Different priorities: a comparison of parents’ and health professionals’ perceptions of quality of life in quadriplegic cerebral palsy
| Autor: | Jonathan C. Craig, Susan Quine, Angela M Morrow, Edward V O Loughlin |
|---|---|
| Rok vydání: | 2007 |
| Předmět: |
Adult
Parents medicine.medical_specialty Adolescent Attitude of Health Personnel media_common.quotation_subject education Cerebral palsy Quality of life (healthcare) Professional-Family Relations Perception medicine Humans Interpersonal Relations Parent-Child Relations Child media_common Family Health Gastrostomy business.industry Cerebral Palsy Public health Focus Groups medicine.disease Focus group Cross-Sectional Studies Caregivers Feeling Child Preschool Family medicine Facilitator Pediatrics Perinatology and Child Health Quality of Life Physical therapy New South Wales Thematic analysis business Attitude to Health Delivery of Health Care |
| Zdroj: | Archives of Disease in Childhood. 93:119-125 |
| ISSN: | 1468-2044 0003-9888 |
| DOI: | 10.1136/adc.2006.115055 |
| Popis: | 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. N-Vivo software was used to facilitate thematic analysis of the transcribed audiotapes and to compare 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 child9s emotional well-being; the child9s physical well-being, and socialisation), but the content of the sub-themes and the values attached differed e.g. 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 parents9 and health professionals9 perceptions provide useful insight into communication between the two; identify the range of issues important to families, and highlight the parents9expert role in assessing the child9s 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. |
| Databáze: | OpenAIRE |
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