Support of older people living alone, in particular until the last stage of life, comes along with multiple efforts. Respectful and supporting relationships between professional carers and non-kin-carers are vital to keep non-kin-carers involved.
Background
A growing number of older people, mainly women, live in single households. They represent a vulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end of life. Non-kin-carers can play an essential role in supporting individuals’ preferences to stay at home. In research little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay at home even at the end of life. This paper aims to introduce the research protocol.
Methods
We plan to apply a qualitative longitudinal study to better understand how older people living alone and their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We will conduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20–25 complete data sets and up to 200 personal interviews were planned. These will be complemented by regular telephone contacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructing case trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshops shall assure quality and support knowledge transfer.
Discussion
This study protocol aims to guide research in a field that is difficult to approach, with regard to its topic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will be enhanced, which is of major relevance for future care planning. With investment in additional reflexivity and communication procedures innovative results and robust knowledge are expected outcomes.
In the spring of 2020, the Austrian government introduced COVID-19 containment policies that had various impacts on older people living alone and their care arrangements. Seven qualitative telephone interviews with older people living alone were conducted to explore how they were affected by these policies. The findings show that the management of everyday life and support was challenging for older people living alone, even though they did not perceive the pandemic as a threat. To better address the needs of older people living alone, it would be important to actively negotiate single measures in the area of conflict between protection, safety and assurance of autonomy.
Non-kin carers face several challenges and have to deal with increasing needs for physical care towards the end of life. Palliative care services are most often involved at this phase. More research is needed to better understand the limits as well as ressources of non-kin carers and the interplay between them and professional carers.
Non‐kin carers provide vital resources for older people living alone with increasing care needs, especially if they cannot rely on the support of family members. However, this kind of commitment presents numerous challenges throughout the care trajectory and beyond. To explore these aspects in more depth, a qualitative study was designed including a retrospective interpretation of interview data with non‐kin carers (n = 15) and additional in‐depth interviews (n = 8) with people who had cared for an older person living alone with no family nearby. Analyses of the verbatim transcriptions followed coding procedures and were supported by MaxQDA software. Our findings demonstrate that non‐kin carers had to negotiate personal boundaries continuously over the end‐of‐life trajectory to deal with the increasing complexity of care demands and overburdening situations. Following the older person's death, non‐kin carers were involved in funeral arrangements and settled practical or legal matters when no family members were available or had little inclination to contribute. The findings highlight that non‐kin carers make a great effort to safeguard the interests and needs of older people living alone, ensuring their autonomy and dignity towards the end of life and beyond. However, the burdens experienced require future research to better understand the support needs of non‐kin carers providing end‐of‐life care for an older person living alone.
Zusammenfassung. Hintergrund: Bei korrekter Einnahme der antiretroviralen Therapie gilt HIV / AIDS als eine Erkrankung mit chronischem Verlauf, die ein nahezu normales Alltagsleben zulässt, das dennoch von spezifischen Herausforderungen geprägt ist. Ziel: Es soll aufgezeigt werden, wie Menschen das Leben mit einer HIV-Infektion oder AIDS-Erkrankung unter dem Umstand der Chronifizierung erleben und wie sie ihren Alltag mit der Erkrankung bewältigen. Methode: Qualitativer Ansatz gemäß der Grounded Theory nach Corbin und Strauss; problemzentrierte Interviews mit 18 HIV-positiven oder an AIDS erkrankten Personen; Analyse unter Anwendung der Kodierprozesse mit Unterstützung von MAXQDA. Ergebnisse: Vertrauensbeziehungen im privaten und beruflichen Umfeld sowie im Gesundheitssystem sind von zentraler Bedeutung, da Diskriminierung und Stigmatisierung in allen diesen Bereichen präsent sind. Problematisch gestaltet sich für die Betroffenen vor allem die Offenlegung des Infektionsstatus. Drei Vertrauensmuster wurden identifiziert: gewachsenes Vertrauen, kontrolliertes Vertrauen sowie Misstrauen bzw. Vertrauensverlust. Je nach Muster verändert sich der Umgang der Betroffenen mit der Erkrankung und hat Folgen für ihre Lebensqualität. Schlussfolgerung: Die Darstellung der Vertrauens- und Handlungsmuster schafft eine theoretische Grundlage, die als Ansatzpunkt für die Beratung und Begleitung HIV-positiver und an AIDS erkrankter Menschen dienen kann. Ein Abbau von Stigmatisierung und Diskriminierung, insbesondere im Gesundheitssystem, gehört zu den vordringlichsten Aufgaben.
BackgroundPlanning for the end of life increasingly has become a necessity in order to ensure autonomy and a dignified death. Yet, little is known about the attitudes of very old people to ACP.AimTo investigate issues of ACP in a broad data set on health, care and living conditions of very old people in Austria.MethodsThe ÖIHS-Study follows a longitudinal design with biannual data collection. It covers a representative sample of 410 people aged 80–85 years in two Austrian regions. A qualitative study with a purposive sampling strategy (n = 40) complemented the survey. Interviews were transcribed verbatim and analysed using an open coding procedure applying MaxQda software.ResultsA minority had an advance statement like “durable power of attorney” (11%) or a living will (9,3%). The higher the socioeconomic status the more often an ACP-document was available. We found a lack of information about the relevance of ACP and access to it. Worries about meaning of life and closure, relations to families and social participation were predominant in the interviews.DiscussionMost people did not suffer from a live-limiting diagnosis as specific to the oldest old which might be one reason for little awareness of ACP apart from a general lack of information.ConclusionAs a general approach to deal with issues concerning the future of the oldest old ACP has gained little attention in Austria yet. For promotion in this age group it seems vital to exceed medical perspectives and include issues of social care as well.
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