Nonkin Carers' Roles and Contributions to the Support of Older People Living Alone: An Analysis of Qualitative Data.

OBJECTIVES: In the Global North, the number of older people living alone who have little or no support from family members is increasing. However, little is known about older people living alone who have basic needs for support but do not have kin living nearby or a sustainable relationship to a relative they can rely on. Thus, this paper focuses on the role of nonkin carers and their contribution to the support arrangements of older people living alone. METHODS: We conducted semistructured interviews with 32 older people living alone aged between 67 and 99 (Ø 84.2 years) in Austria, 23 women, and 9 men. The interviews were analyzed by applying a coding strategy based on grounded theory. In addition, sociograms were created to illustrate relevant relations in each support arrangement. RESULTS: We identified and characterized 3 groups of nonkins involved in the support arrangements of older people living alone based on the origins of the relationships: (1) friends, (2) neighbors, and (3) acquaintances like members of various communities. The arrangements were classified according to the amount and quality of involvement of nonkin carers, namely manifold, scattered, and little nonkin involvement. DISCUSSION: Our study highlights the diversity of nonkin support in the support arrangements of older people living alone. This heterogeneity should be considered by policy-makers when promoting informal care and designing policy measures.

Barriers for Adult Patients to Access Palliative Care in Hospitals: A Mixed Methods Systematic Review.

BACKGROUND: Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of strategies to overcome factors that impede access for patients with palliative care needs. AIM: To review the current evidence on barriers that impair, delay, or prohibit access to palliative care for adult hospital inpatients. DESIGN: A mixed methods systematic review was conducted using an integrated convergent approach and thematic synthesis (PROSPERO ID: CRD42021279477). DATA SOURCES: The Cochrane Library, MEDLINE, CINAHL, and PsycINFO were searched from 10/2003 to 12/2020. Studies with evidence of barriers for inpatients to access existing palliative care services were eligible and reviewed. RESULTS: After an initial screening of 3,359 records and 555 full-texts, 79 studies were included. Thematic synthesis yielded 149 access-related phenomena in 6 main categories: 1) Sociodemographic characteristics, 2) Health-related characteristics, 3) Individual beliefs and attitudes, 4) Interindividual cooperation and support, 5) Availability and allocation of resources, and 6) Emotional and prognostic challenges. While evidence was inconclusive for most socio-demographic factors, the following barriers emerged: having a noncancer condition or a low symptom burden, the focus on cure in hospitals, nonacceptance of terminal prognosis, negative perceptions of palliative care, misleading communication and conflicting care preferences, lack of resources, poor coordination, insufficient expertise, and clinicians' emotional discomfort and difficult prognostication. CONCLUSION: Hospital inpatients face multiple barriers to accessing palliative care. Strategies to address these barriers need to take into account their multidimensionality and long-standing persistence.

[Older people living alone: the importance of informal non-kin care : Scoping review]. / Alleinlebende ältere Menschen: Stellenwert der informellen außerfamiliären Hilfe : Literaturübersicht.

BACKGROUND: The number of older people living alone is constantly increasing. This group faces special challenges regarding remaining at home when their care needs increase, especially in later life. When no family is available, friends and neighbors, so called non-kin carers, are important sources of support. OBJECTIVE: A literature review was conducted to evaluate existing research on the relevance of non-kin support for older people living alone, from initial limitations to the end of their lives, particularly when they wished to remain at home. METHOD: The literature search followed the criteria of a scoping review and was conducted in relevant databases and manually. A total of 22 studies were included in the analysis. RESULTS: Older people living alone are often embedded in complex support networks. Living alone at an advanced age creates tensions between the desire for independence and the need for help. Non-kin carers primarily provide instrumental, emotional, and informational support. Challenges arise due to difficult interpersonal dynamics and the overburdening of non-kin carers, especially when those they support are at the end of their lives. CONCLUSION: It is important to understand care networks as a complex interplay of different actors. Future research should focus on the specific burdens on non-kin carers as well as on the dynamics of relationships in these care networks.

Support towards the end of life and beyond: Non-kin care commitment for older people living alone in Austria.

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.

Under Reconstruction: The Impact of COVID-19 Policies on the Lives and Support Networks of Older People Living Alone.

The Austrian government introduced in spring 2020 COVID-19 containment policies that had various impacts on older people living alone (OPLA) and their care arrangements. Seven qualitative telephone interviews with OPLA 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 OPLA even though they did not perceive the pandemic as a threat. To better address the needs of OPLA, it would be important to actively negotiate single measures in the area of conflict between protection, safety and assurance of autonomy.

Eine Frage des Vertrauens - Grounded Theory-Studie zum Alltagserleben HIV-positiver und an AIDS erkrankter Menschen.

A matter of trust - A grounded theory study on the everyday experience of people living with HIV / AIDS Abstract. Background: Provided that the antiretroviral therapy is taken correctly, HIV / AIDS has become a chronic disease allowing for a nearly normal daily life, which is still, however, characterized by specific challenges. Aim: The aim of this study was to explore how HIV / AIDS patients experience and manage their everyday life, against the backdrop of chronification. Method: A qualitative grounded theory approach according to Corbin and Strauss; problem-centered interviews with 18 participants suffering from HIV / AIDS; analysis of data was performed by applying coding strategies and supported by MAXQDA. Results: The present study shows that "trust" is of crucial significance to HIV / AIDS patients in their private, occupational and healthcare environments, where discrimination, stigma and exclusion still occur. The revelation of the infection status represents a particular challenge. We identified three key patterns of trust: evolved trust, controlled trust and distrust / loss of trust. Depending on these patterns, patients approach their condition in strikingly different ways, with apparent consequences on their quality of life. Conclusion: The here established trust patterns provide a theoretical foundation that may serve as a hub for improving support and care of people suffering from HIV / AIDS. Moreover, reducing the social stigma and discrimination faced by these individuals, primarily in the healthcare system, is paramount for the future handling of the disease.

Older people living alone (OPLA) - non-kin-carers' support towards the end of life: qualitative longitudinal study protocol.

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.

From neighbour to carer: An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone.

BACKGROUND: A growing number of older people are living in single households. They form a disadvantaged group within society as regards staying at home, most likely towards the end-of-life. It is mainly non-kin-carers who try to fulfil older people's desire for a home death, but very little is known about the challenges they face during their involvement. AIM: Getting insight into the engagement of non-kin-carers in the support for older people living alone, and a better understanding of the challenges they have to manage in end-of-life care. DESIGN: Exploratory qualitative design; perspectives of non-kin-carers were collected through personal in-depth interviews ( n = 15) retrospectively. SETTING: Home care, urban and rural areas in Austria Findings: A slow and subtle transition into care is what characterizes non-kin-care relationships which show differences between friends and neighbours. Towards the end of life, the main challenges emerged around increased physical care needs, issues of decision-making and facing the process of dying. Prior experiences with the latter, which most of the involved carers had, influenced non-kin-carers' steadiness to allow home death and so did reliable formal support, particularly from specialized palliative care teams. CONCLUSION: 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.