Abstract
BackgroundFamily 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.MethodsFrom 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.ResultsCentral 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.ConclusionsOur 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.
Highlights
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
Study design Our overall research project aimed at exploring the diverse palette of family caregiver experiences, following the characteristics that are key in the diverging views and philosophical assumptions of a grounded theory methodology [23, 24], i.e. we used an inductive approach, we simultaneously collected and analyzed data while developing theoretical abstractions grounded in the data, we used constant comparison and kept memos, and strived for theoretical sampling
This study focuses on family care in a palliative care context, as a consequence of metastasized cancer or long-term organ failure
Summary
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. In the last phase of a life-limiting disease, patients are often cared for by someone close from their social network, such as their partner, grown-up child, or friend.. In the last phase of a life-limiting disease, patients are often cared for by someone close from their social network, such as their partner, grown-up child, or friend.1 These people providing family care (Table 1) are pivotal. About one in five caregivers of terminally ill patients experience a heavy care-related burden [8] This much-investigated concept of ‘burden’ is reported to be associated with factors like distress at witnessing suffering and disease progression, uncertainty about the situation, role strain, sleep deprivation, spiritual distress, and financial crises [1, 7]
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