Dataset Information

Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial.

ABSTRACT:

Background

Families raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children with disabilities. This is the first online intervention program focusing on the empowerment of families raising children with disabilities who live at home in Japan.

Method

The program consists of four online peer-based group sessions. Moreover, the families engage in several activities in stages wherein they discover their own issues, find measures to resolve them, and take action, while visualizing interfamily relationships, including social resources, and the status of their family life, with facilitators and other peer members. This study is a non-randomized, waitlist-controlled trial. It compares the results of the intervention group (early group) and the waitlist-controlled group (delayed group). The participants are allocated to the early or delayed group in the order of their applications. The main outcome is family empowerment. Other outcomes are the caregiver burden, self-reported capability to use social resources, self-compassion, and the quality of life (QOL) of primary caregivers. The timeline of the online outcome evaluation is as follows: the initial evaluation (Time 1 [T1]) is conducted before the start of the first early group program, and post-intervention evaluation (Time 2 [T2]) is conducted immediately (within 1 week) after the early group completes all four sessions (4 weeks) of the program. Follow-up evaluation (Time 3 [T3]) is conducted 4 weeks after the post-intervention evaluation. This timing is the same in the delayed group, but the delayed group will attend the program after a 4-week waiting period, compared to the early group.

Discussion

The intention is to evaluate whether the provision of the program developed in this study and the evaluation test design are feasible and to verify the efficacy of this program.

Trial registration

The UMIN Clinical Trials Registry (UMIN000044172), registration date: May 19, 2021.

SUBMITTER: Matsuzawa A

PROVIDER: S-EPMC9628164 | biostudies-literature | 2022 Nov

REPOSITORIES: biostudies-literature

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Publications

Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial.

Matsuzawa Akemi A Wakimizu Rie R Sato Iori I Fujioka Hiroshi H Nishigaki Kaori K Suzuki Seigo S Iwata Naoko N

Pilot and feasibility studies 20221102 1

<h4>Background</h4>Families raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children with disabilities. This is the first online intervention program focusing on the empowerment of families raising children with disabilities who live at home in Japan.<h4>Method</h4>The program c ...[more]

PMID: 36324142

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Project description:BackgroundThe empowerment of families raising children with disabilities (CWD) is crucial in maintaining their health. We developed an evidence-based, family empowerment intervention program focusing on social resource utilization and reducing care burden.ObjectiveThis study aimed to determine the program's effectiveness in promoting family empowerment.MethodsWe compared an intervention group that started the online intervention program a week after initial evaluation and a group that received delayed intervention (waitlist-controlled group) at three time points: initial (T1), post-course (T2), and follow-up (T3). The required sample size was 52.ResultsThere were 60 participants who applied to the program. One participant dropped out due to scheduling issues, and the others were assigned to either the intervention group (n = 29) or the waitlist-controlled group (n = 30). Those who responded to the baseline questionnaire (T1: 26 from the intervention group; 29 from the waitlist-controlled group) comprised the final sample. Among them, 20 members of the intervention group and 20 of the waitlist-controlled group attended all four sessions (completion rates of 77% and 69%, respectively). The attendance rate for sessions 1-4 was 94%, 89%, 81%, and 83%, respectively. The participant numbers in each session ranged from 5 to 18 per month. The baseline outcome score did not differ between the groups. The primary outcome, family empowerment, measured using the family empowerment scale (FES), was significantly higher at T2 for the intervention group than in the waitlist-controlled group and was sustained in the sensitivity analysis. The intervention group's FES, in the family relationships (FA) and relationships with service systems (SS) subdomains, increased significantly, unlike involvement with the community (SP). The intervention group experienced lower care burden and higher self-compassion, especially in the isolation and over-identification items of the self-compassion scale-short form (SCS-SF). The intervention group's FES (total, FA, SS) and SCS-SF (total, common humanity, isolation) changed significantly between T1 and T2, and all, except common humanity, were sustained up to T3; this group's FES (SP) and SCS (negative score, over-identification) changed significantly between T1 and T3. The waitlist-controlled group's FES (total, FA) and SCS (total) changed significantly and were sustained between T2 and T3.ConclusionsThe developed intervention program promotes family empowerment in families of CWD.Clinical trial registrationThis study is registered as a clinical trial in the UMIN Clinical Trials Registry (https://center6.umin.ac.jp/cgi-open-bin/ctr/ctr_view.cgi?recptno=R000050422, UMIN000044172).

