professionals should provide comprehensive information, guidance, and support beyond medication, also considering lifestyle factors and promoting overall health and wellness.

4. Patient Education: Participants expressed the need for patient education to empower individuals to be more actively involved in their own care. They emphasised the importance of accessible information that helps patients understand their conditions, treatment options, and ways to manage their health effectively.

Challenges of Patient-Centred Care in Barbados

In this same focus group, several challenges of patient-centred care in Barbados were discussed. These challenges include dismissive attitudes of healthcare professionals, limited involvement of patients in the design and delivery of care, lack of representation for patients, and a lack of holistic approaches to healthcare.

•

Dismissive Attitudes: Participants in the focus group expressed their dissatisfaction with the dismissive attitudes of some healthcare professionals. They felt that their concerns were not taken seriously and that their voices were not heard. This dismissive behaviour hindered their ability to actively participate in their own care.

•

Limited Involvement of Patients: The participants agreed that patients should play an essential role in the design and delivery of their own care. However, they felt that healthcare professionals in Barbados did not always share this view. They believed that doctors and other healthcare professionals often disregarded or omitted the input of patients in decision-making processes.

•

Lack of Patient Representation: Another challenge highlighted was the lack of bodies or organisations that represent patients and give them a voice in healthcare decisions. Participants emphasised the need for advocates or intermediaries who could effectively communicate patients' needs to healthcare providers and facilitate meaningful patient involvement.

•

Lack of Holistic Approaches: Participants felt that there was a need for a more holistic approach to healthcare in Barbados. They mentioned the importance of considering not only physical health but also mental, emotional, and spiritual well-being. Participants believed that healthcare professionals

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should provide comprehensive information and support to patients, addressing lifestyle factors and providing guidance beyond medication.

PATIENTS’ FOCUS GROUP 2 Including the Patient as a Partner in Care

The discussion also focused on the role of patients in the design and delivery of care. Participants widely agreed that patients should play an essential role in their own healthcare. Several participants emphasised that while doctors possess professional knowledge, patients have unique insights into their own bodies.

They stressed the importance of patient expression and public education, allowing individuals to articulate their experiences and contribute to the diagnostic process. Participants also highlighted the benefits of patient education, where individuals can enhance their understanding of diseases, fostering improved interactions with healthcare professionals.

When asked if Barbadian practitioners typically hold the view that patients should be involved in care design and delivery, some participants stated that newer healthcare professionals are more inclined towards open dialogue and patient involvement. However, older doctors, rooted in traditional practices, were less likely to encourage patient engagement (a view expressed by most participants). The shift towards recognising the importance of patient involvement was seen as a positive development among the newer generation of healthcare professionals.

To fully include patients in the design and delivery of care, several challenges must be overcome. One participant identified public education as a key factor, emphasising the need to educate individuals about their health conditions, the importance of early detection, and the significance of being proactive in seeking medical attention. Additionally, client relations training was suggested to improve the doctorpatient relationship and promote effective communication.

Other participants highlighted the importance of family conversations and sharing information about generational health issues. By openly discussing family health conditions and educating younger members about potential risks, individuals can be better prepared and proactive in managing their health.

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A set of participants underscored the significance of patient involvement in decision-making and suggested that doctors should encourage patients to ask questions, explain treatment plans thoroughly, and ensure that patients understand the reasons behind prescribed medications or procedures. This would enable patients to actively participate in their own care and make informed decisions.

The role of pharmacists was also mentioned in facilitating patient involvement. One participant highlighted that, pharmacists can provide valuable information and guidance on prescribed medications, potentially addressing patients' concerns and ensuring they have a better understanding of their treatment.

Moreover, participants expressed the need for government involvement in promoting patient-centred care. This could include rolling out educational programmes in schools to instill healthy habits from a young age and offering incentives, such as tax benefits, to encourage individuals to prioritise their health.

Collaborative efforts involving healthcare professionals, nutritionists, and other stakeholders were also seen as crucial for a comprehensive and coordinated approach to patient care.

Challenges of Patient-Centred Care in Barbados

During the focus group discussion on the inclusion of the patient in the care system in Barbados, several challenges were identified. One key challenge highlighted by most participants was the lack of public education. Participants expressed concerns that individuals in Barbados often wait until their illnesses have progressed significantly before seeking treatment. This delay in seeking medical care can lead to more severe health issues and even amputations. To address this challenge, some participants suggested the need for comprehensive public education programs that promote early detection and encourage individuals to be proactive in managing their health.

Another challenge discussed was the need for client relations training for healthcare professionals. One participant noted that older doctors, who were seen as the "fountains of knowledge," were less receptive to patient involvement and questioning. However, another participant also observed a positive shift among newer healthcare professionals who recognize the importance of open dialogue and communication with patients. The participants emphasised the need for healthcare professionals to listen to patients, relate well to them, and engage in two-way communication to provide effective care.

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Furthermore, there was a suggestion that the Barbados health system should adopt International Organisation for Standardisation (ISO) standards to improve the quality of care. One participant aptly proposed that implementing ISO standards would establish a framework for consistent care delivery and enhance accountability within the public health system. This would ensure that certain standards of care and treatment are met, leading to improved patient outcomes.

PATIENTS’ FOCUS GROUP 3 Including the Patient as a Partner in Care

For the third focus group, the discussion focused on the participants' personal feelings about becoming actively involved in their own patient care and what support, resources, and training would be needed to facilitate their involvement. Participants expressed a desire to be actively involved in their own care. Some participants emphasised the importance of being well-informed and having access to an appointment system that allows patients to schedule their own appointments conveniently. They suggested that patients should have the ability to reach out directly to healthcare professionals for questions or concerns.

One participant shared the perspective that healthcare professionals should acknowledge their limitations and be open to seeking additional information or guidance when necessary. They stressed the importance of professionals acknowledging their uncertainties and communicating openly with patients rather than adopting an arrogant attitude.

The need for patient advocates was discussed, highlighting the role of healthcare professionals who can support and advocate for patients. A participant mentioned the importance of having doctors and healthcare professionals who are knowledgeable and willing to consult with other specialists or experts when needed. Another highlighted the need for an integrated information system that allows for seamless communication and sharing of patient information among healthcare professionals. They expressed concerns about the current paper-based system and suggested the integration of information to ensure continuity and better coordination of care.

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Challenges of Patient-Centred Care in Barbados

Several challenges emerged from participants concerning the inclusion of patients in the care system. One challenge highlighted by most participants concerned the role of patients in the design and delivery of their own care. While some participants agreed that patients should play an essential role, others expressed skepticism. They believed that patients may not have all the necessary knowledge and information to determine the course of their treatment. They emphasised the importance of being informed and expressing opinions but preferred to give way and take advice from healthcare professionals in determining the best care plan.

Another set of participants expressed concerns about the ‘superiority complex’ some healthcare professionals may have, believing that they have all the answers and knowledge while patients do not.

This perception may hinder patient involvement and shared decision-making in the care process.

Participants highlighted the need for healthcare professionals to recognize the importance of patients' opinions and actively involve them in the design and delivery of their care.

The discussion also revealed challenges related to communication and attitudes. For example, one participant shared an instance where a nurse approached a patient with an attitude, which negatively affected the patient's willingness to be involved in their care. Participants emphasised the importance of respectful and effective communication between healthcare professionals and patients. Other participants stressed the need for training healthcare professionals to convey information in a way that makes patients feel comfortable and assured. They suggested that professionals should be open to questions from patients and provide clear explanations to address their concerns.

The challenge of resource availability was also discussed. One participant highlighted the importance of having the necessary equipment and resources for healthcare professionals to provide adequate care.

The lack of certain medications and supplies in healthcare facilities was mentioned. This often led to patients relying on personal connections to acquire necessary items.

