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A Randomized Clinical Trial of the Building on Family Strengths Program: An Education Program for Parents of Children with Chronic Health Conditions

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Abstract

To test the 6-month efficacy of an inclusive non-diagnosis-specific, 7-session parent education curriculum on five pre-specified outcomes. A randomized clinical trial with 100 parents having children 2–11 years with a variety of chronic conditions was conducted. The 7-session curriculum, Building on Family Strengths (BFS), was created by an interdisciplinary pediatric team as a derivative of a successful adult chronic disease self-Management program distributed by Stanford University Patient and Education Research Center. Despite no differences at baseline, intervention participants had higher scores on self-efficacy to manage the child’s condition (p = 0.049), coping with childhood chronic illness (p < 0.001), parent–child shared management of the condition (p = 0.097), family quality of life (p = 0.010), and, lower scores on a measure of depressive symptoms (p = 0.046) at the 6-month end-point. Average effect-sizes were modest across outcomes (7–11 % improvement) with intervention participants having baseline scores in the least favorable quartile improving the most (12–41 %). This research provides evidence that the BFS curriculum can yield significant improvements across five important outcomes for parents of children with various chronic conditions. Parent education programs should be offered especially to parents of children with chronic health conditions, regardless of the type of condition, who lack adequate support. These programs can help parents cope with and manage their children’s chronic conditions more effectively.

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Abbreviations

CSHCN:

Children with special health care needs

NS-CSHCN:

National Survey of Children with Special Health Care Needs

BFS:

Building on Family Strengths Curriculum

CDSMP:

Chronic Disease Self-Management Program

References

  1. Perrin, E. C., Lewkowicz, C., & Young, M. H. (2000). Shared vision: concordance among fathers, mothers, and pediatricians about unmet needs of children with chronic health conditions. Pediatrics, 105(1 Pt 3), 277–285.

    CAS  PubMed  Google Scholar 

  2. Bauman, L. J., Drotar, D., Leventhal, J. M., Perrin, E. C., & Pless, I. B. (1997). A review of psychosocial interventions for children with chronic health conditions. Pediatrics, 100(2 Pt 1), 244–251.

    Article  CAS  PubMed  Google Scholar 

  3. Perrin, E. C., Newacheck, P., Pless, I. B., Drotar, D., Gortmaker, S. L., Leventhal, J., et al. (1993). Issues involved in the definition and classification of chronic health conditions. Pediatrics, 91(4), 787–793.

    CAS  PubMed  Google Scholar 

  4. Stein, R. E., & Jessop, D. J. (1982). A noncategorical approach to chronic childhood illness. Public Health Reports, 97(4), 354–362.

    CAS  PubMed Central  PubMed  Google Scholar 

  5. McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., et al. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 Pt 1), 137–140.

    Article  CAS  PubMed  Google Scholar 

  6. McPherson, M., Weissman, G., Strickland, B. B., van Dyck, P. C., Blumberg, S. J., & Newacheck, P. W. (2004). Implementing community-based systems of services for children and youths with special health care needs: how well are we doing? Pediatrics, 113(5 Suppl), 1538–1544.

    PubMed  Google Scholar 

  7. Bethell, C. D., Read, D., & Brockwood, K. (2004). Using existing population-based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics, 113(5 Suppl), 1529–1537.

    PubMed  Google Scholar 

  8. McMenamy, J. M., & Perrin, E. C. (2004). Filling the GAPS: Description and evaluation of a primary care intervention for children with chronic health conditions. Ambulatory Pediatrics, 4(3), 249–256.

    Article  PubMed  Google Scholar 

  9. Spears, A. P. (2010). The healthy people 2010 outcomes for the care of children with special health care needs: An effective national policy for meeting mental health care needs? Maternal and Child Health Journal, 14(3), 401–411.

    Google Scholar 

  10. Farmer, J. E., Clark, M. J., Sherman, A., Marien, W. E., & Selva, T. J. (2005). Comprehensive primary care for children with special health care needs in rural areas. Pediatrics, 116(3), 649–656.

    Article  PubMed  Google Scholar 

  11. Halfon, N., Houtrow, A., Larson, K., & Newacheck, P. W. (2012). The changing landscape of disability in childhood. Future of Children, 22(1), 13–42.

    Article  PubMed  Google Scholar 

  12. Duncan, C. L., Hogan, M. B., Tien, K. J., Graves, M. M., Chorney, J. M., & Zettler, M. D., et al. (2012). Efficacy of a parent-youth teamwork intervention to promote adherence in pediatric asthma. Journal of Pediatric Psychology [Epub ahead of print].

  13. Bruce, B., Lorig, K., & Laurent, D. (2007). Participation in patient self-management programs. Arthritis and Rheumatism, 57(5), 851–854.

    Article  PubMed  Google Scholar 

  14. Helmer, D., & Stenzel, I. (2000). Families living well with childhood chronic illness. Palo Alto, CA: Stanford University.

