Dataset Information

Needs management in families affected by childhood-onset dystrophinopathies.

ABSTRACT:

Purpose

To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States.

Methods

Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual's functioning.

Results

Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed less consistently were funding for needs not covered by insurance and psychosocial support.

Conclusions

Healthcare providers, public health practitioners, and policymakers should be aware of the many needs reported by caregivers, and focus on addressing gaps in provision of needed financial and psychosocial services.

SUBMITTER: Conway KM

PROVIDER: S-EPMC6399767 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Needs management in families affected by childhood-onset dystrophinopathies.

Conway Kristin M KM Eichinger Katy K Trout Christina C Romitti Paul A PA Mathews Katherine D KD Pandya Shree K SK

SAGE open medicine 20190302

<h4>Purpose</h4>To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States.<h4>Methods</h4>Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the in ...[more]

PMID: 30854202

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Project description:The overall aim is twofold: 1) to stretch the borderline regarding the present knowledge of clinical and economic cost-effectiveness of eHealth as an aid for facilitating and supporting self-management in families with long-term childhood illness, and 2) to develop a sustainable multidisciplinary research environment for advancing, evaluating, and implementing models of eHealth to promote self-management for children and their families. A number of clinical studies are planned for, covering different parts of paediatric healthcare. The concept of child-centred care is essential. Experienced researchers from care science, medicine, economics, technology, and social science will collaborate around common issues. Expertise on IT technology will analyse the preconditions for using IT; economic evaluations will be performed alongside clinical studies; and cultural and implementation perspectives will be used to analyse the challenges that arise from the changes in relations among children, family and professionals, which may occur as a result of the introduction of eHealth. Child health is not only important in itself. Investments in child health may also generate significant future gains, such as improved educational and labour market performance. Six complex, long-term and costly challenges in paediatric healthcare are planned for, involving eHealth technology such as interactive video consultation, pictures, on-line monitoring, and textual communication. The research follows an international framework for developing and evaluating complex interventions in healthcare. End-users (families) and relevant care providers (professionals in health and social care) will participate throughout the research process. The overall aim is certainly to analyse eHealth as an aid for facilitating and supporting self-management. However, the plan also includes the research issue whether eHealth at the same time improves the allocation of scarce health care- and societal resources.

Project description:BackgroundAdverse Childhood Experiences (ACEs) such as, physical and sexual abuse, neglect, or living in a household with domestic violence or substance misuse, can have negative impacts on mental and physical health across the lifecourse. A deeper understanding of the kinds of services that people affected by ACEs feel they need to overcome these negative impacts is required.Review questionHow do people affected by ACEs between the ages of 3 to 18 experience support and services in the UK? What are their needs relating to services and support?MethodsSystematic review of qualitative evidence. We harvested relevant studies from existing systematic reviews of qualitative evidence located through a search of 18 databases. Included studies needed to be published in or after 2008, conducted in the UK, and report the views of people exposed to ACEs relating to their service needs. We included studies with participants who were affected by ACEs between 3 and 18 years old with no restriction on the age at which they accessed services.ResultsWe identified 71 reviews from which we harvested 238 references on title and abstract screening. Following full text screening and quality and relevance appraisal we included 20 studies. Each of the included studies focussed on a specific ACE population. Almost half focused on young people who were fostered, looked-after or leaving care. No studies focussed on parental incarceration or divorce. Young people value emotional and practical support. Service providers were most valued for displaying empathy, being non-judgemental, and being active listeners. Supportive relationships, especially with adults, are a key factor in feeling understood.ConclusionsPeople affected by ACEs describe the importance of stability and continuity in the support they receive. These factors are important for allowing necessary time to overcome obstacles and build up trust. Research often frames response to ACE in terms of short term individual psychological outcomes but these findings highlight the importance of focussing on wider social factors to encourage meaningful engagement with services.

Dataset Information

Needs management in families affected by childhood-onset dystrophinopathies.

Purpose

Methods

Results

Conclusions

Publications

Needs management in families affected by childhood-onset dystrophinopathies.

Similar Datasets

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