Individuals with Duchenne muscular dystrophy typically experience some of the most severe physical effects of this chronic, progressive disorder during their teenage years. This can impact significantly on their quality of life, particularly because they are simultaneously grappling with the complex, identity-related developmental tasks associated with this stage in life. In turn, these circumstances are very likely to affect the quality of life of their parents, who are also usually their care givers. To date, no attempt has been made to actually measure the quality of life of these parents, perhaps due in part to the lack of instruments designed to do this. Accordingly, this paper outlines the conceptual basis, the item generation process, and the content validation of a new instrument, the Life Satisfaction Index for Parents (LSI-P), developed to assess one aspect of quality of life, namely, life satisfaction, in this population. The results of a study examining construct, concurrent, and discriminant validity and internal consistency of the LSI-P are also presented. Potential applications of the instrument and future directions for research are discussed.
AdamsO. B. (1988). Health status. In RootmanI.WarrenR.StephensT., & PetersL. (Eds.), Canada's health promotion survey (Tech. Rep. No. H39–119/1988E). Ottawa: Health and Welfare Canada.
2.
American Psychological Association. (1985). Standards for educational and psychological testing. Washington, DC: Author.
3.
AnastasiA. (1988). Psychological testing (6th ed.) New York: MacMillan.
4.
ArfkenC.BrookeM. H.FenichelG. M.FlorenceJ.GilderB. F.KaiserK. K.KingW. M.MandelS.MendellJ. R.MillerJ. P.MoxleyR.PandyaS.RobinsonJ.SchierbeckerJ., & SignoreL. (1989). Duchenne muscular dystrophy: Patterns of clinical progression and effects of supportive therapy. Journal of Neurology, 39, 475–481.
5.
BonderB. R. (1989). Developing norm-referenced standardized tests: Planning the initial version. Physical and Occupational Therapy in Pediatrics, 9, 15–42.
6.
BuchananD. C.La BarberaC. J.RoelofsR., & OlsonW. (1979). Reactions of families to children with Duchenne muscular dystrophy. General Hospital Psychiatry, 1, 262–269.
7.
DienerE.EmmonsR. A.LarsenR. J., & GriffinS. (1985). The Satisfaction with Life Scale. Journal of Personality Assessment, 48, 71–75.
EriksonE. (1968). Identity: Youth and crisis. New York: Norton.
10.
FirthM.Gardner-MedwinD.HoskingG., & WilkinsonE. (1983). Interviews with parents of boys suffering from Duchenne muscular dystrophy. Developmental and Child Neurology, 25, 466–471.
11.
FlanaganJ. C. (1978). A research approach to improving our quality of life. American Psychologist, 34, 138–147.
12.
FlanaganJ. C. (1982). Measurement of quality of life: Current state of the art. Archives of Physical Medicine and Rehabilitation, 63, 56–59.
13.
FleissJ. L. (1981). Statistical methods for rates and proportions. New York: John Wiley & Sons.
14.
GoodeD. A. (1990). Thinking about and discussing quality of life. In SchalockR. L. (Ed.), Quality of life (pp. 41–57). Washington, DC: American Association on Mental Retardation.
15.
Health and Welfare Canada. (1986). Intervention guidelines for the client-centred practice of occupational therapy. Ottawa: Supply and Services Canada.
16.
HolroydJ. (1987). Questionnaire on Resources and Stress. Brandon, VT: Clinical Psychology Publishing.
17.
HolroydJ., & GuthrieD. (1986). Family stress with chronic childhood illness: Cystic fibrosis, neuromuscular disease, and renal disease. Journal of Clinical Psychology, 42, 552–561.
18.
JonesH. M. (1988). An instrument to measure coping in parents who have a child with Duchenne muscular dystrophy. Unpublished manuscript, University of Toronto, Department of Rehabilitation Medicine, Toronto.
19.
KaplanR. M. (1985). Quality-of-life measurement. In KarolyP. (Ed.), Measurement strategies in health psychology (pp. 115–146). Toronto: Wiley.
20.
LathamE. E.BresnanM. J., & SolleeN. L. (1983). Psychosocial issues in raising a child with Duchenne muscular dystrophy. In CharashL. I.WolfS. G.KutcherA. H.LovelaceR. E. & HaleM. S. (Eds.), Psychosocial aspects of muscular dystrophy and allied diseases (pp. 12–18). Springfield, IL: Charles C. Thomas.
21.
McDowellI., & NewellC. (1987). Measuring health: A guide to rating scales and questionnaires. New York: Oxford University Press.
22.
MenkesJ. H. (1985). Diseases of the motor unit. In MenkesJ. H. (Ed.), Textbook of child neurology (3rd ed.), (pp. 677–719). Philadelphia: Lea & Febiger.
23.
NeugartenB. L.HavighurstR. J., & TobinS. S. (1961). The measurement of life satisfaction. Journal of Gerontology, 16, 134–143.
24.
PavotW.DienerE.ColvinC. R., & SandvikE. (1991). Further validation of the Satisfaction With Life Scale: Evidence for the cross-method convergence of well-being measures. Journal of Personality Assessment, 57, 325–332.
25.
ReedK. L., & SandersonS. R. (1983). Concepts of occupational therapy. Baltimore, MD: Williams & Wilkins.
26.
RyanD. N. (1983). Group treatment and progressive muscular disorders: A summary of sessions with adolescents/young adults. In CharashL. I.WolfS. G.KutcherA. H.LovelaceR. E. & HaleM. S. (Eds.), Psychosocial aspects of muscular dystrophy and allied diseases (pp. 276–285). Springfield, IL: Charles C. Thomas.
27.
SAS Institute. (1987). SAS/STAT guide for personal computers (Version 6.0 ed.), Cary, NC: Author.
28.
SiegelM. I., & KornfieldM. S. (1983). Parent support group in the management of Duchenne muscular dystrophy: A combined medical and psychological approach. In CharashL. I.WolfS. G.KutcherA. H.LovelaceR. E. & HaleM. S. (Eds.), Psychosocial aspects of muscular dystrophy and allied diseases (pp. 262–275). Springfield, IL: Charles C. Thomas.
29.
SpilkerB. (1990). Introduction. In SpilkerB. (Ed.). Quality of life assessments in clinical trials (pp. 3–9). New York: Raven Press.
30.
WatermanA. (1982). Identity development from adolescence to adulthood: An extension of theory and a review of research. Developmental Psychology, 18, 341–358.
