Dataset Information

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.

ABSTRACT: Current programming and resources aimed at supporting the well-being of family caregivers often fail to address considerations unique to those caring for people with intellectual and/or developmental disabilities (IDDs). As a result, many caregivers of people with IDD feel isolated, stressed, and burnt out. A targeted research agenda informed by key stakeholders is needed and would allow research teams to coordinate resources, talents, and efforts to progress family caregiver well-being research in this area quickly and effectively. To address this aim, this pilot study used a Delphi design based on 2 rounds of questionnaires. In round 1, 19 stakeholders (18 females, 1 male), including 12 family caregivers, 3 rehabilitation providers, 2 researchers, and 2 organizational representatives, identified broad areas for caregiver well-being research. After collating the responses from round 1, stakeholders were asked to rank whether each area was considered a research priority in round 2. Data were analyzed using descriptive statistics and conventional content analysis. Eighteen stakeholders completed the round 2 survey (1 caregiver did not complete the round 2 survey), after which a consensus was reached. Stakeholders identified nine broad priorities, including system-level programs and services, models of care, health promotion, social inclusion, equity and diversity, capacity building, care planning along the lifespan, and balancing formal and natural community-based supports. Although preliminary in nature, the research priorities generated using an inclusive and systematic process may inform future efforts to promote the well-being of caregivers of Canadians with IDD.

SUBMITTER: Fakolade A

PROVIDER: S-EPMC10671217 | biostudies-literature | 2023 Nov

REPOSITORIES: biostudies-literature

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Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.

Fakolade Afolasade A Stone Caitlin C Bobbette Nicole N

International journal of environmental research and public health 20231116 22

Current programming and resources aimed at supporting the well-being of family caregivers often fail to address considerations unique to those caring for people with intellectual and/or developmental disabilities (IDDs). As a result, many caregivers of people with IDD feel isolated, stressed, and burnt out. A targeted research agenda informed by key stakeholders is needed and would allow research teams to coordinate resources, talents, and efforts to progress family caregiver well-being research ...[more]

PMID: 37998303

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Project description:BackgroundSmartphone apps can be a tool to facilitate independent medication management among persons with developmental disabilities. At present, multiple medication management apps exist in the market, but only 1 has been specifically designed for persons with developmental disabilities. Before initiating further app development targeting this population, input from stakeholders including persons with developmental disabilities, caregivers, and professionals regarding the most preferred features should be obtained.ObjectiveThe aim of this study was to identify medication management app features that are suitable to promote independence in the medication management process by young adults with developmental disabilities using a Delphi consensus method.MethodsA compilation of medication management app features was performed by searching the iTunes App Store, United States, in February 2016, using the following terms: adherence, medication, medication management, medication list, and medication reminder. After identifying features within the retrieved apps, a final list of 42 features grouped into 4 modules (medication list, medication reminder, medication administration record, and additional features) was included in a questionnaire for expert consensus rating. A total of 52 experts in developmental disabilities, including persons with developmental disabilities, caregivers, and professionals, were invited to participate in a 3-round Delphi technique. The purpose was to obtain consensus on features that are preferred and suitable to promote independence in the medication management process among persons with developmental disabilities. Consensus for the first, second, and third rounds was defined as ≥90%, ≥80%, and ≥75% agreement, respectively.ResultsA total of 75 responses were received over the 3 Delphi rounds-30 in the first round, 24 in the second round, and 21 in the third round. At the end of the third round, cumulative consensus was achieved for 60% (12/20) items in the medication list module, 100% (3/3) in the medication reminder module, 67% (2/3) in the medication administration record module, and 63% (10/16) in the additional features module. In addition to the medication list, medication reminder, and medication administration record features, experts selected the following top 3 most important additional features: automatic refills through pharmacies; ability to share medication information from the app with providers; and ability to share medication information from the app with family, friends, and caregivers. The top 3 least important features included a link to an official drug information source, privacy settings and password protection, and prescription refill reminders.ConclusionsAlthough several mobile apps for medication management exist, few are specifically designed to support persons with developmental disabilities in the complex medication management process. Of the 42 different features assessed, 64% (27/42) achieved consensus for inclusion in a future medication management app. This study provides information on the features of a medication management app that are most important to persons with developmental disabilities, caregivers, and professionals.

Dataset Information

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.

Publications

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.

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