Chief Scientist Office Final report form
CSO reference number: SCPH/06
Please complete this form in Verdana 10 point font size Project title: Feasibility Study of Use of Direct Payments for Informal Care
Start date:1st March 2010
Finish date: 30th June 2011
Investigators: Professor Anne Ludbrook Dr Paul McNamee
This study aimed to examine the feasibility of using direct payments for care as a way of increasing the supply of informal care. Information was sought from people over 65 and their actual or potential carers, first, through a postal questionnaire and then through a voluntary agency approaching those on their register of care providers. Neither method was successful in engaging with the target group. From the limited responses received (8 care users and 10 care providers) half of the care users thought that paying friends or family for care was acceptable, in principle, but the majority would not use the system. Similarly, the majority of care providers found the principle of payment acceptable but only a minority said it would increase the amount of care they provided. This feasibility study suggests that questionnaire based approaches are unsuccessful in eliciting views about direct payments from actual or potential users and providers of informal care.
The overall goal of this feasibility study was to use a structured questionnaire survey of households, with at least one individual aged 65 years or over, carers or potential carers, to identify preferences for and responses to alternative payment systems. Four specific aims were identified: 1. To identify sources of income for older people aged 65 years or over; 2. To assess how particular sources of income are spent on pre-defined care goods and services;
3. To examine the relationship between income, household expenditure types and levels of well-being; 4. To estimate the relationship between income, household expenditure types and the supply of informal care. In addition, the following four research questions were posed: 1. Does additional income from state-benefits lead to greater formal care services? 2. Is additional income from state-benefits associated with a informal care? 3. Would a policy of use of direct payments to pay for informal people and their carers (or potential carers)? 4. Would a policy of use of direct payments to pay for informal informal care?
household expenditures on reduction in the supply of care be acceptable to older care increase the supply of
As will become apparent in the methodology section below, poor response rates meant that it was only possible to address, in a partial way due to sample size, research questions 3 and 4.
A structured questionnaire survey of households was planned. Questionnaire content was informed by literature review of relevant studies cited in the funding application, together with development of question wording from similar household surveys (British Household Panel Survey and Scottish Household Survey). Two pilot surveys were undertaken initially to refine the questionnaire and test the response rate. Both the first pilot survey and the amendments to the survey were submitted to the University of Aberdeen College of Life Sciences & Medicine Ethics Review Board (CERB). Ethical approval was submitted in July 2010 and granted in August 2010 subject to minor amendments, with full approval granted in September 2010. In the first pilot survey, self-completion postal questionnaires for users of unpaid care and unpaid care providers were sent to 100 sheltered (extra care) housing addresses in Aberdeen city in early October 2010. Addresses were identified from the extra care housing lists available on the web page of Aberdeen City Council. Respondents were requested to complete one questionnaire themselves, either as a current unpaid care user or potential unpaid care user, and were also invited to pass on a second, different questionnaire to a friend, neighbour or relative. This second questionnaire was designed for either current or potential providers of unpaid care. This sampling strategy was used as a means to recruit younger (<60 years of age) respondents, who either provide unpaid care or could be unpaid carers in the future, and who do not reside in extra care housing. Following a poor response to the first pilot, a second pilot survey was undertaken. In the second survey, the length of the questionnaire was shortened, with questions on capabilities (Coast et al 2008) dropped, and the procedure for identifying respondents was simplified. This simplified procedure avoided the requirement for respondents to identify an additional participant and pass the questionnaire to them for completion. Instead, only one questionnaire was sent to each household, either an unpaid care user/potential user questionnaire, or an unpaid care provider/potential provider questionnaire. Finally, a financial incentive was tested, to assess whether this would lead to a larger response rate. This involved half of the sample being eligible for entry into a prize draw upon completion and return of the mailed questionnaire. The prize was the possibility of winning one of two ÂŁ25 supermarket vouchers. This led to the creation of four sample groups: 1. Care user with prize (n=50); 2. Care user without prize (n=50); 3. Care provider with prize (n=50); 4.
