Maggie's centre's "living with cancer"

MAGGIE’S CENTRE’S “LIVING WITH CANCER” A CASE STUDY OF HEALING SPACES HARSHEEN KAUR & HAFSA AMBREEN RESEARCH BOOK DRAFT 1 9.29.15

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ELD WORK West London

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ELD WORK Edinburgh

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ELD WORK Dundee

LABYRINTH

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IELD WORK Fife

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ELD WORK Glasgow

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ELD WORK Lanarkshire

BRIEF Architectural

BRIEF

Medical

SERVICES General

“In some cases, health care delivery directly contributes to increased suffering. Providing support while also helping patients and their families to face upcoming harsh realities is a delicate balancing act that needs to be further explored.�

DETAILS Architectural Details

NESTED SPACES

Edinburgh

LIGHT + AIRFLOW West London

occupying the wall surrouned by nature visual interaction

wooden trallice shadows like you’re in a forest

layers of filtering light layers of outdoor spaces

M

MOVEMENT Assessing Flows

West London

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Edinburgh

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Dundee

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Glasgow

Glasgow

Seeking Benefits Advice

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L

LIT SEARCH Synthesis

Program Element / Health Determinant

Research Questions

Indicators

Data Sources

What is cancer survivorship and what are the metrics for evaluation?

Rese

Litera

Unpack the Maggie 'system' into PRACTICAL KNOWLEDGE Courses and Workshops Nutrition

What is the impact of nutrition education on cancer survivorship?

Tai Chi

What is the impact of Tai Chi on cancer survivorship?

Living with Stress Workshop

What is the impact of stress management on cancer survivorship?

Meditation/Relaxation Classes

What is the impact of meditation on cancer survivorship?

Friends and Family Course

What is the impact on the family member of the person with cancer? Does how they feel/react impact the healing of the one diagnosed?

What is the impact of financial well being on healing?

Benefits Advice Talking Heads:Managing Hair Loss Lung Cancer Support Group (there are other like this for specific diseases)

PubMed

Does looking better make you feel better? Does that make you heal faster?

What is the impact of being around other people with the same disease as you for healing?

EMOTIONAL SUPPORT Talking to other visitors of the centers Making a cup of tea

Impact of connecting with other visitors on healing?

Talking to Cancer Support Specialists

Impact of talking to a professional about what you're going through? Not really a clinical psychological meeting but more informal

Impact of doing things for yourself on healing?

PSYCHOLOGICAL SUPPORT Talking to Psychologist on staff

What is the impact of talking to a psychologist on healing?

Relaxation workshops

What is the impact of talking to a psychologist on healing?

Working with clinical staff

What is the impact of the Maggie's staff working with clinical staff from hospital?

ENVIRONMENT Architectural Details/Elements Distance from hospital

Does the distance from the hospital and the centre has an affect on how the space is experienced? Does it affect the healing if it's too close or too far?

Access to nature

What is the impact of access to nature on healing?

Operable windows

What is the impact of a breeze/fresh air on healing?

Views with seats to look

What is the impact of therepeatic views on healing? (Visual nature)

Kitchen

What is the impact of making tea/cooking on healing?

Domestic scale

What is the effect of being in a domestic home vs hospital setting on healing?

Vernacular (sometimes)

Impact of vernacular architecture on how one feels in a space? Then healing?

Familiar objects (furniture)

Impact of

Cozy Unique

What is the impact of thought provoking architecture on healing?

Surprising/ "wow" elements

What is the impact of thought provoking architecture on healing?

Ease of access

Does access have an impact on whether one heals?

Adaptable spaces

Impact of

Litera Pathw

SEARCH WORD

MESH TERMS

Maggies Centre*

Spirituality

TOPICS

Imagination Dreams Pallative Care Architecture Design

Cancer Care Facilities Health Facilities Facility Design and Construction

Cancer

Neoplasms

Survivorship

Survival Rate

Therapy/ Thereaputic Use

Mortality *Health Knowledge, Attitudes, Practice Continuity of Patient Care *Delivery of Health Care / mt [Methods]

