University of Sheffield. Department of Sociological Studies. ESRC Growing Older
Publication year:
2001
Pagination:
24p.
Place of publication:
Sheffield
Contains abstracts of papers cited. Part of the Growing Older Programme Occasional Paper series.
Contains abstracts of papers cited. Part of the Growing Older Programme Occasional Paper series.
Extended abstract:
Author
MARTIMO Kristiina;
Title
Quality of life: an annotated bibliography. Publisher
University of Sheffield. Department of Sociological Studies. ESRC Growing Older Programme, 2001. Series
Summary
This bibliography contains key references on quality of life and quality of life in old age.
Context
The rising numbers of older people, the ‘baby boomers’, are and ideal generation on which to base research aimed at gaining a comprehensive understanding of the views of older people about the conditions which can achieve a good quality of life in later years. If social science researchers were able to agree on theoretical principles which could be used to build a multi-dimensional measure including all major components of quality of life, such an instrument would make comparative and longitudinal studies possible and the data from all these studies would be compatible, which would give us large amounts of interesting information on what constitutes good quality of life for older people and help to guide social policy decisions towards improving the quality of everyone’s old age.
Method
Contents
The bibliography does not pretend to be exhaustive but tries to provide an introduction to some of the literature most relevant to the Growing Older Programme. The articles result from searches on quality of life, life satisfaction, well-being and quality of life of older people. They are organised according to themes, beginning with a look back at the origins of the concept of quality of life, through economic and social indicators and the problems of implementing these in social policy. Next there are comparative approaches, examining the definition of basic need difficulties in finding common ground in what counts as universal well-being, wider issues concerning human development and differences in individualist and collectivist societies. Then comes a look at the varied ways of measuring quality of life with subjective and objective indicators, defining the levels of domains under which quality of life would be impossible and the difficulties facing policy makers in trying to influence the quality of people’s lives. The next section turns to health status evaluation and the many interpretations of quality of life as a measurable concept. Then comes how quality of life of older people has influenced social gerontology and the need to develop a measure which would make it possible to compare older people’s quality of life in similar and different settings., followed by a look at Hughes’ quality of life model and the multi-domain continuum through social indicators of well-being and enhancing the quality of extended life years. The next section looks at the critique of quality of life scales for older people by Gubrium and Lynott, who argue that the image of the life satisfaction of older people influences its measurement, compared with the real satisfactions and experiences of their everyday lives. The final section looks at age and happiness, starting with definitions of successful ageing, looking at intimacy as a critical variable, activity theory of ageing, happiness and social participation, chronological age and its effect on well-being and the positive and negative affect by age. All entries have abstracts.
Subject terms:
literature reviews, models, older people, quality of life, health needs;
This report explores the consequences of being an unpaid carer of older people, and identifies evidence about how best to support this group of carers. To address these aims, a rapid review of existing evidence reviews (an ‘umbrella review’) was conducted, alongside analysis of data on carers (for any population) from the NHS England GP Patient Survey. The main findings are: there is mounting evidence that unpaid caring should be considered a social determinant of health; carers experience poor physical and mental health but also have unmet care needs themselves; different groups of carers may have different support needs; a lack of clear and robust evidence about how best to support people caring for older populations, and gaps in evidence on key outcomes. This report proposes a logic model as a tool for evaluating the impact of carer interventions. It also includes ‘access enablers’ as important in ensuring that carers are connected with relevant services and interventions on offer. Social prescribing is one of these enablers.
(Edited publisher abstract)
This report explores the consequences of being an unpaid carer of older people, and identifies evidence about how best to support this group of carers. To address these aims, a rapid review of existing evidence reviews (an ‘umbrella review’) was conducted, alongside analysis of data on carers (for any population) from the NHS England GP Patient Survey. The main findings are: there is mounting evidence that unpaid caring should be considered a social determinant of health; carers experience poor physical and mental health but also have unmet care needs themselves; different groups of carers may have different support needs; a lack of clear and robust evidence about how best to support people caring for older populations, and gaps in evidence on key outcomes. This report proposes a logic model as a tool for evaluating the impact of carer interventions. It also includes ‘access enablers’ as important in ensuring that carers are connected with relevant services and interventions on offer. Social prescribing is one of these enablers.
(Edited publisher abstract)
Subject terms:
carers, carer views, health inequalities, older people, health needs, mental health, service provision;
Quality in Ageing and Older Adults, 20(4), 2019, pp.162-178.
Publisher:
Emerald
Purpose: Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach: A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings: Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value: This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers.
(Edited publisher abstract)
Purpose: Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach: A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings: Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value: This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers.
(Edited publisher abstract)
Subject terms:
literature reviews, ageing, carers, learning disabilities, health needs, needs, older people;
Background: Health care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models. Methods: Iterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included. Results: We included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM. Conclusions: To embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.
(Edited publisher abstract)
Background: Health care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models. Methods: Iterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included. Results: We included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM. Conclusions: To embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.
(Edited publisher abstract)
Subject terms:
decision making, literature reviews, person-centred care, older people, complex needs, health needs, adult social care;
All Wales Alliance for Research and Development in Health and Social Care
Publication year:
2009
Pagination:
71p., bibliog.
Place of publication:
Cardiff
This literature review, commissioned by the Welsh Office for Research and Development in Health and Social Care, identified many existing, international sources of evidence-based research and grey literature between 1985-2009 on the heath, housing and social care needs of lesbian, gay, bisexual and transgender (LGBT) older people, including those from other minority groups with differing ethnicity or language and disabled people. It also identified areas for future research and informed policy makers in the Welsh Assembly Government (WAG) of 6 key recommendations which are summarised. Many of the health, housing and social needs of older LGBT people will be the same as other older members of the community in Wales, but because older LGBT people suffer from discrimination in many different forms such as homophobia, trans-phobia, bi-phobia, assumption that heterosexism is the norm and other forms of sexuality require healing, and ageism, there have been consequences for the quality of communication, service and care provided to these groups. Older LGBT people may conceal their sexuality because of this and as such their needs, which evidence from younger groups suggests may be different, in terms of substance misuse, use of heath services, and housing for example, will unlikely be addressed.
This literature review, commissioned by the Welsh Office for Research and Development in Health and Social Care, identified many existing, international sources of evidence-based research and grey literature between 1985-2009 on the heath, housing and social care needs of lesbian, gay, bisexual and transgender (LGBT) older people, including those from other minority groups with differing ethnicity or language and disabled people. It also identified areas for future research and informed policy makers in the Welsh Assembly Government (WAG) of 6 key recommendations which are summarised. Many of the health, housing and social needs of older LGBT people will be the same as other older members of the community in Wales, but because older LGBT people suffer from discrimination in many different forms such as homophobia, trans-phobia, bi-phobia, assumption that heterosexism is the norm and other forms of sexuality require healing, and ageism, there have been consequences for the quality of communication, service and care provided to these groups. Older LGBT people may conceal their sexuality because of this and as such their needs, which evidence from younger groups suggests may be different, in terms of substance misuse, use of heath services, and housing for example, will unlikely be addressed.
Subject terms:
housing, LGBT people, needs, older people, social care, social care provision, health needs;
Health and Social Care in the Community, 30(4), 2022, pp.1286-1306.
Publisher:
Wiley
Despite apparent need, many older people with cognitive impairment and/or mental health needs do not fully engage with social care. This can manifest in different ways, including passive or aggressive attempts to avoid or repel care workers. However, little is known about how to support such individuals in their own homes and deliver effective care. Against this background, the researchers undertook a scoping review with a view to developing a preliminary theory of change suggesting how care might be modified to engage this client group. The most recent search was conducted on 21/04/21. Papers were included if they (i) focused on older people (65+) living at home with social care needs and (ii) described difficulties/problems with the provision/receipt of social care associated with individuals’ mental health needs. Twenty-six citations were identified through electronic database searches and reference screening, and the results were charted according to key theory of change concepts (long-term outcomes, preconditions, interventions, rationale and assumptions). All the included papers were related to people with dementia. Four subgroups of papers were identified. The first highlights those external conditions that make it more likely an intervention will be successful; the second describes specific interventions to engage older people who by virtue of their mental health needs have not engaged with social care; the third explores what services can be done to increase service uptake by older people with mental health needs and their caregivers more generally; and the fourth details theoretical approaches to explaining the behaviour of people with dementia. Each provides information that could be used to inform care delivery and the development of interventions to improve engagement with health and social care for these individuals. The study concludes that different framing of engagement difficulties, such as that offered through positioning theory, may assist in future service design.
