Using Social Media to Recruit Participants in Health Care Research: Case Study.

This paper presents a case study describing the use of social media, specifically Facebook and Instagram, as a valuable tool for recruiting participants in community-engaged health care studies. Drawing on the experiences of our team during a qualitative study aiming to understand the needs of Indigenous fathers and Two-Spirit parents as they transition to parenthood, we offer an in-depth exploration of our social media recruitment strategy. This strategy encompasses deliberate content creation and online engagement with local Indigenous community organizations and people. Through the implementation of this recruitment strategy, we successfully recruited 18 Indigenous fathers and 4 Two-Spirit parents to our community-engaged project. We learned that social media can be used to enhance recruitment by building community trust, engagement, tailored content for specific audiences, and adaptive strategies guided by data metrics provided by social media platforms. Our journey included several challenges, such as dealing with fraudulent participants, navigating budget and resource constraints, and facing recruitment limitations, which we also describe in detail. Our paper provides essential insights for researchers considering the use of social media as a recruitment tool but we are unsure of how to begin. Health care researchers may find our experience and recommendations helpful for developing and implementing their own effective social media recruitment strategy. Meanwhile, sharing our experience contributes to the broader understanding of the role of social media in participant recruitment.

Role and promise of health policy and systems research in integrating rehabilitation into the health systems.

Despite recognized need and reasonable demand, health systems and rehabilitation communities keep working in silos, independently with minimal recognition to the issues of those who require rehabilitation services. Consolidated effort by health systems and rehabilitation parties, recognizing the value, power and promise of each other, is a need of the hour to address this growing issue of public health importance. In this paper, the importance and the need for integration of rehabilitation into health system is emphasized. The efforts being made to integrate rehabilitation into health systems and the potential challenges in integration of these efforts were discussed. Finally, the strategies and benefits of integrating rehabilitation in health systems worldwide is proposed. Health policy and systems research (HPSR) brings a number of assets that may assist in addressing the obstacles discussed above to universal coverage of rehabilitation. It seeks to understand and improve how societies organize themselves to achieve collective health goals; considers links between health systems and social determinants of health; and how different actors interact in policy and implementation processes. This multidisciplinary lens is essential for evidence and learning that might overcome the obstacles to the provision of rehabilitation services, including integration into health systems. Health systems around the world can no longer afford to ignore rehabilitation needs of their populations and the World Health Assembly (WHA) resolution marked a global call to this effect. Therefore, national governments and global health community must invest in setting a priority research agenda and promote the integration of rehabilitation into health systems. The context-specific, need-based and policy-relevant knowledge about this must be made available globally, especially in low- and middle-income countries. This could help integrate and implement rehabilitation in health systems of countries worldwide and also help achieve the targets of Rehabilitation 2030, universal health coverage and Sustainable Development Goals.

Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research.

BACKGROUND: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. METHODS: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. RESULTS: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. CONCLUSIONS: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. TRIAL REGISTRATION: Clinical Trial Registry of India (CTRI/2023/04/051357).

An example of the adaptation of the Nominal Group Technique (NGT) to a virtual format (vNGT) within healthcare research.

The Nominal Group Technique (NGT) has been used to establish clinical priorities and generate guidelines within healthcare since its creation over fifty years ago. It is characterised by its five distinct stages; introduction, silent idea generation, 'round robin', clarifications and rating or ranking. A key element traditionally has been the inclusion of face-to-face discussion, however in the context of COVID-19 innovations were required. This article provides a case study illustrating an adaptation of the NGT to a virtual format (vNGT) and outlines the processes involved in a virtual NGT (vNGT), using an illustrative study exploring the rehabilitation of stroke survivors. The vNGT offers opportunities for global collaborations without the constraints of geography or incurred costs. Future studies should evaluate it's acceptability for stroke survivors to enable their participation within research.Summary statement1. This study provides a guide for the use of virtual nominal group technique (vNGT), using a freely available video-conferencing platform2. vNGT increases opportunities for global collaborations whilst incurring minimal costs.3. It remains unclear how feasible this procedure is with patient populations who have potentially less digital confidence and access.This work was supported by NIHR ARC-East Midlands, Grant number NIHR200171.

