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Testing the Family Health Promotion Model for Family Having Children with Duchenne Muscular Dystrophy/Spinal Muscular Atrophy

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Abstract

The global role of action of family health promotion in all aspects of family health behavior, family health capacity, and family health status has received inadequate empirical examination relative to its potential significance, notably within a causal model pathway. The purposes of the study were to determine whether family health capacity and family health status maintain internal and external dimensions that influence family health behavior/family health status and analyze the predictive factor influence on major variables in the theoretical model of family health promotion. Analyses were conducted on data derived from 86 families that were affected by Duchenne muscular dystrophy (DMD) or spinal muscular atrophy (SMA). The participants (113; mean age, 42.68 years) including parents, siblings, patients, and caregivers completed self-reported questionnaires. Family support and family hardiness were the mediators on family general health, family general function, and family health behavior. Family support produced a mediator effect on general family function through the power to propose ideas/plans. However, general family health produced a mediator effect on general family function through geography, family support, and family hardiness, as well as a mediator effect on family health behavior through family support and family hardiness, and represented by family monthly income. Families were important sources of interpersonal influence that could increase or decrease commitment, challenge, or control to health promotion behavior.

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References

  • Acheson, L. S., Wang, C., Zyzanski, S. J., Lynn, A., Ruffin, M. T., Gramling, R., et al. (2010). Family history and perceptions about risk and prevention for chronic diseases in primary care: a report from the family healthcare impact trial. Genetics in Medicine, 12(4), 212–218. https://doi.org/10.1097/GIM.0b013e3181d56ae6.

    Article  PubMed  PubMed Central  Google Scholar 

  • Aggarwal, B., Liao, M., Allegrante, J. P., & Mosca, L. (2010). Low social support level is associated with non-adherence to diet at 1 year in the Family Intervention Trial for Heart Health (FIT Heart). Journal of Nutrition Education and Behavior, 42(6), 380–388. https://doi.org/10.1016/j.jneb.2009.08.006.

    Article  PubMed  PubMed Central  Google Scholar 

  • Barnes, M., Courtney, M. D., Pratt, J., & Walsh, A. M. (2004). School-based youth health nurses: roles, responsibilities, challenges, and rewards. Public Health Nursing, 21(4), 316–318.

    Article  Google Scholar 

  • Biggar, W. D. (2006). Duchenne muscular dystrophy. Pediatrics in Review, 27(3), 83–88.

    Article  Google Scholar 

  • Billard, C., Gillet, P., Signoret, J. L., Uicaut, E., Bertrand, P., Fardeau, M., et al. (1992). Cognitive functions in Duchenne muscular dystrophy: a reappraisal and comparison with spinal muscular atrophy. Neuromuscular Disorders, 2(5–6), 371–378. https://doi.org/10.1016/S0960-8966(06)80008-8.

    Article  PubMed  Google Scholar 

  • Brolin, C., & Shiraishi, T. (2011). Antisense mediated exon skipping therapy for Duchenne muscular dystrophy (DMD). Artifcial DNA PNA XNA, 2(1), 6–15. https://doi.org/10.4161/adna.2.1.15425.

    Article  Google Scholar 

  • Chan, C. W., & Perry, L. (2012). Lifestyle health promotion interventions for the nursing workforce: a systematic review. Journal of Clinical Nursing, 21(15–16), 2247–2261. https://doi.org/10.1111/j.1365-2702.2012.04213.x.

    Article  PubMed  Google Scholar 

  • Chen, J. Y. (2008). Mediators affecting family functioning in families of children with Duchenne muscular dystrophy. Kaohsiung Journal of Medical Sciences, 24(10), 514–522.

    Article  Google Scholar 

  • Chen, J. Y., & Clark, M. J. (2007). Family function in families of children with Duchenne muscular dystrophy. Family and Community Health, 30(4), 296–304. https://doi.org/10.1097/01.FCH.0000290542.10458.f8.

