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12 result(s) for "Fredlund, Mary"
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Family focused interventions that address parental domestic violence and abuse, mental ill-health, and substance misuse in combination: A systematic review
Parental domestic violence and abuse (DVA), mental ill-health (MH), and substance misuse (SU) are three public health issues that tend to cluster within families, risking negative impacts for both parents and children. Despite this, service provision for these issues has been historically siloed, increasing the barriers families face to accessing support. Our review aimed to identify family focused interventions that have combined impacts on parental DVA, MH, and/or SU. We searched 10 databases (MEDLINE, PsycINFO, Embase, CINAHL, Education Research Information Centre, Sociological Abstracts, Applied Social Sciences Index & Abstracts, ProQuest Dissertations and Theses Global, Web of Science Core Collection, and Cochrane Central Register of Controlled Trials) from inception to July 2021 for randomised controlled trials examining the effectiveness of family focused, psychosocial, preventive interventions targeting parents/carers at risk of, or experiencing, DVA, MH, and/or SU. Studies were included if they measured impacts on two or more of these issues. The Cochrane Risk of Bias Tool 2 was used to quality appraise studies, which were synthesised narratively, grouped in relation to the combination of DVA, MH, and/or SU outcomes measured. Harvest plots were used to illustrate the findings. Thirty-seven unique studies were identified for inclusion. Of these, none had a combined positive impact on all three outcomes and only one study demonstrated a combined positive impact on two outcomes. We also found studies that had combined adverse, mixed, or singular impacts. Most studies were based in the U.S., targeted mothers, and were rated as ‘some concerns’ or ‘high risk’ of bias. The results highlight the distinct lack of evidence for, and no ‘best bet’, family focused interventions targeting these often-clustered risks. This may, in part, be due to the ways interventions are currently conceptualised or designed to influence the relationships between DVA, MH, and/or SU. Trial registration : PROSPERO registration: CRD42020210350 .
Public involvement in health research: what does ‘good’ look like in practice?
Plain English summary Background Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research. Aim This article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved. What we did and how we did it We wanted to establish what the literature defines as ‘good’ public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups. Findings Some of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of ‘good’ involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced. Background Patient and public involvement is important for producing relevant and accessible health research. Evidence of impact from involvement is growing, but there is also a need for research on how to create conditions for meaningful collaborations between researchers and public advisers. Objective We report on a co-produced self-reflective evaluation of involvement practices in three UK research programmes. Methods A structured review identified research-based principles for ‘good’ public involvement in research. In parallel, members of three involvement groups co-developed statements on how the groups work, and enablers and challenges to collaborative research. The author team analysed these statements using the findings from the review. Results We identified 11 international articles reporting research-based principles for involvement published between 2013 and 2017. We identified five ‘values’ and seven ‘practice principles’ for ‘good’ involvement. There was convergence between these principles and the priorities of the involvement groups. But the groups also identified additional good involvement practice that were not reported by the literature: passion, enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. We present examples of how principles for good involvement are practiced in these groups, and highlight principles that have been challenging to implement. Conclusions Ongoing appraisal of public involvement is crucial. We present a process for self-evaluation, illuminate what ‘good’ means to researchers and public advisers involved in research, and identify areas for improvement. We conclude that provision of resources that enable support to public advisers in turn enable universities and research teams to implement other principles of good involvement.
Healthy Parent Carers programme: development and feasibility of a novel group-based health-promotion intervention
Background Parent carers of disabled children report poor physical health and mental wellbeing. They experience high levels of stress and barriers to engagement in health-related behaviours and with ‘standard’ preventive programmes (e.g. weight loss programmes). Interventions promoting strategies to improve health and wellbeing of parent carers are needed, tailored to their specific needs and circumstances. Methods We developed a group-based health promotion intervention for parent carers by following six steps of the established Intervention Mapping approach. Parent carers co-created the intervention programme and were involved in all stages of the development and testing. We conducted a study of the intervention with a group of parent carers to examine the feasibility and acceptability. Standardised questionnaires were used to assess health and wellbeing pre and post-intervention and at 2 month follow up. Participants provided feedback after each session and took part in a focus group after the end of the programme. Results The group-based Healthy Parent Carers programme was developed to improve health and wellbeing through engagement with eight achievable behaviours (CLANGERS – Connect, Learn, be Active, take Notice, Give, Eat well, Relax, Sleep), and by promoting empowerment and resilience. The manualised intervention was delivered by two peer facilitators to a group of seven parent carers. Feedback from participants and facilitators was strongly positive. The study was not powered or designed to test effectiveness but changes in measures of participants’ wellbeing and depression were in a positive direction both at the end of the intervention and 2 months later which suggest that there may be a potential to achieve benefit. Conclusions The Healthy Parent Carers programme appears feasible and acceptable. It was valued by, and was perceived to have benefited participants. The results will underpin future refinement of the intervention and plans for evaluation.
