Evidence Review: Personalisation September 2012 Amy Veale Research Development Manager Age NI 3 Lower Crescent Belfast BT7 1NR t: 028 90245729 e: amy.veale@ageni.org Age NI delivers care services, provides advice and advocacy, campaigns, fundraises and lobbies decision-makers to improve later life for us all.
What do we mean by personalisation and how does it impact on health and social care outcomes? Strategic area: Focus: Policy relevance: Health and Social Care Personalisation Transforming your Care Key findings Personalisation, or person-centred care is a broad concept in the literature. At it s heart is choice, participation, flexibility, and care focused on the aspirations and values of individual service users There is a danger that personalisation has become synonymous with direct payments, when the concept is much broader than this There is a concern that the term personalisation has become policy rhetoric with no clarity for service providers in terms of implementation Research with older service users has revealed a desire for more flexible, person centred care Research with service purchasers and providers has revealed a number or obstacles to personalised care which will need to be addressed. There is an urgent need for more research exploring the value of personalised care in terms of outcomes. 2
Background This evidence review on personalisation is one in a series of five which have been developed to correspond to and support Age NI s vision for social care, which is for quality integrated social care that recognises the rights, aspirations and diversity of us all, and is based on the right to live with dignity, independence, security and choice. These evidence reviews will draw on findings from research in an attempt to ensure that policy making is informed by a strong evidence base. The list of research articles referred to in this review is not intended to be exhaustive, but it is hoped that reference to this research will encourage evidence based thinking and further debate on this matter. Age NI believes that a good understanding of the challenges of an ageing population is vital for policy makers. It is therefore important that the right strategic policy decisions are underpinned by a strong evidence base. It is hoped that these evidence reviews will contribute to the development of that evidence base and play a role in improving social care provision in Northern Ireland. What do we mean by personalisation? Despite frequent reference to personalisation or person-centred care (the terms have been used interchangeably) in the policy literature, there is no explicit agreement on a definition [1]. In a review of the literature on person-centredness and alzheimer s disease, Edvardsson states that person centered care involves;- the acknowledgement that the individual is a person that can experience life and relationships; offering and respecting choices; the inclusion of past life and history in care supporting the rights, values, and beliefs of the individual and sharing decision making. It is generally agreed that personalisation involves treating service users as individuals and trusting and supporting them to make choices about their care. A major concern is that direct payments (where service users receive payment to arrange their own care) 3
have become synonymous with personalisation. Direct payments however are only one aspect of personalisation, the scope of which is much broader. A number of concepts have been identified that support the delivery of care that is personalized or patient-centred. These include; communication, involvement, participation, partnership, empowerment, empathy, choice, holism, and finally assessment [2]. Communication refers to the two way exchange of information between the service provider and the service user, it involves listening to and responding to the views of the service user. Involvement involves communicating with the service user about the development of care plans or decisions about their care. Participation takes involvement one step further and involves the active participation of service users in the development of their care plans. Partnership relates to participation as it involves the service provider and service user working as a team in order to achieve outcomes that are agreed by both parties. Empowerment involves trusting the individual to decide what is best for them in terms of care planning. Empathy involves the care provider considering and trying to understand the service users experiences and feelings. Choice involves providing the service user with a range of options to choose from, and respecting the decision that is made. A holistic approach involves viewing the psychological and physical needs of the individual collectively 4
