Dataset Information

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A systematic literature review was undertaken of published and unpublished literature databases including EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September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.

SUBMITTER: Smith T

PROVIDER: S-EPMC8138612 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Smith Toby T Fletcher Jessica J Lister Sarah S

British journal of pain 20200530 2

<h4>Background</h4>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.<h4>Methods</h4>A systematic literature review was ...[more]

PMID: 34055340

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Project description:AbstractChronic musculoskeletal pain (CMP) and coexisting mental health conditions impact young people; however, little is known about their lived and care experiences. In a prospectively registered systematic review with qualitative evidence synthesis (PROSPERO: CRD42022369914), we explored the following: (1) lived physical, psychological, and social experiences; and (2) care experiences/preferences of young people living with CMP and mental health conditions. Inclusion criteria: studies using qualitative methods; participants aged 16 to 24 years with CMP and coexisting mental health condition(s); phenomenon explored included lived and/or care experiences. Seven databases were searched (inception to 19-May-2024), study quality was assessed, data were extracted and analysed thematically, and GRADE-CERQual was used to assess confidence in findings. Twenty-two studies (23 reports) were included (>239 participants, 82% women). Lived experiences yielded 4 themes (9 findings): 2-way relationship between CMP and mental health (2 findings, low to moderate confidence); psychosocial implications of CMP (3 findings, very low-moderate confidence); uncertainty about future (2 findings, low-moderate confidence); coping with CMP and mental health conditions (2 findings, low-moderate confidence). Care experiences/preferences yielded 3 themes (8 findings): navigating healthcare systems (2 findings, moderate confidence); receiving appropriate care (3 findings, very low-moderate confidence); point-of-care experiences and care preferences (3 findings, very low-moderate confidence). Chronic musculoskeletal pain and mental health conditions are interconnected, significantly impacting young people's lives, identities, and socialisation, yet services for CMP and mental health are often inadequate and poorly integrated. The mechanisms and interplay of CMP and mental health require deeper exploration, including how young people may be better supported with personalised, holistic, developmentally and/or life-stage-appropriate integrated care.

Project description:IntroductionProgressive supranuclear palsy (PSP) is a neurodegenerative disorder initially characterised by disturbances in gait, balance and posture, with death occurring after several years of progressive physical and cognitive decline. This, along with a low index of suspicion, a high degree of diagnostic uncertainty and no approved treatment options, greatly impacts the lives of patients and caregivers. This research was conducted to (i) gain insight into the clinical and emotional journey of patients with PSP, (ii) assess experiences and perspectives, (iii) understand disease impact and (iv) identify key challenges and unmet needs.MethodsA literature search and qualitative interviews with six PSP experts were conducted to map the clinical pathway and identify breakpoints. The pathway was validated by key opinion leaders in seven countries. Qualitative research was conducted over 6 months in seven countries with PSP stakeholders (N = 112) to explore the emotional journey. The approach included self-ethnography, 60-min telephone interviews and the completion of 7-day smartphone diaries.ResultsThe current PSP clinical journey can take many different pathways, with patients cycling through the healthcare system before a correct referral is made and a possible/probable diagnosis received. Breakpoints contribute to delays in accessing appropriate clinical care, a high degree of diagnostic divergence and suboptimal management of the disease. The emotional journey is dominated by negative feelings, although some moments of positivity were noted. The research highlighted a lack of disease understanding amongst all stakeholders and a lack of support for patients/caregivers. The authors make a number of recommendations for care improvements, including longer consultation times, closer collaboration among healthcare professionals and patient organisations, and more varied support and information for patients/caregivers.ConclusionThis work represents a major collaborative effort to understand the lived experience of PSP. The research illustrates that a coordinated effort from all stakeholders is required to address ongoing needs and challenges within PSP.

Project description:ObjectivePreterm infants are subjected to numerous painful procedures during their neonatal intensive care unit (NICU) hospitalization. Despite advancements in pain alleviation, nurses remain challenged to provide timely and effective pain management for preterm infants. Greater understanding of the lived experience of nurses caring for preterm infants in pain could provide novel insights to improve pain management for this vulnerable population. The aim of this meta-ethnography was to synthesize and interpret qualitative findings of nurses' experiences of taking care of preterm infants in pain.MethodsAn extensive literature search in PubMed, CINAHL, PsycINFO, Scopus, BIOSIS and ProQuest Dissertation and Theses Database was conducted, including studies within the past 10 years. Two nursing researchers conducted data extraction and analysis independently. Inclusion criteria were applied to search for qualitative studies of nurse participants who worked in the NICU taking care of preterm infants. Studies published in a language other than English, articles that did not include qualitative data and qualitative data that could not be extracted from the findings or did not discuss nurses' experiences were excluded. Critical Appraisal Skills Programme was used for literature quality evaluation.ResultsEight studies remained after further screening according to inclusion and exclusion criteria. These eight studies were conducted from 2013 to 2018 and totally enrolled 205 nurses from Iran, Canada, the United States, Finland, Sweden, Switzerland, and Australia. Five themes emerged on the nurses' perspectives of taking care of preterm infants in pain: 1) They sense the neonatal pain; 2) Adverse consequences of unrelieved pain; 3) Barriers of managing pain; 4) Concerns of available approaches for pain relief; 5) Failure to work with parents.ConclusionsThis meta-ethnography identified nurses' understanding of pain in preterm infants that can be assessed, and they acknowledged that unrelieved pain could cause developmental deficits in infants. The barriers are lack of training and support on pain assessment and intervention in preterm infants. Optimizing workload and environment, developing age-specified pain assessment and intervention, receiving emotional support and training, and building up a rapport with parents are urgent needs for nurses to provide better care to infants having pain.

