Literature DB >> 12100874

Supporting 'expert' parents--professional support and families caring for a child with complex health care needs in the community.

Susan Kirk1, Caroline Glendinning.   

Abstract

In the United Kingdom a new group of children with intensive and complex health care needs are now being cared for at home as a result of medical advances and government policies emphasising the community as the arena for care. This has led their parents to become involved in providing care of a highly technical and intensive nature that would previously have been considered to be the domain of professionals. In-depth qualitative interviews were conducted with parents and professionals to discover parents' and professionals' experiences of receiving and providing support in a context where parents rather than professionals are the expert caregivers. This paper describes the elements of professional 'support' that were particularly valued by parents and concludes with a discussion of the implications for professional education and roles.

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Year:  2002        PMID: 12100874     DOI: 10.1016/s0020-7489(01)00069-4

Source DB:  PubMed          Journal:  Int J Nurs Stud        ISSN: 0020-7489            Impact factor:   5.837


  8 in total

1.  "Fighting the system": families caring for ventilator-dependent children and adults with complex health care needs at home.

Authors:  Knut Dybwik; Terje Tollåli; Erik W Nielsen; Berit S Brinchmann
Journal:  BMC Health Serv Res       Date:  2011-07-04       Impact factor: 2.655

2.  Home mechanical ventilation and specialised health care in the community: Between a rock and a hard place.

Authors:  Knut Dybwik; Erik W Nielsen; Berit S Brinchmann
Journal:  BMC Health Serv Res       Date:  2011-05-23       Impact factor: 2.655

3.  How family carers engage with technical health procedures in the home: a grounded theory study.

Authors:  Janet McDonald; Eileen McKinlay; Sally Keeling; William Levack
Journal:  BMJ Open       Date:  2015-07-06       Impact factor: 2.692

4.  "It goes against the grain": A qualitative study of the experiences of parents' administering distressing health-care procedures for their child at home.

Authors:  Gemma Spiers; Bryony Beresford
Journal:  Health Expect       Date:  2017-02-14       Impact factor: 3.377

5.  Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy.

Authors:  Haoyang Yan; Stephanie K Kukora; Kenneth Pituch; Patricia J Deldin; Cynthia Arslanian-Engoren; Brian J Zikmund-Fisher
Journal:  BMC Med Inform Decis Mak       Date:  2022-07-25       Impact factor: 3.298

6.  Negotiating boundaries of care: an interpretative phenomenological analysis of the relational conflicts surrounding home mechanical ventilation following traumatic spinal cord injury.

Authors:  A Dickson; T Karatzias; A Gullone; G Grandison; D Allan; J Park; P Flowers
Journal:  Health Psychol Behav Med       Date:  2018-04-25

7.  Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs.

Authors:  Roberta L Woodgate; Marie Edwards; Jacquie D Ripat; Barbara Borton; Gina Rempel
Journal:  BMC Pediatr       Date:  2015-11-26       Impact factor: 2.125

8.  Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study.

Authors:  Janet E Rennick; Isabelle St-Sauveur; Alyssa M Knox; Margaret Ruddy
Journal:  BMC Pediatr       Date:  2019-08-06       Impact factor: 2.125

  8 in total

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