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Journal ArticleDOI

Quality of life among older people in Sweden receiving help from informal and/or formal helpers at home or in special accommodation

TL;DR: A need for greater help with ADLs, and a higher number of self-reported diseases and complaints determined low quality of life, whilst a social network (contact with more than three people) and a greater age determined high QoL.
Abstract: The present study describes and compares quality of life (QoL) and factors which predict QoL among people aged 75 years and over who receive help with activities of daily living (ADLs) from formal and/or informal helpers. The subjects were living at home or in special accommodation in Sweden. A postal questionnaire was sent to a randomly selected and age-stratified sample of 8500 people. The response rate was 52.8% (n = 4337), and 1247 people [mean age (+/- SD) = 86.4 +/- 5.9 years] received help and indicated who helped them with ADLs. The findings suggest that a greater age, being a woman, being a widow/widower, a higher number of health-related complaints, needing more help with ADLs and a lower QoL were found among those receiving help in special accommodation in comparison with those receiving help at home. The extent of help was highest among those receiving help in special accommodation. Having help with ADLs every day at home indicated having help from both informal and formal helpers, while respondents receiving help from only informal or only formal helpers received the smallest amount of help with ADLs. A need for greater help with ADLs, and a higher number of self-reported diseases and complaints determined low QoL, whilst a social network (contact with more than three people) and a greater age determined high QoL. However, who the helpers were did not have a significant influence on QoL; it was the extent of help with ADLs that influenced QoL negatively and the density of the social network that influenced QoL positively.

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Citations
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01 Nov 2017
TL;DR: A recent NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers.
Abstract: This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference.

158 citations

Journal ArticleDOI
TL;DR: This study confirms theories suggesting that the last phase of life in old age meant focusing inwards, reflecting on the entire life as a way of completing it as well as enjoying small things and also viewing oneself in the perspective of contributing to the future.

99 citations

Journal ArticleDOI
TL;DR: Quality control standards, which can guide measurement assessment and subsequent data interpretation, are needed to enhance more consistent reporting of the psychometric properties of QoL instruments utilized.
Abstract: Instruments with acceptable measurement properties that support their application to older adults across a range of settings need to be identified. A narrative literature review of empirical studies investigating the conceptualization and measurement of quality of life (QoL) among older adults from 1994 to 2006 was performed. The review focused on evidence provided for conceptual frameworks, QoL definitions, types of measurements utilized and their psychometric properties. Two searches were conducted. The first search conducted in 2004 used Cinahl, Medline, PsycInfo, Embase and Cochrane databases. A supplemental search was conducted in December 2006, which included these bases from 2004 to 2006, and Sociological Abstracts and Anthropological literature base. The review included 47 papers. A total of 40 different measurements were applied in the studies, assessing most frequently functional status and symptoms. The most extensive psychometric evidence was documented for the SF-36. Although construct validity was reported in the majority of studies, minimal empirical evidence was given for other psychometric properties. Further, 87% of the studies lacked a conceptual framework and 55% did not report any methodological considerations related to older adults. Quality control standards, which can guide measurement assessment and subsequent data interpretation, are needed to enhance more consistent reporting of the psychometric properties of QoL instruments utilized. Future work on the development of common QoL assessment models that are both person-centered, causal and multidimensional based on collaborative efforts from professionals interested in QoL from the international gerontological research community are needed.

91 citations

Journal ArticleDOI
TL;DR: A research agenda is suggested that attempts to tease out causal relationships for family involvement, differentiate family roles, and implement longitudinal analyses for a range of family outcomes.
Abstract: PURPOSE: Despite growing research on assisted living (AL) as a residential care option for older adults, the social ramifications of residents' transitions to assisted living is relatively unexplored. This article examines family involvement in AL, including family structures of residents, types of involvement from family members living outside the AL, and outcomes for these family members. DESIGN AND METHODS: We reviewed current literature utilizing the MEDLINE, PSYCINFO, and CINAHL databases to identify AL studies that examined issues pertaining to families or informal care. Following the screening of abstracts, 180 reports were retrieved for further review, and 62 studies were selected for inclusion. RESULTS: Families visit residents frequently and provide a wide range of instrumental assistance but provide only minimal personal care. Studies of family outcomes indicated relatively high satisfaction, but potential care burden as well. IMPLICATIONS: How family care and involvement occurs in AL in relation to formal care provision and whether various types of formal-informal care integration influence family outcomes remains unclear. We suggest a research agenda that attempts to tease out causal relationships for family involvement, differentiate family roles, and implement longitudinal analyses for a range of family outcomes.