    Article  PubMed  Google Scholar 

  • Chen, J. Y., & Clark, M. J. (2010). Family resources and parental health in families of children with Duchenne muscular dystrophy. Journal of Nursing Research, 18(4), 239–248. https://doi.org/10.1097/JNR.0b013e3181fbe37b.

    Article  PubMed  Google Scholar 

  • Chen, J. Y., & Jong, Y. J. (2006). A stress model for parents of children with Duchenne muscular dystrophy. The Journal of Nursing (Chinese), 53(3), 44–51.

    Google Scholar 

  • Chen, M. Y., Wang, E. K., & Chang, C. J. (2006). Cross-validation and discriminant validity of adolescent health promotion scale among overweight and nonoverweight adolescents in Taiwan. Public Health Nursing, 23(6), 555–560. https://doi.org/10.1111/j.1525-1446.2006.00596.x.

    Article  PubMed  Google Scholar 

  • Chen, J.Y., Chen, S.S., Jong, Y.J., Yang, Y.H., & Lue, Y.J. (2013a). Psychosocial stress and coping strategies of parents with Duchenne muscular dystrophy children during the middle stage. In C. Angelini (Ed.), Muscular dystrophy: causes and management (pp. 339–356). New York Nova.

  • Chen, Y. H., Lin, Y. H., Hung, C. S., Huang, C. C., Yeih, D. F., Chuang, P. Y., et al. (2013b). Clinical outcome and cost-effectiveness of a synchronous telehealth service for seniors and nonseniors with cardiovascular diseases: quasi-experimental study. Journal of Medical Internet Research, 15(4), e87. https://doi.org/10.2196/jmir.2091.

    Article  PubMed  PubMed Central  Google Scholar 

  • Chen, J. Y., Yen, M. H., Chen, H. S., Liu, Y. Y., Hu, S. H., Liu, M. C., et al. (2013c). Health support: health promotion for family having a child with DMD. In C. Angelini (Ed.), Muscular dystrophy: causes and management (pp. 319–337). New York: Nova.

    Google Scholar 

  • Chen, J.Y., Chao, M.C., Yang, S.Y., Xiao, Y.H., & Lin, Y.H. (2014a). Family resources and family health perspectives of children with turner syndrome and their parents 8th ICN INP/APNN Conference: advanced nursing practice: expending access and improving healthcare outcome. Helsinki, Finland.

  • Chen, J. Y., Clark, M. J., Chang, Y. Y., Liu, Y. Y., & Chang, C. Y. (2014b). Factors affecting perceptions of family function in caregivers of children with attention deficit hyperactivity disorders. The Journal of Nursing Research, 22(3), 165–175. https://doi.org/10.1097/jnr.0000000000000042.

    Article  PubMed  Google Scholar 

  • Chen, J. Y., Chen, H. S., Liu, M. C., & Chao, M. C. (2015). Relationship between families perception of health and support in the care of vulnerable children. Clinics Mother Child Health, 12(3), 1–9. https://doi.org/10.4172/2090-7214.1000189.

    Article  Google Scholar 

  • Chen, J. Y., Yen, M. H., Lin, Y. H., Hu, S. H., Chen, H. S., Liu, M. C., et al. (2017). Preliminary process of developing multiple programs for promoting family health with a vulnerable child. Acta Psychopathologica, 3(1:3), 1–7. https://doi.org/10.4172/2469-6676.100075.

    Article  Google Scholar 

  • Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster Family Assessment Device. Journal of Marital and Family Therapy, 9, 171–180.

    Article  Google Scholar 

  • Faul, F., Erdfelder, E., Lang, A. G., & Buchner, A. (2007). G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behavior Research Methods, 39, 175–191.

    Article  Google Scholar 

  • Faul, F., Erdfelder, E., Buchner, A., & Lang, A. G. (2009). Statistical power analyses using G*Power 3.1: tests for correlation and regression analyses. Behavior Research Methods, 41, 1149–1160.

