Literature DB >> 15961877

Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed.

Roberta S Rehm1, Joan F Bradley.   

Abstract

The authors combined and analyzed parent data from two field studies examining family experiences in raising children who were both medically fragile and developmentally delayed or disabled to compare these families' experiences to published attributes of normalization. Normalization is usually considered a useful conceptual and coping strategy for families of children with chronic conditions, but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions, severely affecting how families organized and managed their daily lives, with the result that families did not fit currently established attributes of normalization. Instead, parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards.

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Year:  2005        PMID: 15961877     DOI: 10.1177/1049732305276754

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  16 in total

1.  A longitudinal study of families with technology-dependent children.

Authors:  Valerie Boebel Toly; Carol M Musil; John C Carl
Journal:  Res Nurs Health       Date:  2011-12-07       Impact factor: 2.228

2.  A national profile of caregiver challenges among more medically complex children with special health care needs.

Authors:  Dennis Z Kuo; Eyal Cohen; Rishi Agrawal; Jay G Berry; Patrick H Casey
Journal:  Arch Pediatr Adolesc Med       Date:  2011-11

3.  Balancing biomedical, care, and support needs in the technology dependent child.

Authors:  D W Vickers; L C Maynard
Journal:  Arch Dis Child       Date:  2006-06       Impact factor: 3.791

4.  What impact do hospital and unit-based rules have upon patient and family-centered care in the pediatric intensive care unit?

Authors:  Jennifer Baird; Betty Davies; Pamela S Hinds; Christina Baggott; Roberta S Rehm
Journal:  J Pediatr Nurs       Date:  2014-10-08       Impact factor: 2.145

5.  Families with children who are technology dependent: normalization and family functioning.

Authors:  Valerie Boebel Toly; Carol M Musil; John C Carl
Journal:  West J Nurs Res       Date:  2010-12-09       Impact factor: 1.967

6.  Patterns of family management of childhood chronic conditions and their relationship to child and family functioning.

Authors:  Kathleen A Knafl; Janet A Deatrick; George J Knafl; Agatha M Gallo; Margaret Grey; Jane Dixon
Journal:  J Pediatr Nurs       Date:  2013-04-19       Impact factor: 2.145

7.  Factors Related to Depressive Symptoms in Mothers of Technology-Dependent Children.

Authors:  Valerie Boebel Toly; Carol M Musil
Journal:  Issues Ment Health Nurs       Date:  2015-07       Impact factor: 1.835

8.  Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability.

Authors:  Roberta S Rehm; Elena Fuentes-Afflick; Lucille T Fisher; Catherine A Chesla
Journal:  ANS Adv Nurs Sci       Date:  2012 Jul-Sep       Impact factor: 1.824

9.  Parental perceptions of the outcome and meaning of normalization.

Authors:  Kathleen A Knafl; Blair G Darney; Agatha M Gallo; Denise B Angst
Journal:  Res Nurs Health       Date:  2010-04       Impact factor: 2.228

10.  Visualising difference, similarity and belonging in paediatric genetics.

Authors:  Janice McLaughlin; Emma K Clavering
Journal:  Sociol Health Illn       Date:  2011-11-03
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