Pathways for Strengthening Lived Experience Leadership for Transformative Systems Change: Reflections on Research and Collective Change Strategies.

INTRODUCTION: The Activating Lived Experience Leadership (ALEL) project was a South Australian participatory action research project that aimed to improve the ways lived experience is recognised, valued and integrated across mental health and social sector systems. ALEL was completed during 2019-2021, where it engaged 182 participants in generating community action and research knowledge. OBJECTIVE: Our paper discusses the project's processes of building a collective partnership among lived experience leaders and other leaders from within the sector, so that the actions and strategies identified through research could be implemented by systems-level impact. We describe the collaborative process and key learnings that resulted in eight key action areas for transformative systems change in South Australia. METHODS: The project invited a diverse range of self-identified lived experience and other leaders to be involved in a PAR process featuring formal qualitative research (focus groups, surveys and interviews) as well as community development activities (leaders' summit meetings, consultations, training and community of practice meetings). These processes were used to help us describe the purpose, achievements and potential of lived experience leadership. Project priorities and systems-level analysis was also undertaken with lived experience sector leaders and project advisors across two leaders' summit meetings, integrating research outcomes with sector planning to define high-level actions and a vision for transformational change. RESULTS: Participatory action research as informed by systems change and collective impact strategies assisted the project to generate detailed findings about the experiences and complexities of lived experience leadership, and collective responses of how systems could better support, be accountable to and leverage lived experience perspectives, experience and peer-work approaches. CONCLUSION: Systems change to define, value and embed lived experience leadership benefits from collective efforts in both formal research and sector development activities. These can be used to generate foundational understandings and guidance for working together in genuine ways for transforming mental health and social sector systems, experience and outcomes. PUBLIC CONTRIBUTION: Members of lived experience communities codesigned the project, and contributed to project governance and the development of all findings and project reports.

Planning for and Assessing Rigor in Rapid Qualitative Analysis (PARRQA): a consensus-based framework for designing, conducting, and reporting.

BACKGROUND: The use of rapid qualitative methods has increased substantially over the past decade in quality improvement and health services research. These methods have gained traction in implementation research and practice, wherein real-time adjustments are often made to optimize processes and outcomes. This brisk increase begs the questions: what does rigor entail in projects that use rapid qualitative analysis (RQA)? How do we define a pragmatic framework to help research teams design and conduct rigorous and valid rapid qualitative projects? How can authors articulate rigor in their methods descriptions? Lastly, how can reviewers evaluate the rigor of rapid qualitative projects?. METHODS: A team of seven interdisciplinary qualitative methods experts developed a framework for ensuring rigor and validity in RQA and methods suitable for this analytic approach. We conducted a qualitative evidence synthesis to identify gaps in the literature and then drew upon literature, standard procedures within our teams, and a repository of rapid qualitative training materials to create a planning and reporting framework. We iteratively refined this framework through 11 group working meetings (60-90 minutes each) over the course of one year and invited feedback on items to ensure their completeness, clarity, and comprehensibility. RESULTS: The Planning for and Assessing Rigor in Rapid Qualitative Analysis (PARRQA) framework is organized progressively across phases from design to dissemination, as follows: 1) rigorous design (rationale and staffing), 2) semi-structured data collection (pilot and planning), 3) RQA: summary template development (accuracy and calibration), 4) RQA: matrix analysis (matrices), and 5) rapid qualitative data synthesis. Eighteen recommendations across these sections specify best practices for rigor and validity. CONCLUSIONS: Rapid qualitative methods play a central role in implementation evaluations, with the potential to yield prompt information and insights about context, processes, and relationships. However, guidance on how to assess rigor is nascent. The PARRQA framework enhances the literature by offering criteria to ensure appropriate planning for and assessment of rigor in projects that involve RQA. This framework provides a consensus-based resource to support high-level qualitative methodological rigor in implementation science.

