Dataset Information

Research Priorities in Family Caregiving: Process and Outcomes of a Conference on Family-Centered Care Across the Trajectory of Serious Illness.

ABSTRACT: The number of older adults living with functional decline and serious illness is growing exponentially at a time when availability of both family and professional caregivers is strained. Achieving optimal outcomes for this vulnerable population involves advancing the knowledge needed to improve the quality of care delivered by families, health professionals, and community programs. Recent reports from National Institute of Health and the National Academy of Science, Engineering and Medicine have called for the identification of gaps in key areas of family caregiving intervention research. In March 2018, the Family Caregiving Institute at UC Davis convened an invitational meeting of over 50 thought leaders in family caregiving-representing service agencies, funding organizations, and academia-to participate in the Research Priorities in Caregiving Summit: Advancing Family-Centered Care across the Trajectory of Serious Illness. Using an iterative process, attendees identified the top 10 research priorities and created research priority statements that incorporated a definition of the priority topic, rationale for the priority; problem(s) to address; priority population(s); and example research topics. The research priority statements serve as a roadmap for research development that will address the most significant gaps in the caregiving field.

SUBMITTER: Harvath TA

PROVIDER: S-EPMC7019660 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Research Priorities in Family Caregiving: Process and Outcomes of a Conference on Family-Centered Care Across the Trajectory of Serious Illness.

Harvath Theresa A TA Mongoven Jennifer M JM Bidwell Julie T JT Cothran Fawn A FA Sexson Kathryn E KE Mason Diana J DJ Buckwalter Kathleen K

The Gerontologist 20200201 Suppl 1

The number of older adults living with functional decline and serious illness is growing exponentially at a time when availability of both family and professional caregivers is strained. Achieving optimal outcomes for this vulnerable population involves advancing the knowledge needed to improve the quality of care delivered by families, health professionals, and community programs. Recent reports from National Institute of Health and the National Academy of Science, Engineering and Medicine have ...[more]

PMID: 32057081

Similar Datasets

Project description:BACKGROUND:Smoking rates in the United States have been reduced in the past decades to 15% of the general population. However, up to 88% of people with psychiatric symptoms still smoke, leading to high rates of disease and mortality. Therefore, there is a great need to develop smoking cessation interventions that have adequate levels of usability and can reach this population. OBJECTIVE:The objective of this study was to report the rationale, ideation, design, user research, and final specifications of a novel smoking cessation app for people with serious mental illness (SMI) that will be tested in a feasibility trial. METHODS:We used a variety of user-centered design methods and materials to develop the tailored smoking cessation app. This included expert panel guidance, a set of design principles and theory-based smoking cessation content, development of personas and paper prototyping, usability testing of the app prototype, establishment of app's core vision and design specification, and collaboration with a software development company. RESULTS:We developed Learn to Quit, a smoking cessation app designed and tailored to individuals with SMI that incorporates the following: (1) evidence-based smoking cessation content from Acceptance and Commitment Therapy and US Clinical Practice Guidelines for smoking cessation aimed at providing skills for quitting while addressing mental health symptoms, (2) a set of behavioral principles to increase retention and comprehension of smoking cessation content, (3) a gamification component to encourage and sustain app engagement during a 14-day period, (4) an app structure and layout designed to minimize usability errors in people with SMI, and (5) a set of stories and visuals that communicate smoking cessation concepts and skills in simple terms. CONCLUSIONS:Despite its increasing importance, the design and development of mHealth technology is typically underreported, hampering scientific innovation. This report describes the systematic development of the first smoking cessation app tailored to people with SMI, a population with very high rates of nicotine addiction, and offers new design strategies to engage this population. mHealth developers in smoking cessation and related fields could benefit from a design strategy that capitalizes on the role visual engagement, storytelling, and the systematic application of behavior analytic principles to deliver evidence-based content.

Project description:Attendance at professional society meetings facilitates networking, collaboration, and success in academic/scientific fields. Insufficient funds, support, or resources for caregiving can inhibit attendance for parents/caretakers, who may become professionally disadvantaged by not attending professional society conferences. The American Society for Nutrition (ASN) offered a family support grant for caregiving needs during the annual conference (maximum: $750); however, the perceived impact of caregiving funds on attendance outcomes is unknown. The objective of this study was to assess the need of family support for attendance to the ASN annual conference among applicants and to assess recipients' experience and usage of funds. Applicants completed a pre-conference survey assessing requested funds, out-of-pocket caregiving expenses to attend the meeting, the influence of receiving the grant on attendance, and additional factors. Recipients completed a post-conference survey assessing use of the funds and impact of the grant on attending/participating. Grant applications (n = 110) were majority women, aged 26-45 y, married, at the trainee or assistant professor level, from diverse racial/ethnic backgrounds, and with parenting noted as the primary responsibility. Thirty-seven percent of applicants were currently lactating or expressing milk. The average amount requested was $650 US dollars, and >60% of respondents indicated plans to use funds to bring a family member/friend to the conference. Seventy-seven percent of respondents indicated that receiving the grant would influence their attendance. The post-conference survey (n = 25) indicated that recipients felt that receiving the grant was helpful in attending the conference (92%), specifically attending scientific sessions (96%) and poster sessions (80%). Recipients indicated the grant helped them network with attendees (88%), visit the exhibitor hall (72%), and participate in career development activities (64%). The ASN family support grant aided attendance and supported recipients' participation in conference activities, particularly early-career women who are parents, with the goal of supporting diversity and inclusivity in scientific/academic fields. This trial was registered at www.clinicaltrials.gov as NCT03432585.

Dataset Information

Research Priorities in Family Caregiving: Process and Outcomes of a Conference on Family-Centered Care Across the Trajectory of Serious Illness.

Publications

Research Priorities in Family Caregiving: Process and Outcomes of a Conference on Family-Centered Care Across the Trajectory of Serious Illness.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure