Developing a Novel Web-Based Self-Management Support Intervention for Polycystic Ovary Syndrome: Mixed Methods Study With Patients and Health Care Professionals.

BACKGROUND: Polycystic ovary syndrome (PCOS) represents a significant global health burden requiring urgent attention. This common chronic endocrine and cardiometabolic condition affects around 1 in 10 women and individuals assigned female at birth, with significant adverse effects on well-being, quality of life, and mental health, as well as serious and complex long-term health consequences. International guidelines for best health care practice recommend the provision of comprehensive cognitive behavioral interventions to support self-management and improve health outcomes for those living with PCOS. Web-based health interventions have the potential to meet this need in an accessible and scalable way. OBJECTIVE: We aim to identify barriers to self-management and psychological well-being in women with PCOS and adapt a web-based self-management program to provide a prototype digital support intervention for them. METHODS: We adapted an existing support program (HOPE) for PCOS using the antecedent target measure approach. We conducted qualitative interviews with 13 adult women living with PCOS, 3 trustees of a patients with PCOS advocacy charity, and 4 endocrinologists to identify "antecedents" (barriers) to self-management and psychological well-being. Framework analysis was used to identify potentially modifiable antecedents to be targeted by the novel intervention. At a national conference, 58 key stakeholders (patients and health professionals) voted for the antecedents they felt were most important to address. We used research evidence and relevant theory to design a prototype for the PCOS intervention. RESULTS: Voting identified 32 potentially modifiable antecedents, relating to knowledge, understanding, emotions, motivation, and behaviors, as priorities to be targeted in the new intervention. A modular, web-based prototype HOPE PCOS intervention was developed to address these, covering six broad topic areas (instilling HOPE for PCOS; managing the stress of PCOS; feeding your mind and body well; body image, intimacy, and close relationships; staying healthy with PCOS; and keeping PCOS in its place). CONCLUSIONS: We identified barriers to self-management and psychological well-being in women with PCOS and used these to adapt a web-based self-management program, tailoring it for PCOS, which is a comprehensive group intervention combining education, empowerment, lifestyle management, peer support with cognitive behavioral tools, and goal-setting (to be delivered by peers or codelivered with health care professionals). The modular structure offers flexibility to adapt the program further as new clinical recommendations emerge. The intervention has the potential to be delivered, evaluated for feasibility, and, if effective, integrated into health care services. Self-management interventions are not designed to replace clinical care; rather, they serve as an additional source of support. The HOPE PCOS program conveys this message in its content and activities. Future research should evaluate the prototype intervention using primary outcomes such as measures of psychological well-being, self-management self-efficacy, depression, anxiety, and PCOS-related quality of life. They should also assess the intervention's acceptability, scalability, and cost-effectiveness.

The experiences of people with chronic obstructive pulmonary disease (COPD) using activity monitors in everyday life: an interpretative phenomenological study.

PURPOSE: Understanding the experiences of people with Chronic Obstructive Pulmonary Disease (COPD) using activity monitors in daily life could support the utilisation of technology within healthcare to increase physical activity and support self-management. This qualitative study aimed to explore the experiences of people with COPD using activity monitors at home in everyday life. METHODS: Semi-structured face-to-face or telephone interviews were conducted with seven people with COPD between August 2018 and June 2020. Participants had all used an activity monitor within the last year (Fitbit, Garmin, or Apple Watch). Interviews were analysed in-depth using Interpretative Phenomenological Analysis (IPA). RESULTS: Four themes, developed using IPA, highlight participants' engagement with activity monitors and integrating them into their lives: (1) Motivational features to monitor activity, (2) Importance of setting achievable goals, (3) Developing knowledge and awareness, and (4) Integration into everyday life for self-management. CONCLUSION: Activity monitors were perceived to be beneficial and useful to people with COPD, not just for monitoring their activity, but also helping to self-manage their condition. Activity monitors may be a useful tool within rehabilitation and healthcare services for COPD.

Activity monitors were beneficial for people with Chronic Obstructive Pulmonary Disease (COPD) to monitor their physical activity and support self-management of their COPD.People with COPD could see and make sense of their activity levels, set activity goals and increase their motivation from the objectively monitored activity.Activity monitors can help to support individual goal setting and facilitate ownership, but support is needed to set achievable and realistic goals.Healthcare practitioners need to be aware of the potential negative effects of using activity monitors on mental or physical health and wellbeing and support people with COPD to manage pressure and expectations of meeting their goals.

Digital Peer-Supported Self-Management Intervention Codesigned by People With Long COVID: Mixed Methods Proof-of-Concept Study.