    Article  Google Scholar 

  • Ford-Gilboe, M. (1997). Family strengths, motivation, and resources as predictors of health promotion behavior in single-parent and two-parent families. Research in Nursing and Health, 20, 205–217.

    Article  Google Scholar 

  • Ford-Gilboe, M. (2002). Developing knowledge about family health promotion by testing the developmental model of health and nursing. Journal of Family Nursing Research, 8(2), 140–156.

    Article  Google Scholar 

  • Grant, K., McCormick, A., Poindexter, L., Simpkins, T., Janda, C., Thomas, K., et al. (2005). Exposure to violence and parenting as mediators between poverty and psychological symptoms in urban African American adolescents. Journal of Adolescence, 28(4), 507–521.

    Article  Google Scholar 

  • Hacer, S., Fevziye, C., & Melis, N. (2012). Healthy lifestyle promoting behavior in Turkish women aged 18-64. Asian Pacific Journal Cancer Preview, 13, 1241–1245. https://doi.org/10.7314/APJCP.2012.13.4.1241.

    Article  Google Scholar 

  • Kaakinen, J.R., Gedaly-Duff, V., Coehlo, D.P., & Hanson, S.M.H. (2010). Family health care nursing: theory, practice and research (4th ed.). Philadelpia: F. A. Davis.

  • Kliegman, R.M., Behrman, R.E., Jenson, H.B., & Stanton, B.F. (2007). Muscular dystrophies. In R.M. Kliegman, R.E. Behrman, H.B. Jenson & B.F. Stanton (Eds.), Nelson textbook of pediatrics (pp. 608). Philadelphia: Saunders Elsevier.

  • Kostova, F. V., Williams, V. C., Heemskerk, J., Iannaccone, S., DiDonato, C., Swoboda, K., et al. (2007). Spinal muscular atrophy: classification, diagnosis, management, pathogenesis, and future research directions. Journal of Child Neurology., 22(8), 926–945. https://doi.org/10.1177/0883073807305662.

    Article  PubMed  Google Scholar 

  • Kuo, S. C. (1994). Change in family functioning during perinatal period in high-risk pregnancy with preterm labor pattern [Chinese]. Nursing Research (China), 2(2), 106–115.

    Google Scholar 

  • Loveland-Cherry, C.J., & Bomar, P.J. (2004). Family health promotion and health protection. In P.J. Bomar (Ed.), Promoting health in families (3rd ed.). Philadephia: Saunders.

  • Martin, P., Duffy, T., Johnston, B., Banks, P., Harkess-Murphy, E., & Martin, C. R. (2013). Family health nursing: a response to the global health challenges. Journal of Family Nursing, 19(1), 99–118. https://doi.org/10.1177/1074840712471810.

    Article  PubMed  Google Scholar 

  • McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (2001). Family measures: stress, coping, and resiliency—inventories for research and practice. Honolulu: Kamehameha Schools.

    Google Scholar 

  • Mejia, A., Calam, R., & Sanders, M. R. (2012). A review of parenting programs in developing countries: opportunities and challenges for preventing emotional and behavioral difficulties in children. Clinical Child Family Psychological Review, 15, 163–175. https://doi.org/10.1007/s10567-012-0116-9.

    Article  Google Scholar 

  • Parkerson, G. R. J. (2002). User’s guide for Duke Health Measures. Durham: Department of community and family Medicine, Duke University Medical Center.

    Google Scholar 

  • Parkerson, G. R. J., Broadhead, W. E., & Tse, C. K. (1990). The Duke health profile: a 17-item measure of health and dysfunction. Medical Care, 28, 1056–1072.

    Article  Google Scholar 

  • Pirincci, E., Rahman, S., Durmus, A. B., & Erdem, R. (2008). Factors affecting health-promoting behaviors in academic staff. Public Health Nursing, 122, 1261–1263. https://doi.org/10.1016/j.puhe.2008.04.006.

