Living well with a long-term condition : service users’ perspectives of a self-management intervention

The outcomes of self-management interventions are commonly assessed using quantitative measurement tools, and few studies ask people with long-term conditions to explain, in their own words, what aspects of the intervention they valued. In this Grounded Theory study, a Health Trainers service in the north of England was evaluated based on interviews with eight service-users. Open, focused, and theoretical coding led to the development of a preliminary model explaining participants’ experiences and perceived impact of the service. The model reflects the findings that living well with a long-term condition encompassed social connectedness, changed identities, acceptance, and self-care. Health trainers performed four related roles that were perceived to contribute to these outcomes: conceptualizer, connector, coach, and champion. The evaluation contributes a grounded theoretical understanding of a personalized self-management intervention that emphasizes the benefits of a holistic approach to enable cognitive, behavioral, emotional, and social adjustments

Perceptions of accident risk among on-track machine workers : an interview study

Although non-fatal injuries remain a frequent occurrence in safety-critical work, very few studies have examined the ways in which organisational systems and processes influence individual safety behaviour. Even fewer have explored the perceived factors contributing to accident risk using qualitative research methods. This short paper presents the initial results from a thematic analysis of ten interviews with On Track Machine (OTM) operatives. Issues arising from two key themes (fatigue, and safety communication and training) are briefly described. Implications, planned organisational response, and opportunities for further research are discussed

The experience of growing up with a parent with schizophrenia : a qualitative study

In this study, we investigated the subjective experiences of 6 individuals from Spain who grew up with a parent with schizophrenia. Our objectives were to explore participants’ perceptions of the effects of these experiences upon their development and their sense of continuing impact upon their adult lives and relationships. Our approach was guided by interpretative phenomenological analysis and data collection involved in-depth interviews with participants. Three themes were generated: role change and loss, prison of silence, and “Who am I?”. The findings highlighted the stigma of schizophrenia in society, a lack of support, emotional deprivation in childhood, and lasting negative effects for these participants upon their world view

'It's about giving yourself a sense of belonging’: community-based history and well-being in South Yorkshire

Community-based history is a highly popular activity in neighbourhoods across the UK. The practice of participants doing history, often their own, for themselves, marks its difference from other forms of public history. This article explores the potential of involvement in community-based history in the South Yorkshire region to contribute to social identity and well-being and to inform public policy concerning health and well-being. We demonstrate the role of community-based history in building social capital and creating social links, tackling the negative effects of isolation, providing meaning, generating public and self-esteem and contributing to personal identity and belonging, as well as improving and strengthening local communities. Our findings reveal the relevance of community history in shaping notions of place and a sense of well-being through citizen engagement, with implications for community governance. At the same time, the limitations of our sample, particularly in relation to 'race' and whiteness, mirror an overwhelmingly White British participation in the wider heritage sector. This confirms that issues concerning whose history is represented, by whom, for what purpose and in what context, require consideration and raises questions regarding the role of community history in enabling a nostalgic and exclusive place-making with negative implications for non-British and/or non-white inhabitants

Comorbid Conditions, Mental Health and Cognitive Functions in Adults with Fibromyalgia

This study examined age group differences across adulthood in comorbid conditions, mental health, and cognitive function in people with fibromyalgia. Participants completed an online survey about how fibromyalgia affects their everyday life. Chi square analyses were conducted to examine associations between age groups and (a) comorbid conditions and (b) severity of anxiety and depression. ANOVA analyses examined age group differences on aspects of self-report cognitive function. The greatest prevalence of comorbid conditions was found in middle adulthood. Early adulthood was associated with more cases of severe anxiety with the lowest number of cases being in the oldest age group. Middle adulthood was associated with worse self-report pain compared to the youngest age group. Older adults showed better self-report cognitive function compared to younger adults. Distinct age profiles based on comorbid conditions, mental health, and symptom severity across adulthood in fibromyalgia have been demonstrated

Desert island data: an investigation into researcher positionality

The nature of qualitative research means that the personal values of an individual researcher can and do (unwittingly) shape the way in which they analyse data sets, and the resultant conclusions drawn. However this phenomenon is under-studied in social research: this article seeks to help rectify this. It presents findings from a small research project focused on discourses of class, masculinity, and work among British male comedians from working-class backgrounds, interviewed on the popular BBC Radio 4 radio programme Desert Island Discs. Six different researchers, from varying disciplinary, methodological, and theoretical groundings, as well as from varying personal backgrounds, analysed three interview recordings and transcripts separately. All the researchers wrote up their individual analyses of these interviews and wrote reflexive pieces examining why they thought they approached the data as they did. The researchers then came together as a group to compare and contrast findings and approaches. The results from this study, including the discrepancies and distinctions and final group analysis, are reported alongside a thorough discussion of the project's methodology. We find that the project evidenced how a diverse research team can bring out deeper and richer analyses, and was a refreshing way to try and answer questions of individual and collective positionalit

Maternal obesity management using mobile technology : a feasibility study to evaluate a text messaging based complex intervention during pregnancy.

