Informal carers’ experiences of caring for someone with Multiple Sclerosis: A photovoice investigation

ObjectivesThis study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context.DesignReal‐time qualitative design using the photovoice method.MethodsTwelve MS carers (aged 30–73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis.ResultsSeven inter‐related themes were identified. MS caregiving‐related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants’ positive experiences that enhanced their QoL.ConclusionsFindings demonstrated the multi‐faceted and complex nature of MS caregiver’s QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers’ QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers

Experiences of adjustment to secondary progressive multiple sclerosis: a meta-ethnographic systematic review

Purpose: To provide an overview of the experiences and needs of patients adjusting to life after receiving a diagnosis of secondary progressive multiple sclerosis (SPMS).Method: We conducted a meta-ethnographic synthesis of qualitative studies on the experiences of transition to SPMS, based on a systematic literature search of CINAHL, PsycINFO, Embase, MEDLINE, and Web of Science. Identified studies were quality-appraised using a critical appraisal checklist, and individual findings synthesised inductively.Results: The synthesis included 12 articles with 144 people with SPMS. Adjusting to SPMS transition encompassed a variety of reactions and coping strategies. Successful adjustment was associated with accepting and adapting coping strategies, and availability of social support and relationships. Clinical services increased uncertainty around adjustment where patients felt clinicians were not transparent with them about their changing diagnosis.Conclusions: People adjust to SPMS in different ways, with the success of adjustment influenced by a patient’s primary coping mechanism. Coping mechanisms are determined by pre-existing individual differences, alongside engagement with, and quality of, social support networks and activities. Services should ensure that people are provided with informational support about their illness progression, and emotional support concerning coping strategies, social networks, and physical activity, as these are key determinants of successful adjustment

Cognitive measures used in adults with multiple sclerosis: A systematic review

Cognitive problems are common in people with Multiple Sclerosis (MS), and researchers and clinicians have used a vast array of measures to assess cognition. Our aim was to systematically identify cognitive measures routinely used in MS research, and outline their different uses. Previous recommendations of cognitive measures to use in MS have relied on expert consensus approaches. We believe this systematic review is a starting point for an evidence-based approach to recommend cognitive tests for use with people with MS. We systematically searched electronic databases using relevant search terms for studies that assessed cognitive functioning in MS (last search in February 2020). From 11,854 abstracts retrieved, based on title and abstract review, 2563 remained. Data were extracted from 1526 studies. Studies used 5665 measures of cognition, with 316,053 people with MS. Substitutional style tests, serial addition tests, and word list learning tests were the most commonly used individual tests, and the Brief Repeatable Battery of Neuropsychological Tests was the most commonly used battery. Some of the most frequently used measures were potentially inappropriate due to measuring irrelevant domains of cognition, and issues with sensitivity. Further research is needed to ascertain the psychometric properties, and acceptability of measures for people with MS

Acceptance-based telephone support around the time of transition to secondary progressive multiple sclerosis: A feasibility randomised controlled trial

IntroductionTransitioning to secondary progressive multiple sclerosis (SPMS) is a difficult time for people, fraught with psychological uncertainty and an increase in physical disability. In parallel, healthcare appointments become less frequent, most disease modifying treatments are withdrawn, and social contacts typically become more difficult to maintain. The aim of this study was to assess whether providing a brief, Acceptance and Commitment Therapy (ACT)–based telephone support intervention during transition to SPMS is feasible, effective and valued by participants.MethodA single centre, mixed-methods, two-arm feasibility randomised controlled trial (RCT), comparing (i) ACT-based support + treatment as usual to (ii) treatment as usual only was conducted for those who had transitioned to SPMS. Feasibility, signal of efficacy and acceptability were assessed in both groups by self-report measures at 3 timepoints (baseline, 8 weeks, 12 weeks), and feedback interviews analysed using framework analysis following the completion of the study.ResultsThe recruitment strategy was not feasible: 14 of 40 were recruited (35%) during the four-month time period (Mage = 53, 10 women). The data collection procedures and trial processes were feasible and acceptable to participants, reflected through all measures being completed, no attrition, and positive participant interview feedback. The intervention did not demonstrate a signal of efficacy between baseline and 8-week or 12-week follow up on measures, but wide confidence intervals preclude drawing strong conclusions. Positive interview feedback suggested outcomes not being captured through self-report measures.DiscussionDue to an unsuccessful recruitment strategy and mixed evidence of efficacy, certain adjustments should be made to the intervention and methodology before progressing to a definitive trial. A more efficient recruitment strategy, or longer recruitment period is needed to recruit a large enough sample. Adapting the ACT intervention may be needed to ensure that it targets psychological flexibility, which could include changing the workbook or session delivery based on interview feedback, however the small sample size means we should interpret the efficacy findings with caution

Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research

Objective: The lack of adequate conceptualisation and operationalisation of quality of life (QoL) limits the ability to have a consistent body of evidence to improve QoL research and practice in informal caregiving for people with multiple sclerosis (MS). Thus, we conducted a meta-synthesis of qualitative research to improve the conceptual understanding of the experiences of MS carers and to identify factors that affect carers' QoL. Design: Systematic searches of five electronic databases yielded 17 qualitative studies which were synthesised using the principles of meta-ethnography. Results: The synthesis resulted in nine inter-linking themes: Changes and losses; challenges revolving around MS; caregiving demands; burden of care; future concerns; external stressors; experiences of support; strategies used in managing the caregiving role; and motivating factors. Our findings suggest that MS carers can have both positive and negative experiences which may bring challenges and rewards to the carers. Conclusion: We present a proposed QoL model for MS caregiving which can be used to inform the development of interventions for MS carers to improve their QoL. However, further empirical research is needed to examine the utility of this model and to explore the concept of QoL in MS carers in more detail

Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies

PurposeThis meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis.MethodsFive electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence.ResultsThirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis.ConclusionsOur synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis.Implications for RehabilitationThe period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding.Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions.Adaptive coping skills and support resources could contribute to better adjustment following diagnosis.Support interventions should be tailored to the needs of newly diagnosed people

Psychosocial adjustment to multiple sclerosis diagnosis: A meta-review of systematic reviews

This meta-review aimed to synthesise evidence on psychosocial adjustment to multiple sclerosis, to identify available treatment models and services for recently diagnosed individuals, and to explore their effectiveness. MEDLINE, CINAHL, EMBASE, PsycINFO, Web of Science, Cochrane Database of Systematic Reviews and grey literature were searched to include systematic reviews on psychosocial adjustment in multiple sclerosis. Two reviewers independently screened and assessed the quality of the selected reviews. Data were synthesised using narrative approach. Overall, thirty systematic reviews were included (with ~131,813 people with multiple sclerosis). A variety of psychosocial factors were identified in relation to adjustment to multiple sclerosis. Seven theoretical models that underpinned the available services and ten different intervention categories (e.g. cognitive behavioural approaches, mindfulness) for adjustment to multiple sclerosis were identified. There was some evidence that these interventions improved quality of life and coping, however, the difference they could make to people's adjustment was inconclusive. It was also difficult to conclude whether these interventions were particularly effective with the newly diagnosed. There is some support for the effectiveness of adjustment interventions. However, there is a need to design and rigorously evaluate support programmes for newly diagnosed people with multiple sclerosis, specifically focusing on information and adjustment support

Home-based pre-surgical psychological intervention for knee osteoarthritis (HAPPiKNEES): a feasibility randomized controlled trial

Objective: To determine the feasibility of conducting a trial of a pre-surgical psychological intervention on pain, function, and mood in people with knee osteoarthritis listed for total knee arthroplasty. Design: Multi-centre, mixed-methods feasibility randomized controlled trial of intervention plus usual care versus usual care. Setting: Participants’ homes or hospital. Participants: Patients with knee osteoarthritis listed for total knee arthroplasty and score >7 on either subscales of Hospital Anxiety and Depression Scale. Intervention: Up-to 10 sessions of psychological intervention (based on cognitive behavioural therapy). Main measures: Feasibility outcomes (recruitment and retention rates, acceptability of trial procedures and intervention, completion of outcome measures), and standardized questionnaires assessing pain, function, and mood at baseline, and four and six months post-randomisation. Results: Of 222 people screened, 81 did not meet inclusion criteria, 64 did not wish to participate, 26 were excluded for other reasons, and 51 were randomized. A total of 30 completed 4-months outcomes and 25 completed 6-month outcomes. Modal number of intervention sessions completed was three (range 2–8). At six-month follow-up, mood, pain, and physical function scores were consistent with clinically important benefits from intervention, with effect sizes ranging from small (d = 0.005) to moderate (d = 0.74), and significant differences in physical function between intervention and usual care groups (d = 1.16). Feedback interviews suggested that participants understood the rationale for the study, found the information provided adequate, the measures comprehensive, and the intervention acceptable. Conclusion: A definitive trial is feasible, with a total sample size of 444 people. Pain is a suitable primary outcome, but best assessed 6 and 12 months post-surgery