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❖ PATIENT ADVOCACY AND ITS ROLE IN IMPROVING PATIENT-CENTRED CARE

PATIENTS’ FOCUS GROUP 1 Definition and General Views of Patient Advocacy

Respondents' views on patient advocacy vary within the group. Some participants acknowledged instances where healthcare professionals have acted as patient advocates, going above and beyond to ensure the best level of care. They highlighted the importance of doctors and nurses advocating for patients and assisting them in managing their health. However, they also noted cases where healthcare professionals have been dismissive or failed to provide adequate support.

One participant shared her personal experience of having a doctor who closed her office and went to the hospital to advocate for her, ensuring she received timely care. On the other hand, other participants mentioned the need for a collective voice, as individual complaints may not receive sufficient attention.

The participants express the desire for more healthcare professionals to actively engage in patient advocacy and support patients in navigating the healthcare system effectively.

Benefits of Patient Advocacy

Several participants noted the crucial role of patient advocates in bridging the communication gap between healthcare professionals and patients. It was highlighted that advocates can help patients make better-informed decisions and ensure their needs are understood and addressed. Patient advocates act as intermediaries, facilitating effective collaboration between doctors and patients. They also assist patients in comprehending medical information and translating it into actionable steps for self-care.

One participant claimed that patient advocacy can lead to early identification of shared symptoms or issues among patients, prompting further investigation and potentially improving overall healthcare quality. With advocates actively engaging with patients, healthcare professionals gain valuable knowledge about patients' experiences and can better address their immediate needs. This insight can also inform healthcare policies and practices, contributing to the development of more patient-centred approaches.

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How to Improve Patient Advocacy and Patient-Centred Care

This discussion revolves around recommendations for improving patient advocacy and patient-centred care in Barbados. Participants shared their perspectives on what patients, healthcare professionals, and the healthcare system as a whole can do to enhance patient advocacy.

Regarding patient involvement, the participants emphasised the importance of asking questions, seeking second opinions, and acquiring knowledge to empower themselves in managing their health. They highlighted the need for patients to take an active role in their care and communicate effectively with healthcare professionals.

In terms of healthcare professionals, the participants recommended that they listen attentively to patients, ask questions, and conduct thorough research to provide accurate diagnoses and treatment.

They stressed the importance of healthcare professionals conveying information clearly, avoiding dismissiveness, and adopting a holistic approach to care.

At the systemic level, the participants suggested that policy changes and improved access to healthcare services can enhance patient advocacy. They also proposed creating more forums for patients to voice their experiences and for healthcare professionals to learn from.

PATIENTS’ FOCUS GROUP 2 Definition and General Views of Patient Advocacy

The participants in Focus Group 2 shared a common view that healthcare practitioners and their institutions should serve as patient advocates. They believe that healthcare professionals should empower and enable patients to fully participate in their own care. However, when discussing whether this view is practised by healthcare practitioners in Barbados, the participants expressed mixed opinions.

One participant highlighted the absence of healthcare professionals, such as doctors and nurses, as members of the Barbados Kidney Association, which indicates a lack of active involvement in patient advocacy. Some, however, acknowledged the workload and challenges faced by healthcare professionals,

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particularly in the dialysis community, where nurses often work long hours. However, there was a general sentiment that healthcare professionals should be more involved in-patient advocacy.

Benefits of Patient Advocacy

The participants in the focus group discussed the key benefits that patient advocacy can bring to patients, healthcare professionals, and the healthcare system in Barbados. They emphasised that patient advocates can serve as a bridge between patients and the healthcare system, addressing any problems patients may encounter and ensuring effective communication between patients and healthcare providers.

Patient advocacy is seen as a means to improve the patient experience by providing answers, hands-on support, and better communication with healthcare professionals. Advocates can convey patients' preferences, cultural considerations, and medical concerns, thereby making patients more comfortable and facilitating a team-based approach to care.

The participants also noted that patient advocacy allows healthcare professionals to obtain more accurate and timely information about patients, leading to better outcomes. By actively engaging with patient advocates, healthcare professionals can enhance the quality of care they provide, resulting in higher patient satisfaction and a sense of fulfilment for the healthcare practitioners.

How to Improve Patient Advocacy and Patient-Centred Care

The participants provided key suggestions on how to enhance patient advocacy and patient-centred care in Barbados. They emphasised the need for a holistic approach that addresses the body, mind, and spirit of patients. They suggested revisiting healthcare policies to prioritise the patient's interests and involving patients in the decision-making process through town hall meetings or other platforms where they can share their views and experiences.

The participants also emphasised the importance of public education and awareness campaigns, particularly using social media, to promote patient advocacy and empower patients to take an active role in their care. They recommended that healthcare professionals receive ongoing education and training in patient advocacy as part of their continuing professional development. This would enable them to better educate the public about their areas of expertise and foster a culture of patient-centred care.

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PATIENTS’ FOCUS GROUP 3 Definition and General Views of Patient Advocacy

In the third focus group discussion, the participants shared their perspectives on patient advocacy and its role in empowering and enabling patients to take better control of their health. One participant expressed that healthcare professionals and institutions should serve as patient advocates. They highlighted the importance of patients receiving guidance and education on self-care, nutrition, and overall well-being.

The concept of patient advocacy was also linked to clinics that aim to educate patients about their health and healthcare options.

Other participants emphasised the significance of patient advocates in personal health management. They shared their experience of having someone they could call to discuss symptoms, medications, and health concerns. This support helped them feel more in control of their health and enabled them to make informed decisions. The participant mentioned the importance of writing down information about medications and their effects to ensure proper understanding and communication with healthcare professionals.

Benefits of Patient Advocacy

The focus group participants discussed various benefits of patient advocacy. One participant highlighted the importance of patient advocacy in improving health outcomes. They shared how their healthcare provider ensured regular blood work and called to check on them, which helped with monitoring their health and identifying any necessary interventions. This proactive approach to care led to better health management and improved overall well-being.

The participants also emphasised the significance of building strong relationships between patients and healthcare providers through patient advocacy. They expressed gratitude for the healthcare professionals who took the time to establish a personal connection and show empathy. These positive relationships not only enhanced patient satisfaction but also contributed to better healthcare experiences.

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How to Improve Patient Advocacy and Patient-Centred Care

When discussing how patient advocacy and patient-centred care can be improved, the focus group participants suggested several strategies. They stressed the need for comprehensive training and education for healthcare professionals and staff, both in hospitals and clinics. This training should focus on enhancing communication skills, empathy, and patient-centred approaches to care. They also recommended creating a feedback system where patients can report their experiences and concerns, which can then be used to make necessary adjustments and improvements in the healthcare system.

The participants emphasised the importance of public education and awareness about patient advocacy.

They suggested providing reliable sources of information to patients, such as reputable online platforms or printed materials, to help them make informed decisions about their health. Additionally, they highlighted the need for healthcare systems and organisations to actively disseminate information through various channels, including radio and television, to reach a broader audience.

Overall, the focus group participants recognized the value of patient advocacy in empowering patients and improving healthcare experiences. They emphasised the role of healthcare professionals, healthcare systems, and patients themselves in driving patient-centred care and called for increased education, communication, and support to foster a patient-centred approach throughout the healthcare system.

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❖ KEY SUMMARY POINTS AND TAKEAWAYS FROM PATIENT FOCUS GROUPS

VIEWS ON PATIENT-CENTRED CARE Patient-centred care was understood in a variety of ways that were both personal and subjective to different groups of patients and their experiences: ●

Empowerment and engagement: Patients value active involvement in their care decisions and having their preferences respected.

●

Holistic care and support: Patients seek care that addresses their physical, emotional, and social well-being.

●

Continuity and personalisation: Patients desire long-term relationships with healthcare providers and personalised care plans.

●

Collaboration and partnership: Patients emphasise the importance of collaborative partnerships with healthcare providers.

●

Information sharing and transparency: Patients value clear and timely communication about their condition, treatment options, and care plan.

●

Emotional support and understanding: Patients appreciate empathy, emotional support, and acknowledgment of their emotional well-being.

●

Effective communication and active listening: Patients emphasise the need for healthcare providers to actively listen and communicate clearly.

●

Respect for autonomy: Patients value healthcare providers who respect their autonomy and involve them in decision-making.