    Google Scholar 

  15. Osborne, R. H., Wilson, T., Lorig, K. R., & McColl, G. J. (2007). Does self-management lead to sustainable health benefits in people with arthritis? A 2-year transition study of 452 Australians. Journal of Rheumatology, 34(5), 1112–1117.

    PubMed  Google Scholar 

  16. Uding, N., Kieckhefer, G. M., & Trahms, C. M. (2009). Parent and community participation in program design. Clinical Nursing Research, 18(1), 68–79. (Epub 2009/02/12).

    Article  PubMed  Google Scholar 

  17. Blanchard, L. T., Gurka, M. J., & Blackman, J. A. (2006). Emotional, developmental, and behavioral health of American children and their families: A report from the 2003 National Survey of Children’s Health. Pediatrics, 117(6), e1202–e1212.

    Article  PubMed  Google Scholar 

  18. Hatzmann, J., Heymans, H. S., Ferrer-i-Carbonell, A., van Praag, B. M., & Grootenhuis, M. A. (2008). Hidden consequences of success in pediatrics: parental health-related quality of life—results from the Care Project. Pediatrics, 122(5), e1030–e1038. (Epub 2008/10/15).

    Article  PubMed  Google Scholar 

  19. Holmes, A., & Deb, P. (2003). The effects of chronic illness on the psychological health of family members. Journal of Mental Health Policy and Economics, 6(1), 13–22.

    PubMed  Google Scholar 

  20. Jones, T. L., & Prinz, R. J. (2005). Potential roles of parental self-efficacy in parent and child adjustment: A review. Clinical Psychology Review, 25(3), 341–363.

    Article  PubMed  Google Scholar 

  21. Silver, E. J., Heneghan, A. M., Bauman, L. J., & Stein, R. E. (2006). The relationship of depressive symptoms to parenting competence and social support in inner-city mothers of young children. Maternal and Child Health Journal, 10(1), 105–112.

    Article  PubMed  Google Scholar 

  22. van den Akker, M., Buntinx, F., Metsemakers, J. F., Roos, S., & Knottnerus, J. A. (1998). Multimorbidity in general practice: prevalence, incidence, and determinants of co-occurring chronic and recurrent diseases. Journal of Clinical Epidemiology, 51(5), 367–375.

    Article  PubMed  Google Scholar 

  23. Child and Adolescent Health Measurement Initiative. (2000–2001). National Survey of Children with Special Health Care Needs, Data Resource Center on Child and Adolescent Health website. Data Resource Center on Child and Adolescent Health website; 2005 [cited 2006 September 6]; Available from http://cshcndata.org/ViewDocument.aspx?item=67.

  24. Lorig, K., Stewart, A., Ritter, P., Gonzales, V., Laurent, D., & Lynch, J. (1996). Outcome measures for health education and other health care interventions (p. 109). Thousand Oaks, CA: Sage Publications.

    Google Scholar 

  25. McQuaid, E., Penza-Clyve, S., Nassau, J., Fritz, G., Klein, R., O’Connor, S., et al. (2001). The asthma responsibility Questionnaire: Patterns of family responsibility for asthma management. Children’s Health Care, 30(3), 183–199.

    Article  Google Scholar 

  26. McCubbin, H., & Thompson, A. (1991). Family assessment inventories for research and practice. Madison, WI: University of Wisconsin System.

    Google Scholar 

  27. Andresen, E. M., Malmgren, J. A., Carter, W. B., & Patrick, D. L. (1994). Screening for depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale). American Journal of Preventive Medicine, 10(2), 77–84.

    CAS  PubMed  Google Scholar 

  28. Radloff, L. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.

    Article  Google Scholar 

  29. Stein, R. E., & Jessop, D. J. (1985). Tables documenting the psychometric properties of a measure of the impact of chronic illness on a family (PACTS Papers/AECOM). Bronx, NY: Albert Einstein College of Medicine.

    Google Scholar 

  30. Bandura, A. (2004). Health promotion by social cognitive means. Health Education and Behavior, 31(2), 143–164.

    Article  PubMed  Google Scholar 

  31. Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, 19(5), 251–260.

    Article  PubMed  Google Scholar 

  32. Stein, R. E., & Riessman, C. K. (1980). The development of an impact-on-family scale: preliminary findings. Medical Care, 18(4), 465–472.

    Article  CAS  PubMed  Google Scholar 

  33. Melnyk, B. M., Alpert-Gillis, L., Feinstein, N. F., Crean, H. F., Johnson, J., Fairbanks, E., et al. (2004). Creating opportunities for parent empowerment: Program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics, 113(6), e597–e607.

    Article  PubMed  Google Scholar 

  34. Fergusson, D. M., Grant, H., Horwood, L. J., & Ridder, E. M. (2005). Randomized trial of the early start program of home visitation. Pediatrics, 116(6), e803–e809.

