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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

01 Nov 2004-Health & Social Care in The Community (Wiley-Blackwell)-Vol. 12, Iss: 6, pp 504-516

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.

AbstractThe 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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01 Nov 2017
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.

155 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.
Abstract: Background: Old people's life situation when receiving municipal help and care in their last period of life is sparsely investigated from their own perspective. Objective: The aim of this study was to investigate the experiences of aspects that bring about a good life in the last phase of life among people (75 + years) receiving municipal care. Participants: Older people living in a municipality in Southern Sweden being 75 years or older, receiving help and/or care from the municipality, and having a life-threatening disease and/or receiving palliative care were asked to participate. In all 17 people, 10 women and 7 men, aged 78-100 years were included. Methods: Qualitative interviews, with the emphasis on their present life situation especially what brought about a good life, were performed. The interviews were analysed using qualitative content analysis. Results: The experience was interpreted to be Turning inwards to come to peace with the past, the present and approaching death while being trapped by health complaints. Six categories embraced the experience of aspects that constitute a good life in the last phase of life: Maintaining dignity, Enjoying small things, Feelings of "being at home", Being in the hands of others, trying to adjust, Still being important for other people and Completing life while facing death. Conclusion: This study confirm 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. It also indicated that this phase of life meant being trapped by health complaints and functional limitations. The struggle to maintaining dignity as opposed to being in the hands of others implies that the concept of palliative care may be useful as a framework for providing nursing care to very old people, especially at the end of life.

93 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.

82 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.

56 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.

52 citations


References
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Journal ArticleDOI
TL;DR: A 36-item short-form survey designed for use in clinical practice and research, health policy evaluations, and general population surveys to survey health status in the Medical Outcomes Study is constructed.
Abstract: A 36-item short-form (SF-36) was constructed to survey health status in the Medical Outcomes Study. The SF-36 was designed for use in clinical practice and research, health policy evaluations, and general population surveys. The SF-36 includes one multi-item scale that assesses eight health concepts: 1) limitations in physical activities because of health problems; 2) limitations in social activities because of physical or emotional problems; 3) limitations in usual role activities because of physical health problems; 4) bodily pain; 5) general mental health (psychological distress and well-being); 6) limitations in usual role activities because of emotional problems; 7) vitality (energy and fatigue); and 8) general health perceptions. The survey was constructed for self-administration by persons 14 years of age and older, and for administration by a trained interviewer in person or by telephone. The history of the development of the SF-36, the origin of specific items, and the logic underlying their selection are summarized. The content and features of the SF-36 are compared with the 20-item Medical Outcomes Study short-form.

31,597 citations


Journal ArticleDOI
TL;DR: Twenty cross-sectional and longitudinal tests of empirical validity previously published for the 36-item short-form scales and summary measures were replicated for the 12-item Physical Component Summary and the12-item Mental Component Summary, including comparisons between patient groups known to differ or to change in terms of the presence and seriousness of physical and mental conditions.
Abstract: Regression methods were used to select and score 12 items from the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) to reproduce the Physical Component Summary and Mental Component Summary scales in the general US population (n=2,333). The resulting 12-item short-form (SF-12) achieved multiple R squares of 0.911 and 0.918 in predictions of the SF-36 Physical Component Summary and SF-36 Mental Component Summary scores, respectively. Scoring algorithms from the general population used to score 12-item versions of the two components (Physical Components Summary and Mental Component Summary) achieved R squares of 0.905 with the SF-36 Physical Component Summary and 0.938 with SF-36 Mental Component Summary when cross-validated in the Medical Outcomes Study. Test-retest (2-week)correlations of 0.89 and 0.76 were observed for the 12-item Physical Component Summary and the 12-item Mental Component Summary, respectively, in the general US population (n=232). Twenty cross-sectional and longitudinal tests of empirical validity previously published for the 36-item short-form scales and summary measures were replicated for the 12-item Physical Component Summary and the 12-item Mental Component Summary, including comparisons between patient groups known to differ or to change in terms of the presence and seriousness of physical and mental conditions, acute symptoms, age and aging, self-reported 1-year changes in health, and recovery for depression. In 14 validity tests involving physical criteria, relative validity estimates for the 12-item Physical Component Summary ranged from 0.43 to 0.93 (median=0.67) in comparison with the best 36-item short-form scale. Relative validity estimates for the 12-item Mental Component Summary in 6 tests involving mental criteria ranged from 0.60 to 107 (median=0.97) in relation to the best 36-item short-form scale. Average scores for the 2 summary measures, and those for most scales in the 8-scale profile based on the 12-item short-form, closely mirrored those for the 36-item short-form, although standard errors were nearly always larger for the 12-item short-form.

13,193 citations



Journal ArticleDOI
TL;DR: The 22-item Philadelphia Geriatric Center Morale Scale was subjected to a series of principal component analyses utilizing different item pools and rotating differing numbers of factors, suggesting three consistently reproduced factors.
Abstract: The 22-item Philadelphia Geriatric Center (PGC) Morale Scale was subjected to a series of principal component analyses utilizing different item pools and rotating differing numbers of factors. Subjects were 1086 tenants of federally-assisted housing for the elderly and older people living in the community. Results were compared with analyses of the PGC Scale done by Morris and Sherwood. Consideration of factors defined by the analyses suggested three consistently reproduced factors: Agitation, Attitude Toward Own Aging, and Lonely Dissatisfaction, utilizing 17 of the original items. These results were compared with other multi-dimensional measures of morale: the Bradburn Affect Balance Scale, and morale scales reported by Pierce and Clark, and Schooler. In addition to the dimensions derived from the current study related domains of self-rated health, social accessibility, generalized attitude toward aging, and positive affect were suggested as worthy of further exploration as dimensions of morale.

1,290 citations


Journal ArticleDOI
TL;DR: Empirical evidence is yielded supporting the feasibility of a non-English language reproduction of the SF-36 Health Survey in Sweden and tests of scaling assumptions including hypothesized item groupings were consistently favorable across subgroups, although lower rates were noted in the oldest age group.
Abstract: We document the applicability of the SF-36 Health Survey, which was translated into Swedish using methods later adopted by the International Quality of Life Assessment (IQOLA) Project procedures. To test its appropriateness for use in Sweden, it was administered through mail-out/mail-back questionnaires in seven general population studies with an average response rate of 68%. The 8930 respondents varied by gender (48.2% men), age (range 15-93 years, mean age 42.7), marital status, education, socio-economic status, and geographical area. Psychometric methods used in the evaluation of the SF-36 in the U.S. were replicated. Over 90% of respondents had complete items for each of the eight SF-36 scales, although more missing data were observed for subjects 75 years and over. Scale scores could be computed for the vast majority of respondents (95% and over); slightly fewer in the oldest subgroup. Item-internal consistency was consistently high across socio-demographic subgroups and the eight scales. Most reliability estimates exceeded the 0.80 level. The highest reliability was observed for the Bodily Pain Scale where all subgroups met the 0.90 level recommended for individual comparisons; coefficients at or above 0.90 were also observed in most subgroups for the Physical Functioning Scale. Tests of scaling assumptions including hypothesized item groupings, which reflect the construct validity of scales, were consistently favorable across subgroups, although lower rates were noted in the oldest age group. In conclusion, these studies have yielded empirical evidence supporting the feasibility of a non-English language reproduction of the SF-36 Health Survey. The Swedish SF-36 is ready for further evaluation.

1,290 citations