Assessment should consider service users values, and preferences as a foundation for person-centred care. What does personalisation look like in practice? Research undertaken by the Social Policy Research Unit at the University of York interviewed older service users and service providers in order to determine what personcentred care looks like in practice [3]. As well as involving the service user in decisions about their care plan, person-centred care also involves a degree of flexibility in terms of how care is provided. Two examples of flexible, person-centred home care found in the study are cited below;- An isolated service user who gets 90 minutes per week for her home care worker to take her shopping, to the beach, or the park, as she chooses. Following a stroke, social services commissioned these excursions as they mattered greatly to the service user. Another service user chose to use her 30 minute lunch visit as an opportunity to have a walk with the care staff member. This was her preferred use of time. Other examples of person centred approaches from the research literature include;- Personalising environments for people with dementia Reminiscence as a care strategy through the sharing of autobiographical memories using pictures, music and scrapbooks. What does personalised care mean for older service users? The Social Policy Research Unit also spoke to older service users in order to determine what person- centred care meant to them [4]. 5
Key findings were as follows;- The most common unmet aspiration amongst service users was help to get out of the house, for example to be taken shopping or other places of interest. Some older service users requested more flexibility with care plans for matters which would require little time, such as the changing of a light bulb. Others wanted flexibility in terms of choice, for example choosing where in their home allocated cleaning time would be spent. Others expressed a degree of flexibility which would be more time consuming, such as help with an Attendance Allowance claim form, or leisure outings. What factors make a person-centred approach possible? The research undertaken by the Social Policy Research Unit also explored the factors which make a person-centred approach possible [5]. Twenty-three home care providers were interviewed concerning what promotes or impedes quality aspects of service giving, as defined by older customers above. The most marked differences in willingness to give flexible help occurred between different independent sector providers, rather than between independent and Social Services in-house providers. Attitudes of purchasers and providers were both found to be important, however providers were often restricted in terms of service delivery by the stipulations of purchasers. The following factors were found to play a key role;- The influence of Social Services purchasers proved particularly important. Purchasers affected service quality through the amounts of time that they commissioned and through whether they would purchase help to address customers' quality of life as well as for their physical well-being. Some were found to be prescriptive whilst others encouraged providers to expand their range of flexible, person-centred help. 6
Economic factors like the purchasing power of local home care pay rates, local geography and demography, were found to play a key role. Level of control played a key role. Some purchasers controlled details of everyday care giving, which other purchasers left to providers' discretion. Also influential was the attitude of providers themselves to giving miscellaneous occasional help like finding reliable private tradesmen or taking customers with them on shopping trips. Some providers readily gave such help and found it unproblematic to do so. Others prohibited it. Is there evidence of improved outcomes with personalised care? There is currently a lack of evidence on the outcomes of a person-centred approach. Much of the research has focused on direct payments or personal budgets, but personalisation is much broader than this. More interventions which explore the impacts of a wider range of person-centred practices must be developed and it is essential that these are well designed to ensure that findings are valid and reliable. Despite a lack of research in this area, there are a number of well-designed studies which have measured outcomes beyond personal budgets or direct payments. Findings are outlined below. Improved health related quality of life As stated, a key concept of person-centred care involves the active participation of the service user with the provider in the development of care plans. Parsons et al (2012) carried out a controlled trial in which community dwelling older people referred for homecare were subject to one of two conditions; an intervention in which care plans were developed using a goal facilitation tool where goals were decided in conjunction with the service user, or a standard needs assessment [6]. The aim of this study was to assess the impact of a designated goal facilitation tool on healthrelated quality of life (HRQoL), social support and physical function among community-dwelling older people. 7
A total of 205 participants, took part in the study. Results showed that health related quality of life outcomes are significantly better for older people who are facilitated to plan their own care packages. The authors concluded that this was likely the result of a higher proportion of individualised activities tailored to the successful identification of the person's goals. Improved outcomes for service users with dementia In a study explored the effects of person-centred care on outcomes for service users with dementia [7], the authors carried out a large, randomised comparison of person centred care, dementia care mapping, and usual care. Carers received training in either intervention or continued in their usual style of care provision. Treatment allocation was masked to assessors. The primary outcome measure being assessed was agitation measured by the Cohen-Mansfield agitation inventory (CMAI). Agitation was found to be significantly lower amongst those service users