    Article  PubMed  Google Scholar 

  35. Olds, D. L., Eckenrode, J., Henderson, C. R., Jr., Kitzman, H., Powers, J., Cole, R., et al. (1997). Long-term effects of home visitation on maternal life course and child abuse and neglect. Fifteen-year follow-up of a randomized trial. JAMA, 278(8), 637–643.

    Article  CAS  PubMed  Google Scholar 

  36. Woodman, A. C., & Hauser-Cram, P. (2012). The role of coping strategies in predicting change in parenting efficacy and depressive symptoms among mothers of adolescents with developmental disabilities. Journal of Intellectual Disability Research. doi:10.1111/j.1365-2788.2012.01555.x.

  37. Butz, A. M., Tsoukleris, M. G., Donithan, M., Hsu, V. D., Zuckerman, I., Mudd, K. E., et al. (2006). Effectiveness of nebulizer use-targeted asthma education on underserved children with asthma. Archives of Pediatrics and Adolescent Medicine, 160(6), 622–628.

    Article  PubMed Central  PubMed  Google Scholar 

  38. Karnick, P., Margellos-Anast, H., Seals, G., Whitman, S., Aljadeff, G., & Johnson, D. (2007). The pediatric asthma intervention: a comprehensive cost-effective approach to asthma management in a disadvantaged inner-city community. Journal of Asthma, 44(1), 39–44.

    Article  PubMed  Google Scholar 

  39. Robertson, W., Friede, T., Blissett, J., Rudolf, M. C., Wallis, M. A., & Stewart-Brown, S. (2008). Pilot of ‘Families for Health’: Community-based family intervention for obesity. Archives of Disease in Childhood, 93(11), 921–926.

    Google Scholar 

  40. Golley, R. K., Magarey, A. M., Baur, L. A., Steinbeck, K. S., & Daniels, L. A. (2007). Twelve-month effectiveness of a parent-led, family-focused weight-management program for prepubertal children: A randomized, controlled trial. Pediatrics, 119(3), 517–525.

    Article  PubMed  Google Scholar 

  41. Center for Children with Special Needs. (2008). What helps you? Parents share ideas and strategies for managing their child’s special health care needs. Center for Children with Special Needs website; June 27, 2008. Available from www.cshcn.org/resources/whathelps.

  42. Schor, E. L. (2003). Family pediatrics: Report of the task force on the family. Pediatrics, 111(6 Pt 2), 1541–1571.

    PubMed  Google Scholar 

  43. Barlow, J., Smailagic, N., Ferriter, M., Bennett, C., & Jones, H. (2010). Group-based parent-training programmes for improving emotional and behavioural adjustment in children from birth to three years old. Cochrane Database Systematic Review, 3, CD003680. (Epub 2010/03/20).

    Google Scholar 

  44. Lorig, K. R., Ritter, P. L., Laurent, D. D., & Plant, K. (2006). Internet-based chronic disease self-management: a randomized trial. Medical Care, 44(11), 964–971. (Epub 2006/10/26).

    Article  PubMed  Google Scholar 

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Acknowledgments

This research was supported by the Agency for Health Care Research and Quality (HS013384, Kieckhefer, PI) and registered on clincaltrials.gov # NCT0019458. The authors wish to acknowledge the assistance of Elizabeth Bennett, Megan Sety, Virginia Sharp, Lawrie Williams and Carol Andersen in design of the Building on Family Strength Curriculum and evaluation plan and all the parents who helped refine the curriculum, co-facilitated the classes and participated in the research. We also acknowledge the assistance of Terry Monaghan and Patty Centioli in the preparation of the manuscript. We thank Kate Lorig for encouraging us to create the parent focused derivative program and serving as consultant on the project. We also thank Diane Helmer and Elizabeth Stenzel for sharing their original pilot work of an earlier derivative program. The 7-session Building on Family Strengths Curriculum derivative is available from K Lorig, RN, Dr PH, Stanford University Patient Education Research Center, Palo Alto California 94304 and the Agency for Health Research and Quality, (final report of this research project: HS # 013384), for use in accordance with 45 CFR Part 74.36 and Public Law 96-517.

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Authors and Affiliations

  1. School of Nursing, University of Washington, Box 357260, Seattle, WA, 98195, USA

    Gail M. Kieckhefer, Cristine M. Trahms & Shervin S. Churchill

  2. Seattle Children′s Hospital, 4800 Sand Point Way NE, Seattle, WA, 98105, USA

    Lyn Kratz, Nancy Uding & Nanci Villareale

Authors
  1. Gail M. Kieckhefer
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  2. Cristine M. Trahms
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  3. Shervin S. Churchill
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  4. Lyn Kratz
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  5. Nancy Uding
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  6. Nanci Villareale
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Correspondence to Shervin S. Churchill.

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Kieckhefer, G.M., Trahms, C.M., Churchill, S.S. et al. A Randomized Clinical Trial of the Building on Family Strengths Program: An Education Program for Parents of Children with Chronic Health Conditions. Matern Child Health J 18, 563–574 (2014). https://doi.org/10.1007/s10995-013-1273-2

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