Different priorities: a comparison of parents' and health professionals' perceptions of quality of life in quadriplegic cerebral palsy

Morrow, A. M.; Quine, S.; Loughlin, E. V. O.; Craig, J. C.
February 2008
Archives of Disease in Childhood;Feb2008, Vol. 93 Issue 2, p119
Academic Journal
Objective: Almost all children with quadriplegic cerebral palsy (CP) have feeding difficulties. Our aim was to identify the major determinants of feeding-related quality of life (QoL) in children with quadriplegic CP from the perspective of parents and to compare findings with the perceptions of health professionals. Design: Qualitative cross-sectional study. Methods: A trained facilitator conducted four semi-structured focus groups with parents (n = 21) of children with quadriplegic CP attending a multi-disciplinary feeding clinic at a paediatric teaching hospital in Sydney, Australia, between November 2003 and February 2005. All sessions were audio- and video-taped. NVivo software was used to facilitate thematic analysis of the transcribed audiotapes and to compare them with data from focus groups conducted by the same research team with health professional participants. Results: Parental perceptions clustered into the same five themes described by health professionals (parent-child interaction; delivery of health services; the child's emotional well-being; the child's physical well-being, and socialisation), but the content of the subthemes and the values attached differed, for example health professionals valued weight gain, whereas parents valued their child feeling loved. Health professionals did not consider the full range of issues important to families. The differences in priorities for treatment outcomes negatively affected the parent-health professional relationship. Conclusions: Disparities between parents' and health professionals' perceptions provide useful insight into communication between the two, identify the range of issues important to families, and highlight the parents' expert role in assessing the child's emotional and social well-being. The five themes identified provide a framework for a comprehensive evaluation of the health status of children with quadriplegic CP and feeding difficulties.


Related Articles

  • Dyskinetic cerebral palsy.  // Archives of Disease in Childhood;Aug2007, Vol. 92 Issue 8, p707 

    The article reflects on a study on dyskinetic cerebral palsy among Swedish children. The study reveals that children born between 1995 and 1998 showed a decrease in the prevalence of cerebral palsy as a whole, not of dyskinetic cerebral palsy. It states that out of a total of 202,095 live...

  • SEATING POSITION AND LENGTH OF UTTERANCE OF PRESCHOOLERS WITH CEREBRAL PALSY. Redstone, Fran // Perceptual & Motor Skills;Dec2005, Vol. 101 Issue 3, p961 

    This study investigated the effects of semireclining and upright positions on production of utterances of increasing length by 10 physically typical pre- schoolers and 10 children with cerebral palsy. Sentences of 3, 7, and 10 syllables were imitated on one breath using the RespitraceTM to...

  • A Comparison of Fractionated Reaction Time Between Cerebral Palsied and Nonhandicapped Youths. Parks, Susan; Rose, Debra J.; Dunn, John M. // Adapted Physical Activity Quarterly;Oct1989, Vol. 6 Issue 4, p370 

    This research studied the effects of cerebral palsy on the ability to plan and execute a one-handed aiming task. Simple reaction time (SRT) was fractionated into its premotor (PMT) and motor (MOT) components. Subjects were 20 youths, 10 with cerebral palsy and 10 nonhandicapped youths. The...

  • POSTER PRESENTATIONS: PEDIATRICS.  // Canadian Journal of Neurological Sciences;May2005 Supplement, Vol. 32, pS63 

    Presents abstracts of research works related to pediatrics. "Risk factors for carbamazepine induced leucopenia in children," by AliAkbar Asadi-Pooya; "health related quality of life in children with cerebral palsy," by C. Campbell and P. Humphreys; "National activity profile of Canadian...

  • Can We Identify Predictors of Multilevel Botulinum Toxin A Injections in Children With Cerebral Palsy Who Walk With a Flexed Knee Pattern? Scholtes, Vanessa A.; Dallmeijer, Annet J.; Becher, Jules C. // Journal of Child Neurology;Jun2008, Vol. 23 Issue 6, p628 

    This study evaluates whether the literature-reported potential predictors can predict the outcome of multilevel botulinum toxin A injections in children who walk with flexed knees. The associations between 11 different predictors and 2 different outcome measures (the Gross Motor Function Measure...

  • Oral Baclofen Increases Maximal Voluntary Neuromuscular Activation of Ankle Plantar Flexors in Children With Spasticity Due to Cerebral Palsy. van Doornik, Johan; Kukke, Sahana; McGill, Kevin; Rose, Jessica; Sherman-Levine, Sara; Sanger, Terence D. // Journal of Child Neurology;Jun2008, Vol. 23 Issue 6, p635 

    Although spasticity is a common symptom in children with cerebral palsy, weakness may be a much greater contributor to disability. We explore whether a treatment that reduces spasticity may also have potential benefit for improving strength. Ten children with cerebral palsy and spasticity in the...

  • Legislative document (1954), No. 44. Dolphin, Jane E. // Exceptional Children;Jan1955, Vol. 21 Issue 4, p156 

    The article provides an overview of an article on the progress made in cerebral palsy research in New York published in the 1954 issue of "Legislative Document."

  • A Pediatric Revolution At Home. Arango, Polly // Health Affairs;Sep/Oct2004, Vol. 23 Issue 5, p237 

    Relates the author's experience of raising a son with cerebral palsy. Difficulties experienced by the author as a mother; Change of diagnosis from cerebral palsy to a progressive neurological disorder of unknown origin; Medical assistance provided to her son; Onset of seizure disorder and loss...

  • Promoting Leisure Participation as Part of Health and Well-Being in Children and Youth With Cerebral Palsy. Shikako-Thomas, Keiko; Kolehmainen, Niina; Ketelaar, Marjolijn; Bult, Maureen; Law, Mary // Journal of Child Neurology;Aug2014, Vol. 29 Issue 8, p1125 

    Participation in leisure is a human right and is central to the health of children and youth. The World Health Organization’s International Classification of Functioning, Disability and Health for Children and Youth supported a change in thinking about what outcomes are most relevant in...


Read the Article


Sorry, but this item is not currently available from your library.

Try another library?
Sign out of this library

Other Topics