Family caregivers support their patient's decision to participate in a phase 1 clinical trial: Weighing the pros and cons, bearing the costs.

OBJECTIVES: When patients with advanced cancer pursue phase 1 clinical trials, family caregivers are impacted as they adopt new roles and responsibilities in time-pressured, uncertain circumstances. This study explored the nature of the caregivers' participation in patients' decision to pursue phase 1 clinical trials and the early impact of the decision on the caregiver. METHODS: Semi-structured interviews were conducted with 19 family caregivers of advanced cancer patients who had agreed to participate in phase 1 clinical trials. They were coded for information about the caregiver's relationship with the patient, typical style of decision-making together, understanding of the patient's prognosis and trial, contributions to decision-making and the initial impacts of the trial on the caregiver. Codes illuminating the research questions were grouped into categories and themes, compared across transcripts and examined against the literature. RESULTS: Caregivers unequivocally supported the patients' decision to pursue the phase 1 trial as they hoped that the patient would derive medical benefit from the trial. They withheld their opinions and fears about the trial from the patients to support patient autonomy during the decision-making process. The patient's decision to participate increased the caregivers' burdens and deprived them of time spent on pleasurable activities at end of life. CONCLUSIONS: Respecting the patients' personal autonomy, caregivers supported the trial, despite the complex caregiving required. As the success of phase 1 trials relies on caregiver involvement, it is imperative that healthcare professionals be sensitized to the support needs of these caregivers.

OA8†Caring for the family caregiver: working with volunteers to implement and improve a service to enable family caregivers to maintain their own wellbeing.

BACKGROUND: Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. AIM: To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. METHOD: A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. RESULTS: Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). CONCLUSION: Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.

The extra burdens patients in denial impose on their family caregivers.

OBJECTIVE: The purpose of this study was to explore the impact of advanced cancer patients' denial on their family caregivers and how they cope, in order to enable clinicians to better support them and their caregiving. METHOD: As the objective was to obtain clinically useful findings, an interpretive descriptive design was used. Data consisted of prospective semi-structured interviews with 16 family caregivers of advanced cancer patients in denial, field notes, reflexive journals, and memos during the analysis. RESULTS: Caregivers experienced extra burdens with the patient's denial. Feeling bound to preserve the denial, which they perceived as immutable, they were prevented from seeking information to manage the patient's care. Additionally, those caring for noncompliant patients felt disenfranchised from their role, resulting in feelings of powerlessness and guilt, and felt burdened by managing medical situations that arose from noncompliance. Caregivers described the ambivalence of feeling frustrated and burdened by the denial while recognizing it as a long-standing coping pattern for the patient. The denial prevented them from acknowledging their own needs to the patients or seeking informal support. They therefore developed solitary coping strategies, sought professional psychosocial support, and/or employed denial themselves. SIGNIFICANCE OF RESULTS: Caregivers of patients in denial experience added burdens, which they must bear without most of the usual sources of support. The burden is accentuated when patients are noncompliant with care, placing themselves in dangerous situations. Healthcare providers should identify patients in denial and support their caregivers in meeting both their caregiving and their own needs. Evidence-based strategies to accomplish this should be developed and implemented.