Magdalena Andersson

Bio: Magdalena Andersson is an academic researcher from Swedish Institute. The author has contributed to research in topics: Next of kin & Health care. The author has an hindex of 8, co-authored 12 publications receiving 307 citations. Previous affiliations of Magdalena Andersson include Lund University.

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

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.

The experience of being next of kin to an older person in the last phase of life.

Abstract: Objective:The aim of the study was to investigate the experience of being next of kin to an older person in the last phase of life as narrated after the older person's death.Method:Qualitative interviews were performed with the next of kin (n = 17) to people aged 75 years and older who had recently died and had received help and/or care from the municipality in the last phase of life. Eleven women and six men participated, of whom seven were spouses, nine were children, and one was a grandchild. The interviews were analysed using qualitative content analysis.Results:The experience of the next of kin could be understood as being a devoted companion during the transition toward the inevitable end, embracing the categories of living in the shadow of death; focusing on the needs of the dying person, making adjustments to everyday life; feeling the major responsibility; struggling with the health and social care system; and gaining strength from support.Significance of results:Being next of kin to an old person at the end of life means being a devoted companion during the transition toward the inevitable end, including the feeling of bearing the major responsibility and the need to be acknowledged by professionals. This study points to the importance of having access to professional care when it is needed, to complement and support the next of kin when his or her own resources and strength falter. This also includes support to enable the next of kin to remain involved in the care of his or her loved ones, thereby fulfilling their own wishes. (Less)

Health care consumption and place of death among old people with public home care or in special accommodation in their last year of life

Abstract: Background and aims: Developing care for older people in the last phase of life requires knowledge about the type and extent of care and factors associated with the place of death. The aim of this study was to examine age, living conditions, dependency, care and service among old people during their last year of life, but also their place of death and factors predicting it. Methods: The sample (n=1198) was drawn from the care and services part of the Swedish National Study on Ageing and Care (SNAC). Criteria for inclusion were being 75+ years, dying in 2001–2004, and having public care and services at home or in special accommodation. Results: In the last year of life, 82% of persons living at home and 51% living in special accommodation were hospitalized; median stays were 10 and 6.7 days respectively. Those living at home were younger and less dependent in ADL than those living in special accommodation. Those living at home and those having several hospital stays more often died in hospital. In the total sample, more visits to physicians in outpatient care predicted dying in hospital, whereas living in special accommodation and PADL dependency predicted dying outside hospital. Conclusions: Old people in their last year of life consumed a considerable amount of both municipal care and outpatient and in-hospital medical care, especially those living at home, which in several cases ended with death in hospital.

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care.

Abstract: This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.

Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study

Abstract: Background:Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice.Aims:To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice.Design:Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach.Setting/participants:75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK.Results:Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative an...

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

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.

What does quality of life mean to older adults? A thematic synthesis.

Abstract: Background Consideration of older adults' quality of life (QoL) is becoming increasingly important in the evaluation, quality improvement and allocation of health and social care services. While numerous definitions and theories of QoL have been proposed, an overall synthesis of the perspective of older adults themselves is lacking. Methods Qualitative studies were identified in PubMed, Ebsco/Psycinfo and Ebsco/CINAHL, through a search on 28 November 2018. Articles needed to meet all of the following criteria: (i) focus on perceptions of QoL, (ii) older adults living at home as main participants, (iii) use of qualitative methodology, (iv) conducted in a Western country and (v) published in English (vi) not focused on specific patient groups. A thematic synthesis was conducted of the selected studies, using the complete 'findings/results' sections from the papers. Results We included 48 qualitative studies representing the views of more than 3,400 older adults living at home in 11 Western countries. The QoL aspects identified in the synthesis were categorized into nine QoL domains: Autonomy, role and activity, health perception, relationships, attitude and adaptation, emotional comfort, spirituality, home and neighbourhood, and financial security. The results showed that although different domains can be distinguished, these are also strongly connected. Conclusion QoL can be expressed in a number of domains and related subthemes that are important for older adults living at home. The findings further support that the concept of QoL should be seen as a dynamic web of intertwined domains.