Caregivers’ differing needs across key experiences of the advanced cancer disease trajectory

Abstract

Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers’ needs is vital in providing necessary support to lessen caregiver burden and morbidity. Current literature has identified caregiver and patient needs at broad stages of the cancer trajectory; however, such broad stages may be too general to inform a practice of targeting specific interventions when they have the greatest utility. This study examines a variety of particular needs across a number of more discrete illness-related transition experiences specifically in the advanced cancer disease trajectory. One hundred fifty-nine female informal caregivers of people with advanced cancer completed a needs assessment survey. Analyses of these cross-sectional retrospective-report data reveal that cancer caregiver needs vary across specific key experiences occurring within the broader stages of illness identified by current literature. Furthermore, caregivers have unique needs during bereavement. While the sample characteristics are demographically limited, this study provides preliminary evidence that the broad stages are not specific enough increments for effectively examining caregiver needs, and supports the need for more precise distribution of cancer-related information at more discrete times in the illness course.

Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer

“…Fewer studies have focussed on the needs of support persons and family members [3,42,55]. The approach taken in the present study was to consider the needs of parents and caregivers across a range of supportive care dimensions.…”

Is There an “Ideal Cancer” Support Group? Key Findings from a Qualitative Study of Three Groups

“…Many of these sporadic and one-time attendees appeared to view their role in the group solely as supporters (and, in some cases, transporters) of patients; thus, their attendance was directly linked to that of the patients. However, for caregivers interested in receiving support in their own right, the group did not appear to meet these needs, as two caregivers interviewed (a one-time attendee and a group regular) suggested: The different support needs of caregivers and patients have been highlighted in several studies (DuBenske et al, 2008;Hauser et al, 2006;Hodgkinson et al, 2007) and suggest the potential benefit of a separate group for caregivers interested in receiving support.…”

Social support needs: Discordance between home hospice nurses and former family caregivers

“…Additionally, family caregivers with greater external resources, such as broader social networks, may require less support from health care providers, particularly in terms of Emotional and Esteem support. Each family's needs are likely to be different and vary over time in a unique fashion (DuBenske et al, 2008). Even within our sample of family caregivers, there were disagreements as to what was seen as helpful, emphasizing the need for skilled individual patient and family assessment by the hospice team.…”