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Participant and Public Involvement in Refining a Peer-Volunteering Active Aging Intervention: Project ACE (Active, Connected, Engaged).

ABSTRACT: Evidence for the health benefits of a physically active lifestyle among older adults is strong, yet only a small proportion of older people meet physical activity recommendations. A synthesis of evidence identified "best bet" approaches, and this study sought guidance from end-user representatives and stakeholders to refine one of these, a peer-volunteering active aging intervention.Focus groups with 28 older adults and four professional volunteer managers were conducted. Semi-structured interviews were conducted with 9 older volunteers. Framework analysis was used to gauge participants' views on the ACE intervention.Motives for engaging in community groups and activities were almost entirely social. Barriers to participation were lack of someone to attend with, lack of confidence, fear of exclusion or "cliquiness" in established groups, bad weather, transport issues, inaccessibility of activities, ambivalence, and older adults being "set in their ways". Motives for volunteering included "something to do," avoiding loneliness, the need to feel needed, enjoyment, and altruism. Challenges included negative events between volunteer and recipient of volunteering support, childcare commitments, and high volunteering workload.Peer-volunteering approaches have great potential for promotion of active aging. The systematic multistakeholder approach adopted in this study led to important refinements of the original ACE intervention. The findings provide guidance for active aging community initiatives highlighting the importance of effective recruitment strategies and of tackling major barriers including lack of motivation, confidence, and readiness to change; transport issues; security concerns and cost; activity availability; and lack of social support.

SUBMITTER: Withall J

PROVIDER: S-EPMC5946893 | biostudies-other | 2018 Mar

REPOSITORIES: biostudies-other

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Participant and Public Involvement in Refining a Peer-Volunteering Active Aging Intervention: Project ACE (Active, Connected, Engaged).

Withall Janet J Thompson Janice L JL Fox Kenneth R KR Davis Mark M Gray Selena S de Koning Jolanthe J Lloyd Liz L Parkhurst Graham G Stathi Afroditi A

The Gerontologist 20180301 2

<h4>Background</h4>Evidence for the health benefits of a physically active lifestyle among older adults is strong, yet only a small proportion of older people meet physical activity recommendations. A synthesis of evidence identified "best bet" approaches, and this study sought guidance from end-user representatives and stakeholders to refine one of these, a peer-volunteering active aging intervention.<h4>Methods</h4>Focus groups with 28 older adults and four professional volunteer managers were ...[more]

PMID: 27927733

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Project description:BackgroundThe Active Connected Engaged [ACE] study is a multi-centre, pragmatic, two-arm, parallel-group randomised controlled trial [RCT] with an internal pilot phase. The ACE study incorporates a multi-level mixed methods process evaluation including a systems mapping approach and an economic evaluation. ACE aims to test the effectiveness and cost-effectiveness of a peer-volunteer led active ageing intervention designed to support older adults at risk of mobility disability to become more physically and socially active within their communities and to reduce or reverse, the progression of functional limitations associated with ageing.Methods/designCommunity-dwelling, older adults aged 65 years and older (n = 515), at risk of mobility disability due to reduced lower limb physical functioning (Short Physical Performance Battery (SPPB) score of 4-9 inclusive) will be recruited. Participants will be randomised to receive either a minimal control intervention or ACE, a 6-month programme underpinned by behaviour change theory, whereby peer volunteers are paired with participants and offer them individually tailored support to engage them in local physical and social activities to improve lower limb mobility and increase their physical activity. Outcome data will be collected at baseline, 6, 12 and 18 months. The primary outcome analysis (difference in SPPB score at 18 months) will be undertaken blinded to group allocation. Primary comparative analyses will be on an intention-to-treat (ITT) basis with due emphasis placed on confidence intervals.DiscussionACE is the largest, pragmatic, community-based randomised controlled trial in the UK to target this high-risk segment of the older population by mobilising community resources (peer volunteers). A programme that can successfully engage this population in sufficient activity to improve strength, coordination, balance and social connections would have a major impact on sustaining health and independence. ACE is also the first study of its kind to conduct a full economic and comprehensive process evaluation of this type of community-based intervention. If effective and cost-effective, the ACE intervention has strong potential to be implemented widely in the UK and elsewhere.Trial registrationISRCTN, ISRCTN17660493. Registered on 30 September 2021. Trial Sponsor: University of Birmingham, Contact: Dr Birgit Whitman, Head of Research Governance and Integrity; Email: researchgovernance@contacts.bham.ac.uk. Protocol Version 5 22/07/22.

