The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy

Health and Social Care in the Community

Volumn 18, Issue 5, 2010, Pages 520-528

  Kenneson, Aileen ^a,b   Bobo, Janet Kay ^c  

^a McKing Consulting Corp   (United States)

^b NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES   (United States)

^c BATTELLE MEMORIAL INSTITUTE   (United States)

Author keywords

Burden; Caregiver; Distress; Muscular dystrophy; Quality of life; Stress

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ADULT; ARTICLE; CAREGIVER; CHILD; COST OF ILLNESS; DUCHENNE MUSCULAR DYSTROPHY; FAMILY RELATION; FEMALE; HUMAN; INFANT; MENTAL STRESS; MIDDLE AGED; NURSING; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; SATISFACTION; SOCIAL SUPPORT; UNITED STATES; WOMEN'S HEALTH;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; CAREGIVERS; CHILD; CHILD, PRESCHOOL; COST OF ILLNESS; FAMILY RELATIONS; FEMALE; HUMANS; INFANT; MIDDLE AGED; MUSCULAR DYSTROPHY, DUCHENNE; PERSONAL SATISFACTION; QUALITY OF LIFE; QUESTIONNAIRES; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; UNITED STATES; WOMEN'S HEALTH; YOUNG ADULT;

EID: 77955372486     PISSN: 09660410     EISSN: 13652524     Source Type: Journal    
DOI: 10.1111/j.1365-2524.2010.00930.x     Document Type: Article

References (46)

