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

Archives of Disease in Childhood

Volumn 93, Issue 2, 2008, Pages 119-125

  Morrow, A M ^a,b   Quine, S ^b   Loughlin, E V O ^c   Craig, J C ^a,b  

^a CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

^c CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CEREBRAL PALSY; CHILD PARENT RELATION; CHILD WELFARE; CONTROLLED STUDY; DOCTOR PATIENT RELATION; FEEDING DISORDER; GASTROSTOMY; HEALTH CARE PERSONNEL; HEALTH SERVICE; HUMAN; NUTRITIONAL STATUS; PRIORITY JOURNAL; QUADRIPLEGIA; QUALITY OF LIFE; SOCIAL ASPECT; SOCIALIZATION; WEIGHT GAIN; ADOLESCENT; ADULT; ATTITUDE TO HEALTH; AUSTRALIA; CAREGIVER; CHILD; COMPARATIVE STUDY; CROSS-SECTIONAL STUDY; FAMILY HEALTH; HEALTH CARE DELIVERY; HEALTH PERSONNEL ATTITUDE; HUMAN RELATION; INFORMATION PROCESSING; PARENT; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT;

ADOLESCENT; ADULT; ATTITUDE OF HEALTH PERSONNEL; ATTITUDE TO HEALTH; CAREGIVERS; CEREBRAL PALSY; CHILD; CHILD, PRESCHOOL; CROSS-SECTIONAL STUDIES; DELIVERY OF HEALTH CARE; FAMILY HEALTH; FOCUS GROUPS; GASTROSTOMY; HUMANS; INTERPERSONAL RELATIONS; NEW SOUTH WALES; PARENT-CHILD RELATIONS; PARENTS; PROFESSIONAL-FAMILY RELATIONS; QUALITY OF LIFE;

EID: 38849138656     PISSN: 00039888     EISSN: 14682044     Source Type: Journal    
DOI: 10.1136/adc.2006.115055     Document Type: Article

References (36)

