Literature DB >> 26215893

"When everything changes:" Parent perspectives on the challenges of accessing care for a child with a disability.

Ashley Walker1, Moya L Alfonso2, Gavin Colquitt3, Kimberly Weeks2, Joseph Telfair2.   

Abstract

BACKGROUND: Health disparities exist among individuals living in rural and urban contexts in terms of access to health care and overall mortality. These disparities are typically greater for youth with disabilities living in rural areas, who face additional barriers in receiving health and support services specific to their disability. Parents are typically the ones responsible for coordinating the care needed by children with a disability; however, with numerous barriers present families are not provided adequate support to care for a child with disabilities.
OBJECTIVE: The purpose of this study was to examine barriers and facilitators to accessing health and support services among urban and rural families of children with disabilities.
METHODS: In-depth interviews were conducted with parents who provide care for an adolescent with a disability. The sample was comprised of parents from one rural county (N = 9) and one urban county (N = 10) in Georgia. Parental interviews were conducted face to face by a trained researcher. Each interview was audio-recorded. The recordings were transcribed and content analysis used to create codes and identify emerging themes.
RESULTS: The common themes found during the analysis include accessibility of health and support resources, transitions, and social isolation.
CONCLUSIONS: When comparing urban and rural areas, barriers to access do differ in terms of availability, but analysis revealed more similarities existed among parents from both contexts. Efforts must be made to increase opportunities for youth with disabilities to become connected with the local community in order to improve quality of life for families.
Copyright © 2016 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Accessing care; Adolescence; Caregiving; Disability; Quality of life

Mesh:

Year:  2015        PMID: 26215893     DOI: 10.1016/j.dhjo.2015.06.002

Source DB:  PubMed          Journal:  Disabil Health J        ISSN: 1876-7583            Impact factor:   2.554


  7 in total

1.  Social Isolation Among Families Caring for Children With Disabilities.

Authors:  Dennis J Baumgardner
Journal:  J Patient Cent Res Rev       Date:  2019-10-28

2.  Availability and Quality of Web Resources for Parents of Children With Disability: Content Analysis and Usability Study.

Authors:  Anabel Buteau-Poulin; Camille Gosselin; Andréa Bergeron-Ouellet; Jocelyne Kiss; Marie-Ève Lamontagne; Désirée Maltais; Christiane Trottier; Chantal Desmarais
Journal:  JMIR Pediatr Parent       Date:  2020-11-10

3.  Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives.

Authors:  Stephanie Loo; Annelise Brochier; Mikayla Gordon Wexler; Kristin Long; Patricia L Kavanagh; Arvin Garg; Mari-Lynn Drainoni
Journal:  BMC Health Serv Res       Date:  2021-01-12       Impact factor: 2.655

Review 4.  Sanfilippo Syndrome: Optimizing Care with a Multidisciplinary Approach.

Authors:  Zuzanna Cyske; Paulina Anikiej-Wiczenbach; Karolina Wisniewska; Lidia Gaffke; Karolina Pierzynowska; Arkadiusz Mański; Grzegorz Wegrzyn
Journal:  J Multidiscip Healthc       Date:  2022-09-19

5.  Integrated children's clinic care (ICCC) versus a self-directed care pathway for children with a chronic health condition: a multi-centre randomised controlled trial study protocol.

Authors:  Thuy Thanh Frakking; John Waugh; Hsien-Jin Teoh; Doug Shelton; Susan Moloney; Donna Ward; Michael David; Matthew Barber; Hannah Carter; Sharon Mickan; Kelly Weir
Journal:  BMC Pediatr       Date:  2018-02-19       Impact factor: 2.125

6.  Predictors of Coordinated and Comprehensive Care Within a Medical Home for Children With Special Healthcare (CHSCN) Needs.

Authors:  Ashley Walker; John G Peden; Morgan Emter; Gavin Colquitt
Journal:  Front Public Health       Date:  2018-06-07

Review 7.  Factors affecting access to primary health care services for persons with disabilities in rural areas: a "best-fit" framework synthesis.

Authors:  Ebenezer Dassah; Heather Aldersey; Mary Ann McColl; Colleen Davison
Journal:  Glob Health Res Policy       Date:  2018-12-25
  7 in total

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