Care provider without prize. These 200 questionnaires were mailed in early November 2010 to different addresses from those in the first pilot survey, again obtained from the extra care housing lists available on the web page of Aberdeen City Council. The second pilot also met with a poor response. Although not in the original project plan, feedback from SCPHRP in November suggested that the next stage should be to undertake qualitative research, either with current/potential care users or providers. Discussions took place with staff at the VSO Carer’s Centre, Aberdeen, to identify whether it was possible to conduct face-to-face qualitative research with suitable groups of adult care providers. The Centre were willing to support research in the topic area, and were confident that a short survey questionnaire would yield suitable information. It was also judged to be a more efficient approach, i.e. gaining the same information from more respondents in less time for less research resource, with a follow-up face-to-face discussion of the results amongst Centre staff, should there be a sufficient response. Thus, a new, shorter, two page questionnaire was developed and agreed with the Centre, with the second page left largely as free text, to allow recording of attitudes towards payment for providing support and care. A random sample of 100 adult carers was selected from a total of 1000 carers that were available, whose names, addresses and ages were held by the Centre on their Newsletter database. Database members were current carers who had opted to receive a Carer’s Newsletter every three months. Knowledge of the newsletter was gained through carer’s visiting the Centre for advice or information, or following meetings with support workers employed by the Centre.
First pilot survey Seven respondents replied. Two respondents did not wish to participate, and a further respondent sent back a blank consent form and questionnaire. Thus, only four completed questionnaires were returned, three from care users and one from a care provider. Second pilot survey In the second pilot survey, 12 respondents replied. Five respondents did not wish to participate. Thus, only seven completed questionnaires were returned, five from care users and two from care providers. Two of the respondents who were care users received the prize draw questionnaire version, whilst the other three did not receive this version. Amongst the care provider respondents, both received the prize draw version. Taking the two pilot surveys together, there are a total of eight care user respondents and three care provider respondents. Care Centre survey Eleven responses from care providers were received, with four questionnaires returned and marked as “not known at this address”. Thus, there are a total of seven care provider respondents. Taking all three surveys together, there are eight care users and ten care providers. We pool data from these and report basic descriptive statistics that are available across the surveys.
Care users Amongst the care user sample, 4/8 were aged between 70-74 years, with the remainder aged 75 years or more. There were five male respondents, and 6/8 were living alone. The majority had a gross weekly income of between £100-£250 per week. Half the sample were in fair health, with 3/8 in bad or very bad health. All reported that they had a long-standing illness, disability or infirmity, and all reported that it limited their activities in some way. 3/8 were currently receiving paid or unpaid help with household tasks, and 2/8 were receiving paid or unpaid help with personal care. 5/8 were currently receiving no unpaid care. A majority (6/8) of respondents would not use any new payment system to change the amount of help currently received, or would not use any new system to pay relatives, friends or neighbours for care should they require it in the future. Amongst this group of six respondents, a respondent who receiving unpaid help from a spouse said “I would rather die than get outside help”. Amongst those not receiving any paid or unpaid help, another said “I’m too independent to grovel for any sort of help”, whilst another noted “If I needed help I would much rather not have friends help me. I would feel they were obliging me. It is better to keep it impersonal”. Another respondent, currently paying for help using their own income, pointed out the barriers to help from family: “My family do not live locally so difficult for them to help on a regular basis”. However, 4/8 did consider the idea of such a system acceptable. Two respondents currently were receiving help with household tasks and/or personal care from a son or daughter, whilst two others were currently receiving no unpaid care. Care providers Amongst the care provider sample, 5/10 were aged between 45-64 years of age, with the remainder 65 years or older. 