Project description:There are increasing efforts to scale up services globally for families raising children with developmental disabilities (DDs). Existing interventions, often developed in high income, Western settings, need substantial adaptation before they can be implemented in different contexts. The aim of this study was to explore perspectives on the role that context plays in the adaptation and implementation of interventions targeting caregivers of children with DDs across settings. The study question was applied to the Caregiver Skills Training (CST) programme of the World Health Organization specifically, as well as to stakeholder experiences with caregiver interventions more broadly. Two focus group discussions (FGDs; n = 15 participants) and 25 individual semi-structured interviews were conducted. Participants were caregivers of children with DDs and professionals involved in adapting or implementing the CST across five continents and different income settings. Data were analysed thematically. Four main themes were developed: 1) Setting the scene for adaptations; 2) Integrating an intervention into local public services; 3) Understanding the reality of caregivers; 4) Challenges of sustaining an intervention. Informants thought that contextual adaptations were key for the intervention to fit in locally, even more so than cultural factors. The socio-economic context of caregivers, including poverty, was highlighted as heavily affecting service access and engagement with the intervention. Competing health priorities other than DDs, financial constraints, and management of long-term collaborations were identified as barriers. This study validates the notion that attention to contextual factors is an essential part of the adaptation of caregiver interventions for children with DDs, by providing perspectives from different geographical regions. We recommend a stronger policy and research focus on contextual adaptations of interventions and addressing unmet socio-economic needs of caregivers.

Project description:BackgroundOsteoarthritis (OA) is a major problem globally. First-line management comprises education and self-management strategies. Online support groups may be a low-cost method of facilitating self-management.ObjectiveThe aim of this randomized controlled pilot study is to evaluate the feasibility of the study design and implementation of an evidence-informed, expert-moderated, peer-to-peer online support group (My Knee Community) for people with knee OA. The impacts on psychological determinants of self-management, selected self-management behaviors, and health outcomes were secondary investigations.MethodsThis mixed methods study evaluated study feasibility (participant recruitment, retention, and costs), experimental intervention feasibility (acceptability and fidelity to the proposed design, including perceived benefit, satisfaction, and member engagement), psychological determinants (eg, self-efficacy and social support), behavioral measures, health outcomes, and harms. Of a total of 186, 63 (33.9%) participants (41/63, 65% experimental and 22/63, 35% control) with self-reported knee OA were recruited from 186 volunteers. Experimental group participants were provided membership to My Knee Community, which already had existing nonstudy members, and were recommended a web-based education resource (My Joint Pain). The control group received the My Joint Pain website recommendation only. Participants were not blinded to their group allocation or the study interventions. Participant-reported data were collected remotely using web-based questionnaires. A total of 10 experimental group participants also participated in semistructured interviews. The transcribed interview data and all forum posts by the study participants were thematically analyzed.ResultsStudy feasibility was supported by acceptable levels of retention; however, there were low levels of engagement with the support group by participants: 15% (6/41) of participants did not log in at all; the median number of times visited was 4 times per participant; only 29% (12/41) of participants posted, and there were relatively low levels of activity overall on the forum. This affected the results for satisfaction (overall mean 5.9/10, SD 2.7) and perceived benefit (17/31, 55%: yes). There were no differences among groups for quantitative outcomes. The themes discussed in the interviews were connections and support, information and advice, and barriers and facilitators. Qualitative data suggest that there is potential for people to derive benefit from connecting with others with knee OA by receiving support and assisting with unmet informational needs.ConclusionsAlthough a large-scale study is feasible, the intervention implementation was considered unsatisfactory because of low levels of activity and engagement by members. We recommend that expectations about the support group need to be made clear from the outset. Additionally, the platform design needs to be more engaging and rewarding, and membership should only be offered to people willing to share their personal stories and who are interested in learning from the experiences of others.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12619001230145; http://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377958.

Project description:IntroductionWith mobile technologies becoming more advanced and accessible, mobile health (mHealth) has been incorporated in delivering timely and convenient breastfeeding support. However, its feasibility and potential efficacy remain to be examined. Therefore, the primary objective of this study is to assess the feasibility and acceptability of an online instant messaging peer support group for breastfeeding. The secondary objective is to evaluate the effect of the intervention on breastfeeding outcomes.MethodsA pilot randomized controlled trial was conducted. A total of 33 primiparous women were recruited in the antenatal clinic at a public hospital in Hong Kong between March and April 2021. They were randomized to receive either standard care (n = 18) or standard care and receive peer-group support in an online instant messaging app (n = 15). Participants received telephone follow-up for up to six months postpartum or until they stopped breastfeeding. After completing the study, six participants in the intervention group were interviewed to understand their perceptions of the intervention.ResultsThis pilot study shows that online messaging peer support group is feasible and acceptable to women. In total, 54.4% of the eligible women agreed to participate, and 97.0% completed the follow-up. Participants perceived that providing peer support through instant messaging app is appropriate. It serves as a channel for the participants to ask questions and obtain information. Furthermore, meetings of the peer supporters and group members can be held to enhance the effectiveness of the intervention. In addition, no significant differences were found in any and exclusive breastfeeding rates, breastfeeding attitude, and breastfeeding self-efficacy between the two groups.ConclusionsThis study shows that online messaging peer support group is feasible and acceptable. A full-scale study should be conducted to understand the effect of the online instant messaging peer support group on breastfeeding outcomes.Trial registrationThe study protocol is registered on Clinicaltrial.gov (NCT04826796) on 1 April 2021.