Healthy Parent Carers: Acceptability and practicability of online delivery and learning through implementation by delivery partner organisations
Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer-led group-based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID-19. The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context. This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co-created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll-out of the programme with other delivery partner organisations. This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes. Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research.
Healthy Parent Carers programme: mixed methods process evaluation and refinement of a health promotion intervention
ObjectivesParent carers of children with special educational needs or disability are at risk of poorer mental and physical health. In response to these needs, we codeveloped the ‘Healthy Parent Carers’ (HPC) programme. This study examined the views and experiences of participants in the HPC feasibility trial to inform programme refinement.Intervention, setting and participantsHPC is a peer-led group-based intervention (supported by online materials) for primary carers of disabled children, encouraging behaviours linked with health and well-being. It was delivered by two lead and six assistant peer facilitators in six community sites (one lead and one assistant per group) in South West England over six or 12 sessions. Control participants had online materials only. The trial involved 47 intervention and 45 control parent carers (97% female and 97% white) and eight facilitators (one male).DesignA preplanned mixed methods process evaluation using questionnaires and checklists (during and after the intervention), qualitative interviews with participants after intervention (n=18) and a focus group with facilitators after trial.ResultsHPC was highly acceptable to participants and facilitators and experiences were very positive. Participants reported that the programme increased awareness of what parent carers could and could not change and their self-efficacy to engage in health-promoting behaviours. The intended mechanisms of action (social identification and peer support) matched participants’ expectations and experiences. Control participants found the online-only programme flexible but isolating, as there were no opportunities to share ideas and problem solve with peers, the key function of the programme. Areas for improvement were identified for programme content, facilitator training and delivery.ConclusionHPC was acceptable, well received and offers considerable potential to improve the health of parent carers. Under the pandemic, the challenge going forward is how best to maintain reach and fidelity to function while delivering a more virtual programme.Trial registration numberISRCTN15144652.
What are the methodological characteristics of evidence and gap maps? A systematic review and evidence and gap map
Introduction Clarity on the characteristics of methods used to produce evidence and gap maps (EGMs) will highlight areas where method development is needed to ensure these increasingly produced tools are made following best practice to assure their quality and utility. This paper aims to describe the range, nature and variability of key methodological characteristics of studies publishing EGMs. Methods We followed a protocol, written a‐prior and informed by PRISMA and MECCIR guidelines for undertaking systematic reviews. We searched nine data bases, from 2010, for studies across any discipline that included details of their methods used to produce an EGM. Search results were screened by two reviewers independently and the subsequent data was extracted and managed according to predefined criteria. We mapped these together with the year of publication and the area of research as the two primary dimensions. We followed established methods for mapping the evidence, including the process of developing the map framework and the filters for our interactive map. We sought input and involvement from stakeholders during this process. Results We found 145 studies from nine distinct research areas, with health research accounting for 67%. There were 11 map designs found, of these bubble plots were the most common design, before 2019, since then it has been a matrix map design. Stakeholders were involved in 47.7% of studies, 48.35% of studies stated finding gaps was an aim of their work, 42% reported publishing or registering a protocol and only 9.39% of studies mentioned a plan to update their evidence maps/EGMs. Discussion/Conclusion Key areas of methodological development relate to: the involvement of stakeholders, the conceptualization of gaps and the practices for updating maps. The issues of ambiguity in terminology, the flexibility of visualizations of the data and the lack of reporting detail were other aspects that needs further consideration in studies producing an EGM.
Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children
Background Parent carers of children with special educational needs or disability are at higher risk of poor mental and physical health. The need for a tailored, peer-led group programme was raised by parent carers, who co-developed the Healthy Parent Carers programme with researchers. This study aimed to test the feasibility of programme delivery in community settings, and the feasibility and acceptability of a randomised controlled trial design. Methods Participants were individually randomised with concealed allocation to a structured group programme and access to online resources (intervention), or access to the online resources only (control). Measures of wellbeing and secondary and economic outcomes were collected before randomisation, immediately post-intervention, and 6 months post-intervention. Descriptive statistics on recruitment and attrition, demographics, attendance, and fidelity of intervention delivery were analysed with feedback on the acceptability of the trial design. Results One hundred and ninety-three parent carers expressed an interest in taking part. Ninety-two participants recruited from across six sites were randomised (47 intervention, 45 control). Lead and assistant facilitators were trained and delivered the group sessions. Sixteen (34%) participants in the intervention arm did not attend any sessions, and attendance varied across sites and sessions. One participant withdrew post-randomisation, and 83 (90%) participants completed outcome measures at the six-month follow-up. Conclusions The study demonstrated that it was feasible to deliver the programme in community settings. The number of parent carers who expressed interest signifies the need for such a programme and the feasibility of recruiting to a definitive trial. Loss to follow-up was low. Further research is needed to explore ways to reduce barriers to participation in person and assess the feasibility and acceptability of programme content and delivery for more ethnically diverse groups, and potentially using interpreters. Given the Covid-19 pandemic and delivery format feedback, there is also a need to investigate remote or blended delivery strategies. Although the results indicate that a definitive trial is feasible, programme impact would be strengthened through exploration of these uncertainties. Trial registration ISRCTN, ISRCTN15144652 , registered on 25 October 2018, ClinicalTrials.gov , NCT03705221 , registered on 15 October 2018.
Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design
Background Parent carers of disabled children are at increased risk of mental and physical health problems. They often experience challenges to maintaining good health which have implications for their well-being and their ability to care for their children. In response to these needs, researchers and parent carers developed the Healthy Parent Carers (HPC) programme. It is a peer-led, group-based intervention that promotes behaviours associated with health and well-being. The aims of this trial are to assess the acceptability of the HPC programme and the feasibility of its delivery in the community and to assess the feasibility and acceptability of the design of the definitive trial to evaluate the programme’s effectiveness and cost-effectiveness. Methods We will establish six research sites and train facilitators to deliver the manualised intervention. Parent carers of children with special educational needs and disabilities will be individually randomised, stratified by group delivery site, to either take part in a group programme and online resources (intervention) or to receive access to the online resources only (control). Measures of mental health; well-being; health-related quality of life; health behaviours; patient activation; protective factors such as resilience, social connections, and practical support; and use of health care, social care, and wider societal resources will be collected before randomisation (baseline), immediately post-intervention, and 6 months later. Recruitment of participants, adherence to the programme, and the dose received will be assessed. Group sessions will be audio-recorded to evaluate the fidelity of delivery and participant engagement. Participants’ and facilitators’ feedback on the programme content and delivery, their experience, and the acceptability of the outcome measures and trial design will be collected through feedback forms, interviews, and focus groups. Discussion This trial will assess whether the programme delivery and evaluative trial design are feasible, to inform whether to progress to a definitive randomised controlled trial to test the effectiveness and cost-effectiveness of the Healthy Parent Carers programme. Trial registration ISRCTN, ISRCTN151144652 , registered on 25 October 2018 ; ClinicalTrials.gov, NCT03705221 , registered on 15 October 2018.
Voices of Experience: Development of the Flourishing Practice Model of Capabilities of Intimate Partner Violence Specialists
Purpose People experiencing intimate partner violence (IPV) often seek, or are referred to, specialized service providers such as shelter workers, counsellors in programs for children exposed to IPV, and facilitators for men’s behaviour change programs. This paper discusses the process of collaborating with service providers and survivors across Canada to articulate the often-unrecognized knowledge and skills of IPV specialists.MethodsWork included a scoping review and analysis of 140 academic and practice papers, interviews with 62 expert service providers, eight Delphi-method surveys and over 70 hours of collaborative discussion with expert working groups of experienced service providers and survivors. ResultsAreas of knowledge and skill were drafted based on the review of literature and analysis of interviews with experienced service providers, then rated in Delphi surveys, and discussed by expert working groups. Consensus was reached on the Flourishing Practice Model which identifies nine areas of capability shared across IPV specialists, as well as unique knowledge and skills used to support and collaborate with survivors, recognize and respond to infant, child and youth experiences of violence and intervene to end abusive behaviours. The “stem” recognizes the critical role of IPV specialist organizations and leaders in supporting service providers’ capabilities. “Blank petals” are included to signify expertise that has not yet been documented and to recognize ongoing growth.ConclusionsThe combination of methods and processes allowed for the integration of research and practice knowledge with survivor and service provider voices to gain deeper insight into the knowledge and skills of IPV specialists.
Evolutionary unpredictability in cancer model systems
Despite the advent of advanced molecular prognostic tools, it is still difficult to predict the course of disease for cancer patients at the individual level. This lack of predictability is also reflected in many experimental cancer model systems, begging the question of whether certain biological aspects of cancer (eg. growth, evolution etc.) can ever be anticipated or if there remains an inherent unpredictability to cancer, similar to other complex biological systems. We demonstrate by a combination of agent-based mathematical modelling, analysis of patient-derived xenograft model systems from multiple cancer types, and in-vitro culture that certain conditions increase stochasticity of the clonal landscape of cancer growth. Our findings indicate that under those conditions, the cancer genome may behave as a complex dynamic system, making its long-term evolution inherently unpredictable.