Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography

Abstract

Background: People with chronic pain often seek support from friends and family for everyday tasks. These individuals are termed informal caregivers. There remains uncertainty regarding the lived experiences of these people who care for individuals with chronic musculoskeletal pain. The aim of this article is to synthase the evidence on the lived experiences of informal caregivers providing care to people with chronic musculoskeletal pain. Methods: A systematic literature review was undertaken of published and unpublished literature databases including EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September 2019). Qualitative studies exploring the lived experiences of informal caregivers of people with chronic musculoskeletal pain were included. Data were synthesised using a meta-ethnography approach. Evidence was evaluated using the Critical Appraisal Skills Programme qualitative appraisal tool. Results: From 534 citations, 10 studies were eligible (360 participants: 171 informal caregivers of 189 care recipients). The evidence was moderate quality. Seven themes arose: the relationship of caregivers to healthcare professionals; role reversal with care recipients; acting the confidant to the care recipient; a constant burden in caregiving; legitimising care recipient’s condition; knowledge and skills to provide caregiving; and the perception of other family members and wider society to the caregiver/care recipient dyad. Conclusion: The lived experiences of caregivers of people with chronic musculoskeletal pain is complex and dynamic. There is an inter-connected relationship between caregivers, care recipients and healthcare professionals. Exploring how these experiences can be modified to improve a caregiving dyad’s lived experience is now warranted.

Becoming a secondary actor of one's own life: A qualitative study of the experiences of informal caregivers in the care of people with chronic pain

“…Being the everyday ‘witness to pain’ obliges IC to act as the reporter and defender of the pain to those who may question the sincerity of the pain 13 due to its ‘invisibility’, 16 for example by explaining to the physician the characteristics of the pain of their family member. 13 The heterogeneity in individual's pain perceptions, and the biological, psychological and social nature of pain, requires not only a clinical approach but also fulfilling the social expectancies and responsibilities to offer informal care. 13 Additionally, CP is frequently associated with other pathologies, making the role of the IC more challenging and complex.…”

“… 13 The heterogeneity in individual's pain perceptions, and the biological, psychological and social nature of pain, requires not only a clinical approach but also fulfilling the social expectancies and responsibilities to offer informal care. 13 Additionally, CP is frequently associated with other pathologies, making the role of the IC more challenging and complex.…”

Managing Older Adults' Chronic Pain: Lower-Risk Interventions

“…Health care providers should approach treatment planning by engaging the care recipient and caregiver empathetically and using active listening to facilitate sharing of insights, advocacy, and direct communication. 26 Through one-on-one and group conversations, nurses can serve as trusted confidantes to both caregivers and care recipients, helping to identify and resolve issues that may affect treatment planning.…”

“…Family caregivers' involvement in pain treatment planning is important, and varies according to their relationship to the care recipient (partner, child, other) and prior involvement with the recipient's health concerns 25. Health care providers should approach treatment planning by engaging the care recipient and caregiver empathetically and using active listening to facilitate sharing of insights, advocacy, and direct communication 26. Through one-on-one and group conversations, nurses can serve as trusted confidantes to both caregivers and care recipients, helping to identify and resolve issues that may affect treatment planning.…”

Informal caregiver training for people with chronic pain in musculoskeletal services (JOINT SUPPORT): protocol for a feasibility randomised controlled trial

“… 8 Becoming a caregiver in this situation can significantly change the dynamic of a relationship with feelings of burden which can lead to resentment, 9 changing roles and identities not only between the patient–caregiver dyad but also impacts on family, social and occupational life, and fear and concern regarding the future and how chronic pain may impact on the individual they support, over-time. 9 10 Usual NHS care is focused on the patient, providing interventions to support the long-term management of pain and disability. These are either through structured programmes such as the ESCAPE-Pain programme, 11 or non-structured guidelines incorporating elements of education, exercise, pain relief and psychological interventions.…”