Ovid MedLine Mesh Words #

Words 1 Neoplasms 2 Cancer* 3 Cancer* OR Neoplasms 4 survivorship.mp. or exp Survival Rate/ 5 exp Cancer Care Facilities/ 6 exp "Facility Design and Construction"/ 7 exp Health Facilities/ 8 Maggie's Centre* 9 Spirituality 10 Imagination 11 Cancer Care Facilities OR Facility Design and Construction OR Health Facilities 12 Facility Design and Construction OR Health Facilities 13 Cancer Care Facilities AND FDC OR HF 14 Spirituality AND Imagination 15 Cancer AND Survivorship AND CCF AND FDC OR H 3 AND 4 AND 13 16 17

5 OR 6 OR 7

TOPIC

SEARCH WORDS USED

DATABASE

TITLE

Lung Cancer Support Groups

Maggie's Centre*

Science Direct

Lanarkshire lung cancer information and support sessions: A new patient venture in collaboration with Maggie's

Cancer Care Survivorship

Mesh Group 15

Ovid MedLine

The role of comprehensive cancer centers in survivorship care

Survivorship + Anxiety

Mesh Group 25

Ovid MedLine

Evaluation of a cancer survivorship protocol: transitioning patients to survivors

Quality of Care + Effects

Mesh Group 25

Ovid MedLine

Understanding cancer patients' reflections on good nursing care in light of Antonovsky's theory.

Meditation + Tai Chi

Tai Ji

Ovid MedLine

Tai Chi and meditation-plus-exercise benefit neural substrates of executive function: a cross-sectional, controlled study.

Tai Chi Trial

Mesh Group 28

Ovid MedLine

Feasibility and acceptability of a Tai Chi Chih randomized controlled trial in senior female cancer survivors.

Tai Chi Trial

Mesh Group 28

Ovid MedLine

Regular Tai Chi Exercise Decreases the Percentage of Type 2 Cytokine–Producing Cells in Postsurgical Non–Small Cell Lu

Pallative Care

Pallative Care

Ovid MedLine

Integrating palliative care into active cancer treatment. [Review]

Social Support

Mesh Group 33

Ovid MedLine

Does social support from family and friends work as a buffer against reactions to stressful life events such as terminal canc

Health Care System Critique

Mesh Group 33

Ovid MedLine

Could the health care system contribute to suffering? In-depth study from the perspective of terminally ill cancer patients.

Body Image/Physical Appearance

Mesh Group 36

Ovid MedLine

The relationship between body image, age, and distress in women facing breast cancer surgery.

Nurses knowledge of survivorship

Mesh Group 15

OvidMedLine

Oncology nurses' knowledge of survivorship care planning: the need for education.

Nutrition Therapy

cancer care, therapy, neopla Web of Science

Nutrition therapy in cachectic cancer patients. The Tight Caloric Control (TiCaCo) pilot trial

Spirituality

cancer care, therapy, neopla Web of Science

"Oh, yeah, I'm getting closer to god": spirituality and religiousness of family caregivers ofcancer patients underg

Mindfulness

"cancer" OR neoplasm* AND Science Direct

Mindfulness-Based Cancer Recovery: An Adaptation of Mindfulness-Based Stress Reduction (MBSR) for Canc

MEDICAL

Psychophysiological (psychotherapy) "cancer" OR neoplasm* AND Science Direct

Psychophysiological aspects of cancer

Psychology and Cancer

"cancer" OR neoplasm* AND Science Direct

Psychological interventions in the treatment of cancer

Meditation and Relaxation

"cancer" OR neoplasm* AND Science Direct

19 – Meditation and the Relaxation Response

Mindfulness

"cancer" OR neoplasm* AND Science Direct

Mindfulness Meditation

"cancer" OR neoplasm* AND Science Direct

Mindfulness meditation in clinical practice Stress Reduction through Mindfulness Meditation

Integrative Medicine

"cancer" OR neoplasm* AND Science Direct

Integrative Oncology: Complementary Therapies for Cancer Survivors

Mindfulness and Stress Reduction

"cancer" OR neoplasm* AND Science Direct

"Mindfulness-based stress reduction and health benefits: A meta-analysis"

Complementary Thereapy Evaluation "cancer" OR neoplasm* AND Science Direct

Who accesses complementary therapies and why?: An evaluation of a cancer care service