Project description:IntroductionChronic musculoskeletal (bone, joint or muscle) pain is disabling. People with it frequently have difficulties in managing everyday activities. Individuals may rely on family members or friends to support them. These people are known as informal caregivers. No interventions have previously addressed the health needs of people with chronic musculoskeletal pain and their caregivers. In response, the JOINT SUPPORT programme was developed. In this study, we will assess the feasibility and acceptability of conducting a pragmatic, multicentre, randomised controlled trial (RCT) to test the clinical and cost-effectiveness of the JOINT SUPPORT programme to support these individuals.Methods and analysisThis will be a mixed-methods feasibility RCT. We will recruit 80 patients with chronic musculoskeletal pain with their informal caregivers. Patients will be randomised to usual National Health Service (NHS) care OR usual NHS care plus a caregiver-patient dyad training programme (JOINT SUPPORT). This programme comprises of five, 1-hour, group-based sessions for patients and caregivers, delivered by trained physiotherapists or occupational therapists. It includes developing skills in: understanding pain, pacing, graded activity, fear avoidance and goal-setting, understanding benefits of physical activity and skills in medication management. This will be re-enforced with a workbook. After the group-based sessions, patients and caregivers will be supported through three telephone sessions with a therapist. Data collected at baseline and 3 months will include: screening logs, intervention logs, fidelity checklists and clinical outcomes on quality of life, physical and emotional outcomes, adverse events and resource use. Qualitative research with 24 patient-caregiver dyads and 12 healthcare professionals will explore the acceptability of trial processes. Stop-go criteria will inform the progression to a full trial.Ethics and disseminationEthical approval was obtained on 22 February 2022 (National Research Ethics Committee Number: 22/NW/0015). Results will be reported at conferences, peer-review publications and across social media channels.Trial registration numberISRCTN78169443.

Project description:ImportanceAlthough there is substantial evidence to suggest the health benefits of acceptance and commitment therapy (ACT) among informal caregivers of people with chronic health conditions, the great variation in intervention designs among published studies limits its application.ObjectivesTo identify intervention characteristics of ACT that are associated with improved psychological health and to assess the acceptability of ACT among informal caregivers.Data sourcesSeven English- and 3 Chinese-language databases without limits on publication dates, the reference lists of previous reviews, and gray literature were searched up to February 2023.Study selectionRandomized clinical trials comparing the effect of ACT vs control groups on improving psychological health among informal caregivers.Data extraction and synthesisTwo reviewers independently screened searched records and extracted data from eligible studies. Random-effects meta-analysis and mixed-effects metaregression were performed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline was followed.Main outcomes and measuresPsychological health outcomes (eg, depressive symptoms) measured by valid measurements and the acceptability of ACT based on identified parameters.ResultsA total of 29 studies with 2010 participants, published between 2015 and 2023, were identified. ACT showed moderate to large effect sizes for improving psychological health at postintervention assessments (Hedges g range, -0.55 [95% CI, -0.98 to -0.12] to -1.14 [95% CI, -1.83 to -0.45]) and at 1-to-3-month and 4-to-6-month follow-ups (Hedges g range, -0.47 [95% CI, -0.69 to -0.25] to -1.29 [95% CI, -2.33 to -0.24]). Multivariable metaregression analysis regarding intervention characteristics found that ACT delivered in a mixed individual- and group-based format, face-to-face, or through more intervention sessions was associated with greater improvements for experiential avoidance (face-to-face: β = -1.170 [95% CI, -2.020 to -0.319]; number of sessions: β = -0.242 [95% CI, -0.353 to -0.130]), depressive symptoms (mixed delivery format: β = -2.583 [95% CI, -4.845 to -0.321]; face-to-face: β = -1.555 [95% CI, -3.002 to -0.108]), or anxiety symptoms (face-to-face: β = -1.241 [95% CI, -2.337 to -0.146]). In general, ACT had low attrition rates (11%), and participants' adherence (51%-80%) and satisfactory ratings (72%-95%) lend support to its acceptability.Conclusions and relevanceThis systematic review and meta-analysis found that ACT was consistently associated with improvements in psychological health, supporting its application to improve informal care for chronic disease management. This review provides specific details on the design parameters of ACT for achieving greater efficacy.

Dataset Information

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

Background

Methods

Results

Conclusion

Publications

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

Similar Datasets

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