Family Caregiver Challenges in Pain Management for Patients with Advanced Illnesses: A Systematic Review.

Although pain management is integral to the caregiving role, there is a paucity of evidence synthesizing specific challenges family caregivers (FCs) face when managing pain for their care partners. This review comprehensively identified and summarized such challenges in the setting of advanced illnesses. Electronic databases (PubMed, CINAHL, PsycINFO, Scopus, and Health and Psychosocial Instruments) were searched using index and keyword methods for all articles published before April 2021. Fifty-five studies were included in this review. Most articles were published within the last 10 years (54%) in community settings, with home hospice care comprising the majority (50%). Most studies included patients with an advanced cancer diagnosis (84%), and 16% of the studies included patients with a noncancer diagnosis. Four major categories of challenges were identified: (1) caregiver-related issues (e.g., fears, beliefs, function), (2) caregivers' limited knowledge and skills in pain management (e.g., verbal and nonverbal pain assessment skills, pharmacological knowledge, documentation, safe management of medication), (3) communication challenges with health care providers, and (4) patient-related issues (e.g., inability to report pain). Many of these challenges have not been fully addressed in prior literature. Thus, this review provides a framework for needed future research to develop interventions that target FCs' specific challenges in providing pain management. The results also highlight a significant lack of research surrounding challenges faced by caregivers of care partners having a noncancer, dementia, or multimorbidity diagnosis.

Interventions to Support Family Caregivers in Pain Management: A Systematic Review.

CONTEXT: Family caregivers encounter many challenges when managing pain for their loved ones. There is a lack of clear recommendations on how to prepare caregivers in pain management. OBJECTIVES: To evaluate existing interventions that support family caregivers in providing pain management to patients with all disease types. METHODS: Four electronic databases were systematically searched (PubMed, Cumulative Index for Nursing Allied Health Literature, PsycINFO, and Scopus) using index and keyword methods for articles published before December 2019. The Mixed Methods Appraisal Tool was used to assess the quality. RESULTS: The search identified 6851 studies, and 25 studies met the inclusion criteria. Only two studies exclusively focused on noncancer populations (8%). Three types of interventions were identified in this review: educational interventions, cognitive-behavioral interventions, and technology-based interventions. Both educational and cognitive-behavioral interventions improved family caregiver and patient outcomes, but the content and intensity of these interventions in these studies varied widely, and there was a limited number of randomized clinical trials (68%). Hence, it is unclear what strategies are most effective to prepare family caregivers in pain management. Technology-based interventions were feasible to support family caregivers in providing pain management. CONCLUSION: Providing adequate pain management training can improve patient and family caregiver outcomes. However, the most effective interventions for family caregivers are still unclear. More rigorous and replicable clinical trials are needed to examine the effects of educational interventions, cognitive-behavioral interventions, and technology-based interventions. Also, more studies are needed in patients with a noncancer diagnosis or multimorbidity.

Development and Preliminary Evaluation of a Pain Management Manual for Hospice Providers to Support and Educate Family Caregivers.

BACKGROUND: Family caregivers encounter many barriers to managing patients' pain in the home hospice setting. However, there are limited clinically applicable resources for hospice providers to help family caregivers identify and address these barriers. AIM: To develop a pain management manual for hospice providers to support family caregivers and conduct a preliminary providers' evaluation of the manual. DESIGN AND PARTICIPANTS: A pain management manual was developed and structured into 3 parts: (1) 5 common pain management case scenarios based on a secondary data analysis of a hospice clinical trial; (2) a list of suggested assessment questions and strategies for each case scenario was developed based on a caregiver framework; and (3) pain educational material was included from established clinical guidelines. The manual was vetted by 5 experts and then was evaluated by interviewing 25 hospice providers. Interview data were analyzed using thematic analysis. RESULTS: The hospice providers found that the manual could potentially serve as a reference in their practice and be a source for their continuing education. They suggested enhancing the clarity of the case scenarios and adding additional strategies to the manual. Moreover, they suggested expanding the paper-based version and developing a web-based platform to deliver the content would maximize its utility. CONCLUSIONS: The manual has the potential to be integrated into routine hospice care to improve the quality of pain management.