Meditation Therapy

"cancer" OR neoplasm* AND Science Direct

New Studies Support the Therapeutic Value of Meditation

Self Help

"cancer" OR neoplasm* AND Science Direct

Helping Patients to Help Themselves after Breast Cancer Treatment

Medical Devices

Cancer Care Facilities AND Web of Science

Thinking beyond the Cure: A Case for Human-Centered Design in Cancer Care

Yoga and Fatigue

"cancer" OR neoplasm* AND Science Direct

Effects of yoga on cancer-related fatigue and global side-effect burden in older cancer survivors

Mindfulness & Stress/Cortisol/etc

"cancer" OR neoplasm* AND Science Direct

Mindfulness-based stress reduction in relation to quality of life, mood, symptoms of stress and levels of cortisol,

Nature based research on health

Mesh Group 22

OvidMedLine

Nature-based experiences and health of cancer survivors

Forest Bathing and NK Cells

Mesh Group 22

OvidMedLine

A forest bathing trip increases human natural killer activity and expression of anti-cancer proteins in female subjects.

Design of Maggie's

Maggie's Centre*

Ovid MedLine

Maggie's Centres

Psychosocial Care Matrix

Mesh Group 15

Ovid MedLine

The cancer psychosocial care matrix: a community-derived evaluative tool for designing quality psychosocial cancer care d

Design of Cancer Care Facilities

Maggie's Centre*

Science Direct

Designing emotion-centred Product Service Systems: The case of a cancer care facility

Design of Cancer Care Facilities

Maggie's Centre*

Science Direct

Caring through architecture

Design of Cancer Care Facilities

"Cancer Care Facilties" (refin Web of Science

First Care Health Care Facilities New Big Vision, Small Miracle

Design of Cancer Care Facilities

Cancer Care Facilities AND Web of Science

What evidence is there about the specific environmental needs of older people who are near the end of life and

NATURE + HEALTH

DESIGN

AUTHOR(S)

n with Maggie's Lanarkshire

trolled study.

LITERATURE TYPE

DATE ACCES NOTES

L. Irvine, E. McGuire, J. McPhelim, K. Bridge Journal

7/23/2015 Statistics (s

Wim H. Van Harten MD, PhD1,*,Angelo Paradiso Journal

7/23/2015

Curcio KR; Lambe C; Schneider S; Khan K.

Clinical Nursing Journal

7/24/2015 Giving info

Kvale K; Synnes O.

Empirical Study

7/24/2015

Hawkes TD; Manselle W; Woollacott MH.

Controlled Study

7/24/2015

Campo RA; O'Connor K; Light KC; Nakamura Y..e Randomized Control Trial

7/24/2015 "The TCC

Wang, Ru PhD; Liu, Jing PhD; Chen, Peijie PhD;

Randomized Control Trial

7/24/2015 ": A 16-wee

Mazanec P; Prince-Paul M.

Review

7/24/2015 Has good c

as terminal cancer?

Ringdal GI; Ringdal K; Jordhoy MS; Kaasa S.

Randomized Control Trial

7/24/2015 "The mixed

ancer patients.

Daneault S; Lussier V; Mongeau S; Hudon E; Paill Qualitative Research: Intervi

on–Small Cell Lung Cancer Survivors

patients undergoing palliative care

BSR) for Cancer Patients

7/24/2015 "In some c

Miller SJ; Schnur JB; Weinberger-Litman SL; Mont Research: Questionare?

7/24/2015 "The result

Lester, Joanne L; Wessels, Andrew L; Jung, Journal

7/30/2015 "The Institu

Elisabeth De Waele, etc

Randomized Control Trial

7/31/2015 "Eight nutri

Bianca Sakamoto Ribeiro Paiva, etc

Qualitative Research: Intervi

7/31/2015

Michael Speca1, Linda E. Carlson1, Michael Seminal Study also RCT?

7/31/2015

C Weinstock

7/31/2015 "Much evid

A.David Feinstein, Ph.D

7/31/2015 "The paper

Richard Friedman,Patricia Myers,Herbert Ben Book chapter Paul Salmon, etc.

Some trial results

7/31/2015 "The relaxa

Astin J.A.