●

Trust and continuity of care: Patients prioritise trust in their relationships with healthcare providers and seek continuity in their care.

PATIENT-CENTRED CARE EXPERIENCES The following summary includes a thorough mix of patient care experiences in Barbados, both negative and positive in nature:

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●

Positive experiences were characterised by active involvement in care decisions, personalised attention, effective communication, and collaboration.

●

Patients felt empowered, supported, and valued, contributing to improved recovery and overall well-being.

●

Factors promoting patient-centred care included effective communication, timely access to care, empathy, and mutual respect.

●

Negative experiences stemmed from poor communication, lack of empathy, dismissive attitudes, and inadequate attention to physical and emotional needs.

●

Patients felt overlooked, disregarded, and unsupported, leading to anxiety and emotional turmoil.

●

Factors inhibiting patient-centred care included financial constraints, lack of attention to detail, and dismissive attitudes from healthcare providers.

●

Addressing inhibiting factors and building upon promoting factors can enhance patientcentred care.

●

Efforts should focus on effective communication, timely and accessible care, cultivating empathy among healthcare providers, and addressing resource constraints.

●

Enhancing patient-centred care will improve patient experiences, healthcare outcomes, and overall satisfaction.

PATIENT ADVOCACY AND ITS RELATIONSHIP TO PATIENT-CENTRED CARE The following provides a summary of key points across focus groups regarding patient advocacy, patientcentred care and the relationship between each of them: ●

Participants agreed that healthcare professionals and institutions should serve as patient advocates.

●

Patient advocacy involves empowering and enabling patients to take control of their health and healthcare decisions, as well as provide guidance, education, and support for patients in managing their health.

●

Patient advocacy improves health outcomes by facilitating better communication, understanding, and collaboration between patients and healthcare professionals.

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●

Patient advocates help patients navigate the healthcare system, ensure their needs are met, and improve overall patient satisfaction.

●

Patient advocacy leads to proactive and personalised care, resulting in better health management and improved well-being.

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❖ KEY RECOMMENDATIONS FOR ENHANCING PATIENT ADVOCACY AND PATIENT-CENTRED CARE The following provides a summary of key recommendations for improving patient-centred care and patient advocacy within the Barbadian context: ●

Comprehensive training and education for healthcare professionals are needed to enhance communication skills, empathy, and patient-centred approaches to care.

●

Creating a feedback system allows patients to report their experiences and concerns, facilitating continuous improvements in patient advocacy and care.

●

Public education and awareness campaigns are crucial to inform patients about their rights, resources, and the importance of being proactive in their care.

●

Reliable sources of information should be provided to patients to support informed decisionmaking.

●

Healthcare systems and organisations should actively disseminate information through various channels to reach a wider audience and promote patient advocacy.

●

Policy changes and improved access to healthcare services can enhance patient advocacy and patient-centred care.

●

Client relations training for healthcare professionals is needed to improve communication, empathy, and patient engagement.

●

Adoption of ISO standards in the healthcare system can enhance the quality of care and accountability.

●

Family conversations about generational health issues can prepare individuals to be proactive in managing their health.

●

Doctors should encourage patient involvement in decision-making, provide thorough explanations, and ensure patients understand their treatment options.

●

Involvement of pharmacists and other supporting practitioners can support patient-centred care by creating a wider and active health-based ecosystem for patients.

●

Integrated information systems can improve communication and coordination among healthcare professionals.

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FIGURE 1: FOCUS GROUP KEY FINDINGS

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SECTION 2

HEALTHCARE PROFESSIONALS ❖ GENERAL DEFINITIONS AND EXPERIENCE OF PATIENT-CENTRED CARE While there were many contrasting ways of describing what patient-centred care means, most participating healthcare professionals held similar ideas to the definition. According to these views, patient-centred care is when health-care objectives are carried out that are specific to the individual patient. This means that the health-care professional considers the patient’s social/economic background, perspective, concerns, and expectations. It was commonly described as treating the patient as a whole and not just the disease by using evidence-based medicine to support the patient and their family.

Accordingly, it was emphasised that it is the responsibility of the care team involved with the patient to stay up to date on technology and education in order to provide adequate care. Thus, maintaining updated information will allow the healthcare professional to use his/her knowledge to help the patient understand the care that is being provided to them and identify knowledge gaps where patient education is needed.

In appointing contributing factors to

patient-centred

participants

listed

care, comfort,

transparency, respect, dialogue, discussion, open mindedness, rapport building, psychological well-being, finance, empathy, and adequate communication.

Utilising these factors in taking care of a patient will accentuate the fact that the patient is an DR. CINDY FLOWERS SHARES HCP PERSPECTIVE

individual who is part of a

community, a household, and a country; ultimately resulting in patient satisfaction.

Participants believed that patient-centred care is not practiced throughout the entirety of the healthcare system in Barbados. According to a participant, most of the system in Barbados is a medical system that

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is focused on the doctor, not necessarily the patient. This is in terms of seeing the doctor as all knowledgeable and the person that would be making all of the decisions.

❖ INHIBITING AND FACILITATING FACTORS FOR HIGH-QUALITY PATIENT-CENTRED CARE Participating healthcare professionals emphasised an aspiration to always deliver high-quality patientcentred care. In doing so, they described factors that both enable them to do so and that obstruct their abilities. Facilitating factors included mutual respect, collaboration, and epidemiology studies. Inhibiting factors included time, lack of experience, limited resources, lack of support for HCPs, poverty, and improvidence.

Key facilitators include: ●

Mutual respect and understanding between the patient and the professional: Respect from the healthcare professional can be seen as taking time to listen to the patient's concerns. This will allow the patient to feel safe in communicating their wants and needs. The health care professional should also respect the patient’s right to know more information about their medications and illnesses. Respect from the patient includes having some level of interest and/or understanding in their own care and being willing to learn more.

●

Collaboration between healthcare professionals: It was suggested by many participants that the patient’s care should be adeptly transferred between different professionals. This would include the patient being able to see different doctors while not having to “start over” every time they see a new healthcare professional. Having experienced professionals that collaborate between departments and providers was suggested to be the best way in which the patient will feel cared for by the entire system.

●

Epidemiology studies: One participant highlighted that knowing the needs of patients as a whole is a facilitating factor. Studies that would be completed focusing on common diseases will allow an environment to be created that can support many patients at once.

Key inhibitors include: ●

Time: Most participants described time as a profound inhibiting factor for high-quality patientcentred care. This includes patients having to wait too long to be seen by a professional, receive Page | 40

treatment, and get testing completed with results. Healthcare professionals attribute this to a high demand of patients with a low supply of professionals. Consequently, the patient is not able to receive high-quality patient-centred care because the professional cannot adequately allocate sufficient time to provide facilitating factors as previously mentioned, that would fulfil the definitions of patient-centred care. In addition, there is a gap between tertiary and primary care attributed to a lack of time for the patient in tertiary care as noted by a participant. ●

Lack of experience: Some participants indicated that the lack of experience among colleagues is a key inhibitor. As a professional working in this industry, many believe that it is important to constantly practice patient-centred care in order to improve over time. One healthcare provider described it as being blinded by education/knowledge and not knowing how to practice patientcentred care inadvertently puts pressure on the patient. It is said that a professional can only fully engage with a patient if they are connecting with them on a personable level.

●

Limited Resources: Many participants expanded on how there are limited medication. This is strongly apparent in the public sector. In addition, there is also limited staffing which creates a gap in patient centred care. Furthermore, there are also limited resources for training the staff.

Correspondingly, it is believed that many staff persons are not trained properly on how to care for patients. This includes not knowing how to speak to a patient and communicate to colleagues’ important information that will ultimately impact the hospital’s rapport and the well-being of the patient.

●

Lack of support for healthcare professionals: While most participants expressed their desire to provide adequate care all the time, it was emphasized that professionals are not receiving the support needed. One participant exclaimed that if the professionals feel cared for, they will feel better working for the patient. Another participant described that there should be better mental and psychological support for the staff to cope with many patient cases and stressors that are taken up every single day. Desensitization is commonly used as a coping mechanism resulting in lack of empathy.

