The experience of informal caregivers of patients with motor neurone disease:A thematic synthesis

ABSTRACTObjective:Research is required in order to illustrate and detail the experiences of informal caregivers of patients with motor neurone disease (pwMND) to further advance the research base and to inform the development of future support structures and services. Due to the heterogeneous nature of caregiving for pwMND, one way in which this can be achieved is through a qualitative review. A qualitative thematic analysis of existing qualitative studies has not, to the best of the authors' knowledge, been previously undertaken. Thus, the present synthesis aims to identify caregivers' experiences and to suggest factors that contribute to these experiences in order to fulfill the required research needs.Method:A thematic synthesis of qualitative literature was conducted. AMED, Medline, SPORTDiscus, CINAHL, and PubMed were electronically searched from inception until September of 2015. Studies were eligible if they included qualitative literature reporting on firsthand experience of informal caregivers of patients with MND, were published in English, and contained verbatim quotations. Critical appraisal was undertaken using a 13-item consolidated criteria for reporting qualitative studies (COREQ) checklist.Results:A total of 10 studies met the inclusion criteria, with 148 (50 male) current or previous informal caregivers of pwMND identified. Critical appraisal demonstrated that study design and reflexivity were underreported. The synthesis derived three themes: (1) loss of control, (2) inability to choose, and (3) isolation.Significance of results:The synthesis highlighted the factors that contribute to both positive and negative caregiving experiences. Through these experiences, such suggestions for service provision as improving communication with healthcare professionals and having a single point of contact emerged. However, the outcome of such suggestions on the experience of caregivers is beyond the scope of our synthesis, so that further research is required.</jats:sec

Understanding the importance of illness narratives in people with Multiple Sclerosis who participated in an exercise rehabilitation trial; a qualitative study

Objectives: To understand how illness narrative master plots may be expressed and associated together and to determine how stories are used to demonstrate the psychological benefits of exercise rehabilitation. Design: A subtle realist paradigmatic position was assumed which utilised a hermeneutic henomenological methodology. Setting: Two community centres within the UK. Participants: A purposive sample of 10 individuals with MS (7 female, 3 male) were included. Individuals were eligible if: (a) they had undertaken at least 8 weeks of an exercise rehabilitation trial, (b) if they were older than 19 years, and (c) could understand English. Intervention: Participants had undertaken at least 8 weeks from a 12-week cycle ergometer randomised control rehabilitation trial. The trial varied the exercise intensity experienced by participants. Main Outcome Measure: A single semi-structured interview with six sub-sections that included elements related to emotional regulation. A categorical content narrative analysis was undertaken. The analysis was supplemented by integrating findings from past research studies. Results: Two themes were identified: (1) Identification of a model of narrative expression. This model establishes how narrative master plots may be associated with each other and broadly represent coping or succumbing responses to the experiences of MS. The transition in expression of master plots is detailed and associated with psychological adaptation to illness (2) The role of physical activity in contributing to psychological benefits of exercise rehabilitation identified through narrative expression. This research highlighted a dominant process of narrative master plot expression from detective, to didactic and then heroic master plot. Conclusion: The research has developed a new model for understanding the cycles related to dominant master narrative plots. Further work is needed to establish these results and future studies are needed to establish if there is feasible way to use illness narrative within clinical environments

The psychological processes of adaptation and hope in patients with multiple sclerosis: a thematic synthesis

Purpose: The purpose of the current research was to review the lived experiences of patients with multiple sclerosis (MS) in order to extrapolate the psychological process of adaptation. Methods: A thematic synthesis was undertaken within 3 phases: systematic search for literature, critical appraisal of included studies and synthesis of research. Results: A total of 47 studies were included in this review, this included 1146 (812 females, 265 males, and 69 unknown) unique patients with MS (aggregated mean age: 49.3 years [30/47 studies], aggregated time with illness: 12.3 years [28/47 studies]). The critical appraisal of research illustrated that the design of the studies and the reference to reflexivity in studies were not well considered. The synthesis was able to identify a primary response of psychological adaptation as well as distinct coping strategies. A model of emotion, hope, and adjustment was identified. Conclusion: Simple processes of adaptation for people with MS can be considered by clinicians and utilised to promote mental well-being in patients. Clinicians and researchers also need to be aware of the important psychological needs of patients during interactions. Discussion and clinical implications are provided

Are older adults with chronic musculoskeletal pain less active than older adults without pain? A systematic review and meta-analysis.