RCT

7/31/2015

7/31/2015 "he techniq

Kathleen Wesa, MD, Jyothirmai Gubili, MS, , Research Summary

7/31/2015 "Rigorous s

Paul Grossman, a, ,Ludger Niemannb, Stefan Meta-analysis Study

7/31/2015 "Although d

M. Matthewsa, M. Glackina, C. Hughesb,

Summary/Survey

7/31/2015 "Results su

Bonnie J. Horrigan

Summary of Studies

7/31/2015 " the medit

D.R. Fenlon∗, P. Khambhaita∗, M.S. Hunter† Summary of Studies

7/31/2015 "However,

Mullaney, Tara; Pettersson, Helena; Nyholm, Journal

7/31/2015 Study abou

Lisa K. Sproda, ,Isabel D. Fernandezb, etc,

4 Week Trial

7/31/2015 "Participan

vels of cortisol, dehydroepiandrosterone sulfate (DHEAS) and melatonin in breast and prostate cancer outpatie Linda E Carlsona, b, Michael Specaa, b, etc. 8 Week Trial

7/31/2015 " MBSR pr

subjects.

al cancer care delivery.

end of life and are cared for in hospices or similar institutions? A literature review

Ray, Heather; Jakubec, Sonya L.

Nursing Journal

7/24/2015

Li, Q; Morimoto, K; Kobayashi, M; Inagaki,.....etc.

Controlled Experiment

7/24/2015

Edwin Heathcote

British Medical Journal

7/23/2015 Talks abou

Forsythe LP; Rowland JH; Padgett L; Blaseg K; Si Journal: Research

7/23/2015 "the psycho

Patrick Keith Stacey, Bruce S. Tether

Journal: Research

7/24/2015 Compares

Janet Fricker

Journal

7/24/2015 “Architectu

Mark W Stavig and Eric Anderson

Journal

7/30/2015 Design cha

Rigby, J.; Payne, S.; Froggatt, K.

Journal

7/31/2015 facility desi

“94.4% respondents stated Lung Cancer Support Sessions at the Lanarkshire Maggie’s would be worthwile” “77.8% reported interest in attending these sessions”

S28 2. Provide information and practical advice about coping with the effects of mesothelioma and treatment.

Meetings to date: 19 meetings over 22 months were held prior to the audit. 37 patients and 48 family members had attended the support group. Median attendance 19 (range 10 36). Speakers attended for 14 out of 19 meetings.

Audit methodology: 60 survey questionnaires mailed to 24 patients (15 of these had previously attended the group). An additional questionnaire for family members to complete was enclosed.

Questionnaires sent to 12 bereaved family members (attendees).

Separate sections to complete for attendees and non-attendees.

Audit aim: To evaluate the support group and identify areas for improvement.

Results: 30 responses (24 attendees, 5 non-attendees, 1 not answered). All non-attendees aware of the support group. Reasons for non-attendance included difficulty in access and no perceived support needs. Most attendees satisfied with location (87%), timing (92%) and structure (79%) of group. Most stated group entirely (87%) or partly (8%) helpful. Meeting others in similar situation, discussion topics and opportunity to speak with the facilitators were cited as the most useful aspects.

Conclusion: High satisfaction among attendees of the support group. The views of patients/family members who do not attend the support group remain unknown.

84 ‘Better safe than sorry’ improving practice by the introduction of a PleurX catheter “Alert” card J. Maguire1 , L. Rutherford2 , A. Robinson3 . 1 Palliative Care Team, NI Cancer Centre, BCH, Belfast, N Ireland, United Kingdom, 2 Palliative Care Team, NI Cancer Centre, Belfast City Hospital, Lisburn Road, Belfast, N Ireland, United Kingdom, 3 Palliative Care Team, Level 2, Bostock House, Royal Victoria Hospitals, Grosvenor Road, Belfast, N Ireland, United Kingdom Introduction: Recurrent pleural effusions can be a therapeutic challenge for physicians and a source of continued morbidity for the patient. The use of an indwelling pleural catheter is one solution to this problem providing an innovative method of managing effusions in a domiciliary setting, thereby relieving symptoms of breathlessness, affording the patients some control, reducing the need for hospital admissions and overall improving quality of life.

