The aim of this study was to pilot test a question prompt list (QPL) about cardiovascular disease (CVD) risk reduction after hypertensive pregnancy (HDP).
In a prospective cohort study of adult women who had HDP given the QPL before and surveyed after a physician visit, we assessed perceived person-centred care, self-efficacy for self-management, perceived self-management and QPL feasibility.
Twenty-three women participated: 57% of diverse ethno-cultural groups, 65% < 40 years of age and 48% immigrants. Most scored high for person-centred care (mean 4.1 ± 0.2/5); and moderately for self-efficacy (mean 7.4 ± 0.6/10) and self-management (mean 3.1 ± 0.3/5). Most appreciated QPL design and reported QPL benefits: helped them to prepare for the visit and know what to ask; increased confidence to ask questions, knowledge of the link between HDP and CVD and lifestyle behaviours to reduce CVD risk. Most reported that physicians were receptive to discussing QPL questions.
Women appreciated the QPL and knowledge about self-management was high but self-efficacy for or perceived self-management was moderate. It appears feasible to share a QPL with ethno-culturally diverse women who can share it with physicians to facilitate discussions about post-pregnancy HDP-related CVD risk.
This study involved women who experienced HDP and engaged ethno-culturally diverse women with lived experience of HDP as study advisors in all stages of the research.
Peer supporters play a crucial role in mental health and support services, but their own mental health and emotional well-being are often neglected by themselves, and, frequently, their organisations. Here, we report findings from a qualitative interview study of peer supporters who completed a co-produced emotional well-being training programme.
Ten semi-structured interviews with peer supporters working in the North East of England were conducted to explore their experiences of the training programme.
Thematic analysis of the data produced three overarching themes. In Theme 1, ‘Increasing psychological preparedness and identifying self-care and coping strategies’, we found that peer supporters improved their knowledge of how to manage sensitive topics such as aggression and suicide and felt more confident in their peer support roles resultantly. In Theme 2, ‘It's good to know you're not alone’, peer supporters discussed their experience of loneliness in their roles, and as a consequence realised their own need for peer support to help maintain their well-being. Theme 3, ‘Toward the future: next steps’, encapsulated peer supporters' willingness to continue their role development and to create a peer support network to continue to obtain mutual support.
Our findings emphasise the perceived emotional well-being benefits of a co-produced peer supporter training programme. Participants highlighted the need for co-produced training programmes that are (1) emotion-focussed, (2) provide access to other peer supporters and (3) provide future avenues for a peer supporter network of mutual support and professional development activities and training opportunities.
Individuals with lived experience of mental ill health and peer support were consulted in the development of interview questions and provided feedback on the finalised themes to ensure the analysis and interpretations were congruent with their experiences.
Exploring health consumer preferences in care is an essential foundational, and ongoing activity, when designing and delivering models of care. We undertook a study to explore: (i) what allied health (AH) services are most important to health consumers and (ii) how health consumers expect to access these services in residential aged care (RAC) to determine consumer priorities in future AH models of care in RAC.
A mixed method study was conducted with aged care residents and community members (friends or family of residents/people who believe they may use RAC services). The study comprised two focus-group activities where participants were asked to (1) rank the AH services most important to them and then (2) categorise how they would prefer to access each AH service. Focus group members used card sort methods (Q-methodology) to aid prioritisation, categorisation and discussion. Card sorting data were analysed using inverted factor analysis and descriptive statistics. Qualitative focus group data were deductively coded using a coding structure created by the research team informed by quantitative results.
Data were collected from 16 participants who formed five focus groups in a community forum. The analysis revealed three factors, that represented shared meaning amongst groups of participants (viewpoints) regarding prioritisation of AH services: ‘Prioritising urgent needs’, ‘Prioritising long-term healthy habits and lifestyle’, and ‘Prioritising social well-being’. Data from the card sort activity, which related to ‘how health consumers expect to access AH services’, were also categorised into three categories: ‘It is always provided’, ‘A professional will assess my need’ and ‘I or my family will ask for this service if I need it’. Participants wanted most AH services to be provided regularly, with some such as ‘Exercise and rehabilitation’ and ‘Meaningful activity’ to be provided up to one hour every day.
Consumers value a range of AH services and have an expectation that these will be provided in RAC on a regular basis. To ensure consumers make informed preferences regarding the future of services in RAC, health systems need to trial innovative AH models of care and embed consumer evaluation.
