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Support Care Cancer (2012) 20:19751982 DOI 10.1007/s00520-011-1300-z
ORIGINAL ARTICLE
What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention
R. Harding & E. Epiphaniou & D. Hamilton & S. Bridger &
V. Robinson & R. George & T. Beynon & I. J. Higginson
Received: 23 May 2011 /Accepted: 25 October 2011 /Published online: 10 November 2011 # Springer-Verlag 2011
AbstractPurpose Tailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers experiences.
Method Single, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care.
Results Carers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patients condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems.
Conclusions Considering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.
Keywords Caregivers . Needs . Challenges . Experiences .
Cancer
Introduction
Approximately 90% of advanced or terminally ill patients prefer to be cared at home during their illness [1], and 67% indicate home to be their preferred place to die [2]. Optimum home care for patients depends on adequate care for the caregivers to continue providing care [3]. Despite a clear preference for home death, it is predicted that fewer than one in ten will die at home [4]. A meta-analysis of the available evidence found that family support is associated with achieving home death [5].
Caregivers of patients receiving home palliative care have been shown to experience many physical [6], emotional [7, 8], psychological [8, 9], social [8, 10] and financial [10] difficulties as well as unmet needs for information [11]. A qualitative study emphasised caregivers stress and frustration [12], and a further study reported that caregivers readily take up support and advice [13]. Therefore, health care professionals (HCPs) need to acknowledge caregivers ambivalence towards their identity...