End-of-life care at home: Dignity of family caregivers.

BACKGROUND: Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. AIM: This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. RESEARCH DESIGN AND PARTICIPANTS: This exploratory study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer's philosophical hermeneutics. ETHICAL CONSIDERATIONS: Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. RESULTS: The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. CONCLUSION AND FINAL CONSIDERATIONS: The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices.

Caregiving for frail home-dwelling older people: A qualitative study of family caregivers' experiences.

BACKGROUND: The increasing frailty of home-dwelling older people can lead to rising expectations from their family caregivers due to various demographic developments and political guidelines. European data show that 60% of home-dwelling older people receive informal care. Frailty among older people is a state of vulnerability, increasing the risk of adverse health outcomes, declining daily activities and needing long-term care. AIM: To explore family caregivers' lived experiences with caring for frail, home-dwelling older people. METHODS: We conducted a phenomenological study to obtain in-depth descriptions of the phenomenon. We interviewed nine family caregivers, five men and four women between 52 and 90 years old, in-depth in their homes. We used a hermeneutical phenomenological approach described by van Manen and followed the COREQ checklist. RESULTS: The phenomenon's essential meaning is described as striving to adapt throughout the caring relationship. The interrelated themes describe different caring relationships, caring for a family member and letting go of the primary caring responsibility. CONCLUSIONS: Family caregivers describe care as meaningful yet demanding. In our study, the varying condition of frailty was an additional challenge in care. By addressing these challenges, healthcare providers can better support and help family caregivers to withstand their caring relationships. The Norwegian Centre for Research Data approved the study (Ref.61202).

Carrying on life at home or moving to a nursing home: frail older people's experiences of at-homeness.

AIMS AND OBJECTIVES: The aim was to explore frail older people's lived experiences of managing life at home on the verge of moving to a nursing home. BACKGROUND: As people age, their reserve capacity decreases, increasingthe risk of morbidity and frailty.. The experience of frailty extends beyond declining health and physical well-being and encompasses various dimensions, including familiarity with both the place and the people around. DESIGN: A phenomenological study. METHODS: We interviewed ten frail people aged 72-90 years in-depth in their homes. We used phenomenological hermeneutical analysis inspired by van Manen and followed the COREQ checklist. RESULTS: We identified three main themes: (1) being home with cherished people and possessions, (2) giving the nursing home a go and (3) attuning to the natural rhythms. CONCLUSIONS: Our study gives insight into the lived experiences with frailty related to at-homeness. The experience of being lost in transition represents a uniquely significant experience for frail older people, foregrounding existential issues and carrying the potential of at-homeness. RELEVANCE TO PRACTICE: To unleash frail older people's potential for at-homeness, health professionals mustmeet the needs of frail older people individually. Going beyond signs and symptoms to reveal people's concrete everyday experiences is crucial to understanding frailty .

In the borderland of the body: How home-dwelling older people experience frailty.

RATIONALE: The increasing number of frail home-dwelling older people has sharpened the focus on discovering and implementing suitable treatment and care in clinical practice, aiming to prevent loss of physical functioning and preserve their autonomy and well-being. People's embodied experiences may yield rich descriptions to help to understand frailty. Thoroughly understanding older people's individual perceptions is especially relevant because the numbers of home-dwelling older people are increasing, and people tend to develop more health problems and become frailer as they age. Their perspectives are important to develop knowledge and high-quality care. AIM: To explore the lived experiences of frail home-dwelling older people. METHODS: We conducted a phenomenological study to obtain in-depth descriptions of the phenomenon. We interviewed 10 home-dwelling older adults (seven women and three men, 72-90 years old) in depth about their lived experience of frailty. We analysed the data using a hermeneutic phenomenological approach described by van Manen. FINDINGS: The lived experience of frailty is described in one essential theme: frailty as being in the borderland of the body, including three interrelated subthemes: (1) the body shuts down; (2) living on the edge; and (3) not giving up. CONCLUSIONS: Our study gives insight into lived experiences with frailty among home-dwelling older people related to their own body. Older people's experience of meaningful activities strengthened their feeling of being themselves, despite their frail and deteriorating body. Healthcare providers must consider the strategies of frail older people to consider both their vulnerabilities and self-perceived strengths. The resources and deficits of frail older people present in the state of being frail need to be recognised.

Struggling for a dignifying care: experiences of being next of kin to patients in home health care.

BACKGROUND: Home healthcare services are becoming more complex as a result of changing demographics in society and patients having multiple health problems requiring advanced nursing care. Next of kin often experience that they put their own life on hold, and may feel that they stand alone when life takes an unexpected turn. AIM: The aim of this study was to explore next of kin's views of dignity in home healthcare services. METHODS: This study has a qualitative approach and content analysis was applied. The purposeful sample consisted of next of kin to patients who received services from home healthcare or in nursing homes (n = 11). One focus group was conducted in 2016. RESULTS: Five themes emerged from the data analysis concerning struggling for a dignifying care in home healthcare services: Indignity implies double vulnerability, desire for respect and recognition, experiencing responsibility for a dignifying life, undignifying care due to lack of competence, and the home as a common sanctuary is gradually lost. CONCLUSIONS: This study highlights the importance of ensuring dignity in care for patients living at home. Next of kin should be seen as a partner with the need for recognition and support. Maintaining human dignity for loved ones requires competence, respect and recognition.