Top

Gepubliceerd in:

25-06-2016 | Original Paper

A Therapeutic Recreation Camp for Children with Congenital Heart Disease: Examining Impact on the Psychosocial Well-Being of Parents

Auteurs: Lauren C. White, Fiona J. Moola, Joel A. Kirsh, Guy E. J. Faulkner

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 10/2016

Abstract

Therapeutic recreation camps have been considered to be an effective context for improving the psychosocial functioning of children with congenital heart disease (CHD). However, there is limited research regarding their impact on parents. Nine parents participated in two semi-structured interviews before and after their children attended a camp for children with CHD. Parents described their perceptions of their children’s camp experiences and identified the psychosocial utility of camp for themselves. Camp enabled parents to let their children grow and be independent, and helped reduce parents’ restricting and overprotective behaviours. Camp also provided parents with respite care, which alleviated their need to be ‘cardiac’ parents. These findings strengthen the case for therapeutic recreation camps and underscore the importance of expanding camp access to more families affected by CHD.

vorige artikel The Significance of Military Contexts and Culture for Understanding Family Well-Being: Parent Life Satisfaction and Adolescent Outcomes

volgende artikel The Impact of Parent Empowerment in Children’s Mental Health Services on Parenting Stress

Agha, M. M., Glazier, R. H., Moineddin, R., Moore, A. M., & Guttmann, A. (2011). Socioeconomic status and prevalence of congenital heart defects: Does universal access to health care system eliminate the gap? Birth Defects Research, 91, 1011–1018. doi:10.1002/bdra.22857.CrossRefPubMed

Bar-Mor, G., Bar-Tal, Y., Krulik, T., & Zeevi, B. (2000). Self-efficacy and physical activity in adolescents with trivial, mild, or moderate congenital cardiac malformations. Cardiology in the Young, 10, 561–566. doi:10.1017/S1047951100008829.CrossRefPubMed

Bloomberg, L. D., & Volpe, M. (2008). Completing your qualitative dissertation: A roadmap from beginning to end. Thousand Oaks: Sage.CrossRef

Bowen, M. (1966). The use of family theory in clinical practice. Comprehensive Psychiatry, 7, 345–374. doi:10.1016/S0010-440X(66)80065-2.CrossRefPubMed

Bowen, M. (1974). Alcoholism as viewed through family systems theory and family psychotherapy. Annals of the New York Academy of Sciences, 233, 115–122. doi:10.1111/j.1749-6632.1974.tb40288.x.CrossRefPubMed

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi:10.1191/1478088706qp063oa.CrossRef

Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. London: Sage.

Bultas, M. W., Budhathoki, C., & Balakas, K. (2013). Evaluation of child and parent outcomes after a pediatric cardiac camp experience. Journal Specialists in Pediatric Nursing, 18, 320–328. doi:10.1111/jspn.12040.

Bultas, M. W., Steurer, L. M., Balakas, K., Brooks, C., & Fields, H. (2014). Psychosocial outcomes of a summer overnight recreational experience for children with heart disease. Journal of Child Health Care, 19, 542–549. doi:10.1177/1367493514540350.CrossRefPubMed

Canadian Congenital Heart Alliance. (2013) About congenital heart defects. Retrieved from http://www.cchaforlife.org/about-congenital-heart-defects.

Connor, J. A., Kline, N. E., Mott, S., Harris, S. K., & Jenkins, K. J. (2010). The meaning of cost for families of children with congenital heart disease. Journal of Pediatric Health Care, 24, 318–325. doi:10.1016/j.pedhc.2009.09.002.CrossRefPubMed

Czosek, R. J., Bonney, W. J., Cassedy, A., Mah, D. Y., Tanel, R. E., Imundo, J. R., & Marino, B. S. (2012). Impact of cardiac devices on the quality of life in pediatric patients. Circulation Arrhythmia Electrophysiology, 5, 1064–1072. doi:10.1161/circep.112.973032.CrossRefPubMed

Elliot, R., Fischer, C. T., & Rennie, D. L. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 215–229. doi:10.1348/014466599162782.CrossRef

Esterberg, K. G. (2002). Qualitative methods in social research. Boston: McGraw Hill.

