Who cares? Caring responsibility from the prespectives of older, ill persons and their adult children in primary healthcare

Publikation: Bog/antologi/afhandling/rapportPh.d.-afhandling

  • Helle Elisabeth Andersen
English summary

Introduction
As older persons seek to live out their years at home, informal caregivers like adult children are increasingly relied upon for support and well-being. This may be seen as a consequence of public responsibility becoming more narrowly defined, and more responsibility for care is placed on older persons in need of care and their families.

Purpose and aims
The purpose of this study was to enhance the understanding of the phenomenon of caring responsibility in primary healthcare from the perspectives of older, ill persons 80+ and their adult children. The study aimed to describe insights into their experiences with the phenomenon of caring responsibility in the context of being cared for at home presented through three inquiries.

Methodological foundations
The study is inspired by Reflective Lifeworld Research as outlined by the Swedish Professor and nurse Karin Dahlberg and colleagues. Reflective Lifeworld Research draws on phenomenology and the hermeneutic philosophies focusing on the lifeworld.

Methods
Data were generated through individual in-depth interviews with 11 older persons aged 81 to 98 years 2 to 3 weeks after discharge from hospital, and through individual in-depth interviews with 12 adult children aged 38 to 73 years 5 to 6 weeks after their parent’s discharge. Before being interviewed, the adult children completed a 2-week diary. Selection of participants took place at a department of geriatric medicine with the following inclusion criteria for older persons: 1) older persons with chronic illness, 2) aged 80+, 3) living alone, 4) not diagnosed with dementia, 5) had at least one adult child living nearby taking care of his/her parent. Data were analyzed according to the methodological principles of Reflective Lifeworld Research for descriptive analysis.

Findings
The older persons and their adult children experience caring responsibility in the context of illness and frailty while being cared for at home as both a natural (articles I and II) and a professional phenomenon (article III).

Article I: From the older persons’ perspective, the essential meaning of caring responsibility in the parent-child relationship is described as “a condition of life that means everything”. Four constituents illuminate caring responsibility in this context: 1) a life-constraining transition, 2) trusting children filling the gaps and being the glue, 3) tacit responsibility, negotiations and acceptance, and 4) dependent on children and knowing they are burdened with you.

Article II: From the adult children’s perspective, the essential meaning of caring responsibility is described as “a condition of life filled with uncertainty.” Three constituents illuminate caring responsibility in this context: 1) balancing love, duty and reciprocity, 2) being the parent’s advocate and manager, and 3) experiencing concerns and bodily strain.

Article III: The essential meaning of caring responsibility exercised by healthcare professionals and from the perspectives of older persons and their adult children is described as “a question of being professionally competent.” Four constituents illuminate caring responsibility in this context: 1) despite enthusiastic souls – basic human care is not enough, 2) errors of commission in care, 3) errors of omission in care, 4) caught in the Bermuda triangle of healthcare systems.

Conclusions
As a natural phenomenon in the parent-child relationship, the essential meaning of caring responsibility is described as a condition of life that means everything to the older persons and the possibility to remain in their own homes despite illness and frailty. Metaphorically, the adult children become the “glue” that keeps things together and ensures the parents receive the right care. Caring responsibility is a condition built on trust, tacit responsibility, negotiations and acceptance, where the older persons struggle between their growing dependence and feelings of being a burden to their children. As a natural phenomenon, caring responsibility is also a condition of life filled with uncertainty. This uncertainty may be a condition if one cares and worries about one another. This uncertainly is thus made greater by the older parent’s illness and frailty and the fact that the parent lives alone and not being able to trust that primary healthcare will provide appropriate responsible care. The adult children assume great caring responsibility, balancing between feelings of love, duty and reciprocity. Adult children experience the double meaning of caring responsibility as anxious worrisome care (Sorge) and care as solicitude (Fürsorge). Furthermore, providing care as solitude (Fürsorge) means struggling when to leap-in and take over for their older parents and when to leap-ahead and prepare the situation so that the parents can take over by themselves. They struggle between what Heidegger calls inauthentic and authentic care, and experience a constant concern accompanied by bodily strain such as insomnia, nervousness and forgetfulness, including concerns of becoming old and dependent on the healthcare system themselves.

As a professional phenomenon exercised by healthcare professionals in primary healthcare and reflected in older persons and their adult children’s perspectives, caring responsibility carries both positive and negative essential meanings. Positive meanings are experienced when healthcare professionals act as decent, trustworthy, committed and professionally competent persons able to provide authentic care, thus acknowledging the older person as an individual set in a vulnerable life context with illness and frailty. Another positive aspect relates to trust in the sense that the agreed-upon care at a system level is provided in the form of professional, qualified care and not just good service.
Negative meanings of caring responsibility surface in the form of problems with insufficient and inauthentic care, sometimes resulting in errors of commission and omission. In such situations, responsibility becomes blurred, and the adult children have to compensate and assume more caring responsibility to ensure their older parent’s general well-being and safety in own home.

Bidragets oversatte titelÆldre og deres voksne børns erfaringer med fænomenet pleje- og omsorgsansvar i primærsektor
OriginalsprogEngelsk
ForlagAarhus Universitet
Antal sider178
StatusUdgivet - 18 dec. 2020

    Forskningsområder

  • Ældre 80+, voksne børn, pleje- og omsorgsansvar, primærsektor

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