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●

Poverty: A single healthcare professional expanded on how poverty is burdensome to the healthcare system creating a one where there is a high volume of patients due to diseases acquired in such conditions. Through patient communication, they believed that persons born into poverty should be influenced that the way out of poverty and into opportunities is through education.

●

Improvident health care system: One participant described how the lack of preparation left the healthcare system scrambling for solutions during two prominent situations. One was during the COVID clinic cutback and the other was a cyber-attack resulting in the electronic system being shut down. It was suggested that to be proactive, the healthcare system should have a paper and electronic system.

❖ ROLE AND BENEFITS OF PATIENT ADVOCACY Participants shared their perspectives on the role and benefits of patient advocacy. Some participants believed that patient advocacy has been mainly practiced by the families of the patients in the Barbados health system, not necessarily by the healthcare professionals. Others believed that patient advocacy is the responsibility of the healthcare professional because they must educate the patient. This would be mainly through primary care because almost all patients come through primary care before going to the hospital to receive information on their illness. In consideration of that, patient advocacy is only practiced by professionals who have enough experience and who can utilize limited time. Thus, it is believed that patient advocacy is not practiced as much in secondary and tertiary care due to this constraint.

Following this concept of a limitation on HCPs to practice patient advocacy, another participant explained how the advocate should be an outside person who is not subjectively involved in the patient-practitioner relationship and instead be someone who is well trained. Some examples of these persons described are dietitians and NGOs because of the training and experience which they have. There was a single participant who believed that patient advocacy is practiced by other entities instead of practitioners because a lot of doctors see it as giving their power away to the patient; exclaiming that patient advocates and laws to protect the patient will change the overuse of power by the doctor. Conversely, a different

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participant believed that patient advocacy is practiced for the most part in Barbados because patients are given options as to what can be done, however, many times the patients tell the doctors to make the decision for them as to what they believe is best.

Although

participating

healthcare

providers have many different views on

if

patient

advocacy

is

predominantly practiced throughout the healthcare system in Barbados, they share similar views that patient advocacy

can

facilitate

positive

experiences of patient-centred care for all patients. This is achieved

MR. TONY H ARRIS, DIRECTOR OF MEDICAL SERVICES AT QUEEN ELIZABETH HOSPITAL, REVIEWS RECOMMENDATIONS.

through improving the patient’s health management, informing the patient of how to keep track of their illness, and empowering the patient to know that they have the right to ask questions about their health.

According to many participants, patient advocacy acts as a buffer by enabling the patient to take care of themselves and feel supported which would overall change how they view the healthcare system in Barbados.

❖ SUGGESTED RECOMMENDATIONS FOR IMPROVING PATIENT-CENTRED CARE AND PATIENT ADVOCACY There are many perceived benefits from patient advocacy that were described by participating HCPs, however, it was concluded that patient advocacy is a goal and not something that is 100% practiced. To improve patient advocacy and patient-centred care, participants listed key constraints on achieving this.

Some challenges included were: ●

Staffing:

More staff should be hired to combat the increasing number of patients needed

to be seen. This will also allow more time to be allocated to patients so that they do not feel rushed to get their needs met. Participants suggested that more staffing will also allow for a better appointment system so that all patients are not coming at the same time. Setting better appointments will also allow the doctor to know who they are seeing and will allow them to Page | 43

approach the situation better because the doctor will know if it is a follow up or new patient.

Training healthcare providers to stay in Barbados. Working with international staff creates a language barrier between colleagues. ●

Incentives:

Participants stressed the idea that there needs to be a better “feel good” factor

for the healthcare practitioners/professionals. This could range from as simple as having a coffee station to improved pay. ●

Resources:

There is a consistent shortage of medication available to patients and this supply

should be increased. One participant suggested that there be proper resource allocation. ●

Patient Education:

A challenge in improving patient-centred care is that, culturally speaking,

the doctor is seen as knowing what is best for the patient so the older generation of patients will not necessarily research their illness to learn more. A suggestion to resolve this would be to educate physicians to centre their care around the patient and inform them of their illness so that they understand that the patient is part of the health-care team as well. Participants believed that patients should educate themselves and should receive education from their physician on how to prevent illness that they are at risk of developing. From the perspective of the entire health-care system there needs to be a “discourse on what some of the challenges are to patient advocacy”.

Patient advocacy needs to be pushed widely “across the island”. ●

Community engagement:

Physicians should share information with the wider public

concerning health issues that are common among “hundreds”. Information sharing with the public and between physicians throughout the institution will help in understanding different patient perspectives. One participant believed that there should be classes in the schools that teach health literacy basics such as healthy eating habits and knowledge of patient advocacy.

Additionally, patient-centred care should be taught at a young age so that the patients grow up and know that they have the right to ask questions. There can be educational campaigns on the radio and news media explaining the steps that will be taken for creating an advocacy system to improve their care. Awareness is critical. There should be an avenue for nurses, doctors, pharmacists, or retired health care professionals to put out information about ways that personal health can be improved/maintained.

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●

Training:

Another key challenge identified is the lack of soft skills training that nursing staff

are receiving. There must be improved training, where nurses and doctors are taught to recognize the importance of caring about the patient. To achieve high-quality patient-centred care it starts at the education of the doctor, nurse, pharmacist, etc. Healthcare professionals presently in the field can do training courses and update their skills periodically to stay current on information.

HCPs need to be trained on how to deliver healthcare that is patient centred and should be taught effective communication rather than just textbook information. The conversation with the patient should be meaningful and understanding. There needs to be a better bridge between senior and junior doctors to close the knowledge and experience gap. Proper management and training of the healthcare professionals as far as educating and implementing patient advocacy is needed. ●

National Committee Coordination and Legislation:

A National Steering Committee on

Patient-Centred Care responsible for all services in Barbados should be established. The steering committee should ensure that all health care services of Barbados are connected and are following similar patterns of work ethics. They can appoint an individual to visit clinics and hospitals to make sure that the system is running efficiently. Committee members should also consist of an IT technician who holds responsibility for verifying protection of patient information.

Legislation stating that doctors are legally required to share their private number with patients to call if any problems arise at night should be implemented. Government should also liaise with businesses on improving the quality of food provided. The financing of health care in Barbados should give patients the ability to ‘shop around’ to different hospitals and clinics giving the patient the power of choice. The system needs to allow patients the ability to file complaints without fear of repercussions. A regulatory framework which considers the role of the patient, healthcare professional and advocate should be designed. This framework would be penalty based but also allow for improvement by persons who do not follow protocol. It will be difficult for the HCPs to do something in terms of advocacy because that would be forcing them to go against their colleagues. Consequently, a whistle blower system can be developed allowing for persons to comfortably speak and identify matters which were done incorrectly. ●

Leadership:

The Caribbean, in general, lacks a robust leadership/management culture. It

starts from the university in teaching people how to manage. There needs to be smart leaders who can take a view from the whole system and put something in place to advance the whole system. Too many attempts are made to fix singular areas of the healthcare system in Barbados Page | 45

without realising that there are repercussions for other areas. Presently, decision-makers do not have an in-depth understanding of the healthcare system. People involved in managing the healthcare system need to be informed. ●

NGOs: Some HCPs think that there should be more health NGOs. Ensuring the patient is fully included as a partner in the care team starts at the one on one with the patients. The NGOs can also interview patients and submit consensus to the health care authorities to make a change.

●

Social Programmes:

There needs to be a social program for the older population which would

improve mental health. To fully incorporate the patient in the management of their care there should be an advocate who is trained to inform the patient of things. A participant suggested we create a patient advocacy program that is true to Barbadian culture and not according to international constraints. These programs should also aim to look at quality of care standards.

Patients feeling supported is just one of many key benefits believed to be expected from patient advocacy.