Franck, L. S., McQuillan, A., Wray, J., Grocott, M. P., & Goldman, A. (2010). Parent stress levels during children’s hospital recovery after congenital heart surgery. Pediatric Cardiology, 31, 961–968. doi:10.1007/s00246-010-9726-5.CrossRefPubMed

Fredriksen, P. M., Mengshoel, A. M., Frydenlund, A., Sorbye, O., & Thaulow, E. (2004). Follow-up in patients with congenital cardiac disease more complex than haemodynamic assessment. Cardiology in the Young, 14, 373–379. doi:10.1017/s1047951104004044.CrossRefPubMed

Goodwin, D. L., & Staples, K. (2005). The meaning of summer camp experiences to youths with disabilities. Adapted Physical Activity Quarterly, 22, 160–178.CrossRef

Heart and Stroke Foundation. (2012) Congenital heart disease. Retrieved from http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3484063/k.E84C/Heart_disease__Congenital_heart_disease.htm.

Lawoko, S., & Soares, J. J. (2003). Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Quality of Life Research, 12, 655–666. doi:10.1023/A:1025114331419.CrossRefPubMed

Lawoko, S., & Soares, J. J. (2006). Psychosocial morbidity among parents of children with congenital heart disease: A prospective longitudinal study. Heart and Lung, 35, 301–314. doi:10.1016/j.hrtlng.2006.01.004.CrossRefPubMed

Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic Inquiry. Newbury Park: Sage.

Linde, L. M., Rasof, B., & Dunn, O. J. (1970). Longitudinal studies of intellectual and behavioral development in children with congenital heart disease. Acta Paediatrica Scandinavica, 59, 169–176. doi:10.1111/j.1651-2227.1970.tb08984.x.CrossRefPubMed

Linde, L. M., Rasof, B., Dunn, O. J., & Rabb, E. (1966). Attitudinal factors in congenital heart disease. Pediatrics, 38, 92–101.PubMed

Luyckx, K., Goossens, E., Missotten, L., & Moons, P. (2011). Adolescents with congenital heart disease: The importance of perceived parenting for psychosocial and health outcomes. Journal of Developmental and Behavioral Pediatrics, 32, 651–659. doi:10.1097/DBP.0b013e3182331e99.CrossRefPubMed

Mackey, M. C. (2012). Evaluation of qualitative research. In P. Munhall (Ed.), Nursing research: A qualitative perspective (5th ed., pp. 517–531). Toronto: Jones and Bartlett.

McDaniel, S. H., & Campbell, T. L. (1998). Family caregiving and coping with chronic illness. Families, Systems, and Health, 16, 195–196. doi:10.1037/h0089941.CrossRef

Meltzer, L. J., & Johnson, S. B. (2004). Summer camps for chronically ill children: A source of respite care for mothers. Children’s Health Care, 33, 317–331. doi:10.1207/s15326888chc3304_5.CrossRef

Moola, F., Faulkner, G. E., Kirsh, J. A., & Kilburn, J. (2008). Physical activity and sport participation in youth with congenital heart disease: Perceptions of children and parents. Adapted Physical Activity Quarterly, 25, 49–70.CrossRefPubMed

Moola, F. J., Faulkner, G. E., White, L., & Kirsh, J. A. (2014). The psychological and social impact of camp for children with chronic illnesses: A systematic review update. Child: Care Health and Development, 40, 615–631. doi:10.1111/cch.12114.

Moola, F. J., Faulkner, G., White, L., & Kirsh, J. (2015). Kids with special hearts: The experience of children with congenital heart disease at Camp Willowood. Qualitative Research in Sport, Exercise and Health, 7, 271–293. doi:10.1080/2159676X.2014.926968.CrossRef

Moola, F., Fusco, C., & Kirsh, J. A. (2011). The perceptions of caregivers toward physical activity and health in youth with congenital heart disease. Qualitative Health Research, 21, 278–291. doi:10.1177/1049732310384119.CrossRefPubMed

Munhall, P. (2012). Nursing Research: A qualitative perspective (5th ed.). Toronto: Jones and Bartlett Learning.

Nembhard, W. N., Wang, T., Loscalzo, M. L., & Salemi, J. L. (2010). Variation in the prevalence of congenital heart defects by maternal race/ethnicity and infant sex. The Journal of Pediatrics, 156, 259–264. doi:10.1016/j.jpeds.2009.07.058.CrossRefPubMed

Nicholas, D. B., Williams, M., & MacLusky, I. B. (2009). Evaluating group work within a summer camp intervention for children and adolescents with asthma. Social Work With Groups, 32, 209–221. doi:10.1080/01609510802527425.CrossRef

Ong, L., Nolan, R. P., Irvine, J., & Kovacs, A. H. (2011). Parental overprotection and heart-focused anxiety in adults with congenital heart disease. International Journal of Behavioral Medicine, 18, 260–267. doi:10.1007/s12529-010-9112-y.CrossRefPubMed

Patton, M. Q. (1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park: Sage.