(Edited publisher abstract)
Despite apparent need, many older people with cognitive impairment and/or mental health needs do not fully engage with social care. This can manifest in different ways, including passive or aggressive attempts to avoid or repel care workers. However, little is known about how to support such individuals in their own homes and deliver effective care. Against this background, the researchers undertook a scoping review with a view to developing a preliminary theory of change suggesting how care might be modified to engage this client group. The most recent search was conducted on 21/04/21. Papers were included if they (i) focused on older people (65+) living at home with social care needs and (ii) described difficulties/problems with the provision/receipt of social care associated with individuals’ mental health needs. Twenty-six citations were identified through electronic database searches and reference screening, and the results were charted according to key theory of change concepts (long-term outcomes, preconditions, interventions, rationale and assumptions). All the included papers were related to people with dementia. Four subgroups of papers were identified. The first highlights those external conditions that make it more likely an intervention will be successful; the second describes specific interventions to engage older people who by virtue of their mental health needs have not engaged with social care; the third explores what services can be done to increase service uptake by older people with mental health needs and their caregivers more generally; and the fourth details theoretical approaches to explaining the behaviour of people with dementia. Each provides information that could be used to inform care delivery and the development of interventions to improve engagement with health and social care for these individuals. The study concludes that different framing of engagement difficulties, such as that offered through positioning theory, may assist in future service design.
(Edited publisher abstract)
Subject terms:
service uptake, older people, cognitive impairment, community care, health needs, home care, intervention, literature reviews, mental health problems, service provision;
Background: As the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs? Methods: We conducted a scoping review guided by a refinement of the Arksey & O’Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched 7 electronic databases. The data were summarized using thematic analysis. Results: Thirty-six studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; 5 studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults’ complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC. Conclusion: The review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults’ needs were their level of education/health literacy and their socioeconomic status.
(Edited publisher abstract)
Background: As the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs? Methods: We conducted a scoping review guided by a refinement of the Arksey & O’Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched 7 electronic databases. The data were summarized using thematic analysis. Results: Thirty-six studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; 5 studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults’ complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC. Conclusion: The review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults’ needs were their level of education/health literacy and their socioeconomic status.
(Edited publisher abstract)
Subject terms:
health needs, literature reviews, needs, long term conditions, older people, carers, comorbidity, access to information;
International Journal of Geriatric Psychiatry, 33(2), 2018, pp.252-262.
Publisher:
Wiley
Objective: The existing literature on ageing prisoners tends to focus on such aspects as diagnosis and physical ill-health. In contrast, the experience of imprisonment from the perspective of ageing prisoners has received less attention. Grounded in a Good Lives Model theoretical framework, the authors reviewed and meta-synthesised literature around their experience of life in prison, its impact on their wellbeing and how prison services are currently addressing their complex needs. They further identify potential areas of improvement. Methods: 1. Systematic search on Assia, PsycInfo, MedLine, Embase, Web of Science, Google and Gov.uk. 2. Extraction and categorisation of data on NVivo. 3. Development of themes through thematic analysis and meta-synthesis. 4. Identification of potential areas of improvement. Results: The authors selected 25 studies for their review, of which 13 were from the USA, seven from the UK, two from Australia and one each from Ireland, Switzerland and Israel. Three themes were identified: the hardship of imprisonment, addressing health and social care needs, and the route out of prison. Conclusions: Ageing prisoners have unique and complex health and social care needs which, to varying degree across different countries, are mostly unmet. Promising initiatives to address their needs are emerging, but, at present time, the overall experience of incarceration for the ageing prisoner is quite poor, given the inconsistent physical, emotional and social care support offered from prison intake to release and beyond.