Expanding on expectations from patient advocacy, participants were asked to discuss those in regard to not just the patient but also for the health care practitioner, and the healthcare system in general. The following is discussed: ●

Patients:

Patient advocacy allows the patient to be on the same page as the health-care team

and will allow the patient to be more involved in treatment and prevention of acquired illnesses.

This can be achieved through improving patient health literacy. When patients are more involved, their medical visits will be focused because the patient will be able to have their specific needs met. It is believed by participants that the patient will have more confidence, be seen faster, and care/treatment outcome could also improve.

Participating HCPs think that along with these improved factors, patients will have better outcomes as they will be more likely to adhere to a treatment plan that they are well informed of. With better outcomes, patient’s mental health will improve due to beliefs of shorter disease time, fewer complications, and increased satisfaction. These benefits expected from patients’ perspective are perceived to shorten the downtime from work than would have been necessary if the patient was not informed of illness prevention. Ultimately, this results in less of a financial burden on the patients and their families. HCPs believe that patients will feel comfort in knowing

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that advocates are looking out for them in terms of having a proper avenue to protest the care that they are dissatisfied with in addition to the awareness that advocates are ensuring that protocols and standards are maintained. One participant added that patient advocacy can help the patients because it can give their condition more recognition that it needs because patients are able to use their voice. Participants believe that this will reassure patients that they are being treated fairly and that there is someone available who is invested in their well-being while they are waiting to be seen by the professional. ●

Healthcare practitioners/professionals:

Positive experiences from patient advocacy can

be used to inform the HCP on their approach in medicine to ensure that the patient is taken care of as a whole and not just based on “textbook” information. It will also provide a framework as to what tasks need to be carried out for a specific patient while sticking to protocol. This will improve patient rapport and can maintain the reputation of the doctor. When the practitioner can improve focusing on patient outcomes, there will be a sense of satisfaction knowing that a positive impact was made in their patient’s life. Along with this sense of satisfaction, participants anticipate that there will be less stress on the healthcare practitioner because they will not have to consume as much time finding information and informing the patient of the illness because the patient is now arriving informed. Patient advocacy will also allow communication to the patient of how long some treatment plans will take creating a bridge of communication between the patient and the practitioner. Participants explained that the practitioners will now have less pressure on them from the patients because the advocate is making sure that the patient is well informed of how long some protocols take. With less stress on providers, the HCPs interviewed believe that this will create a work environment that is both positive and engaging, creating an incentive. Another participant also suspects that patient advocacy benefits the doctor because the doctor will have a higher standard of care knowing more information about their patient. It would raise the bar for the level of care that the patient expects. In addition, the doctor needs to be supported with more resources and staffing to keep up with the higher level of care.

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●

Healthcare system in general: Participants believe that patient advocacy can improve patient outcome and prevention resulting in less resources being utilised by the healthcare system. This means that there is less of a burden on the taxpayers and the money saved can be returned into the healthcare system for better machines and supplies for everyone. When there are better resources, participants believe that this will reduce the anxiety that several patients have about doctor visits and improve trust. In addition, a common thought shared was that there will be less wastage by the healthcare system because more resources will be put towards preventative medicine instead of more expensive interventions. Lastly, some participants expect that advocacy would also improve waiting times. It was concluded by some HCPs that advocates can change the entire atmosphere in the hospitals by bridging communication throughout the health system in terms of speaking with the pharmacist and doctor of the same patient. Patient advocacy brings the whole healthcare system together and lets the patient know that they have rights too.

FIGURE 2: HCP KEY FINDINGS

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SECTION 3

HEALTH-BASED NGO LEADERS ❖ GENERAL DEFINITIONS AND VIEWS OF PATIENT-CENTRED CARE AND KEY BENEFITS NGO leaders primarily believe that patients are part of the process, not part of the circle, and they are the ones being served by the providers. Though they believe there are key parts of the system that contribute positively towards patient advocacy. The medical providers should be optimally trained to provide quality care to patients.

Positive Contributors:

•

Educated Advocates: These individuals facilitate the link between patients and their providers, to assist them in making informed decisions.

•

Appreciation of Time: A lack of appreciation for the patient’s time is commonly observed.

Many report that several patients are scheduled at the same time for their appointments, resulting in extreme delays and frustration. It is also observed that patients take the responsibility upon themselves to keep track of time spent and remind facilities that they are, in fact, still waiting to be seen.

•

Reduced Communication Barrier: The proper relay of information and concerns can benefit both parties and provide more efficient care. Patient-centred care greatly involves teaching the patient about their sickness and providing the proper support in order to facilitate positive outcomes and quicker recovery.

•

Reduced Anxiety: When patients feel that their environment is supportive and comfortable, they may be more receptive to their recommended care. Patients may also feel inclined to be more polite and patient with their doctor as they are receiving their care with warmth.

Negative Contributors:

•

Socioeconomic Discrepancies: Patients are not always prioritised based on their condition.

NGO leaders have seen discrepancies in the level of care and access patients receive related to their socioeconomic backgrounds.

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•

Inaccuracies between Caretakers: In many families, there are many individuals who may not be in tune with the patient. When it comes to caring for the patient, these individuals may not have the knowledge due to a lack of understanding or training. Understandably, these people are not able to be the intermediate to their family member receiving care.

❖ BELIEFS ABOUT THE ROLE OF NGOS IN PATIENT-CENTRED CARE NGOs hold a unique role within the healthcare system and community. One which must continuously uphold a balance between policy, advocacy, and education. The role of health-based NGOs in patientcentred care has been addressed in several ways:

•

Help Desks: The need for assisting patients in their care physically, was approached by the NGO. However, there is a recognized need for more deeper level of service that would more greatly benefit patient outcomes.

•

Early Evaluation Programmes: the promotion and execution of community initiatives have been pursued by NGOs that would encourage early testing. Projects such as those conducting early kidney testing were developed in Barbados and offered for free to the general population.

•

Multifactorial Management: when patients are faced with life-changing diagnoses, they may not have the emotional support or tools to integrate managing their illness with their preexisting life. Healthcare providers can recommend patients to psychiatric services or mental health professionals that could be available in the public sector.

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❖ ROLE AND BENEFITS OF PATIENT ADVOCACY

The current belief is that patient advocacy is not being practised by all

medical

practitioners

consistently in Barbados. It is felt that providers are disinterested in the dialogue between them and their patients. Doctors are the individuals that are trained in medicine and may hold the belief NGO LEADERS CONTRIBUTE TO DISCUSSION ON PATIENT ADVOCACY

that they know what information is important to the patient’s

condition/diagnosis. It is a misconception that is asking one’s provider to hear one out is on account of the patient’s distrust in their expertise as a physician - instead, it is felt that by not hearing the patient out, there is a substantial barrier in communication. There are distinctions noted based on the age of the provider. Communication styles seem to greatly differ between those who are younger practitioners and those older.

This also extends to a negative effect, where NGO leaders have seen patients of younger physicians to be treated more in a business-like fashion and charged for every service provided. This contrasts with “previous ways” where patients were not consistently charged for minor services (e.g., bandage change).

A certain perception has been developing in the community that newer doctors tend to be labelled as “money grabbers” and are solely focused on their income as a doctor. This observed behaviour of some providers locally has led to many individuals to become distrustful of physicians and their intentions.

There is a call to action for improvement in communication that would result in an overall improvement in care. As there would be a more effective exchange of information during visits, the overall flow of the appointment would improve.

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❖ SUGGESTED RECOMMENDATIONS FOR IMPROVING PATIENT-CENTRED CARE AND PATIENT ADVOCACY To achieve a high level of patient advocacy, the following recommendations are offered: ●

Patient advocates should be the bridge between the patient and provider. These individuals should not necessarily be a healthcare professional however, they should be appropriately trained in effective communication and the relaying of medical information.

●

Regardless of age, colour, social status, all patients who present at any health institution should be treated with the same level of care and respect. Community clinics may be the biggest issue here - where many individuals spend entire days waiting to be seen by a physician. When the patient is prioritised, it pays the proper respect to their time and sacrifice that they made in their schedule to get the necessary care.

