A FEASIBILITY STUDY OF PEER SUPPORT IN FAMILY CAREGIVERS OF PATIENTS NEWLY DIAGNOSED WITH HEMATOLOGIC MALIGNANCY

ABSTRACT

Background: Informal family caregivers play a pivotal role in supporting patients with hematologic malignancies during their treatment. Due to the toxicities of treatment patients often have serious treatment-related side-effects, and with more treatment being placed in the outpatient settings, family caregivers are often the primary source of support between Hospital visits assisting the patient and managing symptoms. The early phase of treatment has been found particularly stressful, and evidence shows that family caregivers are at higher risk of psychological distress and have unmet support needs impacting their ability to support the patient. Thus, finding new ways to support family caregivers is important within a health care context. Peer to peer support has shown great promise in hematologic patients, and there is a need to investigate psychosocial interventions such as peer to peer support in family caregivers. Aims: To investigate the feasibility of a one-on-one peer support intervention in family caregivers of newly diagnosed hematologic patients. Methods: A one-arm feasibility study was conducted. The intervention consisted of 12-weeks of one-on-one support provided by volunteer family caregivers of a hematologic cancer survivor (named caregiver ambassadors) (n = 17) to a family caregiver of a newly diagnosed patient (n =26). Support was delivered based on the needs and preferences of the family caregiver via telephone, text message, e-mail or face-to-face. The intervention also included a preparatory course for the caregiver ambassadors and available support during the intervention. Primary outcomes were feasibility parameters and secondary outcomes were collected at three time points and included anxiety, depression, sleep disturbances, self-efficacy, and quality of life. Results: The peer support intervention was feasible and safe, and participants reported very high satisfaction with the support (75%). Dropout rate was low (7%) and no adverse events were reported. Over time, family caregivers improved their psychosocial well-being, and caregiver ambassadors overall maintained their levels from baseline. Participants were satisfied with the preparatory course enhancing their role preparation as peer supporters and 14 caregiver ambassadors attended the available support network meetings (n = 6). During the intervention, the total number of contacts between participants were 389 with each dyad having an average of 15 contacts during the 12- weeks. Support was most frequently delivered by telephone and text-messages. In-person meetings were less used due to geographical distances, personal preferences including the patients' illness situation, and covid-19. Summary/Conclusion: We tested the feasibility of a new peer to peer intervention in family caregivers of newly diagnosed hematologic patients. The results demonstrated that the intervention was feasible, safe, and satisfactory in both the caregiver ambassador and family caregiver groups. Flexibility in the delivery and frequency of support was essential and accommodated the individual support needs and preferences. Providing preparation and support for caregiver ambassadors was important. This family caregiver peer to peer intervention has the potential to be a new model of support incorporated in the clinical setting.