Project description:BackgroundSuccessful peer volunteering is central to many community-based, active ageing initiatives. This study synthesises the perspectives of a range of stakeholders involved in peer volunteering initiatives and provides recommendations as to how peer volunteers can be effectively mobilised as community assets.MethodsAn evidence synthesis of qualitative data from (a) the evaluation of ACE (Active, Connected, Engaged), a feasibility trial of a peer volunteering active ageing intervention, and (b) interviews with volunteers and managers of third sector organisations providing peer volunteering programmes. Data were analysed using directed content analysis.ResultsTen managers, 22 volunteers and 20 ACE participants were interviewed. The analysis identified six main themes, 33 higher and 22 sub themes. Main themes were: (i) Motives, (ii) Benefits, (iii) Skills and Characteristics, (iv) Challenges, (v) Training Needs, (vi) Recruitment and Retention. Altruism, changes in life circumstances, opportunities to reconnect with the community and personal fulfilment were the main reasons for volunteering. Volunteering was described as being personally rewarding, an avenue to acquire new skills and knowledge, and an opportunity for increased social connections and physical activity. Good peer volunteers are committed, reliable, have a good sense of humour, good interpersonal skills and are able to relate to participants. When pairing volunteers with participants, shared interests and geographical proximity are important to consider. Clarity of role, level of time commitment, regular feedback, recognition of effort and strong networks for on-going support are important strategies to facilitate volunteer retention.ConclusionsThe findings of this study support the value of peer volunteering as a strategy for mobilising community assets in promoting active ageing. To ensure success and longevity, these schemes require appropriate funding and efficient administrative support.

Project description:BackgroundClinical trials in home hospice settings are important to build the evidence base for practice, but balancing the burden and benefit of clinical trial conduct for clinicians, patients, and family caregivers is challenging. A stakeholder-engaged process can help inform and refine key aspects of home hospice clinical trials. The aim of this study was to describe a stakeholder-engaged process to refine, design, and implement aspects of an educational intervention trial in home hospice, including recommendations for refining intervention content and delivery, recruitment and enrollment strategies, and content and frequency of outcome measurement.MethodsA panel of interprofessional (1 hospice administrator, 3 nurses, 2 physicians, 2 pharmacists) and 2 former family caregiver stakeholders was systematically selected and invited to participate based on expertise, representing 2 geographically distinct hospices who were participating in the clinical trial. Teleconferences followed a predetermined procedural sequence: 1. pre-meeting materials distribution and review; 2. pre-meeting email solicitation of concerns in response to materials; 3. teleconference with structured and guided discussion; and 4. documentation and distribution of minutes for accuracy review and future meeting guidance. Discussion topics were distinct for each panel meeting. Written reflections on the stakeholder engagement process were collected from panel members to further refine our process.ResultsFive initial biweekly teleconferences resulted in recommendations for recruitment strategy, enrollment process, measurement frequency, patient inclusion, and primary care physician notification of the patient's trial involvement. The panel continues to participate in quarterly teleconferences to review progress and unexpected questions and concerns. Panelist reflections reveal personal and professional benefit from participation.ConclusionsAn interprofessional stakeholder process is feasible and invaluable for developing home hospice intervention studies, contributing to better science, successful trial implementation, and relevant, valid outcomes.Trial registrationClinicaltrials.gov, NCT03972163 , Registered June 3, 2019.