●

The wider healthcare system would achieve greater results by disseminating public health information to the general population about speaking up. This would aid in reassuring patients that their information is confidential, and their cooperation is essential to their care.

●

The system overall would also benefit from implementing a Continued Professional Education programme for medical professionals to continue to expand their medical knowledge and proficiencies. Not only would this focus on clinical skills, new research/literature, but would include workshops on patient advocacy and treatment. This would increase cohesion across the healthcare system (pharmacists to nurses to doctors) that would decrease anxieties amongst the patient population and thus benefit them emotionally. This initiative could be adopted into required professional qualifications and also involve a point tracking system that would symbolise the accomplishments made towards medical education.

●

Health-based NGOs can do their part by holding information sessions that would facilitate conversation. These sessions would heighten awareness of many factors that go into overall health. Factors such as healthy diet, routine exercise, and the importance of annual check-ups.

Overall, these organisations can aid the community in understanding preventative techniques in their care.

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FIGURE 3: NGO KEY FINDINGS

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KEY SUMMARY CONCLUSIONS The key summary conclusions are divided according to patients, healthcare professionals and NGO stakeholders based on the findings.

Patients: Summary Perspectives and Conclusions: ●

Patients view patient-centred care as involving empowerment, engagement, holistic care, continuity,

personalisation,

collaboration,

transparency,

emotional

support,

effective

communication, respect for autonomy, and trust. ●

Positive experiences of patient-centred care involve active involvement in care decisions, personalized attention, effective communication, and collaboration.

Within the current Barbadian healthcare system, patients have highlighted several negative experiences and instances of poor treatment, primarily within the Queen Elizabeth Hospital (QEH), including instances of poor communication, a lack of empathy, dismissive attitudes, and inadequate attention to physical and emotional needs. In some instances, such negative treatment resulted in increased stress, a need for further treatment, and the deaths of loved ones.

●

Patients believed that several factors were inhibiting the level of patient-centred care that they received within Barbadian healthcare institutions, primarily at the QEH. These factors included financial constraints, lack of attention to detail, and dismissive attitudes from healthcare providers.

●

Patients agreed that healthcare professionals and institutions should serve as patient advocates, empowering and enabling patients to take control of their health and healthcare decisions. Most patients also agreed that the current patient advocates within the QEH were not functioning in this capacity.

●

Patients believe that patient advocacy leads to proactive and personalized care, improved health management, and increased overall patient well-being, and they want to see this being practiced more within the Barbadian healthcare system.

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Healthcare Professionals/Providers: Summary Perspectives and Conclusions ●

Healthcare professionals understand patient-centred care as treating the patient as a whole, where social and economic background, perspective, and needs are given consideration in the care process. It involves using evidence-based medicine to support patients and their families.

●

Factors contributing to patient-centred care include comfort, transparency, respect, openmindedness, rapport building, psychological well-being, financial resources, empathy, and effective communication.

●

There is a belief that patient-centred care is not fully practised in the Barbados healthcare system, which is perceived to be more doctor-focused.

●

Facilitators of high-quality patient-centred care include mutual respect between the patient and professional, collaboration between healthcare professionals, and epidemiology studies.

●

Key inhibitors to patient-centred care include time constraints, lack of experience, limited resources, lack of support for healthcare professionals, poverty, and an inadequately prepared healthcare system.

●

Patient advocacy is seen as crucial to enhancing patient-centred care. Some believe it should be practiced by an outside person who is not subjectively involved in the patient-practitioner relationship.

Health-based NGOs: Summary Perspectives and Conclusions ●

NGO leaders view patient-centred care as a process where patients are the primary focus and served by healthcare providers. They emphasise that effective patient advocacy is a crucial part of the health system.

●

Improved communication is identified as a key area for enhancing overall patient care.

●

They note socioeconomic discrepancies in patient care and inconsistencies in care between different healthcare providers.

●

Age-based distinctions exist in communication styles among healthcare providers. Younger practitioners are often perceived as more business-like, focusing on income generation.

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●

NGOs play a role in patient-centred care by facilitating links between patients and their providers, implementing early evaluation programmes, and managing the multifactorial needs of patients.

●

Patient advocacy is not being practiced consistently in Barbados. Many medical practitioners seem disinterested in dialogue with their patients.

●

NGOs must play a stronger patient advocacy role in Barbados, on behalf of patients and the wider public, within the healthcare system in the country.

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MAIN RECOMMENDATIONS FOR ACTION The following recommendations are organised across a range of various primary stakeholders in Barbados’ healthcare sector based on the aforementioned findings and conclusions.

Main Actionable Recommendations for Patients Proactive Learning and Health Literacy: ●

Pursue health literacy by researching their illnesses and conditions.

●

Become familiar with their health conditions and the related medical jargon from credible and legitimate sources. This self-education should be supported by experienced health professionals or health NGOs and could include research on reputable medical websites or accessing patient education materials provided by healthcare institutions or NGOs.

●

Utilise reliable sources of information provided by healthcare organisations for informed decisionmaking about their health and wellness and specific conditions.

●

Stay informed about the global, regional, and local health environments and the advanced best practices to be a proactive patient in the system.

Active Engagement and Communication: ●

Participate actively in their care management and decision-making processes.

●

Voice their experiences and concerns to healthcare providers and use feedback systems to facilitate improvements in patient advocacy and care.

●

Patients should be encouraged to be empowered to ask questions, express concerns, and clarify misunderstandings with their healthcare providers. Effective communication is critical to understanding their treatment plans and making informed decisions for their care.

●

Patients should be supported in creating platforms for sharing experiences, learning from each other, and advocating for high-quality patient-centred care in health-based system.

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Asserting Patient Rights: ●

Proactively seek information about their rights and resources for healthcare and wellness.

●

Assert their rights to protest the care that they are dissatisfied with and ensure that protocols and standards are maintained.

●

Patients should be aware of their rights in a healthcare setting and feel comfortable asserting these rights. This could involve voicing concerns about the quality of care, asking for a second opinion, or requesting more detailed explanations about treatment options.

●

Patients should recognise that they have responsibilities (tied to their rights) for ensuring they respect institutional standards, protocols and practices in the delivery of care in the healthcare system.

Preventative Health and Wellness Promotion: ●

Engage in preventative health measures, such as adopting healthier eating habits and routine exercise.

●

Participate in family conversations about generational health issues to prepare for proactive health management.

Main Actionable Recommendations for Healthcare Professionals/Providers Skills Development and Continued Education: ●

Engage in comprehensive training to enhance communication skills, empathy, and patientcentred approaches to care as well as encourage training instructors and lecturers to model these behaviours for students (especially ingrained within all student learning/pedagogical phases in medical schools and pre-clinical training programmes).

●

Participate in Continued Professional Education (CPE) programmes to enhance medical knowledge and proficiencies, but that are inclusive of patient advocacy and patient-centred care practices.

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●

Regularly update their skills to stay abreast of the latest information and techniques in patientcentred care.

●

Bridge the knowledge and experience gap between senior and junior doctors for a more unified approach to patient care.

Patient Engagement and Communication: ●

Actively disseminate information about patient advocacy and the importance of patient involvement.

●

Provide timely information and communication regarding experienced delays in treatment and delivery of care to their patients.

●

Encourage patient involvement in treatment decisions and ensure patients understand their options.

●

Foster environments that respect patients’ time and individual needs.

●

Encourage equity protocols that ensure that all patients receive the same level of care.

System Management and Improvement: ●

Adopt a management culture and improve leadership skills to effectively coordinate patient care.

●

Develop better appointment systems to prevent patient overcrowding and improve time management (especially in private care settings).

●

Recognise the importance of seeing the patient as a whole, beyond just the medical condition or illness.

Main Actionable Recommendations for Health-based NGOs Health Awareness and Advocacy: ●

Facilitate awareness campaigns about patient rights, resources, and the importance of proactive care.

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●

Implement initiatives to raise public awareness about health issues/conditions (e.g., NCDs) prevalent in many Barbadians.

