Feeling called to care: a qualitative interview study on normativity in family caregivers’ experiences in Dutch home settings in a palliative care context

Abstract

Background Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one’s direct social network, lots of caregivers persevere. To better understand why, we aimed to specify how normative elements – i.e. what is considered good or valuable – shape family caregivers’ experiences in Dutch home settings. Methods From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. Results Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. Conclusions Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot – and perhaps should not – simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.

Dealing with Problematic Asymmetries in Caregiving Relationships: A Role for Social Robots?

“…A conflict may occur either in the caregiver's feelings of excessively high social distance (Sayles-Cross, 1993) or in the care recipient's feelings of low social distance (Haan et al, 2021). For example, informal caregivers may have trouble managing their worklife balance to maintain their own well-being when they try to be constantly reachable and available to older adults (Haan et al, 2021). However, decreasing the duration and frequency of caregiving activities or companionship may make older adults misunderstand that their caregivers have a low degree of sympathetic understanding in their relationships.…”

“…Social distance measures the degree of sympathetic understanding in relationships (Sayles-Cross, 1993). A conflict may occur either in the caregiver's feelings of excessively high social distance (Sayles-Cross, 1993) or in the care recipient's feelings of low social distance (Haan et al, 2021). For example, informal caregivers may have trouble managing their worklife balance to maintain their own well-being when they try to be constantly reachable and available to older adults (Haan et al, 2021).…”

Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study

“…The graphic novel tells the stories of characters caring for their loved one receiving palliative care at home, based on themes and scenes from our qualitative interview study with 28 family caregivers (mostly partners or adult children) and 9 patients (mostly suffering from end-stage cancer or severe organ failure). 22 The larger project, of which this study is a part, aimed to visualize the sometimes invisible experiences of family caregivers, thus stimulating conversations within support practice and among the wider public.…”

“…Contrasting autobiographic comics, 28 our graphic novel ( Table 1 ) was based on our in-depth interview research, 22 taking up insights from comics-based research. 31 In general, arts-based research (ABR) practices emerged in the last decades as interdisciplinary and rather innovative ways of conducting, analyzing, or representing research through the arts, for example, poetry, music, dance, theater, or visual arts.…”

“…29,32,33 Thus, comics offer a window into the subjective lives of others, 21,26 which enables readers to understand the inner, intangible aspects of illness experiences 34 and the issues or worries that are not always elicited in clinical encounters. 20,21 Contrasting autobiographic comics, 28 our graphic novel (Table 1) was based on our in-depth interview research, 22 taking up insights from comics-based research. 31 In general, arts-based research (ABR) practices emerged in the last decades as interdisciplinary and rather innovative ways of conducting, analyzing, or representing research through the arts, for example, poetry, music, dance, theater, or visual arts.…”