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 METHODS: A systematic literature review was undertaken of published and unpublished literature databases including: EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September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

Meaning in the margins: postcolonial feminist methodologies in practical theology

This paper troubles research approaches in practical theology by exploring how attention to lived experiences of marginalization in postcolonial feminist theologies shapes theological methodologies. Drawing on the work of Walter Mignolo and Marcella Althaus-Reid, the margins are explored as epistemological and material sites that shape theological knowledge production. The complex intersections of experiences and identities of lives on the margins require a resistance to taxonomic or technical theological methodologies. As discussed by Mayra Rivera and Ada María Isasi-Díaz, the margins are not sites of deprivation, but of critical praxis, so theological methodology must be attentive to everyday experiences of the margins. The paper highlights where postcolonial feminist theologies add to practical theology about poetics by attending to making meaning. The paper concludes by reflecting on academic engagement with postcolonial feminist theology and the lived experiences of the margins

"Am iz kwiin" (I'm his queen): Combining interpretative phenomenological analysis with a feminist approach to work with gems in a resource-constrained setting

This article focuses on working with gems using a feminist approach to interpretative phenomenological analysis (IPA) in a resource-constrained setting. The research explores the experiences of maternal disclosure of HIV to children of HIV positive mothers in Kingston, Jamaica. A feminist approach helps recognise power imbalances within research relationships and the women’s lived experiences. We present three “gems” which illuminate women’s lived experiences and explore how popularised representations of women’s sexuality and mothering influence disclosure discourses. We use emotion work as a conceptual resource to structure the women’s narratives and challenge existing policy discourses, which arguably represent disclosure within a binary, rationalist, decision-making framework. This article adds to global literature on maternal HIV disclosure and problematises policy discourses by bringing into relief the emotion work women engage in when deciding if and how to communicate their HIV status to their children. It adds to the body of research using IPA, particularly in resource-constrained settings where IPA has thus far had little application

Organic social change

The distinctness of each person’s life and experience is an important consideration in dominant accounts of how democratic institutions should distribute basic rights and liberties. Drawing on recent social movements, philosophers like Iris Marion Young, Miranda Fricker, and Axel Honneth have nonetheless drawn attention to the distinctive claims and challenges that plurality and difference entrain in democratic societies by analysing how the dominant discourses on rights and justice tend to elide, obscure, or reify the lived experiences of individuals belonging to disadvantaged and oppressed groups. In this essay, I offer an independent justification for why we should take such lived experiences seriously. I show how the lived experiences of disadvantaged and oppressed individuals can be a resource for deep and meaningful social change. I propose a distinctive kind of social change in which the disadvantaged and oppressed themselves drive the process of transformation whereby they change the oppressive frames of difference relating to their race, class, sex, or ability. I call this kind ‘organic social change’. I also show that organic social change is distinctively important in that the disadvantaged and oppressed get to enact an empowering mode of cooperation that harnesses their singularities when they are the ones driving the process of their own and one another’s transformations

The Lived Experiences of Mentoring Nurses in Malaysia

Background: Being a nursing mentor is not an entirely new concept in nursing. However, it is a new phenomenon in the nursing profession in Malaysia. The nursing administration and the senior nurses in Malaysia have claimed that they have started a mentorship program by having senior nurses shadow new graduate nurses for the past two to three years ago. With no study found in Malaysia investigating the lived experiences of mentors mentoring new registered nurses, it led the researcher to develop this research that explores the real life experiences of these senior Malaysian nurses who mentor neophyte nurses.Objectives: This research explores and describes the lived experiences of nurses mentoring neophyte or new registered nurses at one of the major hospital in the Malaysia Borneo and how such experiences influence their daily routine as a nurse and also as a mentor. The research will also attaches meaning to these experiences and identifies both positive and negative experiences as a mentor to neophyte.Methods: The experiences of nurses mentoring the neophyte in the clinical area were captured using a qualitative approach to research and further viewed through methods informed by phenomenology, which used interpretive and descriptive semi-structured interviews. Hermeneutic interpretive phenomenology was used in the focus to analyze interview transcript into textual expression of the mentors. Three main themes emerge from this study are being unprepared and challenged, perceptions of mentees, mentor hope and desire

Globalisation in the Malaysian context : the experience of Malay adolescents with 'conduct disorders' : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Philosophy in Psychology at Massey University, Manawatū Aotearoa/New Zealand