64 citations

Journal ArticleDOI
TL;DR: A dyadic approach seems most suitable for dementia care, as focus of care is on the person with dementia and their informal caregivers, and a trusting relationship and a specific person or organization to contact seem to be indicators of best practice.
Abstract: To investigate persons with dementia and their informal caregivers' views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries.

60 citations

References
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Journal ArticleDOI
TL;DR: It is demonstrated not only that older people can talk about, and do think about, quality of life, but also how quality oflife varies for different age groups of the elderly population living at home, in different geographical areas.

580 citations

Journal ArticleDOI
TL;DR: It is concluded that quality of life and health status are distinct constructs, and that the two terms should not be used interchangeably.
Abstract: Despite the increasing acceptance of quality of life (QOL) as a critical endpoint in medical research, there is little consensus regarding the definition of this construct or how it differs from perceived health status. The objective of this analysis was to understand how patients make determinations of QOL and whether QOL can be differentiated from health status. We conducted a meta-analysis of the relationships among two constructs (QOL and perceived health status) and three functioning domains (mental, physical, and social functioning) in 12 chronic disease studies. Instruments used in these studies included the RAND-36, MOS SF-20, EORTC QLQ-30, MILQ and MQOL-HIV. A single, synthesized correlation matrix combining the data from all 12 studies was estimated by generalized least squares. The synthesized matrix was then used to estimate structural equation models. The meta-analysis results indicate that, from the perspective of patients, QOL and health status are distinct constructs. When rating QOL, patients give greater emphasis to mental health than to physical functioning. This pattern is reversed for appraisals of health status, for which physical functioning is more important than mental health. Social functioning did not have a major impact on either construct. We conclude that quality of life and health status are distinct constructs, and that the two terms should not be used interchangeably. Many prominent health status instruments, including utility-based questionnaires and health perception indexes, may be inappropriate for measuring QOL. Evaluations of the effectiveness of medical treatment may differ depending on whether QOL or health status is the study outcome.

577 citations

Journal ArticleDOI
TL;DR: Results are consistent with the hypothesis that lower reported social support is an important reason for decreases in life satisfaction and increases in depressive symptoms found among older adult populations.
Abstract: The relations among physical functioning, social support, depressive symptoms, and life satisfaction were examined in a national sample of 4,734 adults age 65 and older. Regression analyses were used to examine the relative importance of objective and subjective support measures in understanding the relation between physical impairment and quality of life. Impairment was associated with fewer friendship contacts, fewer family contacts, less perceived belonging support, and less perceived tangible aid, but only measures of perceived support predicted depressive symptomatology. A structural equation modeling approach was then used to explore the mediational role of perceived social support in the relation between impairment and quality of life variables. Results are consistent with the hypothesis that lower reported social support is an important reason for decreases in life satisfaction and increases in depressive symptoms found among older adult populations. Implications for understanding the role of social support in attenuating the effects of physical disability in older adults are discussed.

400 citations

Journal ArticleDOI
TL;DR: There are grave doubts about the wisdom of using ‘quality of life’ as an outcome which could influence the lives of patients and it is essential that consensus exists in the scientific and clinical community in order to make decisions on the basis of the results of the application of the measure.
Abstract: Over the past few years, expressions of disquiet about the term ‘Quality of Life’ and the way in which it is applied and measured in clinical settings and in Health Economics have slowly increased. Some of this criticism has arisen from the poor quality of both research and application, some from misleading claims about outcomes and some from the lack of conceptual clarity. Anecdotally, many clinicians comment on the frustration and confusion they feel when asked to deal with the administration of questionnaires which appear to have little or no rationale for being termed measures of ‘quality of life’ and the content of which differs one from the other, implying distinct divisions in definition. Indeed, clinicians are often asked to tolerate situations in relation to questionnaires which they would reject out of hand if they involved clinical measures. It is the first tenet of any scientific enterprise, where measurement is to be attempted, that the object of measurement be precisely and meaningfully defined and the measuring instrument be appropriate and valid for the task. Moreover, where decisions may be made on the basis of the results of the application of the measure it is essential that consensus exists in the scientific and clinical community in order that all concerned know exactly what is being evaluated and that priorities in medical care are set on a standard basis. In relation to quality of life there is little agreement about the meaning of the term itself, there are rival factions each tendentiously urging the adoption of a different approach and a plethora of measures purporting to address ‘quality of life. As a consequence there must be grave doubts about the wisdom of using ‘quality of life’ as an outcome which could influence the lives of patients. The scientific status of quality of life research

291 citations