●

Advocate for improved resource allocation in healthcare to ensure a steady supply of medications and other necessities.

Education and Community Engagement: ●

Organise informational and educational sessions to enhance community understanding of health issues and preventative care techniques.

Collaboration and Partnerships: ●

Collaborate strategically with other stakeholders, such as healthcare providers and other NGOs, to create a wider health-based ecosystem.

●

Allow NGOs to holistically build and sustain relationships with patients and healthcare providers to support patients from start till end of care.

●

Collaborate with healthcare facilities to facilitate patients' access to key resources for the management and involvement in their own health care.

Improving Communication: ●

Work on reducing language barriers in the healthcare setting to enhance communication among patients and their healthcare professionals.

●

Acts as key health-based informational conduits and advocacy mechanisms between patients and their healthcare providers.

Main Actionable Recommendations for the Government Policy Amendments and Regulatory Frameworks: ●

Create and/or amend healthcare policies (both national and institutional) to better recognise and enhance patient advocacy and patient-centred care.

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●

Implement a regulatory framework that considers the role of the patient, healthcare professional, and advocate.

●

Create legislation that protects patients' rights, data protection, privacy and confidentiality as well as promotes standards of care.

Improving Quality of Care and Accountability: ●

Encourage the adoption of internationally recognised patient-centred standards (with clear definitions, metrics/KPIs, and evaluation functions) across public and private healthcare systems to enhance the quality of care and accountability.

●

Establish and empower a National Taskforce on Patient Advocacy and Patient-Centred Care to ensure cohesion in the healthcare system across all services.

●

Integrate the network of information on patient care and their medical profiles across all public and private healthcare entities in the country.

Investing in Technology and Infrastructure: ●

Invest in technological infrastructure and resources for healthcare to better integrate and safeguard patient information and improve service delivery across the health system.

Health Communication and Public Awareness: ●

Implement a robust feedback system for patients to voice their experiences and concerns.

●

Invest in public health information dissemination to the general population about patient advocacy and the importance of speaking up.

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Main Actionable Recommendations for the Healthcare System High Patient-Centred Care Environments ●

Develop and implement clear patient advocacy standards and service charters (and Patient Charter of Rights) outlining key service standards and expected behaviours that guide high-quality patient centred care across all healthcare institutions.

●

Design and empower quality management teams (and quality managers) in healthcare institutions to contribute to designing, executing and monitoring patient-centred care practices and behaviours and enforce compliance with institutional patient-centred charters and standards.

●

Foster a healthcare environment that not only allows but actively encourages patients to participate in decisions related to their treatment plans. This can be accomplished by providing opportunities for patients to express their preferences, asking for their input in decision-making processes, and respecting their choices.

●

Implement patient-centred decision aid tools in the healthcare system to assist patients in making informed choices about their health care. These tools can provide evidence-based information about treatment options, benefits, and risks, allowing patients to better understand their condition and the possible courses of action. They can be particularly beneficial when patients are dealing with complex medical decisions, fostering a sense of control and active participation in their care.

●

HR management or related personnel officers in healthcare institutions need to design and/or execute appropriate training programmes that incorporate elements of patient-centred care and patient advocacy across healthcare staff teams that regularly interface with patients.

Patient Advocacy and Communication: ●

Develop and implement a standardised communication protocol that encourages healthcare professionals to effectively explain medical conditions, treatment options, processes and patient rights. This would involve using clear and simple language, addressing any patient questions or concerns, and confirming patient understanding.

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●

Create or enhance existing platforms where reliable and easy-to-understand healthcare information can be accessed by patients. These platforms can include user-friendly websites, mobile apps, and informative brochures available in healthcare facilities.

Patient Feedback and Complaints/Issues Management: ●

Develop a comprehensive and accessible patient feedback system to capture patient experiences and areas of concern.

●

Ensure there is a clear, anonymous, and non-retaliatory process for patients to file issues and other forms of feedback.

●

Consider the establishment of an independent whistleblowing system that allow patients and other members to anonymously report various forms of wrongdoing experienced in the health system.

Public Health Promotion and Education: ●

Partner with community- organisations, media, and educational institutions to conduct public health promotion and education campaigns.

●

Encourage facilities to create spaces for family conversations about generational health issues.

Employee Satisfaction and Morale Boost: ●

Implement employee satisfaction initiatives such as better pay, rewards, recognition, or 'feelgood' facilities (e.g., recreational facilities).

●

Regularly conduct employee satisfaction surveys to understand the challenges faced by healthcare professionals and address them proactively.

Interdisciplinary Approach to Care: ●

Foster a culture of interdisciplinary cooperation where healthcare professionals from diverse fields work in unison for comprehensive patient care.

●

Encourage the inclusion of pharmacists and other supporting practitioners in the patient care process.

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●

Actively include and strengthen the roles and relationships of church officers and spiritual leaders (e.g., Chaplains, Pastors) intimately into the patient care team structure, connecting them with healthcare professionals and patients in the support of care.

Patient-Staff Ratios and Workload Management: ●

Implement strategies to address high patient-staff ratios, such as hiring more healthcare professionals or leveraging technology for non-critical tasks.

●

Develop effective workload management strategies to ensure equitable distribution of tasks among healthcare professionals.

Resource Allocation and Equipment: ●

Prioritise budget allocation for essential resources and medical equipment.

●

Encourage donations or sponsorships from private sector or overseas entities for necessary medical equipment.

●

Foster a supportive work environment where burnout is acknowledged and actively addressed.

Empathy in Emergency Care Situations: ●

Establish a mandatory training program focused on empathy, especially for professionals working in urgent or emergency care situations.

●

Develop guidelines that promote empathetic listening and patient-centred communication in emergency care scenarios.

Service Efficiency and Waiting Times: ●

Invest in efficient management systems to reduce waiting times, for instance, by improving appointment systems and streamlining administrative processes.

●

Review and revise service workflows to optimise operational efficiency, which in turn can reduce waiting times.

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REFLECTION AND FUTURE DIRECTIONS Patient-centred care and advocacy are foundational values that are fundamental to a modern-day health system. Previous literature has provided recommendations on promoting patient advocacy, and the Hope Foundation was able to follow through with this project. Being the first of its kind from the Caribbean, this qualitative study explored three major stakeholders: patients, NGOs and HCPs, and was able to extract concerns and provide recommendations on various levels.

This study has shown that patient-centred care and patient advocacy are intrinsically linked and require the right balance to improve the empathy and engagement of healthcare professionals, while helping patients to demystify the healthcare system and take more responsibility for their care.

Hope Foundation is advancing the suggestion that special attention be given to an approach to patient advocacy that would empower patients while ensuring that the autonomy of healthcare professionals is not compromised in making the best clinical decisions. Such sensitivity will promote the right balance so that healthcare delivery can be as seamless as possible with the sole interest to improve the quality of patient care not only for the constituents of Hope Foundation but significantly impact healthcare delivery at a national level.

The guiding approach in this study was built on creating a discussion which allowed patients to realise the role they played in the delivery of their care, as well as their potential for advocacy through discussing issues with others in similar predicaments. As opposed to reports evaluating healthcare systems as a whole, the Hope Foundation was more concerned with the patient experience and what is seen or felt inand-out of a clinical setting.

Unlike other international health systems, Barbados has heavily relied on health-based NGOs as a source for not just support and community, but also the main medium of patient advocacy. With the growth of such organizations, it has become easier to push health initiatives and further impact health policy as they have garnered much respect and credibility. Over time, healthcare NGOs have become a pillar of the community and serve as a voice to the greater system that patients typically would not hold access to. As a result, NGOs such as Hope Foundation have entered the policy arena; as such, we created a set of recommendations to address the issues which were identified in the interviews with the different

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stakeholders. It is our desire that such recommendations are taken into consideration when creating changes to healthcare policy which will benefit the nation.

The ultimate goal is for individual patients to become advocates for themselves within a system which fosters relationships between different types of providers, as well as between providers and patients.