7/10 were female and 9/10 were current carer providers. The relationship between them and the care receiver was mixed, however 5/10 provided care to a spouse. The level of care was described as “intermittent” or “variable” in 2/10 cases, otherwise the number of care reported varied between 30-40 hours per week and up to 168 hours per week. 6/10 respondents found the idea of payment for unpaid carers acceptable, although only 3/10 indicated that such a system would induce them to provide more care. Finally, in the third survey, a new question was asked on whether respondents would opt in to such a system, and 5/7 indicated that they would do so. Amongst those who found payment acceptable, one respondent said: “They should be paid – hospitalization costs much more”. Another indicated: “Why shouldn’t they be paid for caring for their parent, sibling, child or friend? Many people give up their jobs and social life to care for their loved ones with little support – money or otherwise – from their local authority. Obtaining respite is like getting blood out of a stone and carers are left to get on with it. Payment might help the carer to feel that they are valued and might help them to have some sort of life away from caring 24/7”. A third respondent said: “ I think it is a good idea to allow direct payments to be used to support the person providing care by being paid to do household tasks or pay for someone to do the tasks. My sons receives direct payments but it is difficult to find paid carers to look after him. Even using an agency at present they have no paid carers, so I am having to care for my son without help at present. I am totally exhausted. If I have to do all the care, despite social work assessing us as needing support, we should be able to pay people to do the household tasks, to relieve the added burden of all the cleaning, ironing, etc.” Amongst those who did not find payment acceptable, one indicated: “If I were unable to work as a result of having to care for my child, then this would be acceptable, otherwise I see it as my duty”.
Due to the problem of recruitment to the survey, it is difficult to draw any firm conclusions as regards the level of acceptability of payment for unpaid care. In previous postal surveys of carers, we have achieved a response rate of 20% (Mentzakis, McNamee, Ryan 2011). We had anticipated a similar, or even larger response, as the questionnaire was largely based on tick-box responses to single questions. It is possible that the reasons for the low response rate in the first two pilot surveys related to the need for respondents to navigate themselves to different sections of the questionnaire, dependent on their answering response. We attempted to solve this via a much shorter, simpler questionnaire format, amongst current carers, who we expected would be more engaged with the research questions than sheltered housing residents, but even here, the response rate remained below 10%. One reason for the poor response rate in the final survey may relate to carers having insufficient time to read and complete the questionnaire, given other competing demands on their time as a result of caring. Also, it may be that a large majority considered that the questionnaire was not relevant to them, as it was stated that responses would inform a review of the Direct Payment policy currently being undertaken by the Scottish Government. Alternative approaches to a postal survey of respondents living in community settings would be in-person interviewing. This could be within a person’s own home or in other settings, such as hospital clinics or Carer’s Centre premises. This is more resource intensive in terms of research time, and also may be subject to a form of interviewer bias, if respondents consider that they should be providing socially acceptable responses. Questions that ask about acceptability of payment to spouses or other close relatives for help with household tasks or personal care may well be prone to such effects (Glendinning et al 2008). A middle ground, with a researcher or receptionist handing out a short questionnaire upon arrival at a clinic or Carer’s Centres, with the respondent completing it on the premises or at home, may have led to more responses but without the potential for bias.
It does not appear feasible to explore attitudes towards payment for help with household tasks and personal care, and potential changes in levels of unpaid care that might arise from such payment, with postal surveys of older people living in sheltered housing, or with adult carers who are known to voluntary agencies such as Carer Centres. Other methods that rely on some form of in-person administration may yield a greater level of response, but may be subject to biased responses related to non-anonymity. Within the sample who did respond to the surveys, there appears to be reasonable support for payments for unpaid care, although such support is by no means universal, with 10/18 respondents in support of the idea. The small response rate throughout the three surveys also suggests that enthusiasm for payments for unpaid care is far from overwhelming. An alternative interpretation is of “bi-modal preferences”, with some strongly in favour, and others strongly against. The comments from respondents reported above is consistent with such an interpretation. In addition, such a scheme may lead to small changes in the type or level of support provided, with only 5/18 respondents indicating that care arrangements would likely change as a result of payments.
