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Huntington's disease has a disruptive effect on entire families. While previous reviews have examined lived experiences of individuals with Huntington's Disease, their informal caregivers, or their offspring, none have provided a comprehensive overview that integrates these three perspectives.
A scoping review.
Providing an integrated view and a holistic understanding of the multifaceted challenges faced by families affected by Huntington's disease.
We operationalised the lived experiences using the keywords: “barriers”, “facilitators” and “needs”. We extracted and thematically analysed data from 35 articles searched from 1993 to 2023.
Twelve themes were identified, organised into three dimensions: (1) Having the Disease: encompassing the symptoms and progression of the disease; (2) Family Dynamics: reflecting the challenges of living in a household affected by Huntington's disease; and (3) Outside World: describing relationships and interactions with relatives, friends, health services and wider social structures.
The dimensions and related experiences of all three perspectives are intertwined. These experiences are mutually reinforcing, with fluid shifts in perspective occurring between family members. While the needs of family members overlap, they also diverge, highlighting the need for a systemic, family-centred approach to address the evolving challenges faced by all family members.
No Patient or Public Contribution.
To pilot a culturally tailored, peer-led, co-produced asset-based intervention workshop to encourage early diagnosis of prostate cancer for Black men.
Mixed-methods pilot study.
Community centres in the North-East of England and Scotland.
The intervention was delivered in November 2023 with Black African and Caribbean men (n=21), and again in February 2024 (n=41). Participants were highly educated and aged between 42 and 63 years. The intervention was qualitatively evaluated with 40 of the intervention participants.
Underpinned by the Integrated Screening Action Model (I-SAM), we co-produced a culturally tailored, peer-led 2-hour workshop consisting of multiple components, including small group discussions about barriers to accessing prostate cancer care, general practitioner (GP) health education, activities to facilitate effective communication with the GP and reception staff and videos with testimonials from survivors, women and religious leaders.
Knowledge, attitudes and intention to engage in prostate cancer testing were examined through a pre- and post-survey design. Intervention acceptability was qualitatively explored through focus groups.
Participants (n=41) reported that the workshop increased their confidence in engaging with healthcare providers to discuss prostate cancer testing (I-SAM component: psychological capability). Knowledge (I-SAM component: psychological capability: Z=4.939, p
Asset-based strategies, focusing on community strengths, including faith-based health promotion, can promote health behaviours in a culturally and spiritually meaningful way. The PROCAN-B intervention effectively targeted components within the I-SAM and shows potential to increase prostate cancer awareness and build confidence to engage in behaviours conducive to early diagnosis. However, the sample was small, and more robust effectiveness testing is needed.
Adults living with multiple long-term conditions (MLTC)—defined as the presence of two or more physical or mental health conditions—often face fragmented and complex care. Digital tools offer scalable self-management solutions but may exacerbate inequities due to the digital divide and other factors. The aim of this scoping review is to map and summarise the existing literature on digital self-management tools used in MLTC, with a particular focus on how equity of access is considered in their development, implementation and evaluation.
Scoping review methodology will be based on the Joanna Briggs Institute guidance for scoping reviews and Arskey and O’Malley’s framework and will be reported in alignment with Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Reviews. Comprehensive search terms based on ‘multimorbidity’, ‘digital tools’ and ‘self-management’ have been developed. Peer-reviewed publications will be identified using MEDLINE, Embase, Emcare, Scopus, CINAHL and PubMed. Two reviewers will independently screen titles and abstracts, with subsequent full text review also being performed in duplicate to ensure they meet the eligibility criteria. Discrepancies will be resolved by discussion with a third reviewer. Included studies will focus on digital tools for the self-management of MLTC in adults (≥18 years old) in any setting. Equity dimensions will include, but are not limited to, digital literacy, treatment burden, socioeconomic status, polypharmacy and access disparities.
Ethical approval is not required for this scoping review. The results of the scoping review will be published in an open access, peer-reviewed journal for wider dissemination. Additionally, findings will contribute to topic guides and mapping of a research networking event with key stakeholders (including patient and public involvement and engagement members, clinicians, researchers and industry) in MLTC, around the same subject area.