PleurX catheters have been used increasingly within the Belfast Trust since 2003 and training programmes have been established for both community and hospital based staff. However during this time the authors have been concerned about the potential misuse of these devices by staff unfamiliar with their use. Anecdotal evidence and observations of practice have highlighted potentially serious incidents where staff have attempted to use the wrong equipment to carry out drainage procedures because of lack of knowledge about the catheters and lack of information about whom to contact for advice.

Methods: A small working group was established comprised of the Lung Cancer Nurse Specialists and the Palliative Care Nurse Consultant within the Belfast Trust, to design a small “Alert card” which patients can carry at all times, highlighting that they have a pleural catheter in place and providing contact details for all the key professionals involved. This was then taken to the NI Lung Cancer Nurses Forum for feedback and redesign. Other nursing and medical colleagues were also consulted with.

Conclusion: Following discussions with the manufacturer the card design has been agreed and is ready to be introduced into practice.

All patients who have an indwelling pleural catheter inserted will be issued with one of these cards on discharge. Patient feedback will be obtained on the usefulness of the cards and an audit of their use will be carried out.

Posters, 8th Annual BTOG Conference, 2010 85 Lanarkshire lung cancer information and support sessions: A new patient venture in collaboration with Maggie’s Lanarkshire L. Irvine1 , E. McGuire2 , J. McPhelim3 , K. Bridges4 . 1 Respiratory Dept, Monklands Hosp, Airdrie, Lanarkshire, United Kingdom, 2 Clinical Effectiveness, Monklands Hosp, Airdrie, Lanarkshire, United Kingdom, 3 Respiratory Dept, Hairmyres Hosp, East Kilbride, Lanarkshire, United Kingdom, 4 Respiratory Dept, Wishaw Hospital, Wishaw, Lanarkshire, United Kingdom NHS Lanarkshire is continually striving to improve the services offered to both patients and carers. Moore et al. 2009 cites that the impact of cancer on people and their families is increasingly recognized as significant and also under addressed. The lung cancer clinical nurse specialists, supported by Maggie’s Lanarkshire, are aiming to improve the support available to such patient group by conducting Lung Cancer Information and Support Sessions as a pilot project. A patient and carer questionnaire was devised to develop a patient and carer reported needs assessment. This would be utilised in setting the scheduled support sessions.

Discussion: Lung cancer services are delivered on 3 acute sites in NHS Lanarkshire. The socio-economic demographics of the sites are significantly different; this often results in varying levels of information seeking by patients and carers. Attempting to provide uniformity and service equity the decision was taken to host Information and Support Sessions as a pan Lanarkshire initiative rather than site specific. This was supported by Maggie’s Lanarkshire who agreed to host the event. This was the first such collaboration with Maggie’s and NHS Scotland.

Method: Pilot sessions were arranged running on the 2nd Wednesday of each month. A questionnaire was developed and administered to patients and carers. The questionnaire was sent to all patients diagnosed with Lung Cancer who attended both Respiratory and Oncology Clinics on all the 3 sites over the month of August 2009. This was required to collect the necessary information on patients’ views which would establish the content of the Information and Support Sessions. The questionnaire was designed to capture information such as venue, time of day and length of the session.

Information on session topics was requested to ensure it would meet patients/Carers needs and expectations. The Clinical effectiveness department provided full support.

Results: 54 questionnaires were returned which is approx 10% of the annual incidence of lung cancer in NHS Lanarkshire.

94.4% respondents stated sessions would be worthwhile and 77.8% reported interest in attending sessions. Pilot support sessions are currently underway with ongoing analysis after each session.

This will provide information on sustainability, feasibility and the requirement for future similar sessions.

86 Post diagnosis home visits improve patient journey in lung cancer M. Palmer, J. Phelps, J. Barber, D. Powrie. Heart and Chest Clinic, Southend University Hospital, Southend, Essex, United Kingdom Introduction: Lung cancer is a diagnosis which has a huge impact on patient and carers lives. It is recognised that patient recollection of information given at the time of diagnosis in imperfect and may be related to the shock of receiving a lung cancer diagnosis. Home visits for all newly diagnosed patients were offered with the aim of supporting patients and reinforcing information given at first consultation.

Method: Visits were carried out within a week of initial diagnosis.

Patient satisfaction surveys were given to 52 patients following a home visit.

