Preparing for Bereavement: A Qualitative Exploration of Information and Support for Primary Caregivers of Patients with Terminal Cancer Undergoing Palliative Radiation Therapy

Purpose: Fifty percent of radiation therapy prescriptions are delivered with a palliative intent. The patients who are offered radiation therapy are often affected by metastatic disease, causing pain and symptoms. Equally affected by the cancer are the caregivers who provide much of the care to those who are suffering from the disease. The aim of this study is to define the information and support needs for these carers during and after palliative radiotherapy. To determine the efficacy of the current support and information provided and to explore the bereavement experiences of these carers with the aim to inform service improvement in information and supports provided. Methods: A phenomenology method was chosen for this project. Participants participated in a telephone interview using semi-structured interview questions. The interviews were scheduled 6-8 weeks post death of the patient. The interviews were recorded and later transcribed. The data collected was analysed using grounded-theory. The researcher coded the data using an iterative process with the aid of Quirkos qualitative analysis computer software. Results: A total of nine carers participated in a telephone interview out of ten who consented between July 2019 and October 2019. Three caregivers interviewed were male and six were female with a mean age of 60.7 years (range 49-75). The relationship of the carers to the deceased consisted of; 1 husband, 1 ex-wife and 2 wives, 2 daughters (mothers deceased), 2 sons (1 mother, 1 father deceased). The patient diagnoses were all of stage IV cancer; 4 (lung ca), 2 (melanoma), 1 (primary unknown), 1 (prostate/bladder ca), 1 (breast ca) The patients in this study died at home (3), hospice (2), hospital (2) and retirement home (2). One patient died as a result of medically assisted dying. Main themes identified; patient and caregiver preparedness for diagnosis, prior death experiences, support during caregiving (equipment, informational and emotional), caregiving challenges (communication/Information, delays in care), preparedness for death (end of life events, caregiving strain), post death (paperwork, reflections of death, positive experiences, being remembered). Conclusions: This study was successful in exploring each of the nine caregiver's cancer journey, identifying the information and supports that were provided to them during palliative radiation therapy and the efficacy of each. Carers revealed they want information on prognosis early to aid them in preparation for caregiving, they want information on medical assistance in dying as an option and they appreciate having advance care planning information and discussions. The palliative clinical specialist radiation therapist will disseminate the results to stakeholders with the intent to improve communication with carers and include information such as financial responsibilities for carers and bring attention to government benefits and notifications earlier in the process of planning bereavement.