who received person-centred care compared to those receiving usual care. This supported findings of previous studies which showed reductions in agitation measures amongst service users with dementia through the use of a person-centred approach. Cohen- Mansfield reported a reduction in agitation in residents of nursing homes through care techniques personalised on the basis of individuals preferences and needs [8]. In a separate study Sloane and colleagues carried out a randomised control trial of a person-centred approach to bathing and showering older service users with moderate to severe dementia [9]. In terms of a personalised approach, the intervention focused on the preferences of the service user. Measures of discomfort, aggression and agitation declined significantly amongst those receiving the intervention compared to a control group. Are there any problems with this approach? Lambery argues that there remains confusion and ambiguity over the future role of social work in relation to personalistion [10]. He refers to the work of Clarke [11] stating that consumerist stances underpinning personalisation are problematic, in that, based on these principles, it is more likely that educated and articulate service users will be 8
more able to realise their choices than others. Lambery argues that taking into account the physical and cognitive frailty of many service users, this will result in a form of inequality, in that there are likely to be limitations on their ability to exercise choice, and in turn for those choices to result in positive outcomes. A further criticism leveled at the personalisation agenda has been the constraints of the current economic climate [12]. Conclusions There has been an increasing amount of attention given to the merits of personalisation in a policy context. There is a danger however that the philosophy of this concept will not develop sufficiently beyond rhetoric into policy with clear, practical applications. Clarification of the importance and scope of personalisation beyond direct payments or individual budgets must be established. It remains vital that personalisation is seen in broader terms than simply rolling out payments to service users. In terms of the concerns outlined by Clarke above, Age NI would argue that concerns about capacity for decision making are likely to be based on a narrow interpretation of personalisation. As highlighted by person-centred interventions involving service users with alzheimers, a personalised approach is not only achievable, but can also be highly effective. Age NI would also argue that personalisation can still operate in an environment of economic restraint. Many aspects of personalised care cost no additional money to implement and could in fact result in cost savings, though this needs to be established in research. A number of interventions which have used varying approaches with a range of older service users have proven effective in terms of outcomes. There is however an urgent need for more research and interventions of this kind in order to ensure that personalisation is built on a solid evidence base. Cost benefits should also be established. Research with service providers has shown however, that in order to achieve personalisation, a radical change of culture is needed amongst both service purchasers and providers. As noted, there are marked differences in willingness to give flexible help between different independent sector providers. This must be addressed. 9
Age NI would be grateful if you could complete a short questionnaire about this research briefing on the following link; http://www.surveymonkey.com/s/3h67mmw For further information on this briefing, or if you have any other comments, please send queries to the Research Development Manager for Age NI;- amy.veale@ageni.org 10
Bibliography 1. Edvardsson, D, (2008) Person-centred care for people with severe Alzheimer s disease: current status and ways forward. Lancet Neurology. 7 (362-367). 2. Galloway, J. Dignity, Values, Attitudes, and Person-Centred Care. 3. Patmore, C (2004) Quality in home care for older people: Factors to pay heed to, Quality in Ageing and Older Adults, Vol. 5 (32 40) 4. Patmore, C (2004) "Quality in home care for older people: Factors to pay heed to", Quality in Ageing and Older Adults, Vol. 5 (32 40) 5. Patmore, C (2004) "Quality in home care for older people: Factors to pay heed to", Quality in Ageing and Older Adults, Vol. 5 (32 40) 6. Parsons J., et al. (2012) Goal setting as a feature of Homecare Services for Older People: does it make a difference? Age and Ageing 41 (1): 24-29 7. Lynn Chenoweth et al. (2009) Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial. Lancet Neurology 8: 317 25 8. Cohen-Mansfield J, et al. (2007) Non-pharmacological treatment of agitation: a controlled trial of systematic individualised intervention. J Gerontol A Biol Sci Med Sci 62 (908 16) 9. Sloane, PD, et al. (2004) Effects of person-centred showering and the towel bath on bathing associated aggression, agitation and discomfort in nursing home residents with dementia: a randomized controlled trial. J Am Geriatric Soc, 52 (1795-1804). 10. Lambery, M., (2012) Social Work and Personalisation. British Journal of Social Work. 42 (783-792). 11. Clarke, J., et al. (2007) Creating Citizen- Consumers; Changing Publics and Changing Public Services, London, Sage. 12. Lambery, M., (2012) Social Work and Personalisation. British Journal of Social Work. 42 (783-792). 11