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UBC Theses and Dissertations

An evaluation of a family decision guide Zerr, Janelle Renée


Family caregivers (FCGs) are essential to a patient’s ability to be cared for and to die at home. In order to provide care at home, FCGs require support, but such support is lacking. The Family Caregiver Decision Guide (FCGDG) is an intervention that was developed based on the findings of several studies, and aimed to assist FCGs to navigate their way through the decisions and processes of caring for their palliative family members at home. The purpose of this pilot study was to field test the FCGDG with bereaved and current FCGs for someone who has advanced cancer and is considered to be in the palliative phase. Qualitative data was gathered in two separate phases. In the first phase, the research team conducted three focus groups with bereaved family caregivers (total n=14). In the second phase, I conducted cognitive interviews with current family caregivers (n=8). All interviews were audio-recorded. A qualitative descriptive approach was used to conduct an inductively driven content analysis of the data for both phases of the research. Data from phase one of the research was used to amend the FCGDG prior to phase two of the study. We learned that various factors either helped or hindered participants’ connection and subsequent engagement with the guide, particularly the images and the format/layout of the guide; the guide was re-designed twice in relation to participant feedback. Some participants requested that the guide be more explicit about end-of-life issues; however, findings revealed complexities surrounding this issue. It was further noted that when the focus of the guide was on the FCG, specifically their self-care instead of the ill family member, it disrupted their connection to the guide and compromised the effectiveness of the intervention. Based on feedback on the FCGDG, the guide shows promise as an effective intervention. However, it was determined that the guide should not be used as a stand-alone tool; it was recommended that the FCGDG be used in conjunction with navigational support.

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