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Research partnerships – embracing user involvement: practical considerations and reflections
- Author:
- O'SULLIVAN Roger
- Journal article citation:
- Quality in Ageing and Older Adults, 19(4), 2018, pp.220-231.
- Publisher:
- Emerald
Purpose: Academic researchers are increasingly required, and rightly so, to demonstrate the impact of their work beyond the gates of the university. This has led to an increasing focus, especially in response to funded calls, on developing research partnerships that cross disciplines, sectors and borders to help address our grand societal challenges. The purpose of this paper is to set out learning from the work of the organisation the Centre for Ageing Research and Development in Ireland (CARDI) and reflections on how to bring forward effective research partnerships involving users. Design/methodology/approach: This paper is based on reflections and learning from the organisation CARDI which delivered a highly successful programme of interdisciplinary, cross-sectoral and cross-country research partnerships in both rural and urban areas between 2007 and 2015, across the island of Ireland. Findings: Research partnerships that wish to involve users require time, commitment, support, understanding and a willingness to change and be challenged. This paper highlights that there are methodological, philosophical, moral, economic and of course, practical aspects to be considered. Research limitations/implications: This reflective paper is based on a case study from the island of Ireland during the period 2007–2015 working in the area of ageing and older people. Practical implications: The author emphasises that for research partnerships involving users to be successful, they need to not only consider the most effective research methods but also focus on the overarching purpose of the work and adopt an ethos and practice that maximises each partner’s knowledge and expertise to their full potential. Social implications: This reflective paper focused on the characteristics associated with partnership success, i.e. communication style, values, philosophy and practice and argues that establishing effective and inclusive partnerships requires time, the appropriate framework and reviewing the process on an ongoing basis. Originality/value: The issue of user involvement in research partnerships requires much more consideration. Researchers, government, funders, businesses and service providers are increasingly recognising the benefits of “user” involvement to help design programmes and services that are most effective. (Edited publisher abstract)
Priorities for long-term care resource allocation in England: actual allocation versus the views of directors of service and older citizens
- Authors:
- CLARKSON Paul, et al
- Journal article citation:
- Journal of Long-Term Care, September 2018, pp.13-23. Online only
- Publisher:
- King's College London
- Place of publication:
- London
Context: Decisions about resource allocation in long-term care are a perennial issue. The basis for deciding between different needs in prioritising allocation is contested. In England, this debate has crystallised with the advent of selfdirected support, where individuals’ expressed preferences drive resources. Objectives: To compare perceptions of the priority given to needs for resource allocation in long-term care of older people by two stakeholder groups, compared with actual resource allocation. Methods: Survey data, eliciting perspectives of senior service managers and older citizens, were used to rank the perceived importance of eight needs-related outcomes. Actual resource allocation from 17 local authorities was also modelled against these outcomes. A variable importance metric was used to rank the importance of these outcomes in determining actual resource allocation. Findings from each data collection were compared. Findings: Differences in prioritisation of needs emerged between stakeholders compared with actual allocation. Older citizens and actual allocation prioritised basic and instrumental activities of daily living (ADLs). Directors’ rankings were more distinct, still prioritising basic ADLs, but ranking psychological well-being higher and instrumental ADLs lower. Limitations: The model of actual allocation could not account for political and bureaucratic factors influencing resource allocation, nor the complexity of certain needs that might incur greater resources. Implications: Discretion continues to influence resource allocation, which remains a contested area. Directors must account for overall spend and other extrinsic factors to maintain sustainability, whereas older citizens prioritise instrumental ADLs, despite these being considered lower priority in eligibility decisions. Overall, ADLs remain important drivers of allocation. (Edited publisher abstract)
Frailty and social care: over- or under-familiar terms?
- Authors:
- MANTHORPE Jill, et al
- Journal article citation:
- Social Policy and Society, 17(1), 2018, pp.23-33.
- Publisher:
- Cambridge University Press
Definitions of frailty are much debated. The focus of this article is on the representation of frailty; who employs the terms ‘frail’ or ‘frailty’ in social care, about whom and with what meanings? The authors report secondary analysis of interview data from two waves of a longitudinal study starting in 2008. Study participants were 240 social care managers/practitioners working in four English localities. Social care managers and practitioners did not talk at length about frailty as characterising the increasing needs of care users. The minority who talked about frailty used the term in three ways: describing a physical state not including dementia; describing a stable state, as distinct from those dying; and as a combination of physical and mental disabilities (i.e. dementia). Differences among the participants in this study about the meaning of frailty could have implications for policy makers and for communication with other staff, health professionals, older people and their relatives. (Edited publisher abstract)
Being disconnected from life: meanings of existential loneliness as narrated by frail older people
- Authors:
- SJOBERG Marina, et al
- Journal article citation:
- Aging and Mental Health, 22(10), 2018, pp.1357-1364.