Results: 90% of patients reported that they understood the information given to them at diagnosis, 97% agreed or strongly agreed that seeing the nurse at home helped increase understanding and 100% agreed or strongly agreed that it helped reduce anxiety.

“A 16-week Tai Chi exercise significantly diminished the magnitude of the decreased T1/T2 ratio in the natural course of recovery in a population of postsurgical non–small cell lung cancer survivors.”

“Tai Chi may have a role in ameliorating the imbalance between humoral and cellular immunity, potentiating human immunity against tumors.”

J Complement Integr Med. 2014; 11(4): 279–288

Teresa D. Hawkes*, Wayne Manselle and Marjorie H. Woollacott

Tai Chi and meditation-plus-exercise benefit neural substrates of executive function: a cross-sectional, controlled study

Abstract Background: We report the first controlled study of Tai Chi effects on the P300 event-related potential, a neuroelectric index of human executive function. Tai Chi is a form of exercise and moving meditation.

Exercise and meditation have been associated with enhanced executive function. This cross-sectional, controlled study utilized the P300 event-related potential (ERP) to compare executive network neural function between self-selected long-term Tai Chi, meditation, aerobic fitness, and sedentary groups. We hypothesized that because Tai Chi requires moderate aerobic and mental exertion, this group would show similar or better executive neural function compared to meditation and aerobic exercise groups. We predicted all health training groups would outperform sedentary controls.

Methods: Fifty-four volunteers (Tai Chi, n ¼ 10; meditation, n ¼ 16; aerobic exercise, n ¼ 16; sedentary, n ¼ 12) were tested with the Rockport 1-mile walk (estimated VO2 Max), a well-validated measure of aerobic capacity, and an ecologically valid visuo-spatial, randomized, alternating runs Task Switch test during dense-array electroencephalographic (EEG) recording.

Results: Only Tai Chi and meditation plus exercise groups demonstrated larger P3b ERP switch trial amplitudes compared to sedentary controls.

Conclusions: Our results suggest long-term Tai Chi practice, and meditation plus exercise may benefit the neural substrates of executive function.

*Corresponding author: Teresa D. Hawkes, 711 Human Performance Wing, Air Force Research Laboratory, Wright Patterson Air Force Base, Dayton, OH; University of Oklahoma, 455 W. Lindsey St., Dale Hall Tower 705, Norman, OK 73019, USA, E-mail: teresa.hawkes@gmail.com Wayne Manselle, Marjorie H. Woollacott, University of Oregon, Eugene, OR, USA

Keywords: aging, executive function, exercise effects on cognition, meditation, P3b, Tai Chi

DOI 10.1515/jcim-2013-0031 Received July 19, 2013; accepted August 29, 2014; previously published online October 8, 2014

Introduction Health regimens that benefit executive function are under active investigation. Such regimens include meditation [1] and moderate exercise [2–5]. Tai Chi is an ancient health practice from China, often recommended by somatic therapists for relaxation and balance rehabilitation [6, 7]. We report the first controlled study investigating Tai Chi effects on the neural substrates of executive function.

Executive function, also known as executive attention, has a number of key components, including response inhibition, updating of working memory, and mental set shifting [13, 14]. A key neuropsychological test used to evaluate executive function is the Task Switch test. It is used in combination with EEG event-related potentials (ERPs) to evaluate both behavioral and neural substrate levels of executive attention [8–12].

Event-related potentials (ERPs) are averaged EEG signals time-locked to specific stimulus and response events recorded during performance of cognitive tasks [13]. These deflections are thought to index total neural activity in specialized microcircuits operating in parallel neural networks during task execution [9, 14]. ERPs occur within specified time windows at specified electrodes relative to experimentally defined events of interest (i.e. stimulus onset, trial type, button press response onset, and trial by trial response time and accuracy).