Project description:BACKGROUND:Active Rehabilitation (AR) is a community peer-based concept for people with spinal cord injury (SCI) that is primarily delivered through brief residential training programmes. Despite a plethora of positive anecdotal evidence of AR programmes as life-changing experiences, the effects of AR-programmes have not been evaluated scientifically. Here, we present the protocol of the INTERnational Project for the Evaluation of "activE Rehabilitation" (inter-PEER) aiming to evaluate the effects of AR training programmes on community-dwelling individuals with SCI. METHODS:International prospective cohort study that recruits consecutive participants in AR training programmes. Evaluation is conducted through a web-based survey at 3 time-points: at the commencement and completion of the training programme, and 3 months after the end of the training programme. Evaluation also includes a practical wheelchair skills test at the first two time-points. The primary outcome measures are the Spinal Cord Independence Measure Self-report (SCIM-SR), the Queensland Evaluation of Wheelchair Skills test (QEWS), the Wheelchair Skills Test Questionnaire (WST-Q) and the Moorong Self-Efficacy Scale (MSES). The secondary outcome measures are the 11-item Life Satisfaction Questionnaire (LiSat-11), the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation), the Leisure Time Physical Activity Questionnaire for people with SCI (LTPAQ-SCI) and the 10-item Connor-Davidson Resilience Scale (CD-RISC-10). We piloted the implementation of the protocol in Sweden in 7 participants with diverse SCI and sociodemographic characteristics and collected feedback from participants and peer-mentors about study procedures through interviews, a workshop and field observations. DISCUSSION:Inter-PEER is the first initiative to propose a systematic evaluation of the effects of AR training programmes among individuals with SCI. The project is a collaborative work of multiple stakeholders, including researchers, clinicians, peer mentors with SCI, and administrators of organisations providing AR programmes. The inter-PEER uses standardised outcome measures relevant to the AR context, it will facilitate quality evaluations of community peer-based programmes, stimulate international collaborations, and inform the design of randomised controlled trials on the effects of AR training programmes.

Project description:Alternative splicing allows a single gene to produce multiple transcript-level splice isoforms from which the translated proteins may show differences in their expression and function. Identifying the major functional or canonical isoform is important for understanding gene and protein functions. Identification and characterization of splice isoforms is a stated goal of the HUPO Human Proteome Project and of neXtProt. Multiple efforts have catalogued splice isoforms as "dominant", "principal", or "major" isoforms based on expression or evolutionary traits. In contrast, we recently proposed highest connected isoforms (HCIs) as a new class of canonical isoforms that have the strongest interactions in a functional network and revealed their significantly higher (differential) transcript-level expression compared to nonhighest connected isoforms (NCIs) regardless of tissues/cell lines in the mouse. HCIs and their expression behavior in the human remain unexplored. Here we identified HCIs for 6157 multi-isoform genes using a human isoform network that we constructed by integrating a large compendium of heterogeneous genomic data. We present examples for pairs of transcript isoforms of ABCC3, RBM34, ERBB2, and ANXA7. We found that functional networks of isoforms of the same gene can show large differences. Interestingly, differential expression between HCIs and NCIs was also observed in the human on an independent set of 940 RNA-seq samples across multiple tissues, including heart, kidney, and liver. Using proteomic data from normal human retina and placenta, we showed that HCIs are a promising indicator of expressed protein isoforms exemplified by NUDFB6 and M6PR. Furthermore, we found that a significant percentage (20%, p = 0.0003) of human and mouse HCIs are homologues, suggesting their conservation between species. Our identified HCIs expand the repertoire of canonical isoforms and are expected to facilitate studying main protein products, understanding gene regulation, and possibly evolution. The network is available through our web server as a rich resource for investigating isoform functional relationships (http://guanlab.ccmb.med.umich.edu/hisonet). All MS/MS data were available at ProteomeXchange Web site (http://www.proteomexchange.org) through their identifiers (retina: PXD001242, placenta: PXD000754).

Dataset Information

Participant and Public Involvement in Refining a Peer-Volunteering Active Aging Intervention: Project ACE (Active, Connected, Engaged).

Publications

Participant and Public Involvement in Refining a Peer-Volunteering Active Aging Intervention: Project ACE (Active, Connected, Engaged).

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