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

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 METHODS: A systematic literature review was undertaken of published and unpublished literature databases including: EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September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

Exploring British adolescent rugby league players' experiences of professional academies and dropout.

The purposes of this study were threefold: to explore former rugby league players’ experiences of professional academy environments, to understand their reasons for dropping out of the sport, and to explore their recommendations for optimising future talent development environments. Semi-structured interviews were conducted with nine ex-professional academy rugby league players up to one year after dropping out of playing rugby. A combination of inductive and deductive thematic analysis was employed to analyse the data. The thematic analysis revealed three general dimensions: talent development pathways, reasons for dropout, and recommendations. The findings suggest that players’ talent development experiences, and the reasons for dropout could be explained by a complex interaction of micro (e.g. negative academy experiences), meso (e.g. education), exo (e.g. player pathway structures), and macro systems (e.g. transitions to other clubs). It is concluded from these findings that talent development pathways which lack a long-term focus, and emphasise early success are likely to result in increased risk of burnout, de-motivation, and subsequent dropout. From an applied perspective, talent development pathways must consider the many personal and environmental factors which interact to determine an individual’s talent development trajectory. Furthermore, by recognising the multiple factors that may influence development, the effectiveness of development pathways may be enhanced by neither excluding “potential” through inappropriate early identification, nor ignoring crucial talent development variables that contribute toward the fulfilment of potential

State of the art:understanding and integration of the social context in diabetes care

We review the past 25 years of research addressing challenges people living with diabetes experience in their daily lives related to social contexts, i.e. in their family, at work and in society at large, and identify research gaps. We found that young people with diabetes, as they develop through to adulthood, are exposed to considerable risks to their physical and mental health. Family-system interventions have had mixed outcomes. Research in this area would benefit from attention to ethnic/cultural diversity, and involving fathers and other family members. In adults with diabetes, social support relates to better diabetes outcomes. While family member involvement in care is likely to affect health and psychosocial outcomes of the person with diabetes, key elements and mediators of effective family interventions need to be identified. The challenges of diabetes management at work are under-researched; distress and intentional hyperglycaemia are common. When depression is comorbid with diabetes, there are increased work-related risks, e.g. unemployment, sickness absence and reduced income. Research to support people with diabetes at work should involve colleagues and employers to raise awareness and create supportive environments. Stigma and discrimination have been found to be more common than previously acknowledged, affecting self-care, well-being and access to health services. Guidance on stigma-reducing choice of language has been published recently. Resilience, defined as successful adaptation to adversity such as stigma and discrimination, requires studies relevant to the specific challenges of diabetes, whether at diagnosis or subsequently. The importance of the social context for living well with diabetes is now fully recognized, but understanding of many of the challenges, whether at home or work, is still limited, with much work needed to develop successful interventions

Building productive relationships with young people with SEBD in transition: the role of identity

This article reports a study of the experiences of school leavers with social, emotional and behavioural difficulties (SEBD), which identified supportive relationships as key elements in young people demonstrating resilience through this transitional period. Almost all the young people involved in the study had access to potential helpers, but few managed to establish productive relationships with them. Analysis of interviews, conducted over a 15 month period with a group of 15 school leavers, their parents and those who worked with them, suggested that barriers and facilitators to relationship development existed at two levels: institutional and individual. This article focuses on the individual level, in which identity processes appear to play a key role. These processes are used to explain why some school leavers built productive relationships and thrived, whilst many failed to do so, and struggled. These findings have implications for policy, practice and theory

Child Well-being in the Pacific Rim

This study extends previous efforts to compare the well-being of children using multi-dimensional indicators derived from sample survey and administrative series to thirteen countries in the Pacific Rim. The framework for the analysis of child well-being is to organise 46 indicators into 21 components and organise the components into 6 domains: material situation, health, education, subjective well-being, living environment, as well as risk and safety. Overall, Japan, Singapore and Taiwan have the highest child well-being and Thailand, Indonesia and the Philippines the lowest. However, there are substantial variations between the domains. Japan and Korea perform best on the material well-being of children and also do well on health and education but they have the lowest subjective well-being among their children by some margin. There is a relationship between child well-being and GDP per capita but children in China have higher well-being than you would expect given their GDP and children in Australia have lower well-being. The analysis is constrained by missing data particularly that the Health Behaviour of School-Aged Children Survey is not undertaken in any of these countries

Comment on Gergen's "Social Psychology as History"

A recent article by Gergen suggests that social psychology cannot reasonably aspire to the general time-independent laws that are characteristic of the physical sciences. Consideration of this thesis suggests that the underlying rationale may place undue reliance on the effects of psychological enlightenment, and on the individual's needs to demonstrate his behavioral freedom and uniqueness. A tentative generali zation suggests that the processes underlying social behavior may be relatively stable, but that they operate on an endless variety of social contents (conditions) to yield the diverse social behaviors and relation ships that we observe.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/68537/2/10.1177_014616727500100207.pd

Exploring parents' experiences of promoting physical activity for their child with intellectual disabilities

Introduction: Children and adolescents with intellectual disabilities participate in low levels of physical activity and have a greater reliance on their parents to provide activity opportunities. This study explored parents’ experiences of promoting physical activity for their child with intellectual disabilities. Methods: Semi‐structured interviews were conducted with eight parents of children and adolescents with intellectual disabilities. Interviews were independently coded and analysed by two researchers using thematic analysis. Results: Four themes and nine subthemes were identified. Overall, parents had positive views of physical activity. However, parents face numerous barriers that limit their ability to promote physical activity for their child with intellectual disabilities. Conclusions: Parents experience high levels of exclusion and stigma that negatively affect their promotion of physical activity for their child with intellectual disabilities. Overcoming the barriers faced by parents could therefore be an indirect method to increase physical activity in children and adolescents with intellectual disabilities