Giving informatin (survivorship plan) to those with cancer reduced anxiety levels “Anxiety scores were lower one month after the in-

© Oncology Nursing Society. Unauthorized reproduction, in part or in whole, is strictly prohibited. For permission to photocopy, post online, reprint, adapt, or otherwise reuse any or all content from this article, e-mail pubpermissions@ons.org. To purchase high-quality reprints, e-mail reprints@ons.org.

n CNE Article

Evaluation of a Cancer Survivorship Protocol: Transitioning Patients to Survivors Kristin R. Curcio, RN, DNP, ANP-BC, GNP-BC, OCN®, Camille Lambe, RN, PhD, AOCN®, NP, Susan Schneider, RN, PhD, AOCN®, ACNS-BC, FAAN, and Kalsoom Khan, MD

This article describes the implementation and evaluation of a survivorship protocol for cancer survivors to improve knowledge about their disease and decrease anxiety. The study included a convenience sample of 30 cancer survivors at an outpatient community cancer center in the southeastern United States following completion of acute oncology treatment. One month after the survivorship protocol was delivered, knowledge about diagnosis, treatments, recommended follow-up, signs of recurrence, and late side effects increased. Anxiety scores were lower one month after the intervention, and satisfaction with the protocol was high. The results demonstrated that the survivorship protocol is a feasible method of educating cancer survivors, © Oncology Nursing Society supporting the Institute of Medicine’s recommendation that strategies for delivering education to cancer survivors are important. Survivors have additional needs that must be addressed following treatment, and a survivorship protocol can provide the knowledge survivors need to participate in their own health care.

Kristin R. Curcio, RN, DNP, ANP-BC, GNP-BC, OCN®, is a nurse practitioner at the Cone Health Regional Cancer Center in Greensboro, NC; Camille Lambe, RN, PhD, AOCN®, NP, is an assistant professor and Susan Schneider, RN, PhD, AOCN®, ACNS-BC, FAAN, is an associate professor, both in the School of Nursing at Duke University in Durham, NC; and Kalsoom Khan, MD, is a medical oncologist at the Cone Health Regional Cancer Center. The authors take full responsibility for the content of the article. The authors did not receive honoraria for this work. The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the content of this article have been disclosed by the authors, planners, independent peer reviewers, or editorial staff. Curcio can be reached at kristin.curcio@gmail.com, with copy to editor at CJONEditor@ ons.org. (First submission July 2011. Revision submitted September 2011. Accepted for publication October 19, 2011.)

Digital Object Identifier:10.1188/12.CJON.400-406

A

dvances in cancer research, including early detection, better supportive care, and more effective treatments, have led to people living longer with or after a cancer diagnosis (American Cancer Society, 2012; Centers for Disease Control and Prevention [CDC], 2011; Rowland & Yancik, 2006). To date, more than 11 million cancer survivors are living in the United States, and that number is expected to double by 2030 (CDC, 2011). Most therapeutic modalities for cancer are beneficial and lifesaving, but are associated with adverse long-term and late sequelae, including physical and psychological side effects that may impact survivors’ quality of life (Aziz, 2007; Campbell, Mayer, Abernathy, & Carroll, 2008; Deimling, Bowman, Sterns, Wagner, & Kahana, 2005; Hudson et al., 2003; Leak, Mayer, & Smith, 2011; Oeffinger et al., 2006).

Cancer treatments are associated with specific long-term and late side effects that vary greatly depending on type of cancer and the treatment modalities involved (Earle, 2006).

Reported physical effects include cognitive dysfunction (thinking and memory problems), fatigue, lymphedema, cardiotoxicity, pulmonary toxicity, and peripheral neuropathy (Aziz, 2007; Carver et al., 2007). Another concerning late side effect of cancer treatment is the development of secondary

400

malignancies. Research has shown that adults and children who have received chemotherapy or radiation therapy are at risk for developing a secondary malignancy (Chaudhary & Haldas, 2003; Maule et al., 2007).

Studies also have demonstrated that survivors have more comorbid conditions and chronic health problems (e.g., congestive heart failure, coronary artery disease, renal failure) than their healthy counterparts (Keating, Nørredam, Landrum, Huskamp, & Meara, 2005; Oeffinger et al., 2006; Yancik, Ganz, Varricchio, & Conley, 2001). Adult survivors of childhood cancers have reported having at least one domain of health status (e.g., general or mental health and cancer-related fear or anxiety) that was moderately or severely affected by their treatment (Hudson et al., 2003).

Survivors have an increased likelihood of not receiving recommended care across a broad range of chronic medical conditions or recommended preventive services, particularly when followed only by an oncologist (Earle & Neville, 2004). When survivors receive care from a primary care provider (PCP) and an oncologist, they are more likely to engage in preventive health services and receive cancer screening services (Earle, 2006; Earle & Neville, 2004; Ganz, 2006). That underscores the need for improved communication between specialists and PCPs for optimal survivor care.

