Literature DB >> 20496968

Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities.

J Aaron Resch1, Gerardo Mireles, Michael R Benz, Cheryl Grenwelge, Rick Peterson, Dalun Zhang.   

Abstract

BACKGROUND: This study sought to examine the specific sources of challenges as identified by parents of children with disabilities.
METHOD: Focus groups were conducted with 40 parent caregivers. Data gathered were coded into themes which were then analyzed through an intentional process of data reduction that resulted in the cross site validation of four superordinate themes.
RESULTS: Four themes emerged as the most prominent barriers to positive parent wellbeing: (a) access to information and services, (b) financial barriers, (c) school and community inclusion, and (d) family support. These four themes are indicative of problems associated with a lack of match between caregiver needs and services, resources, or support available in the community to meet those needs.
CONCLUSION: Caring for a child with a disability can be challenging, but many of these challenges are likely due to a lack of necessary environmental supports. Future research should expand on these findings and policy makers, scientists and providers should give particular attention to the environmental support needs of parents in order to create policies and interventions that are more family-centered.

Entities:  

Mesh:

Year:  2010        PMID: 20496968     DOI: 10.1037/a0019473

Source DB:  PubMed          Journal:  Rehabil Psychol        ISSN: 0090-5550


  23 in total

1.  Parent and professional perspectives on behavioral inflexibility in autism spectrum disorders: A qualitative study.

Authors:  Chetna Sethi; Clare Harrop; Wanqing Zhang; Jill Pritchett; Allison Whitten; Brian A Boyd
Journal:  Autism       Date:  2018-11-03

2.  Factors contributing to defaulting scheduled therapy sessions by caregivers of children with congenital disabilities.

Authors:  A Nota; T M Chikwanha; J January; N Dangarembizi
Journal:  Malawi Med J       Date:  2015-03       Impact factor: 0.875

3.  "I'm Doing My Part, I Just Need Help From the Community": Intervention Implications of Foster and Adoptive Parents' Experiences Raising Children and Young Adults With FASD.

Authors:  Christie L M Petrenko; Michelle E Alto; Andrea R Hart; Sarah M Freeze; Lynn L Cole
Journal:  J Fam Nurs       Date:  2019-05-13       Impact factor: 3.818

Review 4.  Peer support interventions for parents and carers of children with complex needs.

Authors:  Gina-Maree Sartore; Anastasia Pourliakas; Vince Lagioia
Journal:  Cochrane Database Syst Rev       Date:  2021-12-20

5.  'I Wish the School Had a Better Understanding of the Diagnosis': parent perspectives on educational needs of students with sex chromosome aneuploidies.

Authors:  Talia Thompson; Nicole Stinnett; Nicole Tartaglia; Shanlee Davis; Jennifer Janusz
Journal:  J Res Spec Educ Needs       Date:  2022-03-13

6.  Challenges faced by parents of children with learning disabilities in Opuwo, Namibia.

Authors:  Clever Taderera; Herna Hall
Journal:  Afr J Disabil       Date:  2017-07-26

7.  Access to health care for children with neural tube defects: Experiences of mothers in Zambia.

Authors:  Micah M Simpamba; Patricia M Struthers; Margaret M Mweshi
Journal:  Afr J Disabil       Date:  2016-12-02

8.  Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children.

Authors:  Gretchen Bjornstad; Beth Cuffe-Fuller; Obioha C Ukoumunne; Mary Fredlund; Annabel McDonald; Kath Wilkinson; Jenny Lloyd; Annie Hawton; Vashti Berry; Mark Tarrant; Aleksandra Borek; Katharine Fitzpatrick; Annette Gillett; Shelley Rhodes; Stuart Logan; Christopher Morris
Journal:  Pilot Feasibility Stud       Date:  2021-07-23

9.  Perceptions of caring for children with disabilities: Experiences from Moshi, Tanzania.

Authors:  Anna McNally; Hasheem Mannan
Journal:  Afr J Disabil       Date:  2013-01-23

10.  Challenges experienced by mothers caring for children with cerebral palsy in Zambia.

Authors:  Carol Singogo; Margaret Mweshi; Anthea Rhoda
Journal:  S Afr J Physiother       Date:  2015-11-10
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