Parents' experiences of services for their child with a life-limiting neurodevelopmental disability.

This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on integrating the findings to identify higher-level i...

Descripción completa

Detalles Bibliográficos
Publicado en:Children's Health Care Vol. 49; no. 2; pp. 134 - 153
Autores principales: Kiernan, Gemma, Courtney, Eileen, Ryan, Karen, McQuillan, Regina, Guerin, Suzanne
Formato: research tables/charts Journal Article
Publicado: Taylor & Francis Ltd Apr-Jun2020
Acceso en línea:Ver este registro en EBSCOhost
fields @attributes:
  recordID: 1
pdfLink:
plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=142313242&site=ehost-live
header:
  @attributes:
    shortDbName: ccm
    uiTerm: 142313242
    longDbName: CINAHL Complete
    uiTag: AN
  controlInfo:
    bkinfo:
    dissinfo:
    jinfo:
      jid:
        02739615
        7LJ
      jtl: Children's Health Care
      issn: 02739615
      maglogo: N
    pubinfo:
      dt: Apr-Jun2020
      vid: 49
      iid: 2
      pid: 377
      pub: Taylor & Francis Ltd
      place: Philadelphia, Pennsylvania
    artinfo:
      ui:
        142313242
        142313242
        142313242
        10.1080/02739615.2019.1605608
        142313242
      ppf: 134
      ppct: 19
      formats:
        fmt:
          – @attributes:
              type: T
          – @attributes:
              type: P
      tig:
        atl: Parents' experiences of services for their child with a life-limiting neurodevelopmental disability.
      aug:
        au:
          Kiernan, Gemma
          Courtney, Eileen
          Ryan, Karen
          McQuillan, Regina
          Guerin, Suzanne
        affil: School of Nursing and Human Sciences, Dublin City University, Glasnevin, Dublin 9, Ireland
      sug:
        subj:
          Nervous System Diseases In Infancy and Childhood
          Developmental Disabilities
          Health Services Accessibility
          Parental Attitudes Evaluation
          Human
          Multimethod Studies
          Healthcare Disparities
          Geographic Factors
          Professional-Family Relations
          Attitude of Health Personnel
          Child
          Child: 6-12 years
      ab: This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on integrating the findings to identify higher-level insights. Results suggest parents' experiences are mixed, showing more negative than positive experiences. Access to services was described as problematic, with obstacles including funding and geographical inequities. Helpful aspects included staff attitudes and relationships and, to a lesser extent, coordinated care. Unhelpful aspects included inconsistencies in the provision of services. The findings suggest some implications for service provision, including the need for a more family-centered approach.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
    refInfo:
    holdings:
      @attributes:
        islocal: N