Family function in families of children with Duchenne muscular dystrophy

Family and Community Health

Volumn 30, Issue 4, 2007, Pages 296-304

  Chen, Jih Yuan ^a   Clark, Mary Jo ^b  

^a KAOHSIUNG MEDICAL UNIVERSITY   (Taiwan)

^b UNIVERSITY OF SAN DIEGO   (United States)

Author keywords

Caregiver health; Duchenne muscular dystrophy; Family functioning; Family hardiness; Family support

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGE; ARTICLE; CAREGIVER; CHILD; COST OF ILLNESS; CROSS-SECTIONAL STUDY; DUCHENNE MUSCULAR DYSTROPHY; ECONOMICS; FAMILY HEALTH; FAMILY RELATION; FEMALE; HANDICAPPED CHILD; HUMAN; MALE; MENTAL STRESS; MIDDLE AGED; PARENT; PATHOPHYSIOLOGY; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; SICKNESS IMPACT PROFILE; SOCIAL SUPPORT; SOCIOECONOMICS; TAIWAN;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGE FACTORS; CAREGIVERS; CHILD; CHILD, PRESCHOOL; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; DISABLED CHILDREN; FAMILY HEALTH; FAMILY RELATIONS; FEMALE; HUMANS; MALE; MIDDLE AGED; MUSCULAR DYSTROPHY, DUCHENNE; PARENTS; QUESTIONNAIRES; SICKNESS IMPACT PROFILE; SOCIAL SUPPORT; SOCIOECONOMIC FACTORS; STRESS, PSYCHOLOGICAL; TAIWAN;

EID: 34548669613     PISSN: 01606379     EISSN: None     Source Type: Journal    
DOI: 10.1097/01.FCH.0000290542.10458.f8     Document Type: Article

References (31)

1. Meleski DD. Families with chronically ill children. The American Journal of Nursing, 2002;102(5):4754.
2. Wang KWK, Barnard A. Technology-dependent children and their families: a review. Journal of Advanced Nursing. 2004;45:36-46.
3. Plese NK. A profile of caregiving in America. The Pfizer Journal. 1997;1(3):1-40.
4. Stewart DR. Medical encyclopedia: Duchenne muscular dystrophy. Available at: http://www.nlm. nih.gov/medlineplus/print/ency/article/000705.htm. Accessed September 9, 2005.
5. Talkop UA, Kahre T, Napa A, et al. A descriptive epidemiological study of Duchenne muscular dystrophy in childhood in Estonia. European Journal of Paediatric Neurology. 2003;7(5):221-226.
6. Laing NG. Molecular genetics and genetic counseling for Duchenne/Becker muscular dystrophy. In: Patrldge T, ed. Molecular and Cell Biology of Muscular Dystrophy. London: Chapman & Hall; 1993:3784.
7. Muscular Dystrophy Association. Facts about Duchenne and Becker muscular dystrophies (DMD and BMD). Available at: http://www.mdausa.org/ publications/fa-dmdbmd-what.html. Accessed September 9, 2005.
8. Muscular Dystrophy Association. Duchenne muscular dystrophy. Available at: http://www.mdausa. org/disease/dmd.html. Accessed September 9, 2005.
9. Metules T. A new age for childhood diseases: Duchenne muscular dystrophy. RN; National Magazine for Nursing. 2002;65(10):39-44, 47-48.
10. McGriff SE. Learning to live with neuromuscular disease. Available at: http://www.mdausa.org/ publications/learning/neuro.html. Accessed September 9, 2005.
11. McCubbin MA, McCubbin HI. Families coping with illness: the resiliency model of family stress, adjustment, and adaptation. In: Danielson CB, Hamel-Bissell B, Winstead-Fry P, eds. Families, Health, & Illness: Perspectives on Coping and Intervention. St. Louis: Mosby; 1993:21-63.
12. Van Riper M. Family variables associated with wellbeing in siblings of children with Down syndrome. Journal of Family Nursing. 2000;6:267-286.
13. McCubbin HI, Thompson AI, McCubbin MA. Family Measures: Stress, Coping, and Resiliency-Inventories for Research and Practice. Honolulu, Hawaii: Kamehameha Schools; 2001.
14. Chen JY, Chen SS, Jong YJ, Yang YH, Lue YJ. Psychosocial stress and coping strategies of parents with Duchenne muscular dystrophy children during the middle stage. Paper presented at: 36th Annual Communicating Nursing Research Conference & 17th Annual WIN Assembly; April 10-12, 2003; Scottsdale, Ariz.
15. Buchanan D, LaBarbera C, Roelofs R, Olson W. Reactions of families to children with Duchenne muscular dystrophy. General Hospital Psychiatry. 1979;1(3):262-269.
16. Nereo NE, Fee RJ, Hinten VJ. Parental stress in mothers of boys with Duchenne muscular dystrophy. Journal of Pediatric Psychology. 2003;28:473-484.
17. Svavarsdottir EK. Caring for a child with cancer: a longitudinal perspective. Journal of Advanced Nursing. 2005(50):153-161.
18. Thompson RJJr, Zeman JL, Fanurik D, Sirotkin-Roses M. The role of parent stress and coping and family functioning in parent and child adjustment to Duchenne muscular dystrophy. Journal of Clinical Psychology. 1992;48:11-19.
19. Holroyd J, Guthrie D. Family stress with chronic childhood illness: cystic fibrosis, neuromuscular disease, and renal disease. Journal of Clinical Psychology. 1986;42(4):552-561.
20. Margalit M, Raviv A, Ankonina DB. Coping and coherence among parents with disabled children. Journal of Clinical Child Psychology. 1992;21:202209.
21. Mu PF. Paternal reactions to a child with epilepsy: uncertainty, coping strategies, and depression. Journal of Advanced Nursing. 2005;49(4):367-376.
22. Patterson JM. Promoting resilience in families experiencing stress. Pediatric Clinics of North America. 1995;42(1):47-63.
23. Svavarsdottir EK, Rayens MK. Hardiness in families of young children with asthma. Journal of Advanced Nursing. 2005;50:381-390.
24. Olsen SF, Marshall ES, Mandleco BL, Allred KW, Dyches TT, Sansom N. Support, communication, and hardiness in families with children with disabilities. Journal of Family Nursing. 1999;5:275-291.
25. Failla S, Jones LC. Families of children with developmental disabilities: an examination of family hardiness. Research in Nursing & Health. 1991;14:4150.
26. Mahoney FI, Barthel DW. Functional evaluation: the Barthel Index. Maryland State Medical Journal. 1965;14:56-61.
27. Parkerson GR Jr, ed. User's Guide for Duke Health Measures. Durham, NC: Department of Community and Family Medicine, Duke University Medical Center; 2002.
28. Smilkstein G. The Family APGAR: a proposal for a family function test and its use by physicians. The Journal of Family Practice. 1978;6:1231-1239.
29. Epstein NB, Baldwin LM, Bishop DS. The McMaster Family Assessment Device. Journal of Marital and Family Therapy. 1983;9:171-180.
30. Sawin KJ, Harrlgan MP Measures of Family Functioning for Research and Practice. New York: Springer; 1995.
31. Glantz SA, Slinker BK. Primer of Applied Regression and Analysis of Variance. New York: McGraw-Hill; 1990.