- Publisher:
- Taylor and Francis
Objectives: This study illuminated the meanings of existential loneliness (EL) as narrated by frail older people. Method: Data were collected through individual narrative interviews with 23 people 76–101 years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naïve reading and two structural analyses as a basis for a comprehensive understanding of EL. Result: Four themes were identified related to meanings of EL: (1) being trapped in a frail and deteriorating body; (2) being met with indifference; (3) having nobody to share life with; and (4) lacking purpose and meaning. These intertwined themes were synthesized into a comprehensive understanding of EL as ‘being disconnected from life’. Conclusion: Illness and physical limitation affects access to the world. When being met with indifference and being unable to share one's thoughts and experiences of life with others, a sense of worthlessness is reinforced, triggering an experience of meaninglessness and EL, i.e. disconnection from life. It is urgent to develop support strategies that can be used by health care professionals to address older people in vulnerable situations, thereby facilitating connectedness. (Publisher abstract)
‘They must help if the doctor gives them to you’: a qualitative study of the older person’s lived experience of medication-related problems
- Authors:
- PAREKH Nikesh, et al
- Journal article citation:
- Age and Ageing, 48(1), 2019, pp.147-151.
- Publisher:
- Oxford University Press
Objective: Medication-related problems (MRP) are common for older adults and can lead to harm. The older person’s perspective on MRP has been seldom reported in published literature. This study explored the lived experience of MRP in older adults with varying functional levels, focussing on the hospital discharge period. Design, setting, participants: This qualitative study was conducted in Brighton and Hove, UK. A purposive sample of 20 older people with experience of MRP, involving carers, took part in focus groups and semi-structured interviews. Data were thematically analysed using a ‘framework’ approach. Results: Four major themes associated with MRP were identified; (1) experience of the healthcare system, (2) practicalities of using medicines, (3) management of medication problems and (4) participant beliefs. Participants encountered problems in communication with healthcare professionals such as passive listening and paternalistic consultations. A conflict was acknowledged between participants’ implicit trust in the healthcare system and their negative experience of MRP. Participants felt vulnerable around hospital discharge, describing reduced capacity to comprehend information, pressured discharge circumstances and lack of integrated care in the community. Drug formulations, packaging and information leaflets were felt to be poorly tailored to the needs of older people. Conclusions: The lived experience of older people with MRP in this study was multifaceted and complex. Participants felt communication was poor around hospital discharge, and insufficient support with medicines was offered in the community when problems arose. Harm due to MRP might be reduced if the contributory factors described by patients inform clinical and policy-level intervention. (Publisher abstract)
Dying in long-term care: perspectives from sexual and gender minority older adults about their fears and hopes for end of life
- Authors:
- KORTES-MILLER Katherine, et al
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 14(2-3), 2018, pp.209-224.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
As lesbian, gay, bisexual, transgender, and queer (LGBTQ+) communities age, many individuals expect a need to enter the long-term care system toward the end of life. Not unlike most ageing Canadians, this anticipation is met with concern and fear. However, previous research suggests that older LGBTQ + individuals have unique fears often related to personal safety and discrimination. This qualitative study examined the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Data were collected from three focus groups in Ontario, Canada, and analysed using inductive thematic analysis. Specific and frequent reference to fear of entering long-term care homes was common across all focus groups, as participants anticipated: social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The results from this study, therefore, emphasise the need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to work toward allaying fears and creating supportive and inclusive long-term care environments. (Edited publisher abstract)
Narrative Interest Standard: a novel approach to surrogate decision-making for people with dementia
- Author:
- WILKINS James M.
- Journal article citation:
- Gerontologist, 58(6), 2018, p.1016–1020.
