To explore the longitudinal experience of taking part in a physiotherapy-led exercise adherence programme as part of the OsteoPorosis Tailored exercise adherence INtervention (OPTIN) trial.
Longitudinal qualitative study using semi-structured interviews analysed with reflexive thematic analysis—an interpretive approach.
UK National Health Service.
12 participants with vertebral fragility fracture (VFF) within the exercise adherence intervention arm of the OPTIN trial (n=63 in each arm). Interviews were undertaken with each participant at three time points: (1) within the first 2 weeks of initial assessment, (2) at the end of the 16-week intervention and (3) a year post-baseline.
We distilled five themes. (1) One size does not fit all: this focuses on the importance of a physiotherapist individualising the exercise programme and how participants adapt it into their lives. (2) My mind and body can be in conflict or work together: this spotlights the strong link between one’s emotional and mental state with their physical state, and how they can work to positively or negatively affect exercise adherence behaviour. (3) Expanding my circle of support: this revolves around the need for support systems beyond family and friends to the physiotherapist and other people with osteoporosis. (4) Transitioning from an exercise programme to a lifestyle change: this encompasses a longitudinal perspective of the exercise programme tapering, becoming intermittent or dropping off after a year, then being replaced by sustained lifestyle changes. (5) Moving from fear to empowerment: this explores the fear and loss of former identity after VFF diagnosis transforming into hope, confidence and empowerment through knowledge, advice and coping strategies.
Findings highlight the need to work with mind and body to empower lifestyle changes and the importance of educating, tailoring, empathising and allying with the participant—all critical areas clinicians can target when treating patients with VFFs.
The co-occurrence of multiple long-term conditions, that is, multimorbidity, is increasing globally and is associated with lower quality of life and increased risk of death. The risk and prevalence of multimorbidity are higher among women compared with men, but currently, evidence focusing on women’s multiple long-term conditions during the perinatal period is limited. Existing evidence needs to be examined to determine the extent to which maternal multimorbidity or women’s multiple health needs related to pregnancy have been addressed, especially for women living in low-income and middle-income countries (LMICs) where this burden of disease is the highest. The objective of this scoping review is to map existing evidence in LMICs on (a) Study designs and data sources, (b) Context-relevant definitions and descriptions, (c) Associated risk and protective factors, (d) Relevant maternal and infant health outcomes and (e) Treatments and interventions used to manage multiple long-term conditions before, during and after pregnancy.
This scoping review will be conducted using Joanna Briggs Institute methodology and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement extension for scoping reviews. This review will include observational, experimental or quasi-experimental studies, as well as systematic or umbrella reviews, on multimorbidity in women of reproductive age (15–49 years) in prepregnancy, pregnancy or up to 6 weeks after childbirth in LMICs. The studies will focus on definitions, risk and protective factors and management strategies for multiple long-term conditions before, during and after pregnancy. Studies of morbidity in women with a single index condition or conditions that are not related to pregnancy or childbirth will be excluded. A search strategy will be developed using thesaurus (including MeSH) and free-text terms for ‘maternal morbidity’ or ‘multiple long-term conditions’ and associated keywords such as multimorbidity, co-morbidity and unmet health needs related to pregnancy and/or childbirth for women living in LMICs. Electronic (EBSCOhost (CINAHL Ultimate, STM Source, Medline Ultimate), Cochrane Library, Web of Science or Scopus and Google Scholar) and grey literature databases will be searched from database inception. Reference lists and bibliographies of key topic articles will also be searched, and any additional papers that meet the inclusion criteria will be obtained. There will be no limitations on dates or languages. Records will be independently screened, selected and extracted by two researchers. Data will be presented in tables and narrative summaries.
Ethics approval is not required as this scoping review will summarise previously published data. Findings from the review will be disseminated through various platforms, including peer-reviewed journals, conferences and community meetings.
Open Science Framework (https://doi.org/10.17605/OSF.IO/FYCR8).
Chronic tic disorders (CTDs)—such as Tourette Syndrome (TS)—are neurodevelopmental disorders affecting at least 1% of the population, causing repetitive involuntary movements and vocalisations known as tics. This study aimed to explore the lived experiences of accessing healthcare for people with CTD or TS and their families in the United Kingdom (UK), as part of a larger programme of work to inform change to healthcare services for this population.
Informed and designed with extensive patient and public involvement, the design utilised qualitative research using focus groups. Reflexive thematic analysis was used to analyse the data.
Participants were recruited via online support groups, social media and research registers.
Seven focus groups were held separately with young people with tics (n=2), adults with tics (n=10) and parents/guardians of children with tics (n=11), led by a lived experience expert (coauthor PS) and facilitated by researchers. Discussion focused on three areas: the impact of living with tics, experience accessing healthcare for tics and management of tics.
Five themes were developed highlighting challenges across the healthcare pathway, including gaining a diagnosis, and receiving treatment, resulting in the use of self-support methods to reduce tic expression or the impact of tics. Themes also illustrated perceptions that healthcare provider's knowledge impacted initial interactions with the healthcare system, and how healthcare systems were not felt to be prioritising CTDs.
The findings highlight a lack of prioritisation for tic disorders compounded by a healthcare structure which does not support a complex condition that requires a multidisciplinary approach. This research calls for improvements to UK healthcare services for CTD.