Creation to Dissemination: A Roadmap for Health Equity Research.

Health equity is the point at which all individuals have an equal opportunity to experience optimal health and thriving. The current state of health care is far from this ideal as numerous populations experience health disparities: differences in health or health outcomes that negatively impact groups who experience systemic disadvantage. All research has the potential to widen, maintain, or close health disparities. This article focuses on key opportunities for hospitalists of all levels of research experience to conduct research that promotes health equity from project planning to disseminating results. During the planning phase, learning health equity research concepts, developing study designs in partnership with communities, and recognizing the limitations of secondary analyses are key strategies that promote health equity. Developing strategies for recruiting populations underrepresented in research helps ensure that disparities in health outcomes are identified. Rather than conducting descriptive research to identify disparities, research which aims to improve health outcomes for groups that have been marginalized is urgently needed. Study analyses should consider intersectionality and patient-centered outcomes. Finally, dissemination to both academic and community audiences, with careful attention to words and figures, can catalyze future directions, mitigate bias, and help ensure that marginalized communities benefit equitably from research findings.

The research activities of Ontario's large community hospitals: an updated scoping review.

BACKGROUND: Community hospitals provide the majority of patient care in Canada but traditionally do not participate in clinical research. The disconnect between where most patients receive their health care and where health research is conducted leads to decreased study recruitment, reduced generalizability of study results, and inequitable patient access to novel therapies. A scoping review of the research activities of Ontario's large community hospitals (LCHs) between 2013 and 2015 reported an annualized output of 266 publications. In the last decade, efforts have been made to engage more community hospitals in research. In this updated scoping review, we provide a snapshot of the research activities of Ontario's LCHs between 2016 and 2022, describing the number and type of research publications as well as the frequency of collaboration within and between LCHs. METHODS: Three medical databases (PubMed, Embase, and CINAHL) were searched for publications that included at least one author affiliated with one of Ontario's 47 LCHs, and for which the topic was hospital or health related. Screening and extraction occurred concurrently. RESULTS: We identified 3,719 publications from 2016 to 22 with at least one Ontario LCH-affiliated author, representing an annualized output of 531 publications. The most frequent publication type was observational study (n = 1,654; 45%), quality improvement (n = 355; 10%), systematic reviews (n = 352; 9%) and randomized controlled trials (n = 325; 9%). The most common disciplines were outpatient care (n = 1,144; 31%), health systems research (n = 806; 22%), inpatient care (n = 437; 12%) and surgery (n = 403; 11%). LCH-affiliated first authors were identified in 997 (27%) publications, representing 755 unique authors, while LCH-affiliated senior authors were identified in 962 (26%) publications, representing 583 unique authors. Among the 1,565 studies with an LCH-affiliated first or senior author, 574 (37%) included collaborators from the same LCH and 86 (5%) included collaborators from other Ontario LCHs. CONCLUSIONS: Health research by LCH-affiliated clinicians and researchers increased significantly in 2016-2022 relative to 2013-2015. Participation in randomized controlled trials however, remains low, suggesting that further efforts are required to build clinical research infrastructure in LCHs.

Building Health Policy and Systems Research (HPSR) capacity in India: Reflections from the India HPSR fellowship program (2020-2023).