We investigated whether a novel 8-week personalised health behaviour support programme, focusing on the stability of symptoms and strategies to improve activities of daily living, was feasible and acceptable in adults with post-COVID syndrome.
In this randomised, controlled, pilot feasibility trial, 32 adults with post-COVID syndrome (continued symptoms for ≥ 12 weeks) were randomised 1:1 to receive personalised health behaviour support (self-reported physical activity and symptom diaries, plus seven one-to-one remotely delivered personalised self-management support sessions), once weekly for 8-weeks, or usual care (referral to online ‘your COVID-19 recovery’ programme). The primary outcome was the feasibility of recruiting and randomising adults with post-COVID syndrome. The secondary outcomes were to assess the acceptability and safety of the intervention and various outcome measures.
Of the 48 adults who expressed interest in the study, 32 (67%) were eligible and completed the baseline assessment. All 32 adults were willing to be randomised to either the personalised health behaviour support programme (n = 17) or usual care (n = 15) and 27 (age: 45 ± 12 years) adults completed follow-up at 9 weeks. The intervention was deemed feasible, with high adherence (92% and 94% completion rates for the physical activity and symptom diaries, respectively) and excellent acceptability rates (94% ‘liked the intervention a lot’). The intervention was deemed safe, with no symptom exacerbations reported.
An 8-week personalised health behaviour support programme was feasible for adults with post-COVID syndrome, with good adherence and acceptability rates. Early pilot data from this small sample also suggests meaningful improvements in physical activity, fatigue and respiratory symptoms.
People living with post-COVID syndrome were involved from the outset with the study design, review of study documentation and interpretation of the data following completion. Furthermore, several participants have supported the local dissemination of findings following the completion of the study.
Despite increasing recognition of long COVID, the psychosocial impacts of the lived experience on individuals remain underexplored. This systematic review sought to fill this gap by identifying key themes that describe the psychosocial dimensions of long COVID.
The aim of this study is to identify key themes illustrating the psychosocial aspects of individuals' lived experience of long COVID.
Searches were conducted in multiple databases and grey literature sources for qualitative studies published between November 2019 and June 2024.
Eligible studies involved adult participants self-reporting long COVID. The studies needed to provide qualitative data that could be synthesised thematically.
Data extraction and thematic synthesis were conducted by at least two independent reviewers at each stage. Quality appraisal was performed using the Critical Appraisal Skills Programme tool.
The review included 34 studies. Thematic synthesis yielded five themes: ‘Debilitation’, ‘Uncertainty’, ‘Sources of Support’, ‘Meaning Making: Adjusting to a New Normal’ and ‘Experiences with Healthcare Services’. Individuals with long COVID reported experiencing physical, economic, and social challenges. Uncertainty and scepticism from others caused anxiety. Support from healthcare services, friends and online groups played an important role. Acceptance and gratitude were found to be meaningful in adjusting to the new normal. Experiences with healthcare services varied.
This review provides valuable insights into the psychosocial impact of long COVID, highlighting the profound changes and challenges that individuals face. Healthcare services should adopt a holistic approach to integrate psychosocial support within their management strategies, to improve overall patient outcomes.
Long COVID is a life-limiting condition that affects 65 million people worldwide. It devastates lives with uncertain illness trajectories, and yet, there are many research uncertainties as there is a lack of understanding of its causes, effective treatments and management plans. We set out to identify current research priorities for people with Long COVID, carers, healthcare professionals and researchers.
A systematic literature review and previous Long COVID priority-setting exercises identified three broad under-researched areas of Long COVID research within the fields of Public Health and Health Services Research: symptoms; managing day-to-day life; and the emotional impact of Long COVID. We disseminated an elicitation survey that asked for research questions in these areas; responses were analysed and summarised into 42 research questions. A survey was then disseminated, asking respondents to prioritise these 42 questions. Workshops were held with people with Long COVID, carers, healthcare professionals and researchers to analyse responses and agree the top 10 priorities.
The top priorities in order were pharmacological treatment of Long COVID; understanding the pathophysiology; nonpharmacological symptom management; improving public and professional understanding of Long COVID; understanding of the long-term risks of Long COVID; improving financial and social supports; improving understanding of postviral syndromes; diagnostics; service redesign/pathways; and the well-being of children with Long COVID.
Four years into the pandemic, there is an emphasis on the need for research on treatment, understanding and support for people living with Long COVID.
People with Long COVID and carers were involved in the study design, survey design, dissemination, data analysis, interpretation and reviewing and editing the manuscript.
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