1. Children with Disabilities in Australia 2004, http://www.aihw.gov.au/publications/index.cfm/title/10086, [WWW document] URL accessed 21 January 2009
2. Bayat M. Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research 2007, 51:702-714.
3. Bedard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donnell M. The Zarit Burden Interview: a new short version and screening version. Gerontologist 2001, 41:652-657.
4. Bethell CD, Read D, Blumberg SJ, Newacheck PW. What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. Maternal and Child Health Journal 2008, 12:1-14.
5. Bobo J, Kolor K, Kenneson A, Brown MA. Adherence to American Academy of Pediatrics Recommendations for Cardiac Care among female carriers of Duchenne and Becker muscular dystrophy. Pediatrics 2009, 123:e471-e475.
6. Boyer F, Drame M, Morrone I, Novella JL. Factors relating to career burden for families of persons with muscular dystrophy. Journal of Rehabilitative Medicine 2006, 38:309-315.
7. Bradley DM, Parsons EP, Clarke AJ. Experience with screening newborns for Duchenne muscular dystrophy in Wales. British Medical Journal 1993, 306:357-360.
8. Bushby K, Muntoni F, Bourke JP. 107th ENMC international workshop: the management of cardiac involvement in muscular dystrophy and myotonic dystrophy. 7th-9th June 2002, Naarden, the Netherlands. Neuromuscular Disorders 2003, 13:166-172.
9. National Survey of Children's Health 2003 2003, http://www.nschdata.org, Human Resources and Services Administration, Rockville MD, [WWW document] URL accessed 11 January 2008
10. National Health Interview Survey 2004, Centers for Disease Control and Prevention, Atlanta
11. National Survey of Children with Special Health Care Needs 2005/2006 2006, http://www.cshcndata.org, Human Resources and Services Administration, Rockville MD, [WWW document] URL accessed 11 January 2008
12. Behavioral Risk Factor Surveillance System 2007 2007, http://www.cdc.gov/BRFSS/, Centers for Disease Control and Prevention, [WWW document] URL accessed 12 May 2008
13. Chen JY, Chen SS, Jong YJ, Yang YH, Chang YY. A comparison of the stress and coping strategies between the parents of children with Duchenne muscular dystrophy and children with a fever. Journal of Pediatric Nursing 2002, 17:369-379.
14. Daoud MA, Dooley JM, Gordon DK. Depression in parents of children with Duchenne muscular dystrophy. Pediatric Neurology 2004, 31:16-19.
15. DeNavas-Walt D, Proctor BD, Smith J. Income, Poverty, and Health Insurance Coverage in the United States: 2006 2007, U.S. Government Printing Office, Washington, D.C
16. Drentea P, Clay OJ, Roth DL, Mittelman MS. Predictors of improvement in social support: five-year effects of a structured intervention for caregivers of spouses with Alzheimer's disease. Social Science & Medicine 2006, 63:957-967.
17. Eaker ED. Social Support and Physical Health: Understanding the Health Consequences of Relationships 2004, Yale University Press, New Haven, CT
18. Erby LH, Rushton C, Geller G. " My son is still walking": stages of receptivity to discussions of advance care planning among parents of sons with Duchenne muscular dystrophy. Seminars in Pediatric Neurology 2006, 13:132-140.
19. Fitzpatrick C, Barry C. Cultural differences in family communication about Duchenne muscular dystrophy. Developmental Medicine and Child Neurology 1990, 32:967-973.
20. Gagliardi BA. The family's experience of living with a child with Duchenne muscular dystrophy. Applied Nursing Research 1991a, 4:159-164.
21. Gagliardi BA. The impact of Duchenne muscular dystrophy on families. Orthopedic Nursing 1991b, 10:41-49.
22. Green SE. ''We're tired, not sad'': benefits and burdens of mothering a child with a disability. Social Science & Medicine 2007, 64:150-163.
23. Hastings RP, Taunt HM. Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation 2002, 107:116-127.
24. James CA, Hadley DW, Holtzman NA, Winkelstein JA. How does the mode of inheritance of a genetic condition influence families? A study of guilt, blame, stigma, and understanding of inheritance and reproductive risks in families with X-linked and autosomal recessive diseases. Genetics in Medicine 2006, 8:234-242.
25. Your Stress Profile 1996, Form #1148, Memphis, Johnson & Johnson Health Care Systems, Inc, Unpublished questionnaire, used with permission
26. Klein RJ, Schoenborn CA. Age adjustment using the 2000 projected U.S. Population. Healthy People 2010 Statistical Notes 2001, 20:1-10.
27. Lazarus RS. Pyschological Stress and the Coping Process 1966, McGraw-Hill, New York
28. Miller JR. Family responses to Duchenne muscular dystrophy. Muscular Dystrophy and Other Neuromuscular Diseases: Psychological Issues 1991, Charash LI., Haworth Press, New York
29. Miller JR, Colbert AP, Osberg JS. Ventilator dependency: decision-making, daily functioning and quality of life for patients with Duchenne muscular dystrophy. Developmental Medicine and Child Neurology 1990, 32:1078-1086.
30. Nereo NE, Fee RJ, Hinton VJ. Parental stress in mothers of boys with Duchenne muscular dystrophy. Journal of Pediatric Psychology 2003, 28:473-484.
31. Living with Disability in New Zealand 2004, http://www.moh.govt.nz/moh.nsf/pagesmh/3532, [WWW document] URL accessed 21 January 2009
32. Newacheck PW, Strickland B, Shonkoff JP. An epidemiologic profile of children with special health care needs. Pediatrics 1998, 102:117-123.
33. The Health of Children and Young People http://www.statistics.gov.uk/children/, [WWW document] URL accessed 21 January 2009
34. O'Leary VE, Ickovics JR. Resilience and thriving in response to challenge: an opportunity for a paradigm shift in women's health. Women's Health 1995, 1:121-142.
35. Pleis JR, Benson V, Schiller JS. Summary health statistics for U.S. Adults: National Health Interview Survey, 2000. National Center for Health Statistics. Vital Health Statisitics 2003, 10:1-132.
36. Raina P, O'Donnell M, Schwellnus H. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Paediatrics 2004, 4:1.
37. Reid DT, Renwick RM. Relating familial stress to the psychosocial adjustment of adolescents with Duchenne muscular dystrophy. International Journal of Rehabilitative Research 2001, 24:83-93.
38. Richardson GE. The metatheory of resilience and resiliency. Journal of Clinical Psychology 2002, 58:307-321.
39. Richardson GE, Waite PJ. Mental health promotion through resilience and resiliency education. International Journal of Emerging Mental Health 2002, 4:65-75.
40. Scorgie K, Sobsey D. Transformational outcomes associated with parenting children who have disabilities. Mental Retardation 2000, 38:195-206.
41. Sinclair VG, Wallston KA. The development and psychometric evaluation of the Brief Resilient Coping Scale. Assessment 2004, 11:94-101.
42. Stein RE, Silver EJ. Comparing different definitions of chronic conditions in a national data set. Ambulatory Pediatrics 2002, 2:63-70.
43. Vaglio J, Conard M, Poston WS. Testing the performance of the ENRICHD Social Support Instrument in cardiac patients. Health and Quality of Life Outcomes 2004, 2:24.
44. Van Ommen GJ, Scheuerbrandt G. Neonatal screening for muscular dystrophy. Consensus recommendation of the 14th workshop sponsored by the European Neuromuscular Center (ENMC). Neuromuscular Disorders 1993, 3:231-239.
45. Webb CL. Parents' perspectives on coping with Duchenne muscular dystrophy. Child: Care, Health and Development 2005, 3:385-396.
46. Healthy People 2010: Volume I http://www.healthypeople.gov, second edition ed., US Department of Health and Human Services, [WWW document] URL accessed 11 January 2008