Building capacity for Health Policy and Systems Research (HPSR) is critical for advancing the field in lower- and middle-income countries (LMICs). The India HPSR fellowship program is a home-grown capacity-building initiative, anchored at the Health Systems Transformation Platform (HSTP), New Delhi, and developed in collaboration with a network of institutes in India and abroad. In this practice-oriented commentary, we provide an overview of the fellowship program and critically reflect upon the learnings from working with three cohorts of fellows between 2020 and 2023. This commentary draws on routine program documentation (guidelines, faculty meeting reports, minutes of meetings of curricula and course development) as well as the perspectives of faculty and program managers associated with the fellowship. We have had several important learnings in the initial years of program implementation. One, it is important to iteratively modify globally available curricula and pedagogies on HPSR to suit country-specific requirements and include a strong component of 'unlearning' in such fellowships. Secondly, the goals of such fellowship programs need to be designed with country-specific contextual realities in mind. For instance, should publication of fellows' work be an intended goal, then contextual deterrents to publication such as article processing fees, language barriers and work-related obligations of faculty and participants need to be addressed. Furthermore, to improve the policy translation of fellows' work, such programs need to make broader efforts to strengthen research-policy-practice interfaces. Lastly, fellowship programs are cost-intensive, and outputs from them, such as papers or policy translation, are less immediate and less visible to donors. In the absence of these outputs, consistent funding can be a roadblock to sustaining these fellowships in LMICs. The experience of our fellowship program suggests that LMIC-led capacity-building initiatives on HPSR have the potential to influence changes in health systems and build the capacity of researchers to generate evidence for policy-making. The sharing of resources and teaching material through the fellowship can enable learning for all institutions involved. Furthermore, such initiatives can serve as a launchpad for the creation of regional and international HPSR communities of practice, with a focus on LMICs, thereby challenging epistemic injustice in teaching and learning HPSR.

New horizons in prediction modelling using machine learning in older people's healthcare research.

Machine learning (ML) and prediction modelling have become increasingly influential in healthcare, providing critical insights and supporting clinical decisions, particularly in the age of big data. This paper serves as an introductory guide for health researchers and readers interested in prediction modelling and explores how these technologies support clinical decisions, particularly with big data, and covers all aspects of the development, assessment and reporting of a model using ML. The paper starts with the importance of prediction modelling for precision medicine. It outlines different types of prediction and machine learning approaches, including supervised, unsupervised and semi-supervised learning, and provides an overview of popular algorithms for various outcomes and settings. It also introduces key theoretical ML concepts. The importance of data quality, preprocessing and unbiased model performance evaluation is highlighted. Concepts of apparent, internal and external validation will be introduced along with metrics for discrimination and calibration for different types of outcomes. Additionally, the paper addresses model interpretation, fairness and implementation in clinical practice. Finally, the paper provides recommendations for reporting and identifies common pitfalls in prediction modelling and machine learning. The aim of the paper is to help readers understand and critically evaluate research papers that present ML models and to serve as a first guide for developing, assessing and implementing their own.

COVID-19 research response to immediate demands: setting priorities with key stakeholders to enable health services research in NSW, Australia.

PURPOSE: COVID-19 has caused unprecedented disruption to health systems. There is much to be gained by capturing what was learned from changes and adaptations made by health services and systems. The Ministry of Health in New South Wales (NSW), Australia, sought to prioritise health services research (HSR) to address critical issues arising from the COVID-19 pandemic. We tested a priority setting methodology to create priorities for a specific funding opportunity and to extract generalisable lessons. DESIGN/METHODOLOGY/APPROACH: A virtual roundtable meeting of key stakeholders was held in June 2020. We used a modified Nominal Group Technique (NGT) for priority setting, with potential items (n = 35) grouped under headings. Data was analysed through a reflective deliberative process. FINDINGS: We engaged 89 senior policy makers, health service executives, clinicians and researchers in the roundtable. The NGT proved an efficient method with participants reaching consensus on eight priorities. Findings included strong support for learning from the rapid response to COVID-19 and addressing needs of vulnerable populations and the health workforce. Opinions differed about strategic areas investment and where learnings should be via internal evaluation rather than funded research. Three of the eight recommended priorities were included in the funding opportunity. RESEARCH LIMITATIONS/IMPLICATIONS: Coronavirus disease 2019 (COVID-19) required unprecedented change and adaptations within health systems, and rapid, applied health services research can help to create, understand and (where relevant) sustain change beyond the immediate impact of the pandemic. While final decisions may be dependent on a wider range of considerations by government, stakeholder enthusiasm for engagement in priority setting exercises may be dampened if they do not perceive their application in decision-making. PRACTICAL IMPLICATIONS: A modified nominal group technique can be used to set research priorities in constrained conditions by engaging large numbers of stakeholders in rankings and then using an online delivery of a roundtable and to reach consensus on priorities in real time. Recommended priorities for health services research can be readily generated through rapid engagement but does not guarantee their application. SOCIAL IMPLICATIONS: Australia's swift response to COVID-19 pandemic in 2020 was perceived as a relative success due to the rapid public health and policy response and a relatively low number of cases. This response was underpinned by systematic knowledge mobilisation including support for targeted and prioritised health services research to fill knowledge gaps. ORIGINALITY/VALUE: Setting priority processes can provide rich, engaged input to support government funding decisions about HSR. A wide range of dynamic and iterative processes influence decision-making in a rapidly evolving situation in the health system response to COVID-19. It is crucial to consider how major investment decisions will support a value-based healthcare system.