Objective: To compare the overall levels of physical activity of older adults with chronic musculoskeletal pain and asymptomatic controls. Review Methods: A systematic review of the literature was conducted using a Cochrane methodology and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Major electronic databases were searched from inception until December 2012, including the Cochrane Library, CINAHL, EBSCO, EMBASE, Medline, PubMed, PsycINFO, and the international prospective register of systematic reviews. In addition, citation chasing was undertaken, and key authors were contacted. Eligibility criteria were established around participants used and outcome measures focusing on daily physical activity. A meta-analysis was conducted on appropriate studies. Results: Eight studies met the eligibility criteria, four of these reported a statistically lower level of physical activity in the older adult sampl e with chronic pain compared with the asymptomatic group. It was possible to perform a non-heterogeneous meta-analysis on five studies. This established that 1,159 older adults with chronic pain had a significantly lower level of physical activity (−0.20, confidence interval 95% = −0.34 to −0.06, p = 0.004) compared with 576 without chronic pain. Conclusion: Older adults with chronic pain appear to be less active than asymptomatic controls. Although this difference was small, it is likely to be clinically meaningful. It is imperative that clinicians encourage older people with chronic pain to remain active as physical activity is a central non-pharmacological strategy in the management of chronic pain and is integral for healthy aging. Future research should prioritize the use of objective measurement of physical activity

Changes in physical activity, physical fitness, self-perception and quality of life following a six-month physical activity counseling and cognitive behavioral therapy program in outpatients with binge eating disorder

The aim of the current study was to explore the associations between changes in the number of binges, physical activity participation, physical fitness, physical self-perception and quality of life following a six-month physical activity counseling and cognitive behavioral program in patients with binge eating disorder (BED). In total 34 (31 women) outpatients with BED (38.5±10.7 years) completed a six-month one-day per week group-based program. Participants completed the 36-item Short Form Health Survey, the Baecke Physical Activity questionnaire, the Physical Self Perception Profile and performed a six-minute walk test (6MWT) at baseline, after three and six months. Except for physical activity at work, physical strength and self-worth perception, all parameters significantly improved after six months. The effect sizes ranged from −0.33 for the number of binges to 1.67 for participation in sports activities. Significant increases in leisure time physical activity were associated with significant improvements in physical health related quality of life, perceived sports competence and physical fitness and in perceived body attractiveness. The significant reduction in the number of binges was associated with significant improvements in physical health related quality of life. Future research should focus on detailing which techniques can stimulate physical activity participation in patients with BED

Sexual professional boundaries perceived by undergraduate and graduate physiotherapists: A cross sectional survey

Objectives: To compare self-reported experiences of and attitudes towards sexual professional boundaries (SPB) in a cohort of undergraduate and graduate physiotherapists domiciled in the UK and Australia. Design: A cross sectional survey design was utilised to capture data from two UK cohorts. Setting: Data was collected from a University in the Midlands region of England. Participants: Fifty one final year undergraduate students and 17 graduate students took part in this study. This was compared to published data from Australian undergraduates (n = 67) and Australian graduates (n = 939). Outcome measures: A questionnaire consisting of 3 distinct sections was distributed. Section 1 established demographic information, section 2 considered personal experience of the SPB, and section 3 considered attitudes to 6 vignettes describing a variety of scenarios examining the SPB. Results: Graduate students in both cohorts demonstrated a greater awareness of professionals crossing the SPB. Self reported sexual attraction towards a patient was significantly higher in graduate students (50%) compared to undergraduates (9%). Six percent and 4% of UK and Australian graduates reporting they had dated a patient. However, a much higher percentage (53% and 17% respectively) reported knowing a colleague who had dated a patient. A significant difference between graduates and undergraduate in their attitudes towards selected vignettes describing SPB crossings was also identified. Conclusions: The current results provide evidence of inappropriate sexual behaviour occurring within the UK. Both graduates and undergraduates require training pertinent to the topic of SPB. Further research is required to enhance our understanding of this topic area

The avoidance of activities due to fear of falling contributes to sedentary behavior among community-dwelling older adults with chronic musculoskeletal pain: A multisite observational study

Objective: Physical inactivity and sedentary behavior (SB) are leading causes of mortality. We investigated if older adults with chronic musculoskeletal pain (CMP) are more sedentary than a group of similar age and sex without CMP and possible contributory factors to this. Method: In this multisite observational study, 285 community-dwelling older adults (response rate 71%) took part. One hundred forty-four had CMP (78.4 years, 65.9% female), and 141 formed the comparison group without CMP. Details regarding falls were collected, and all participants completed the brief pain inventory (BPI), modified version of the survey of activities and fear of falling in elderly scale (mSAFFE), and the International Physical Activity Questionnaire (IPAQ) to measure SB. Data were analyzed with hierarchical regression analysis. Results: Older adults with CMP spent approximately 3 1/2 hours a day more being sedentary than the comparison group (11.5 hours vs 7.9, P < 0.001). The addition of BPI interference and mSAFFE scores in the regression analysis resulted in an R2 change of 10.4% in IPAQ scores, over and above the variance explained by the background demographic, medical, and mobility factors. Excessive concerns about the consequences of falling did not increase the variance in SB. Within the final model, mSAFFE scores were the largest independent predictor of SB (β = 0.461, P < 0.001). Conclusions: Older adults with CMP are significantly more sedentary than those of a similar sex and age without CMP. It appears that the avoidance of activities due to fear of falling is a significant contributory factor to SB in older adults with CMP