(Edited publisher abstract)
Objective: The existing literature on ageing prisoners tends to focus on such aspects as diagnosis and physical ill-health. In contrast, the experience of imprisonment from the perspective of ageing prisoners has received less attention. Grounded in a Good Lives Model theoretical framework, the authors reviewed and meta-synthesised literature around their experience of life in prison, its impact on their wellbeing and how prison services are currently addressing their complex needs. They further identify potential areas of improvement. Methods: 1. Systematic search on Assia, PsycInfo, MedLine, Embase, Web of Science, Google and Gov.uk. 2. Extraction and categorisation of data on NVivo. 3. Development of themes through thematic analysis and meta-synthesis. 4. Identification of potential areas of improvement. Results: The authors selected 25 studies for their review, of which 13 were from the USA, seven from the UK, two from Australia and one each from Ireland, Switzerland and Israel. Three themes were identified: the hardship of imprisonment, addressing health and social care needs, and the route out of prison. Conclusions: Ageing prisoners have unique and complex health and social care needs which, to varying degree across different countries, are mostly unmet. Promising initiatives to address their needs are emerging, but, at present time, the overall experience of incarceration for the ageing prisoner is quite poor, given the inconsistent physical, emotional and social care support offered from prison intake to release and beyond.
(Edited publisher abstract)
Quality in Ageing and Older Adults, 15(4), 2014, pp.187-196.
Publisher:
Emerald
Design/methodology/approach: Using information obtained from academic literature, government statistics and other publications from relevant organisations, this paper discusses older people who are in groups that are not readily visible to policy makers and practitioners. The authors investigated one 'invisible' group each and comparisons and conclusions were then made collaboratively. The six underserved populations covered were older people with physical disabilities, learning disabilities, those from LGBT communities, older prisoners, older people with chronic long-term mental health problems (in particular depression and dementia) and those who are homeless. The issues of health needs, access to health care and provision of services are discussed.
Findings: Many groups of older people seem to be absent from statistics and from policy making. The paper suggests that there needs to be more research to identify the scale of any problems and how they may be solved.
Practical implications: There are practical implications for health and social care professionals if they do not recognise that there are groups in society about whom little is known. Lack of knowledge and empathy may affect their approach to these groups.
(Edited publisher abstract)
Design/methodology/approach: Using information obtained from academic literature, government statistics and other publications from relevant organisations, this paper discusses older people who are in groups that are not readily visible to policy makers and practitioners. The authors investigated one 'invisible' group each and comparisons and conclusions were then made collaboratively. The six underserved populations covered were older people with physical disabilities, learning disabilities, those from LGBT communities, older prisoners, older people with chronic long-term mental health problems (in particular depression and dementia) and those who are homeless. The issues of health needs, access to health care and provision of services are discussed.
Findings: Many groups of older people seem to be absent from statistics and from policy making. The paper suggests that there needs to be more research to identify the scale of any problems and how they may be solved.
Practical implications: There are practical implications for health and social care professionals if they do not recognise that there are groups in society about whom little is known. Lack of knowledge and empathy may affect their approach to these groups.
(Edited publisher abstract)
Subject terms:
older people, homelessness, LGBT people, learning disabilities, physical disabilities, disabilities, health needs, literature reviews, mental health problems, prisoners;
Journal of Dementia Care, 11(4), July 2003, pp.33-39.
Publisher:
Hawker
The authors review current research on provision of services to older people and their carers in remote and rural areas across the UK, with specific reference to Scotland. They consider the policy implications for dementia services in this context.
The authors review current research on provision of services to older people and their carers in remote and rural areas across the UK, with specific reference to Scotland. They consider the policy implications for dementia services in this context.
Subject terms:
literature reviews, models, older people, policy formulation, rural areas, social care provision, carers, dementia, health needs;