The process of globalisation offers opportunities for a country to progress to be a greater and more competitive nation. The Malaysian government is highly inspired by the concept of globalisation in progressing towards the vision of becoming a developed nation by the year 2020. Globalisation as a process is very demanding, requiring changes to the Malaysian political, cultural, economic, educational and social landscape. These changes have presented immense challenges to Malay adolescents where Western values have conflicted with traditional values and aspirations. Without adequate preparation, the potential incommensurability of values affects the locally defined wellbeing among Malay adolescents. Given that, how Malay adolescents understand and adapt to the globalisation process remains elusive. Therefore, this research is designed to explore the experiences of Malay adolescents who are considered to experience ‗conduct disorders‘ within the Malaysian context of globalisation. This research is a qualitative research inquiry, which utilised Interpretative Phenomenological Analysis (IPA) as a method of analysis. IPA is an approach that explores in detail personal lived experience to examine what the world is like from the point of view of the participants. Initial data was collected from 28 participants with 12 participants selected from a rehabilitation centre for young offenders in Malaysia for a more thorough analysis. The lived experience of the participants is presented and explained through three levels of analysis, the participants' demographic background and history, detailed life experiences of each case and finally, the meaning they attached to their experiences. The analysis suggests that the understanding of the Malay adolescents is constructed reflecting the changes in the dynamic of all segments of life alongside the emerging new lifestyles that are embedded in the processes of globalisation. Their lived experiences are described by referring to a complex relationship with and various tensions between different tenets. Those tenets include the traditional Malay cultures, values, beliefs and practices, which are much influenced by Islamic teaching, and the emergent new values and worldviews associated with globalisation and modernisation. Due to their vulnerability regarding self-characteristics, innate capabilities and the systemic flaws of relevant support systems, they are described as problematic in meeting the new, yet challenging environment. The participants lost their primary and reliable sources of survival. Instead, they are being introduced to various alternative resources that promote values and cultures that are against the normality of local practices. As a result, they end up in the criminal justice system. Realising that they have gone ―off track‖, the participants shared their intention to recover through various strategies, which include both action oriented and cognitive frameworks, but at the same time, they expected to face a range of hassles that may contribute to some difficulties for them to make progress. This research comes out with an argument that questions the appropriateness of the relevance of the diagnostic system of conduct disorders as defined in DSM. The experiences of the participants‘ suggested that they simply reacted to the changing context which offered immense challenges to their lived experiences. Therefore, rather than disordered the adolescents can be understood as responding to the conflicting conditions they face. Keywords: Malay adolescents, globalisation, conduct disorders, lived experiences, Interpretative Phenomenological Analysi

Access to healthcare for people seeking and refused asylum in Great Britain: a review of evidence

This research report is a review of evidence looking at the barriers people seeking or refused asylum face in trying to access healthcare services in the UK, and what may help them to do so more easily. This report, and the partner report on lived experiences (https://www.equalityhumanrights.com/en/publication-download/lived-experiences-access-healthcare-people-seeking-and-refused-asylum), will be of interest to people who play an important role in delivering healthcare and related support services to people seeking or refused asylum. We have also made recommendations for what changes are needed (https://www.equalityhumanrights.com/en/publication-download/making-sure-people-seeking-and-refused-asylum-can-access-healthcare-what-needs) to make sure that people seeking and refused asylum have full enjoyment of their right to health. This review was carried out by Imperial College London, with primary data provided by Doctors of the World UK

Road: artists and the stop the M11 link road campaign 1984 - 1994

The project 'Road' is an archive of text, images and oral recordings that document the living history of the 'No M11 Link Road' campaign in East London (Leyton, Leytonstone and Wanstead) from 1984 to 1995, and the people that lived in and visited the area. Road: Acme Artists and the Stop the M11 Link Road Campaign, 1984 – 1994, celebrates and preserves the experiences and thoughts of artists, protesters and the community that lived and worked on the route of the M11 link road

Doctoral‐Level Counseling Students’ Experiences of Social Class Microaggressions

The authors recruited 11 doctoral‐level counseling students to participate in a study exploring the lived experiences of people who have encountered social class microaggressions (SCMs). Findings (consisting of 6 themes) suggest that SCMs are a distinct phenomenon arising from interpersonal and environmental exchanges that damage recipients. The authors present implications for counselor education and future research trajectories

Interdependence: Being Reformed by Students with Disabilities

Throughout my career in special education, I have reconsidered my beliefs about disability. As I have transitioned from a special educator to a teacher trainer in India to an assistant professor in a Christian college, I have looked beyond limitations and deficits of my students to see individual uniqueness. In this article, I share my lived experience of people with severe special needs ministering to me in India, explore the lived experiences of other disability advocates, and describe the implications this has for my teaching at a Christian college