Background. Maternal obesity and excessive gestational weight gain (GWG) are on the rise with negative impact on pregnancy and birth outcomes. Research into managing GWG using accessible technology is limited. The maternal obesity management using mobile technology (MOMTech) study aimed at evaluating the feasibility of text messaging based complex intervention designed to support obese women (BMI ≥ 30) with healthier lifestyles and limit GWG. Methods. Participants received two daily text messages, supported by four appointments with healthy lifestyle midwife, diet and activity goal setting, and self-monitoring diaries. The comparison group were obese mothers who declined to participate but consented for their routinely collected data to be used for comparison. Postnatal interviews and focus groups with participants and the comparison group explored the intervention’s acceptability and suggested improvements. Results. Fourteen women completed the study which did not allow statistical analyses. However, participants had lower mean GWG than the comparison group (6.65 kg versus 9.74 kg) and few (28% versus 50%) exceeded the Institute of Medicine’s upper limit of 9 kg GWG for obese women. Conclusions. MOMTech was feasible within clinical setting and acceptable intervention to support women to limit GWG. Before further trials, slight modifications are planned to recruitment, text messages, and the logistics of consultation visits

Establishing and facilitating practice-based interprofessional learning: experiences from the TUILIP project.

The Trent Universities Interprofessional Learning in Practice (TUILIP) project aimed to establish interprofessional learning (IPL) for healthcare students in clinical practice settings. Ten IPL facilitators were employed in eight varied practice setting pilot sites for up to a year to research, develop and run locally appropriate, sustainable IPL initiatives. Following the pilot phase, a qualitative evaluation was conducted in each site by means of interviews or focus groups with all key stakeholders (facilitators, clinical managers, practitioners, students, service users, carers). Data collection was guided by Kirkpatrick’s evaluation framework (1996), which focuses upon participant reactions, and their perceptions of learning, behaviour change and sustainable impact. In keeping with this framework, participants were asked to discuss their experiences of TUILIP in their placement setting (including its facilitation), and their opinions about its impact and success in terms of learning, behaviour change and sustainability. We report a subset of evaluation results relating to the roles of the facilitator, facilitation processes, experiences and challenges, personal and professional impact upon facilitators, and implications for IPL projects in practice. Facilitation tasks included preparing the ground, earning credibility, gathering ideas, researching feasibility, developing initiatives, involving service users, trialling and embedding initiatives. Facilitators were faced with challenges such as getting a focus, time limitations and dealing with logistics. They reported highs (being a fly on the wall, protected time, their educational role, and a sense of satisfaction) and lows (loneliness, frustration and fear of failure), but considered they had developed personally and professionally as a result of their experiences. Results demonstrated the complexity and demands of establishing and facilitating IPL initiatives in practice settings. Facilitation was time-consuming and effortful and did not always achieve its aims, but was a source of satisfaction and personal development. These findings suggest higher education institutions and practice settings should consider carefully the selection, preparation and support for facilitators of practice-based IPL, as well as how to engage local practitioners and service users, and embed changes in the clinical setting

Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study

Literature reports the challenges of parenting a child with Autism Spectrum Disorder (ASD), and its impacts on emotional and psychosocial wellbeing, both generally and specifically in the Hong Kong context. Positive parenting experiences are less well defined; however, research and theory in the positive psychology field suggests that people living with adversity can find and create meaning, positivity and happiness. This study aimed to investigate Hong Kong parents’ experiences and perceptions of happiness and well-being in raising their children with ASD. Eight parents (2 fathers; 6 mothers) were interviewed in-depth about their parenting-related perceptions and experiences of happiness and well-being. A thematic analysis generated four themes: A Growth Mindset, Connectedness, Self-Care, and A Better Me, each comprising several related sub-themes. Findings indicated that happiness was crucial for these parents, despite the challenges of raising a child with ASD in Hong Kong, and that they actively sought out activities to enhance their happiness, satisfaction and meaning. Results are in keeping with positive psychology theory, add specific detail relating to this group and could be extended with further research. Findings could also inform policy makers and support services in the development of welfare plans, educational resources and social support for this group of vulnerable families in future

Patients' perspective of the effectiveness and acceptability of pharmacological and non-pharmacological treatments of fibromyalgia.

Background and aims Fibromyalgia is a complex condition characterised by widespread pain, sleep disturbance, fatigue and cognitive impairment, with a global mean prevalence estimated at 2.7%. There are inconsistencies in guidelines on the treatment of fibromyalgia leading to dissatisfaction from patients and healthcare professionals. This study investigated patient-reported outcomes of pharmacological and non-pharmacological treatment usage and effectiveness with an assessment of acceptability. Methods Nine hundred and forty-one participants completed a self-administered anonymous questionnaire giving quantitative data of demographics, treatment usage and treatment outcomes. Participant-reported effectiveness and side effects were compared in the following treatment classes: analgesics, antidepressants, gabapentinoids, gastrointestinal treatments, activity interventions, dietary-based treatments, and psychological, physical and alternative therapies. Participants also reported whether they knew about or had tried different treatments. Results The results from the online survey indicated that the range of mean effectiveness ratings were similar for pharmacological and non-pharmacological treatments, whereas non-pharmacological treatments had lower side effects ratings and higher acceptability relative to pharmacological treatments. Participants were not aware of some treatment options. Conclusions The results show lower side effects ratings and higher acceptability for non-pharmacological treatments compared to pharmacological treatments despite similar effectiveness ratings. Implications This article presents results from a large online survey on fibromyalgia patient perspectives of pharmacological and non-pharmacological treatments. Results will inform healthcare professionals and patients about optimal treatments based on ratings of effectiveness, side effects and acceptability that are tailored to patient symptom profiles. Some participants were unaware of treatment options highlighting the importance of patient education allowing collaboration between patients and healthcare professionals to find optimal treatments