"I am there just to get on with it": a qualitative study on the labour of the patient and public involvement workforce.

BACKGROUND: Workers tasked with specific responsibilities around patient and public involvement (PPI) are now routinely part of the organizational landscape for applied health research in the United Kingdom. Even as the National Institute for Health and Care Research (NIHR) has had a pioneering role in developing a robust PPI infrastructure for publicly funded health research in the United Kingdom, considerable barriers remain to embedding substantive and sustainable public input in the design and delivery of research. Notably, researchers and clinicians report a tension between funders' orientation towards deliverables and the resources and labour required to embed public involvement in research. These and other tensions require further investigation. METHODS: This was a qualitative study with participatory elements. Using purposive and snowball sampling and attending to regional and institutional diversity, we conducted 21 semi-structured interviews with individuals holding NIHR-funded formal PPI roles across England. Interviews were analysed through reflexive thematic analysis with coding and framing presented and adjusted through two workshops with study participants. RESULTS: We generated five overarching themes which signal a growing tension between expectations put on staff in PPI roles and the structural limitations of these roles: (i) the instability of support; (ii) the production of invisible labour; (iii) PPI work as more than a job; (iv) accountability without control; and (v) delivering change without changing. CONCLUSIONS: The NIHR PPI workforce has enabled considerable progress in embedding patient and public input in research activities. However, the role has led not to a resolution of the tension between performance management priorities and the labour of PPI, but rather to its displacement and - potentially - its intensification. We suggest that the expectation to "deliver" PPI hinges on a paradoxical demand to deliver a transformational intervention that is fundamentally divorced from any labour of transformation. We conclude that ongoing efforts to transform health research ecologies so as to better respond to the needs of patients will need to grapple with the force and consequences of this paradoxical demand.

Targeting emotion dysregulation in depression: an intervention mapping protocol augmented by participatory action research.

BACKGROUND: Depression is a highly prevalent and often recurrent condition; however, treatment is not always accessible or effective in addressing abnormalities in emotional processing. Given the high prevalence of depression worldwide, identifying and mapping out effective and sustainable interventions is crucial. Emotion dysregulation in depression is not readily amenable to improvement due to the complex, time-dynamic nature of emotion; however, systematic planning frameworks for programs addressing behavioral changes can provide guidelines for the development of a rational intervention that tackles these difficulties. This study proposes an empirical and theoretical art-based emotion regulation (ER) intervention using an integrated approach that combines intervention mapping (IM) with participatory action research (PAR). METHODS: We used the IM protocol to identify strategies and develop an intervention for patients with major depressive disorder (MDD). As applied in this study, IM comprises six steps: (a) determining the need for new treatments and determinants of risk; (b) identifying changeable determinants and assigning specific intervention targets; (c) selecting strategies to improve ER across relevant theories and research disciplines; (d) creating a treatment program and refining it based on consultations with an advisory group; (e) developing the implementation plan and conducting a PAR study to pilot-test it; and (f) planning evaluation strategies and conducting a PAR study for feedback on the initial testing. RESULTS: Following the steps of IM, we developed two frameworks for an art-based ER intervention: an individual and an integrative framework. The programs include four theory- and evidence-based ER strategies aimed mainly at decreasing depressive symptoms and improving ER in patients with MDD. We also developed a plan for evaluating the proposed intervention. Based on our preliminary PAR studies, the intervention was feasible and acceptable for adoption and implementation in primary care settings. CONCLUSION: The application of IM incorporated with PAR has resulted in an intervention for improving ER in depression. While changing behavior is perceived as a challenging and elaborate task, this method can be useful in offering a clear structure for developing rational interventions. Further refinement is necessary through rigorous research.

