A systematic review of self-concept change in multiple sclerosis.

Self-concept or sense of self is often altered in the context of neurological illness. Yet, these core aspects of subjective experience are poorly understood for people with multiple sclerosis (MS). This systematic review aimed to synthesize the findings of quantitative and qualitative studies investigating self-concept in MS. PsycINFO, MEDLINE (PubMed), CINAHL, Scopus, and Web of Science were last systematically searched in May 2021, with the Mixed Methods Appraisal Tool and Consolidated Criteria for Reporting Qualiatative Research used to appraise the quality of the eligible articles. Articles were included if they measured or explored self-concept in MS populations, were published in English and peer-reviewed. A total of 30 studies (11 quantitative, 19 qualitative) were identified. Quantitative studies were synthesized using a narrative approach, with results suggesting that MS is associated with some degree of self-concept change. Qualitative studies were synthesized using thematic synthesis, with results illustrating a complex process of self-concept change that is catalyzed by MS-related events and characterized by varying degrees of resistance to, or acknowledgement of, such changes. Future prospective longitudinal studies are needed to characterize the nature of self-concept change in MS using validated tools that measure relevant aspects of self-concept for the MS population.

"A little bit of hope goes a long way": Exploring the role of peer workers in alcohol and other drug rehabilitation services.

INTRODUCTION: Peer workers operating within health care settings can offer unique perspectives based on their own lived experience. Within alcohol and other drug (AOD) rehabilitation services, the potential value of peer work is becoming increasingly recognised. This qualitative study aimed to evaluate a newly implemented peer worker program located across three rehabilitation services in Tasmania, Australia. METHODS: Online interviews were conducted with eight clients, seven peer workers, and five non-peer worker employees with varied experience with peer worker programs. All interviews were audio-recorded and transcribed verbatim. RESULTS: Guided by an overarching exploratory-descriptive methodological framework, thematic analysis generated three overarching themes: 1) Enhancing and supporting client experiences (what peer workers did in their role to improve client experiences, 2) Changing experiences with AOD rehabilitation (the unique benefits and changes that peer work brings to AOD rehabilitation services) and 3) Finding organizational value (how defining peer work and the feasibility of the peer worker role was challenged by different organizational factors). Overall, peer work was viewed as a positive addition to all rehabilitation services that was able to enhance client experiences through various mechanisms, such as by sharing their own stories, assisting with understanding, and creating safety. Peer work was also able to create change in AOD services, by instilling hope and reducing stigma. However, ongoing challenges with defining the peer worker role in a way that offers organizational recognition and financial security remain. CONCLUSION: Peer workers offer a unique and valuable perspective when working within rehabilitation services. Through their own lived experience peer workers were able to support clients and assist them in their recovery. These findings highlight the potential benefit of peer work programs within AOD rehabilitation services.

"Oh it's changed, it's changed 10-fold": understanding the experience of self-concept change from the perspectives of people with multiple sclerosis.

PURPOSE: The relevance of self-concept change in the process of psychosocial adjustment following multiple sclerosis (MS) diagnosis has become more apparent in recent years. The current study aimed to investigate the experience of self-concept change as described by an MS sample. METHODS: Sixteen people (aged 26-67 years, 62.5% female) who had been living with MS for an average of 12 years, participated in a single online semi-structured interview. All interviews were audio-recorded and transcribed verbatim. RESULTS: Thematic analysis guided by phenomenology produced three superordinate themes: 1) Changing life (salient external events that were related to changing views of self), 2) Changing self (the experience of self-concept change), and 3) Changing thoughts (the internal thought processes that served as the filter between changing life circumstances and changing self-views). Overall, external events appeared to facilitate a process of internally driven revaluations and redefinitions of self-concept both globally and within specific self domains. CONCLUSION: Self-concept change due to MS emerges as a complex internal process, often arising from external challenges and changes in everyday life. These novel findings illustrate the need to better support people with MS to make sense of changes to their self-concept, particularly during key transitions across the illness.Implications for RehabilitationSelf-concept change following MS diagnosis and throughout the disease course has wide-ranging impacts on psychological adjustment.Several key external events contribute to changing the self-views of people living with MS.While external events prompt change, key internal processes likely facilitate the redefinition of self-concept.Targeted support during key transitional periods to assist pwMS to productively renegotiate and manage these changes to their self-concept is needed.

The multiple sclerosis self-concept change scale: Development and validation of a new measure.

BACKGROUND: Self-concept change may impact psychological wellbeing and functioning in people with MS (pwMS). However, the extent and nature of change in self-concept that pwMS experience is poorly understood, owing to the lack of quantitative measures available to assess this construct. OBJECTIVE: To examine the factor structure, validity, and internal consistency of the newly developed Multiple Sclerosis Self-Concept Change Scale (MSSCCS). METHODS: Items measuring self-concept change were created, reviewed by a panel of experts and pre-tested in a sample of 135 pwMS. A revised list of 51 items were then administered to 1307 pwMS (80.3% female; Age M = 59.21 years, SD = 11.40), together with measures of disease impact and psychosocial functioning. RESULTS: Exploratory factor analysis using principal axis factor extraction in 643 randomly selected participants yielded 23-items measuring 5 latent factors for the final MSSCCS. Confirmatory factor analysis involving the remaining participants supported the 5-factor model, as well as a 2nd order model of "global change". Internal consistency of the total scale was good (α = 0.89). The MSSCCS also demonstrated evidence of concurrent and construct validity. CONCLUSION: The MSSCCS is a reliable and valid assessment, which may assist in enhancing understanding of self-concept change in pwMS.