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Background
Lay family caregivers of patients receiving palliative care often confront stressful situations in the care of their loved ones. This is particularly true for families in the home-based palliative care settings, where the family caregivers are responsible for a substantial amount of the patient’s care. Yet, to our knowledge, no study to date has examined the family caregivers’ exposure to critical events and distress with home-based palliative care has been reported from Germany. Therefore, we attempt to assess family caregiver exposure to the dying patient’s critical health events and relate that to the caregiver’s own psychological distress to examine associations with general health within a home-based palliative care situation in Germany.
Methods
A cross-sectional study was conducted among 106 family caregivers with home-based palliative care in the Federal State of North Rhine Westphalia, Germany. We administered the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale. Descriptive statistics and linear regression models relating general health (SF-36) were used to analyze the data.
Results
The frequency of the caregiver’s exposure, or witness of, critical health events of the patient ranged from 95.2% “pain/discomfort” to 20.8% “family caregiver thought patient was dead”. The highest distress scores assessing fear and helpfulness were associated with “family caregiver felt patient had enough’” and “family caregiver thought patient was dead”. Linear regression analyses revealed significant inverse associations between SCARED critical health event exposure frequency (beta = .408, p = .025) and total score (beta = .377, p = .007) with general health in family caregivers.
Conclusions
Family caregivers with home-based palliative care in Germany frequently experience exposure to a large number of critical health events in caring for their family members who are terminally ill. These exposures are associated with the family caregiver’s degree of fear and helplessness and are associated with their worse general health. Thus the SCARED Scale, which is brief and easy to administer, appears able to identify these potentially upsetting critical health events among family caregivers of palliative care patients receiving care at home. Because it identified commonly encountered critical events in these patients and related them to adverse general health of family caregivers, the SCARED may add to clinically useful screens to identify family caregivers who may be struggling.
Familienmitglieder sind zwar mit der fortgeschrittenen Brustkrebserkrankung von Frauen konfrontiert, jedoch sind sie auf andere Art und Weise betroffen, als die Patientinnen selbst. Die vorliegende Literaturstudie geht den Fragen nach, welchen Einfluss eine fortgeschrittene Brustkrebserkrankung auf das Familienleben hat, welche Bedürfnisse in Familien in diesem Zusammenhang entstehen und auf welche Ressourcen die Familien zurückgreifen. Die hier dargelegten Studien stellen die einzelnen Perspektiven eines – oder zweier Familienmitglieder dar, jedoch ist eine tiefergehende Reflexion über andere Personen, die an dem Prozess beteiligt sind, nur bedingt möglich. Allerdings verweisen die vorhandenen Ergebnisse darauf, dass die Krankheit eine dauerhafte Bedrohung für die betroffenen Familien darstellt. Der Umgang mit dieser Bedrohung in der Gegenwart und seine Projektion in die Zukunft, ist eines der wichtigsten Themen, mit denen sich die Familien konfrontiert sehen.
Chronic illness can have a profound impact on couples’ relationships. In dealing with relational changes, new constructions and forms of relationships may arise. In the context of a larger grounded theory study on relational processes and practices in couples faced with chronic illness, this article focuses on concurrent relationships as an alternative form of relationship construction which embodies an additional relationship existing parallel to that of the couple confronted with chronic illness. Based on qualitative interviews with a subsample of five persons within the larger study, conditions for the development and characteristics of concurrent relationships are presented. From an individual and shared life questioned by chronic illness, concurrent relationships are formed in the attempt to be able to live on together in a new partner relationship and a continued care relationship. This can lead to new constructions of relationships, family life, and social relations in everyday life.