Project description:BackgroundPersistent genital arousal disorder/genito-pelvic dysesthesia (PGAD/GPD) is a highly distressing yet poorly understood condition characterized by persistent genito-pelvic sensations, often described as "genital arousal," which occur in the absence of sexual desire. PGAD/GPD is associated with significant impairment in psychosocial and daily functioning; however, there are currently no empirically validated treatment algorithms for PGAD/GPD. Pelvic floor physical therapy exercises have been found to be effective at reducing other forms of genito-pelvic discomfort, such as vulvodynia, and may also be beneficial to those experiencing PGAD/GPD. Many individuals with PGAD/GPD report difficulty finding a health care provider who is knowledgeable about PGAD/GPD; therefore, pelvic floor education and exercises in an online format may have the potential to reach more individuals in need.ObjectiveThis study examined the feasibility of an online pelvic floor group education program; descriptively assessed outcomes related to distress, discomfort, catastrophizing, and mood; and obtained feedback from participants in order to inform the development of improved online group programs.MethodsFourteen women with current symptoms of PGAD/GPD attended an online, 8-session pelvic floor group education program. Participants completed questionnaires of symptoms (ie, symptom distress, discomfort) and psychosocial well-being (ie, depression, anxiety, symptom catastrophizing) prior to the group sessions (Time 1), immediately after the final group session (Time 2), and 6 months following the final group session (Time 3). Participants also completed an anonymous feedback questionnaire immediately following the group program.ResultsOverall, participants who attended a larger number of the group sessions (>5 sessions, n=7) appeared to report lower baseline (Time 1) symptoms and psychosocial impairment than those who attended fewer sessions (<5 sessions, n=7). A pattern of small improvements was seen following the group sessions on symptom and psychosocial outcomes. In the feedback questionnaire, breathing and relaxation exercises were described to be the most helpful home practice exercises, and participants rated sessions on (1) the relationship between emotions and PGAD/GPD symptoms and (2) relaxation exercises to be the most helpful. A number of barriers to participation in the group program were also identified, including comorbid health concerns and lack of personal time to complete the program/exercises.ConclusionsOnline interventions provide an opportunity to reach international participants who may otherwise struggle to access a knowledgeable provider for their PGAD/GPD symptoms. Addressing barriers may help to increase participants' abilities to engage in the program. Future programs may seek to integrate a greater focus on relaxation strategies and cognitive-affective strategies for managing PGAD/GPD symptoms.

Project description:Rationale and objectiveThe 'PEER-HD' multicenter study tests the effectiveness of peer mentorship to reduce hospitalizations in patients receiving maintenance hemodialysis. In this study, we describe the feasibility, efficacy, and acceptability of the mentor training program.Study designEducational program evaluation including the following aspects: (1) description of training content, (2) quantitative analysis of feasibility and acceptability of the program, and (3) quantitative pre-post analysis of efficacy of the training to impart knowledge and self-efficacy.Setting and participantsData were collected using baseline clinical and sociodemographic questionnaires from mentor participants enrolled in Bronx, NY, and Nashville, TN, themselves receiving maintenance hemodialysis.Analytical approachThe outcome variables were the following: (1) feasibility measured by training module attendance and completion, (2) efficacy of the program to impart knowledge and self-efficacy measured by kidney knowledge and self-efficacy surveys, and (3) acceptability as measured by an 11-item survey of trainer performance and module content.ResultsThe PEER-HD training program included 4 2-hour modules that covered topics including dialysis-specific knowledge and mentorship skills. Of the 16 mentor participants, 14 completed the training program. There was complete attendance to all training modules, though some patients required flexibility in scheduling and format. Performance on posttraining quizzes was consistent with high knowledge (mean scores ranged from 82.0%-90.0% correct). Mean dialysis-specific knowledge scores trended higher post training than at baseline though this difference was not statistically significant (90.0% vs 78.1%; P = 0.1). No change in mean self-efficacy scores was demonstrated from before to after training, among mentor participants (P = 0.2). Program evaluation assessments of acceptability were favorable [mean of all patient scores (0-4) within each module ranged from 3.43-3.93].LimitationsSmall sample size.ConclusionsThe PEER-HD mentor training program required accommodation to patients' schedules but was feasible. Participants rated the program favorably, and although the comparison of performance on knowledge assessments post- and pre-program showed uptake of knowledge, this was not statistically significant.

Dataset Information

Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial.

Background

Method

Discussion

Trial registration

Publications

Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial.

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