Peckover, S. (2002). Supporting and policing mothers: An analysis of the disciplinary practices of health visiting. Journal of Advanced Nursing, 38, 369–377. doi:10.1046/j.1365-2648.2002.02197.x.CrossRefPubMed

Phares, V., Lopez, E., Fields, S., Kamboukos, D., & Duhig, A. M. (2005). Are fathers involved in pediatric psychology research and treatment? Journal of Pediatric Psychology, 30, 631–643. doi:10.1093/jpepsy/jsi050.CrossRefPubMed

Shelton, K. J., & Witt, P. A. (2011). Therapeutic camps as respite care providers: Benefits for families of children with disabilities. Therapeutic Recreation Journal, 45, 17–31.

Simons, L. E., Blount, R. L., Campbell, R., Hubbard, A., Goodwin, B., Devine, K., & Benoit, M. (2007). Decreases in anxiety associated with participation in a camp for children with cardiac defects. Cardiology in the Young, 17, 631–637. doi:10.1017/s1047951107001485.CrossRefPubMed

Smith, K. E., Gotlieb, S., Gurwitch, R. H., & Blotcky, A. D. (1987). Impact of a summer camp experience on daily activity and family interactions among children with cancer. Journal of Pediatric Psychology, 12, 533–542. doi:10.1093/jpepsy/12.4.533.CrossRefPubMed

Sparacino, P. S., Tong, E. M., Messias, D. K., Foote, D., Chesla, C. A., & Gilliss, C. L. (1997). The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart and Lung, 26, 187–195. doi:10.1016/S0147-9563(97)90055-8.CrossRefPubMed

Sparkes, A. C., & Smith, B. (2014). Qualitative research methods in sport, exercise and health: From process to product. London: Routledge.

Spurkland, I., Bjørnstad, P. G., Lindberg, H., & Seem, E. (1993). Mental health and psychosocial functioning in adolescents with congenital heart disease. A comparison between adolescents born with severe heart defect and atrial septal defect. Acta Paediatrica, 82, 71–76. doi:10.1111/j.1651-2227.1993.tb12520.CrossRefPubMed

Walker, D. A., & Pearman, D. (2009). Therapeutic recreation camps: An effective intervention for children and young people with chronic illness? Archives of Disease in Childhood, 94, 401–406. doi:10.1136/adc.2008.145631.CrossRefPubMed

Warady, B. A. (1994). Therapeutic camping for children with end-stage renal disease. Pediatric Nephrology, 8, 387–390. doi:10.1007/BF00866373.CrossRefPubMed

Wu, Y. P., Prout, K., Roberts, M. C., Parikshak, S., & Amylon, M. D. (2011). Assessing experiences of children who attended a camp for children with cancer and their siblings: A preliminary study. Child and Youth Care Forum, 40, 121–133. doi:10.1007/s10566-010-9123-5.CrossRef

Wysocki, T., & Gavin, L. (2004). Psychometric properties of a new measure of fathers’ involvement in the management of pediatric chronic diseases. Journal of Pediatric Psychology, 29, 231–240. doi:10.1093/jpepsy/jsh024.CrossRefPubMed

Titel: A Therapeutic Recreation Camp for Children with Congenital Heart Disease: Examining Impact on the Psychosocial Well-Being of Parents
Auteurs: Lauren C. White
Fiona J. Moola
Joel A. Kirsh
Guy E. J. Faulkner
Publicatiedatum: 25-06-2016
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 10/2016
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-016-0474-x

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 10/2016

Failing to Meet the Good Parent Ideal: Self-Stigma in Parents of Children with Mental Health Disorders

The Role of Parental Depressive Symptoms in Predicting Dysfunctional Discipline Among Parents at High-Risk for Child Maltreatment

Children’s Maternal Support-Seeking: Relations to Maternal Emotion Socialization Responses and Children’s Emotion Management

Parental Psychopathology Levels as a Moderator of Temperament and Oppositional Defiant Disorder Symptoms in Preschoolers

The Role of Rigidity in Adaptive and Maladaptive Families Assessed by FACES IV: The Points of View of Adolescents

Gender Differences in Parental Images and Intimate Relationships: A Northern Finland Sample