References Coast J, Flynn T, Natarajan L, et al. Valuing the ICECAP capability index for older people. Social Science and Medicine 2008;67(5):874-882. Glendinning C, Halliwell S, Jacobs S, Rummery K, Tyrer J. New kinds of care, new kinds of relationships: how purchasing services affects relationships in giving and receiving personal assistance. Health & Social Care in the Community 2000;8(3):201-211. Mentzakis E, Ryan M, McNamee P. Using discrete choice experiments to value informal care tasks: exploring preference heterogeneity. Forthcoming: Health Economics, 2011. Scottish Government. Self-Directed Support: A draft bill for consultation, 2010.
Importance to NHS and possible implementation
The research conducted has relevance to ongoing work being conducted by the Scottish Government on Self-Directed Support. A draft bill was published for consultation and a report summarizing the responses is currently under preparation. In the draft bill, the following was noted: “Regulation 4 in the 2003 regulations lists the people who cannot provide support under a direct payment arrangement. In other words, it lists people who cannot benefit financially from money released to a person through a direct payment. This list includes the direct payment recipient‘s spouse, parent, grandparent and any other close relation. It is accompanied by a further regulation which states that the restriction can be waived by a local authority where it is satisfied that securing the support from the listed person is necessary to meet the person‘s assessed need. In the current guidance on self-directed support this is described as an “exceptional circumstance”. In the first round of consultation, some people asked for an amended, less stringent, set of regulations to be laid. They asked for regulations to focus on when and where a local authority can sanction the employment of close relatives and not simply where they cannot. We are considering reforming the regulations to take on board these comments.” Any change to the current structure may have implications for the level of unpaid care provided, which could have knock-on, positive effects for the NHS. For example, greater provision of unpaid care could lead to higher avoidance of preventable emergency hospital admissions. On the other hand, if such care substitutes for ‘professional’ care, there is a possibility that quality of care may fall, with adverse effects on the NHS through greater emergency admissions. Further research is required to test these hypotheses.
Following on from the point made regarding changes in the level of unpaid care and levels of emergency admissions, further research could be conducted to assess whether any policy change affected the supply of care from relatives, and whether this led to a change in the number of emergency hospital admissions. Secondary data collected by ISD could be used investigate patterns of hospital admissions, supplemented by analysis of changes in levels of unpaid care from sources such as the Scottish Household Survey.
An interim presentation was made to the Scottish Collaboration for Public Health Research and Policy in November 2010. A paper will be submitted to a health services research or social care journal, to highlight the difficulties of conducting postal surveys of sheltered housing residents and carers, and to highlight the exploratory findings.
Yen Feng was employed as a Research Assistant on the grant, 50% WTE, from April 2010December 2010 inclusive.
The original award of £19,797 was underspent. Although additional researcher time was required to develop and pilot revisions of the questionnaire, this was more than offset by the reduction in time required for data entry and analysis.
Health Economics Research Unit (HERU) Statement of Expenditure on Research Project Entitled Feasibility study of the use of Direct Payments for Informal Care SCPHRP Reference Number: 06-09/10 £ Income Received Expenditure Salaries Other costs
Total to be refunded to SCPHRP
Executive summary (Focus on Research)
See separate attachment
Appendix 1 Document 1
Participant consent form
Document 2 Document 3
Participant information for care users Participant information for care providers
Document 4 Document 5
Postal questionnaire for care users - original version Postal questionnaire for care providers - original version
Document 6 Document 7
Postal questionnaire for care users - revised version with prize Postal questionnaire for care providers - revised version with prize
Document 8 Cover letter for carer centre survey Document 9 Participant information for carer centre survey Document 10 Carer centre survey To view appendix1 documents 1 â€“ 10, please contact Sam Bain (firstname.lastname@example.org) at the Scottish Collaboration for Public Health Research and Policy