August 2012 • Volume 16, Number 4 • Clinical Journal of Oncology Nursing

“The Institute of Medicine has challenged oncology providers to address cancer survivorship care planning. Gaps in cancer survivorship knowledge are evident and will require focused education for this initiative to be successful.�

“Much evidence has accumulated to suggest that the psychological treatment of cancer can sometimes be sucessfully adjunctive to (or even replace) the somatic. The therapy is primarily reeducative psychothereapy, not psychoanalysis.� (369)

“Architecture is a useful tool that can help people open up.

Being in a good place lowers anxiety levels�

Cancer and Society

issues: a chapter on privacy would have been a welcome addition to Blood Matters.

Nonetheless, there is much of merit here. Gessen has researched her subject assiduously, undertaking

dozens of interviews and unearthing some fascinating details. The Economist recently suggested that developments in our understanding of biology would have a similar impact on the 21st century, as knowledge of physics did

on the previous hundred years. After reading Blood Matters, few would disagree.

Talha Burki t_burki@yahoo.co.uk

http://oncology.thelancet.com Vol 9 June 2008

that was as distinct as possible from the institutional hospital setting”, explained Jencks.

The brief to Rogers Stirk Harbour for the London building was to create an uplifting environment.

“We wanted the centre to remind people of who they are and that cancer is just a component of what is going on in their lives, not the be all and end all”, commented Lee. “Architecture is a useful tool that can help people open up. Being in a good place lowers anxiety levels”.

Will Wimshurst, one of the architectural team, said the brief was completely different from any thing he has encountered. “Normally briefs talk about square footage, and plant design, but this one talked about how they wanted people to feel in spaces.

It was really inspirational.”

The feeling of tranquillity has been achieved by making a distinctive feature of the floating roof which sails over the outer walls. It serves a practical purpose, shielding the windows and inner courtyards from the looming view of the nearby Charing Cross Hospital. Low iron glass, with a lot of transparency, has been used where the roof meets the building to enhance the impression of a floating structure.

Entering the centre through the front door, there is no reception, just a kitchen area with a big farm-housestyle table for visitors to sit round.

Jencks calls this concept kitchenism— the intention to help people feel instantly at home. “The kettle is integral—on their second visit people

The kitchen area of the new Maggie’s Cancer Caring Centre, London, UK

make their own cups of tea. Here at least they’re not passive recipients having yet more stuff done to them”, said Lee. Part of the brief was to create as many corners as possible. Here architects took inspiration from Maggie’s own book on Chinese gardens. Birch doors have been installed that slide open to provide large spaces for meetings, or divide up into small areas for intimate

Richard Anderson

Undoubtedly, the greatest challenge for Richard Rogers and his team at Rogers Stirk Harbour and Partners in designing the new Maggie’s Cancer Caring Centre, which opened in London at the end of April, was the unprepossessing site. Wedged on a sliver of land between the main artery of the Fulham Palace Road and Charing Cross Hospital’s emergency department, it is difficult to credit the oasis of tranquillity that has been created. Remarkably, in the building you hear the rain more than the roar of nearby traffic.

Maggie Keswick Jencks—who died from breast cancer in July 1995—had a vision for a centre that would empower patients with cancer to get on with their lives. The resulting Maggie’s Cancer Caring Centres provide help, information, and support to people affected by cancer and their families.

Today, there are five Maggie’s Cancer Caring Centres in Scotland, and seven planned for England and Wales, of which the London centre is the first to open. “The centres are about enabling people to help themselves in what ever way is right for them”, said Laura Lee, the chief executive, who was also Keswick Jencks’s oncology nurse.

The combination of good building and garden design was integral to Keswick Jencks, who had studied architecture and was married to the architectural writer Charles Jencks.

As Maggie battled her cancer, the couple had a vision of a domestic, yet attractive environment that would boost the spirits of the patients.

“Above all we wanted an environment

Richard Anderson

Design Caring through architecture

A patient, Namina Turay, with Sarah Brown, Nigella Lawson, and Laura Lee

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