- Publisher:
- Oxford University Press
Dementia is a common neurodegenerative process that can significantly impair decision-making capacity as the disease progresses. When a person is found to lack capacity to make a decision, a surrogate decision-maker is generally sought to aid in decision-making. Typical bases for surrogate decision-making include the substituted judgment standard and the best interest standard. Given the heterogeneous and progressive course of dementia, however, these standards for surrogate decision-making are often insufficient in providing guidance for the decision-making for a person with dementia, escalating the likelihood of conflict in these decisions. In this article, the narrative interest standard is presented as a novel and more appropriate approach to surrogate decision-making for people with dementia. Through case presentation and ethical analysis, the standard mechanisms for surrogate decision-making for people with dementia are reviewed and critiqued. The narrative interest standard is then introduced and discussed as a dementia-specific model for surrogate decision-making. Through incorporation of elements of a best interest standard in focusing on the current benefit–burden ratio and elements of narrative to provide context, history, and flexibility for values and preferences that may change over time, the narrative interest standard allows for elaboration of an enriched context for surrogate decision-making for people with dementia. More importantly, however, a narrative approach encourages the direct contribution from people with dementia in authoring the story of what matters to them in their lives. (Publisher abstract)
“It’s important, but…”: perceived barriers and situational dependencies to social contact preferences of nursing home residents
- Authors:
- ABBOTT Katherine M., et al
- Journal article citation:
- Gerontologist, 58(6), 2018, p.1126–1135.
- Publisher:
- Oxford University Press
Background and Objectives: U.S. Nursing homes (NH) are shifting toward a person-centred philosophy of care, where staff understand each residents preferences, goals and values, and seek to honor them throughout the care delivery process. Social interactions are a major component of life and while low rates of social interactions are typically found among NH residents, little research has examined resident preferences for specific types of social interactions. The purpose of this study is to explore, from the perspective of the NH resident, barriers to social contact preferences and situations when social preferences change. Research Design and Methods: Two interviews were conducted with 255 NH residents 3 months apart, recruited from 32 NHs using 13 social-contact items from the Preferences for Everyday Living Inventory-NH. Results: Content analysis of 1,461 spontaneous comments identified perceived barriers to preference fulfillment along with reasons why residents would change their mind about the importance of a preference (situational dependencies). Nearly 50% of social preferences for choosing a roommate, having regular contact with friends, giving gifts, and volunteering were associated with barriers. Social preferences were likely to change based upon the quality of the social interaction and the resident’s level of interest. Discussion and Implications: Knowledge of barriers regarding social preferences can inform care efforts vital to advancing the delivery of person-centred care. In addition, understanding the reasons why NH resident preferences change based upon context can help providers with staff training leading to individualised care and develop meaningful social programmes that are in line with resident preferences. (Edited publisher abstract)
Direct payments for older adults in an age of austerity
- Authors:
- LOCKE Phillipa, WEST Karen
- Journal article citation:
- Ethics and Social Welfare, 12(3), 2018, pp.216-228.
- Publisher:
- Taylor and Francis
- Place of publication:
- Abingdon
Direct payments are a form of personalisation in which service users take full control of the organisation and management of their own care. This is considered to be a method that maximises autonomy choice and control. This article sets out findings from a study commissioned in 2016 by a local authority (LA) in England to explore older people’s views of direct payments (DPs) for social care. Semi-structured interviews were undertaken with older people who were in receipt of DPs as well as older people who were receiving managed care packages. At the beginning of the project, the discussion took place with LA staff to set out themes to be explored, however, after collecting data it became clear that some themes bore little relevance to the lived experiences of those receiving DPs. The commissioned research was intended to explore the views of older citizens, but what it found was a chasm between the LA and its older citizens in understandings of needs and the capacity of DPs to meet them that is possibly indicative of the state of social care in an age of austerity.
What does client ‘engagement’ mean in aged care? An analysis of practice
- Authors:
- PETRIWSKYJ Andrea, GIBSON Alexandra, WEBBY Glenys
- Journal article citation:
- Ageing and Society, 38(7), 2018, pp.1350-1376.
- Publisher:
- Cambridge University Press
Client engagement is an important part of contemporary aged care. However, the extent to which decisions are delegated to the older person, and the scope of issues about which decision making occurs, vary. The types of engagement that are offered to, and taken up by, aged-care clients have implications for the extent of power and influence older people hold. This paper reports on a qualitative study conducted in a large Australian service provider. It identifies the forms that client engagement takes in the aged-care context, the roles for staff and older people that are enacted through these activities, and the implications these have for power relationships and older people's influence. An inverse relationship was seen between the depth and scope of client influence, but a desire to address this suggested potential spaces for greater empowerment. A relationship was evident between the retention of control by staff and the perceived effectiveness of existing engagement strategies, highlighting the limitations of traditional power dynamics in engagement practice. An expanded model of engagement in aged care is proposed that recognises the foundational role of connection building as a facilitator of greater empowerment for older people. Implications for theory regarding engagement in aged care, and the practice of engagement in aged-care organisations, are discussed. (Edited publisher abstract)