To determine what drives participation in clinical trials with decentralised elements and to estimate trial participation probabilities for trials with different degrees of decentralisation.
Patient preference study using a discrete choice experiment.
Recruitment in primary, secondary, tertiary care and other settings in the Netherlands (NL), Austria (AT) and Germany (DE).
People with type 2 diabetes mellitus (T2DM) aged ≥18 years. A total of 787 people (NL n=276, AT n=265, DE n=246) participated in the study.
Preferences for participation in clinical trials with different options for location and type of contact with the study team, activities to perform by participant, use of digital technologies by participant, number of scheduled contacts, trial duration, known safety and efficacy of the drug.
How much was known about the safety and efficacy of the drug was the most important element in the decision whether to participate in a clinical trial in all countries. The trial duration, location and type of contact with the study team, and number of scheduled contacts were other important elements. Participation probabilities for hypothetical trial scenarios differed between countries, with the highest rates for a decentralised trial involving video contact (NL: 89%; AT: 99%; DE: 84%).
People with T2DM prefer to take part in clinical trials with decentralised approaches. Information on preferences can help trialists and protocol developers to design and plan future trials that integrate patients’ needs and thus reduce barriers to participation.
Regular physical exercise has well-known health benefits and is generally considered safe for adults with congenital heart disease (ACHD). However, many individuals with ACHD remain insufficiently physically active. This study explored the barriers and needs related to physical exercise as experienced by people with ACHD to inform the development of tailored strategies that support and promote increased physical activity.
Qualitative study using semistructured interviews conducted between March and May 2023. The interview guide was based on the Fear Avoidance Model, Tampa Scale for Kinesiophobia Heart and European Society of Cardiology guidelines on sports cardiology and exercise for cardiovascular diseases. Interviews were coded and thematically analysed to identify specific physical exercise barriers and needs.
Data saturation was reached after interviewing 19 individuals living with ACHD (median age 46 years (range 24–75), 10 women). Thematic analysis identified four main barriers: (1) physical symptoms and negative past experiences, (2) alienation from peers, (3) perceived decline in physical fitness over time and (4) lack of knowledge about personal physical boundaries. Two needs were identified: (1) personalised, disease-specific exercise information and advice and (2) structured support and guidance from healthcare professionals.
People with ACHD face multiple barriers to engaging in physical exercise. There is a clear need for specific, personalised exercise advice from healthcare providers and the development of long-term programmes and interventions to overcome relevant barriers.
Background
Substantial effort has been invested to combat childhood obesity, but overall effects are disappointing, especially in low-income racial minority children. One possible reason is a lack of focus on the important stress–eating connection. Stress can negatively influence eating behaviors, leading to an increased appetite for high-fat and energy-dense foods.
Objective
This study aimed to evaluate the preliminary effects of a healthy eating and stress management program targeting multiple theoretical variables on improving eating behavior (dyads’ fruit/vegetable intake, emotional eating), food insecurity, anthropometric characteristics (dyads’ body mass index, % body fat), cardiovascular health (dyads’ blood pressure), and mental well-being (parental stress).
Methods
A one-group, quasi-experimental pilot study was conducted among 107 low-income parent–preschooler dyads. The 14-week program included a parent component, a parent–preschooler learning component, and a day care-based preschooler component.
Results
The program had positive effects on improving dyads’ fruit/vegetable intake, food insecurity, body mass index, and blood pressure and parents’ nutrition knowledge, self-efficacy, support, food resource management behavior, problem-focused coping, and home eating environment. The overall satisfaction rate was 95.2%, and 88.1% stated that the program assisted their families with having a healthy lifestyle.
Discussion
Results support the preliminary effects of the program on improving health outcomes in rural and urban low-income families. Although warranting further investigation with a more rigorous randomized controlled trial, the healthy eating and stress management program provides a potential solution to the current coexistence of an obesity epidemic and mental health crisis. 
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