Men with prostate cancer (PCa) and their support providers face challenges in accessing high-quality, impartial information tailored to their specific needs to enhance their overall care and decision-making. We describe the development, piloting and evaluation of the co-designed web portal ‘BroSupPORT’.
IT teams developed and integrated BroSupPORT into the Victorian Prostate Cancer Outcomes Registry (PCOR-Vic) electronic patient-reported outcome follow-up process. A comparator tool was built enabling men to compare their patient-reported outcome results against men of similar age, risk profile and after the same treatment. PCOR-Vic participants were invited to access BroSupPORT after 12 months of follow-up patient-reported outcome measure completion. Factors associated with consent to BroSupPORT were determined using logistic regression. Portal access data were gathered from PCOR-Vic data extracts and Google Analytics. A survey on portal exit and 2 weeks after consent was used to collect feedback.
Over a 4-month pilot, 331/583 (57%) men consented to accessing BroSupPORT. Among those men who accessed the portal, the majority (209/331 =63%) were diagnosed in a private hospital and resided in a major city (214/331=65%). On average, men spent 3:20 min on the portal, with sexual function aspects receiving the most attention. Twenty-three percent of men revisited the portal during the pilot. Most men found the portal easy to use, reassuring and informative, while 9% found the patient-reported comparisons difficult to interpret.
A patient portal—enabling men to compare their patient-reported outcomes with other similar men and providing access to information and resources—may be a scalable solution in addressing the complex supportive care needs of men with PCa on a population basis.
Disabled public contributors continue to experience challenges with inclusion, despite inclusive patient and public involvement (PPI) being regarded as the gold standard in research practice and despite disabled PPI contributors often making up a significant proportion of all public contributors [1]. With the recent Disability Framework from the National Institute for Health and Care Research (NIHR), which commits to disability inclusion in health and healthcare research [1], it is timely to reflect on the current situation.
This article is written in the first person by Sandra Paget and Agata Pacho, who share their perspectives as a PPI contributor and an academic leading PPI, respectively. Sandra is an experienced reviewer for the NIHR and has collaborated with academics across the UK. Having lived with a rare neurological condition since early childhood, she founded the original Buckinghamshire Neurological Alliance and served on the Executive Committee of the National Neurological Alliance, representing Regional Neurological Alliances. In this article, Sandra reflects on instances where her ability and willingness to contribute to research were limited by accessibility barriers or a lack of adequate access. She argues that these barriers not only affect individual PPI activities but also have a long-term impact on healthcare services, making it harder for disabled people to live independently for longer. Agata, an Assistant Professor at the London School of Hygiene & Tropical Medicine (LSHTM), leads PPI for the NIHR Policy Research Unit in Policy Innovation and Evaluation (PIRU). Here, Agata discusses how the notion of reasonable adjustments may, in certain cases, be unhelpful or even counterproductive to fostering inclusivity within PPI. Instead, Agata suggests that embedding a duty of care into how PPI is conducted could be a more effective way to break down barriers and ensure greater accessibility for disabled contributors.
Sandra Paget: conceptualisation, writing–original draft, writing–review and editing. Agata Pacho: writing–review and editing, writing–original draft.
The authors have nothing to report.
The authors declare no conflicts of interest.
Grounded in the Health Empowerment Model, which posits that health literacy and patient empowerment are intertwined yet distinct constructs, this study investigates how the interplay of these factors influences attitudes toward seeking professional psychological help in members of online communities for mental health (OCMHs). This while acknowledging the multidimensionality of patient empowerment, encompassing meaningfulness, competence, self-determination, and impact.
A cluster analysis of data gathered from 269 members of Italian-speaking OCMHs on Facebook has been performed.
Four profiles have been identified: dangerous self-managers (11.2%), effective self-managers (21.2%), disempowered (40.5%) and ambivalent empowered (27.1%). Clusters provided meaningful variations in help-seeking attitudes, also when controlling for depression and anxiety severity, F3, 265 = 11.910, p < 0.001.
The findings provided further evidence of the multidimensionality of patient empowerment. Considering the results, we discussed potential interventions aimed at enhancing the quality of OCMHs, tailoring to the unique characteristics of each cluster.
Administrators and moderators of mental health Facebook communities—whether expert-led by mental health professionals or peers—played a key role in this study. They provided valuable insights during the questionnaire design process to ensure the questions were both relevant and appropriate for community members. These administrators and moderators also actively facilitated participant recruitment by creating and sharing posts, either video- or text-based, on community homepages. Furthermore, after completing the questionnaire, participants were encouraged to comment on the Facebook posts where the survey link was shared, mentioning that they participated and inviting other members to take part. This approach aimed to foster a sense of involvement and further promoted the survey within the community.
Adults who live or work with children are an important source of support and are gateways to professional help when a child is experiencing a mental health problem. This study aimed to develop consensus-based guidelines on how adults such as parents, educators or health professionals should approach a child aged 5–12 years to discuss concerns about the child's mental health and seek help.
A Delphi consensus method with three rounds was used. Experts were recruited from six countries to form three panels: health professionals, educators and people with lived experience (parents and carers, and young people with mental health problems). Statements to be rated were sourced from an online search of websites designed for adults who live or work with children. Further suggestions for statements came from panellists. Statements that reached 80% consensus across all panels were included in the guidelines.
132 participants completed the Round 1 survey, reducing to 54 by Round 3. A total of 248 statements were presented to panel members, with 151 being endorsed and included in the guidelines.
These guidelines represent the first recommendations developed for members of the public providing mental health first aid to children aged 5–12 years.
Lived experience advocates (i.e. those with lived experience of a mental health problem in childhood and/or caregiving experience of raising a child with a mental health problem) were involved at two stages of this research: As part of the Advisory Group for the project and as expert panel members. Advisory Group members provided input into the conduct of the study and the content and design of the research outputs. Panel members provided their expertise to review every item to be included in the guidelines, proposed new items to be included, and reviewed and approved the finalised output documents.
京公网安备 11010802042870号
京ICP备2023020795号-1
扫码关注我们
求助内容：
应助结果提醒方式：