When the individual patient is empowered with advocacy, NGOs have the freedom to implement population-wide programs and work with policymakers to make a system which delivers high quality patient-centred care.

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APPENDICES

PATIENT ADVOCACY PROJECT PHOTO GALLERY

SHELLEY WEIR, PRESIDENT OF HOPE FOUNDATION, WELCOMES STAKEHOLDERS AND REQUESTS RESPONSES TO PATIENT ADVOCACY RECOMMENDATIONS

PERMANENT SECRETARY COMMITS TO A PROGRAMME FOR PATIENT ADVOCACY Page | 71

COMMISSIONER OF FINANCE FOR HEALTH DISCUSSES OPPORTUNITIES AND CHALLENGES OF HEALTH PROGRAMMES

DR. ROCHELLE HAYNES DESCRIBES RESEARCH METHODOLOGY AND ETHICAL CONSIDERATIONS

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MEDICAL STUDENT VENKATACHALAM DELIVERS THE FINDINGS OF THE STUDY

PROF. DWAYNE DEVONISH DIRECTS DISCUSSION ON GLOBAL RECOMMENDATIONS

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DEDICATED HOPE VOLUNTEERS HELP PREPARE BREAKFAST AND THE VENUE FOR THE SEMINAR ALONG WITH THE RESEARCH TEAM.

(SPECIAL THANKS TO DONNA, EVERETT, PAULA, HAZEL AND BAJE!)

STUDENTS FROM ROSS UNIVERSITY SCHOOL OF MEDICINE AND UNIVERSITY OF WEST INDIES COLLABORATE ON PATIENT ADVOCACY RESEARCH Page | 74

ABOUT THE RESEARCH TEAM Dwayne Devonish is a Professor of Management and Organisational Behaviour in the Department of Management Studies under the Faculty of Social Sciences at the University of the West Indies, Cave Hill Campus. Professor Devonish possesses a BSc in Psychology from the University of the West Indies (Cave Hill Campus) with First Class Honours, and MSc and PhD in Work and Organisational Psychology from the University of the Nottingham (United Kingdom) with Distinction. His main research interests include organisational behaviour and psychology, work-related stress, health and wellness, human resource management, and strategic planning. He has over 30 scholarly journal publications in the same areas above and has completed at least 100 organisational- and industry-level research projects, consultancies and technical reports covering a range of management issues including job satisfaction, employee engagement, employee performance and productivity, service quality and customer satisfaction, strategic planning and management, and workplace wellness. He was also the lead author of the National Workplace Wellness Policy for Barbados.

Shelley Weir is the President and Founder of the Hope Foundation (est. 1991), one of the leading NGO in the Caribbean which addresses Lupus and represents Sickle cell and Arthritis. Shelley is the holder of a Masters of Science degree in NGO Management from the London School of Economics, and in 2010 was awarded the Queen’s New Year’s Honour of Member of the British Empire (MBE) for outstanding service to the community. Along with her non-profit work, Shelley served as a member of the Board of the Queen Elizabeth Hospital (QEH), the first non-medical practitioner to chair the Patient Care Committee, and the first non-healthcare professional to sit on the Drug Formulary Committee. Shelley was also a member of the National Focal Group for the Global Environmental Fund (GEF) of the United Nations Development Programme (UNDP). She co-authored Lupus Essentials with Rheumatologist Dr. Cindy Flower MBBS, DM, FACP. This publication highlights crucial information on the diagnosis and management of Lupus especially in populations where a variety of resource constraints exist. It attempts to balance current assessment and treatment options with the social interventions necessitated by the hardships and realities of poverty. Shelley continues to advocate for patients with underrepresented diseases and underserved populations.

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Rochelle Haynes is a recognised people management expert, author, consultant, and speaker, but above all things she is a good work advocate.

She founded Crowd Potential Consulting because she is passionate about making leadership and people management strategies suitable for all types of workers in the blended workforce, including part-time, and fulltime employees, and freelancers and other off-site stakeholders, no matter where or how they work. As a consultant, her work has spanned the globe, where she has delivered consulting solutions that help companies better work and support the range of full-time, independent and off-site individuals that they employ and engage. Her research and GigHR framework have been recognised by notable institutions across the globe, including CIPD, Hays Marketing Group, Banco Santander, and more recently Forbes. She has also been featured on several podcasts and in 2020 started her own podcast called Remotely Speaking Up. Rochelle is also a member of Open Assembly, Center for the Transformation of Work, and Keynote, a global directory of female thought leaders. Some of her past clients have included The Financial Times, BambooHR, Chartered Institute of Personnel Development (CIPD), Logitech, The Government of Barbados, ICAB, and The Central Bank of Barbados.

Aardhra Meenakshi Venkatachalam is a second-year medical student at Ross University School of Medicine. She has a Masters in Epidemiology and Biostatistics, with certificates in Global Health and Data Science from the University of Texas Health Science Center in Houston, TX. Before starting her medical journey, Aardhra worked as a unit manager and research coordinator in the Neurology and Neurosurgery Departments for the University of Texas Southwestern Medical Center. Aardhra has also worked with organizations such as the International Rescue Committee, Dallas County Health and Human Services, and Johnson & Johnson, and has published in prominent journals such as Nature on health disparities, statistics, acute stroke care and stroke rehabilitation. She hopes to continue clinical work, research and advocacy with a focus on community-centered health disparities.

Kimberly Wilkerson is a second-year medical student at Ross University School of Medicine. She has a Bachelor of Science in Cellular, Molecular, and Developmental Biology from the University of California, Riverside. Kimberly has published works in partnership with the USDA on enhancing specialty crop tolerance to saline irrigation waters in efforts to identify crops that would thrive in impoverished areas. In addition, she has completed many community research projects in Riverside County in partnership with the UC Riverside School of Medicine in efforts to raise awareness about important topics including postpartum depression, endometriosis, Page | 76

and suicide prevention. Kimberly hopes to one day open a clinic of her own to provide free resources to the community.

Soniya Parikh is a second-year medical student at Ross University School of Medicine. She holds a Masters in Medical Science from the University of South Florida, with an undergraduate background in Neuroscience from the University of Miami. Soniya has published works focused in stroke and thrombectomy alongside neurologists at Jackson Memorial Hospital. She aspires to someday focus her work on treatment, prevention, and education to all to overall improve care and address health disparities.

Glendon Henry has a Masters in Human Resource Management and is a Talent Associate at one of the top retail companies in Barbados. He specializes in the strategic human resources process and is responsible for talent acquisition, talent development and performance management within the retail company. Glendon is considered a team player and uses his positive attitude to encourage others to never give up on their dreams. He is motivated by his determination to be the best he can be while seeking success at the highest level within the Labour and employment field. In his free time, Glendon likes to spend time with family and friends, and loves to travel. He lives by the quote failure is only postponed success as long as courage coaches ambition the habit of persistence is the habit of victory by Herbert Kaufman.

Rebecca Cox (MPH), BSc Health Science, Health Policy. Rebecca formerly worked as a Research Assistant at the Ministry of People Empowerment and Elder Affairs. She has an MPH from the University of the West Indies Cave Hill and a BSc Health Science, Health Policy from Arizona State University. Rebecca’s master thesis explored barriers to mental health treatment amongst young adults in Barbados. Over the past three years she has gathered experience in qualitative research, interviewing and analysis. Rebecca is interested in continuing research in mental health and topics such as the social determinants of health and health systems.

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To all the participants who exhibited immense enthusiasm and clearly expressed the hope that change would come, you have given us the guidance to pursue new avenues for improvement. Thank You!!!!!

This study is supported by the Commonwealth Foundation. The Commonwealth Foundation is an intergovernmental organisation established by Heads of Government in support of the belief that the Commonwealth is as much an association of peoples as it is of governments. It is the Commonwealth agency for civil society; a unique, stand-alone organisation established by, funded by, and reporting to governments.

The results are far-reaching, and we are profoundly grateful that we were afforded the opportunity to make a difference.

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