    Article  Google Scholar 

  • Smilkstein, G. (1978). The Family APGAR: a proposal for a family function test and its use by physicians. Journal of Family Practice, 6(6), 1231–1239.

    PubMed  Google Scholar 

  • Smilkstein, G., Ashworth, C., & Montano, D. (1982). Validity and reliability of the Family APGAR as a test of family function. Journal of Family Practice, 15, 303–311.

    PubMed  Google Scholar 

  • Soubhi, H., Potvin, L., & Paradis, G. (2004). Family process and parent's leisure time physical activity. American Journal of Health Behavior, 28(3), 218–230.

    Article  Google Scholar 

  • Srof, B. J., & Velsor-Friedrich, B. (2006). Health promotion in adolescents: a review of Pender’s health promotion model. Nurisng Science Quarterly, 19(4), 366–373. https://doi.org/10.1177/0894318406292831.

    Article  Google Scholar 

  • Wang, C. H., Finkel, R. S., Bertini, E. S., Schroth, M., Simonds, A., Wong, B., et al. (2007). Consensus statement for standard of care in spinal muscular atrophy. Journal of Child Neurology, 22(8), 1027–1049. https://doi.org/10.1177/0883073807305788.

    Article  PubMed  Google Scholar 

  • WHO Regional Office for Europe. (1999). HEALTH 21: the health for all policy framework for the WHO European Region. Copenhagen, Denmark: World Health Organization.

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Acknowledgements

We would like to thank the families of the children with DMD and SMA for their contribution to the completion of this research. MCL was supported by a holistic care award from Kaohsiung Medical University Hospital, and JYC was supported by Kaohsiung Medical University grant utilizing aggregate data from a three-different-type-disease-study.

Funding

The work was funded by grant KMUH- N10004 and KMU-M104024.

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Authors and Affiliations

  1. College of Nursing, School of Nursing, Kaohsiung Medical University, 100, Shih-Chuan 1st Rd., Kaohsiung, ROC, 80761, Taiwan, Republic of China

    Jih-Y. Chen

  2. Department of Medical Research, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung, Taiwan, Republic of China

    Jih-Y. Chen

  3. College of Pharmacy, School of Pharmacy, Kaohsiung Medical University, Kaohsiung, Taiwan

    Ming-H. Yen

  4. Department of Nursing, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung, Taiwan

    Ying-H. Lin & Meng-C. Liu

  5. Department of Oral Hygiene, College of Dental Medicine, Kaohsiung Medical University, Kaohsiung, Taiwan

    Hong-S. Chen

  6. Department of Medical Laboratory Science and Biotechnology, Kaohsiung Medical University, Kaohsiung, Taiwan

    Shu-H. Hu

  7. Nutrient, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung, Taiwan

    Shu-H. Hu

  8. Department of Nursing, Yuan’s General Hospital, Taiwan, ROC, 80249, Republic of China

    Yea-Y. Liu

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  1. Jih-Y. Chen
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Correspondence to Jih-Y. Chen.

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Conflict of Interest

MCL was supported by a holistic care award from Kaohsiung Medical University Hospital and JYC was supported by Kaohsiung Medical University grant utilizing aggregate data from a three-different-type-disease-study. JYC has received a speaker’s honorarium from Kaohsiung Medical University. The authors declare no competing interest.

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Details regarding the information brochure and informed consent were approved by the KMUH IRB board (KMUH-IRB-20110397). All subjects gave informed consent and patient anonymity should be preserved.

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Chen, JY., Yen, MH., Lin, YH. et al. Testing the Family Health Promotion Model for Family Having Children with Duchenne Muscular Dystrophy/Spinal Muscular Atrophy. Adv Neurodev Disord 2, 391–401 (2018). https://doi.org/10.1007/s41252-018-0067-3

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