Pain Management Concerns from the Family Caregivers’ Perspective: An Exploratory Study and Utility Test of an Educational Tool to Support Pain Management

Thesis (Ph.D.)--University of Washington, 2017-06Approximately 1.6 to 1.7 million Americans received hospice care in 2014 and about 60% of them received care at their place of residence. Family caregivers play a pivotal role in supporting patient care and symptom management in home hospice care. More than 50% of the patients with terminal illness experience pain and pain is highly undertreated in the end-of-life stage. Pain management has been identified as one of the most challenging tasks for family caregivers and this burden often has a negative impact on family caregivers’ well-being and quality of life. There are limited studies focused on exploring family caregivers’ concerns regarding pain management in home hospice care and on designing supportive interventions for family caregivers. My dissertation aimed to identify the challenges related to pain management faced by family caregivers in home hospice care and develop an educational tool for healthcare clinicians to support caregivers’ pain management. This work is organized in three papers. In the first paper, I conducted a systematic review to understand family caregivers’ pain management in end-of-life care based on a search of CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Fourteen research papers focused on family caregivers’ pain management experience and strategies in end-of-life care were included. Nine were observational studies, three were case studies, and two were experimental studies. This review identified themes similar to previous studies on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. However, the level of scientific evidence is low and the quantity is scarce. More research is needed to explore family caregivers’ pain management in end-of-life care and to design interventions to support family caregivers in pain management. The first paper has been published in the American Journal of Hospice and Palliative Medicine. In the second paper, I conducted a secondary data analysis of hospice family caregivers’ interviews from a recently completed five-year NIH/NINR R01 (Grant Nr. R01NR012213; PI: Demiris) randomized clinical trial to identify family caregivers’ concerns in pain management. The analysis was a theory-driven, deductive content analysis based on an existing hospice pain management framework called “Informal hospice caregiver pain management concerns”. The analysis identified most of the themes in the framework and confirmed that family caregivers faced a variety of challenges when managing patients’ pain: caregiver-centric issues, caregiver’s medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. In the third paper, I designed an educational tool and conducted an evaluation study to test the utility of the tool. The pain management educational tool consists of five modules and some pain management strategies and assessment scales. Each module includes a clinical scenario of caregivers’ challenges in pain management (based on the findings in the second paper) and guidelines (based on the Assessing Caregivers for Team Interventions model) for hospice providers to support family caregivers. The educational tool was vetted through five experts in cancer pain management and caregiving research. Fifteen hospice providers including physicians, nurses, pharmacists, social workers, and chaplains from several hospice agencies in the Seattle were interviewed to solicit their feedback on the utility of the educational tool. The interview data were transcribed verbatim and analyzed using thematic analysis. The hospice providers commented the utility of the tool and suggested improvements of the tool. They commented that the scenarios were realistic and the suggested guidelines were effective. They believed it could be a great reference for hospice providers to use in their clinical practice and a resource for providers’ continuing education. They suggested adding additional pain education content and some common pain management challenges into the tool to enhance the utility. They advised creating more than one platform for the tool such as a printed booklet, website, video, or mobile application in order to accommodate different user needs and experiences. The study showed that the educational tool holds promise to be effective and practical in the context of hospice care. The tool also has potential to improve communication in pain management and be integrated into hospice providers’ routine care