BACKGROUND: There are around 1.3 million people in the United Kingdom with the devastating psychological, physical, and cognitive consequences of long COVID (LC). UK guidelines recommend that LC symptoms be managed pragmatically with holistic support for patients' biopsychosocial needs, including psychological, emotional, and physical health. Self-management strategies, such as pacing, prioritization, and goal setting, are vital for the self-management of many LC symptoms. OBJECTIVE: This paper describes the codevelopment and initial testing of a digital intervention combining peer support with positive psychology approaches for self-managing the physical, emotional, psychological, and cognitive challenges associated with LC. The objectives of this study were to (1) codesign an intervention with and for people with LC; (2) test the intervention and study methods; (3) measure changes in participant well-being, self-efficacy, fatigue, and loneliness; and (4) understand the types of self-management goals and strategies used by people with LC. METHODS: The study used a pre-post, mixed methods, pragmatic, uncontrolled design. Digital intervention content was codeveloped with a lived-experience group to meet the needs uncovered during the intervention development and logic mapping phase. The resulting 8-week digital intervention, Hope Programme for Long COVID, was attended by 47 participants, who completed pre- and postprogram measures of well-being, self-efficacy, fatigue, and loneliness. Goal-setting data were extracted from the digital platform at the end of the intervention. RESULTS: The recruitment rate (n=47, 83.9%) and follow-up rate (n=28, 59.6%) were encouraging. Positive mental well-being (mean difference 6.5, P<.001) and self-efficacy (mean difference 1.1, P=.009) improved from baseline to postcourse. All goals set by participants mapped onto the 5 goal-oriented domains in the taxonomy of everyday self-management strategies (TEDSS). The most frequent type of goals was related to activity strategies, followed by health behavior and internal strategies. CONCLUSIONS: The bespoke self-management intervention, Hope Programme for Long COVID, was well attended, and follow-up was encouraging. The sample characteristics largely mirrored those of the wider UK population with LC. Although not powered to detect statistically significant changes, the preliminary data show improvements in self-efficacy and positive mental well-being. Our next trial (ISRCTN: 11868601) will use a nonrandomized waitlist control design to further examine intervention efficacy.

Brief report: do service dog providers placing dogs with children with developmental disabilities use outcome measures and, if so, what are they?

The aim of this study was to identify the outcomes expected and assessed by those providing service dogs to children with developmental disabilities. Seventeen registered service dog providers were invited to complete a mixed methods online survey. Five providers, who prepared dogs to work with a wide range of conditions and behaviours, mainly Asperger's syndrome, autism and communication disorders, completed the survey. All five participants reported that they expected to see positive changes as a consequence of the service dog placement, in both the recipient child and their family, including improvements in attention span and language skills, as well as increased familial cohesion. Survey responses indicated that not all desired outcomes were routinely assessed. The range of assessments used were interviews, intake conversations, pre-placement questionnaires, child social diaries filled in by parents, follow up surveys after placement, and child observation by parents. No specifically named valid and reliable clinical or research measures were referred to, showing an emphasis on assessments from parents and service dog providers. It is not clear whether pre-intervention assessments are repeated systematically at follow-up, which could show robust intervention effects. There is scope for professionals in developmental disability to work with service dog providers to improve the evidence base in this field.

Nurse-led peer support group: experiences of women with polycystic ovary syndrome.

AIM: This paper is a report of a study to explore the experiences of women with polycystic ovary syndrome attending a nurse-led support group. BACKGROUND: Polycystic ovary syndrome is a common chronic endocrine disorder associated with high levels of psychological distress. It has been argued that healthcare providers should regularly review the psychological health of women with polycystic ovary syndrome, and that nurses can help women to adjust to the condition by providing education and support. Little is known about the means of providing social support for women with the syndrome, or of any benefits for patients. METHOD: Qualitative interviews were conducted with 13 female patients in 2006. The patients attended a support group at a public hospital in the United Kingdom. The data were analysed using deductive and inductive thematic analysis. FINDINGS: The group provided both socio-emotional and informational social support. Participants reported that attending the group helped to reduce isolation, and provided an opportunity for social comparison and accessible and personally relevant information. Participants described the group as having had a major personal impact for them. They reported feeling empowered and direct positive effects on their self-management behaviours. CONCLUSION: Social support appears to be a key factor mediating the psychosocial impact in women with polycystic ovary syndrome. Healthcare providers should consider running such support groups or referring patients to them. Providing social support may alleviate distress and improve self-management.