The continuity psychiatric nursing care model to enhance medication adherence in schizophrenia patients in Indonesia: Participatory action research.

OBJECTIVE: To develop a continuity of psychiatric nursing care model to enhance medication adherence in schizophrenia patients. METHODS: The Participatory Action Research study was conducted from 2017 to 2018 in Pekanbaru, Riau, Indonesia, after approval form the ethics review committee of the Faculty of Nursing, Prince of Songkla University, Thailand. The sample included schizophrenia inpatients at a mental hospital, their family members and nursing staff. Qualitative data were gathered through in-depth interviews, observations, field notes, and photo records. Data was subjected to content analysis, while trustworthiness of the model was also determined. RESULTS: Of the 57 subjects, 22(38.6%) were schizophrenia patients, 22(38.6%) were family members, and 13(22.8%) were nurses. The continuity of psychiatric nursing care model consisted of three components: preparing for readiness to live a normal way of life; creating a supportive environment; and, sustaining the continuity of care until the community level care. CONCLUSIONS: The continuity of psychiatric nursing care model facilitated holistic nursing care aspects.

What Do We Know About Sharing Power in Co-Production in Mental Health Research? A Systematic Review and Thematic Synthesis.

BACKGROUND: Guidance on co-production between researchers and people with lived experience was published in 2018 by the National Institute for Health and Care Research (NIHR) advisory group, previously known as INVOLVE. This guidance described sharing power as a key principle within co-production. Authentic sharing of power within co-produced mental health research does not always occur however and remains a challenge to achieve within many projects. OBJECTIVES: To explore what has been learned about the sharing of power in co-production within mental health research since the publication of these guidelines, by synthesising qualitative literature relating to power within co-produced mental health research. METHODS: We carried out a systematic review with thematic synthesis. We searched CINHAL, Embase and PubMed databases to identify qualitative or mixed-method studies relating to power within co-produced mental health research. Studies were independently screened by two reviewers for inclusion and appraised using the Critical Appraisal Skills Programme tool (CASP) for qualitative research. RESULTS: We identified nine papers that met the criteria for inclusion and were included in the synthesis. Three themes were generated: (1) Battling to share power against a more powerful system, (2) Empowerment through relationships and (3) The journey is turbulent, but it is not supposed to be smooth. CONCLUSIONS: Results highlight that power is pervasive, especially within the hierarchical systems research is often conducted within. Sharing power within co-produced mental health research is an ongoing complex process that is not intended to be easy. Respectful trusting relationships can help facilitate power sharing. However, ultimately meaningful change needs to come from research funders, universities and NHS providers. PATIENT OR PUBLIC CONTRIBUTION: The study authors include a lived experience researcher who contributed to the review design, analysis and write-up.

Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research.

BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in health research to ensure that the voices of patients and parents help shape and direct research programmes. To bring a family-centred and patient-oriented focus to our research and objectives, we asked parents about their experiences when they participated in healthcare research related to their child with CMC. METHODS: A parent partner, who also has a CMC, interviewed 12 parents (11 mothers and 1 father) of children living with medical complexity to understand their motivations to participate in healthcare research for their child. The parent partner conducted and transcribed the interviews and led our data analysis. Interpretive phenomenological analysis (IPA) was used to inform our data coding and analytic process. RESULTS: Parents described numerous reasons for their participation in research about their children. These motivations landed within four main themes: feeling helpless and hopeful, child-centred motivation, being part of something good and forming a relationship with the research team. In addition to these themes, parents highlighted factors that influenced their ability or desire to participate, such as time, capacity and the level of invasiveness for their child. Ultimately, the reflections by parents emphasized their unique lives in caring for their CMC and the need to integrate their lived experiences with the research they engage in. CONCLUSION: This study offers important insights for healthcare teams who want to engage parents of CMC to participate in research. Understanding parents' motivation to participate in research can help researchers create richer engagement and more meaningful experiences for themselves and their participants, thereby bolstering research programmes.

Socioecologies in shaping migrants and refugee youths' sexual and reproductive health and rights: a participatory action research study.

OBJECTIVE: This study explores socioecological factors facilitating the sexual and reproductive health and rights (SRHR) experiences of migrant and refugee youth (MRY) in Greater Western Sydney, Australia. MRY may be at higher risk for poorer SRH outcomes due to cultural, linguistic, and systemic barriers. METHODS: Using participatory action research, 17 focus groups were conducted with 87 MRY aged 15-29 from diverse cultural backgrounds. Data were analysed thematically, using socioecological framework. RESULTS: Key facilitators of MRY's SRHR were identified at the microsystem and exosystem levels, including (1) Peer dynamics and support, with friends serving as trusted confidants and sources of advice; (2) Safety and contraceptive choices, highlighting the importance of access to contraception and STI prevention; and (3) Digital platforms for SRHR information access, with online resources filling knowledge gaps. CONCLUSION: Findings suggest the need for SRHR interventions to leverage peer support networks, expand access to contraceptive options, and develop culturally appropriate digital resources for MRY. Further research is needed to identify and enhance facilitators across all socioecological levels to comprehensively support MRY's SRHR needs.

Migrants and refugee youth often struggle to access sexual and reproductive health information and services in their new countries. This study is an attempt to understand what helps young migrants and refugee maintain their sexual and reproductive health and rights in Greater Western Sydney, Australia. Our aim was to identify the positive factors in their environment that make it easier for them to access and use sexual health resources. We talked to 87 migrants and refugee youth aged 15­29 from various cultural backgrounds, conducting 17 group discussions about their experiences with sexual health. Our main results show three important factors that help these young people. The results were, that (1) Many young people trust their friends for advice and information about sexual health, (2) Having choices about contraception and ways to prevent sexually transmitted infections was important, and (3) The internet, especially social media and search engines, is a major source of sexual health information for young people. Understanding these helpful factors can guide better support for young migrants and refugees. It shows sexual health programs need to use peer support in sexual health programs, make sure young people can easily access contraception and protection and create trustworthy online resources about sexual health that are culturally appropriate. Our findings show more research is needed to find other ways to support young migrants and refugees with their sexual and reproductive health. This will help create better health services and education programs for these young people.

Adapting Complicated Grief Therapy for Use With People With Intellectual Disabilities: An Action Research Study.

BACKGROUND: There is established evidence of complicated grief among people with an intellectual disability. This paper describes the process of adapting complicated grief therapy (CGT) for this population. METHOD: Action research documented the adaptation of CGT. Qualitative methods included analysing meeting notes, reflective interviews with two members of the team involved in adapting the materials, and interviews with six professionals working in disability settings who reviewed the adapted materials. RESULTS: Key processes included adapting the standardised tools that form part of CGT and developing adapted approaches to abstract concepts related to death, dying and bereavement. Key therapeutic components such as imaginal revisiting and the role of significant others required adaptation for implementation with people with intellectual disabilities. CONCLUSION: The importance of adapting evidence-based therapies for people with intellectual disabilities is emphasised. This research provides an adapted form of an established therapy for piloting with this population.