1. Reilly S, Skuse D, Poblete X. Prevalence of feeding problems and oral motor dysfunction in children with cerebral palsy: a community survey. J Pediatr 1996;129:877-82.
2. Sullivan PB, Lambert B, Rose M, et al. Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study. Dev Med Child Neurol 2000;42:674-80.
3. Fung EB, Samson-Fang L, Stallings VA, et al. Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy. J Am Diet Assoc 2002;102:361-73.
4. Liptak GS, O'Donnell M, Conaway M, et al. Health status of children with moderate to severe cerebral palsy. Dev Med Child Neurol 2001;43:364-70.
5. Morton RE, Wheatley R, Minford J. Respiratory tract infections due to direct and reflux aspiration in children with severe neurodisability. Dev Med Child Neurol 1999;41:329-34.
6. Stallings VA, Charney EB, Davies JC, et al. Nutrition-related growth failure of children with quadriplegic cerebral palsy. Dev Med Child Neurol 1993;35:126-38.
7. Taylor LA, Weiner T, Lacey SR, et al. Chronic lung disease is the leading risk factor correlating with the failure (wrap disruption) of antireflux procedures in children. J Pediatr Surg 1994;29:161-4.
8. Strauss DJ, Shavelle RM, Anderson TW. Life expectancy of children with cerebral palsy. Pediatr Neurol 1998;18:143-9.
9. Liptak GS, Accardo PJ. Health and social outcomes of children with cerebral palsy. J Pediatr 2004;145:S36-41.
10. Craig GM, Scambler G, Spitz L. Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support. Dev Med Child Neurol 2003;45:183-8.
11. Reilly S. Feeding problems in children with cerebral palsy. Curr Paediatr 1993;3:209-13.
12. Samson-Fang L, Fung E, Stallings VA, et al. Relationship of nutritional status to health and societal participation in children with cerebral palsy. J Pediatr 2002;141:637-43.
13. Spalding K, McKeever P. Mothers' experiences caring for children with disabilities who require a gastrostomy tube. J Pediatr Nurs 1998;13:234-43.
14. Thorne SE, Radford MJ, Armstrong EA. Long-term gastrostomy in children: caregiver coping. Gastroenterol Nurs 1997;20:46-53.
15. Smith SW, Camfield C, Camfield P. Living with cerebral palsy and tube feeding: a population-based follow-up study. J Pediatr 1999;135:307-10.
16. Guerriere DN, McKeever P, Llewellyn-Thomas H, et al. Mothers' decisions about gastrostomy tube insertion in children: factors contributing to uncertainty. Dev Med Child Neurol 2003;45:470-6.
17. Sleigh G. Mothers' voice: a qualitative study on feeding children with cerebral palsy. Child Care Health Dev 2005;31:373-83.
18. Petersen MC, Kedia S, Davis P, et al. Eating and feeding are not the same: caregivers' perceptions of gastrostomy feeding for children with cerebral palsy. Dev Med Child Neurol 2006;48:713-17.
19. Thorne SE, Radford MJ, McCormick J. The multiple meanings of long-term gastrostomy in children with severe disability. J Pediatr Nurs 1997;12:89-99.
20. Rothwell PM, McDowell Z, Wong CK, et al. Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis. BMJ 1997;314:1580-3.
21. Janse AJ, Sinnema G, Uiterwaal CS, et al. Quality of life in chronic illness: perceptions of parents and paediatricians. Arch Dis Child 2005;90:486-91.
22. Janse AJ, Gemke RJ, Uiterwaal CS, et al. Quality of life: patients and doctors don't always agree: a meta-analysis. J Clin Epidemiol 2004;57:653-61.
23. Sprangers MA, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 1992;45:743-60.
24. Sprangers MA, Sneeuw KC. Are healthcare providers adequate raters of patients' quality of life - perhaps more than we think? Acta Oncol 2000;39:5-8.
25. Kreuger RA. Focus groups: a practical guide for applied research. 2nd edn. Thousand Oaks, CA: Sage Publications, 1994.
26. Kreuger RA. Analysing and reporting focus group findings. Thousand Oaks, CA: Sage Publications, 1998.
27. Quine S. Focus groups. In: Kerr CB, Taylor R, Heard G, eds. Handbook of public health methods. Sydney: McGraw-Hill, 1998:527-33.
28. Richards L. Using NVivo in qualitative research. London: Sage Publications, 1999.
29. Pope C, Ziebland S, Maya N. Qualitative research in health care: analysing qualitative data. BMJ 2000;320:114-16.
30. Morrow AM, Quine S, Craig JC. Health professionals' perceptions of feeding-related quality of life in children with quadriplegic cerebral palsy. Child Care Health Dev 2007;33(5):529-38.
31. Phua V, Reid SM, Walstab JE, et al. Inpatient care of children with cerebral palsy as perceived by their parents. J Paediatr Child Health 2005;41:432-6.
32. McManus V, Michelsen SI, Parkinson K, et al. Discussion groups with parents of children with cerebral palsy in Europe designed to assist development of a relevant measure of environment [Erratum appears in Child Care Health Dev 2006;32:393]. Child Care Health Dev 2006;32:185-92.
33. Sneeuw KC, Aaronson NK, Sprangers MA, et al. Evaluating the quality of life of cancer patients: assessments by patients, significant others, physicians and nurses. Br J Cancer 1999;81:87-94.
34. Janse AJ, Uiterwaal CS, Gemke RJ, et al. A difference in perception of quality of life in chronically ill children was found between parents and pediatricians. J Clin Epidemiol 2005;58:495-502.
35. Sneeuw KC, Sprangers MA, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. J Clin Epidemiol 2002;55:1130-43.
36. Bach JR, Vega J, Majors J, et al. Spinal muscular atrophy type 1 quality of life. Am J Phys Med Rehabil 2003;82:137-42.