"Being ill defines your daily life": Social wellbeing of patients residing at home facing an incurable illness and their primary family caregivers.

BACKGROUND

In contemporary approaches to incurable illness, death and dying, health care systems constitute the dominant context. However, an expanding body of literature recognizes these experiences as principally social events, thereby placing greater emphasis on the social wellbeing of individuals confronted with incurable illness. This shift has prompted greater interest in the potential role of the wider community and social professionals in palliative care. Therefore, this study focuses on the social wellbeing of patients with incurable illness in the palliative phase, as well as that of their primary family caregivers.

METHODS

In-depth interviews were conducted with 14 participants (patients and primary family caregivers). Qualitative content analysis was used to identify themes and meaning.

RESULTS

This study demonstrates that meaningful relationships, acknowledgement of one's situation and the ability to determine one's own level of involvement in society are essential for the social wellbeing of patients and family caregivers confronted with incurable illness. Relationships with lay persons and participation in society play a crucial role in this context, while relationships with and support from health care providers are also relevant. This is embedded within the broader societal context, reflecting how society as a whole approaches and empowers patients and families facing incurable illness. For most participants, asking for help and being cared for was neither self-evident nor straightforward, which may challenge ideas that advocate for greater community involvement in end-of-life care.

CONCLUSION

Lay persons constitute an essential component in fostering the social wellbeing of individuals living with incurable illness and their families. Furthermore, the quality of communication and relationships with healthcare providers, employers, and institutions, along with the prevailing societal attitudes towards incurable illness, caregiving, death, and dying, is of considerable significance and should be given careful attention.