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Building Stronger, Healthier Families When a Child Is Chronically Ill: A Guide for School Personnel

By Paul C. McCabe, PhD, NCSP Brooklyn College – City University of New York
And Christopher Sharf, Graduate Student, Brooklyn College – City University of New York

A family's ability to successfully cope with trauma and stress is predictive of a variety of emotional, psychological, behavioral and health consequences. Family cohesion and adaptability have been identified as important variables that help predict how well families cope with trauma. Family cohesion is defined as the emotional bonding between family members. Adaptability is defined as the family's proficiency in changing its hierarchy, roles, and rules to respond to situational crises (Place, Hulsmeier, Brownrigg, & Soulsby, 2005; Williams et al., 2002). Family cohesion and adaptability can be examined to predict how well families will cope with stress and other general problems that are accompanied by a sudden or ongoing traumatic event, such as a child in the family suffering a chronic illness.

A diagnosis of a childhood chronic illness is a life-altering event that will likely lead to numerous and marked stressors, including those with emotional, psychological, and financial consequences for the family. The stressors experienced by families are typically frequent and ongoing, and begin with the time of the initial diagnosis. Stressors may also occur during developmental transitions, during medical management and provision of ongoing health care needs of the child, and also during illness exacerbations, relapse, and hospitalizations. School psychologists serve an important role in working with chronically ill children and their families to build resilience to stressors.

Some Facts About the Stress in Families With a Chronically Ill Child

In families with a child who is chronically ill, parents have to rely on a caring and supportive family environment, including their spouse/partner, children, or extended family to help cope with the ongoing stressors of treatment and illness exacerbation. However, parents often report feeling alone as they struggle to cope with the stressors of their child's chronic illness (Melnyk, Feinstein, Moldenhouer, & Small, 2001).

Parents' perception of the stress caused by the illness on the family, their ability to cope, and family cohesion predicts the parents' level of psychological distress (Sloper, 2000). Turmoil in the family and other psychosocial stressors may lead to an increase of neuroendocrine responses that stress and ultimately weaken the immune system and lead to increased risk of developing infectious disease and/or symptom exacerbation in all family members (Schmidt & Schmidt, 1991).

The medical diagnosis not only stresses families with the portent of side effects or death, but it also signifies a major change in family dynamics as parents and siblings realize they will be responsible for providing a large amount of patient care. There are some indications that caregivers can experience even greater psychological distress than the ill child (McGrath, 2001). Siblings of the ill child may perceive themselves as socially isolated and the parents as overindulgent with the ill child. They may exhibit poorer academic achievement, impaired social interactions, and more guilt, aggressiveness, withdrawal, jealousy, anxiety, and fearfulness (Cohen, Friedrich, & Jaworski, 1994).

Families with sibling relationships characterized as higher in conflict are more likely to have children with lower self-esteem, poorer family cohesion, and difficulties adjusting to the medical regimen (Hanson et al., 1992).

Emotional stressors related to controlling the illness can be prominent for the child, including fears of relapse or suffering future complications (Hanson, et al., 1989).

If families endure any major discrete stressor such as marital separation or divorce, then the behavioral effects on the child with a chronic illness can be magnified (Holmes, Yu, & Frentz, 1999). Higher family conflict, greater negative life events, and lower family cohesion predict more behavior problems in the child with a chronic illness.

The Role of Family Cohesion and Adaptability in Making Families Healthier

Parents with more positive mood and outlook have a direct impact on their children's perception of social support, leading to higher self-esteem and positive mood in their children, and better overall family functioning (Williams et al., 1999).

Research has found that families with predominantly stable relationships, flexibility among roles, and adequate support among family members are able to maintain their quality of life over an extended period of medical treatment, whereas families with pre-existing problems experience exacerbation of family problems after the initial diagnosis (Goldbeck, 2001). Higher family conflict predicts more externalizing problem behaviors and a greater number of prescribed medications, while higher family cohesion predicts fewer hospitalizations (Soliday, Kool, & Lande, 2001).

However, families with high cohesion and adaptability in the presence of pediatric chronic illness predict better family adaptation and healthier siblings (Cohen et al., 1994). Healthier siblings and parents, in turn, have more emotional and psychological resources to dedicate to improving the treatment and care of the ill child and helping to maintain the family routine. Low family conflict helps to serve as a protective factor against negative life events, and family cohesion predicts children's social competencies (Holmes et al, 1999).

Family cohesion plays an important role in predicting successful, long-term medical management of chronic illness, particularly among younger children, due to the need for close adult supervision or supervision from older siblings in managing their illness (Band & Weisz, 1990). Reducing family stress and increasing resiliency factors may not only improve emotional and coping behaviors, but fortify the entire family's immune systems to fight disease (Cohen & Williamson, 1991).

What Can Parents, Teachers and Other School Professionals Do?

Parents, as well as the ill child, often need social, emotional and financial support because situational demands can exceed personal resources. Parents have confirmed the importance of support they received from their partners, friends and community members while tending to their ill child. Parents may need social and emotional support in a variety of ways. They may also need help seeking and securing financial support for the ongoing medical costs (McGrath, 2001). Important emotional support can be a simple phone call to a partner, friend, or parent for reassurance, especially in times of isolation or loneliness. This also acts as a type of informal counseling that helps create strength for coping (McGrath, 2001).

Other ways the family and community provide practical support include making arrangements for the provision of food, helping with cleaning and chores, assisting in child care arrangements, and providing caretaking relief at the hospital so that the parents have a chance to return home (McGrath, 2001).

Parents and health care professionals often question what and when to tell chronically ill children about their illness. An adequate background of knowledge is necessary for the control of a chronic illness; however, timing in delivering that knowledge is important and should be developmentally appropriate. Parents and siblings should be prepared to educate the child when he or she is mature enough to accept responsibility for the majority of daily tasks (Band & Weisz, 1990). Schools can help parents by guiding them on information delivery and referring families to support groups and listservs.

Parents of chronically ill children have offered suggestions for increasing support for families (McGrath, 2001), including:

  • Families with a newly diagnosed child benefit from health care professionals or appropriately trained volunteers assigned to mentor them through initial stages of treatment.
  • Health care professionals should emphasize sensitivity when working with parents and assessing their need for support.
  • School professionals could introduce parents to others that share similar needs for support, thus opening lines for communication and affiliation.
  • Parents who have a newly diagnosed child can be introduced to parents whose child successfully completed treatments or demonstrated successful coping and management of the treatment regimen.

If there is conflict within the family or lack of cohesion, then family therapy is suggested to improve communication and conflict resolution, which may help to reduce some of the stress associated with the chronic illness. Interventions using multisystemic therapy may be particularly well suited for improving treatment adherence in chronically ill children and adolescents due to the involvement of multiple systems (i.e., child, family, peer, school, health care provider; Ellis et al., 2007).

School psychologists can help to ensure that emotional support is provided in the education and management of care for chronically ill children. This may include acting as a liaison among hospital, school, and child; informing teachers and administration of symptom presentation, behavioral effects, and academic performance; and identifying the interventions that may work best in the classroom given the child's health limitations.

Resources

Band, E. B., & Weisz, J. R. (1990). Developmental differences in primary and secondary control coping and adjustment to juvenile diabetes. Journal of Clinical Child Psychology, 19, 150–158.

Cohen, D. S., Friedrich, W. N., & Jaworski, T. (1994). Pediatric cancer: Predicting sibling adjustment. Journal of Clinical Psychology, 50, 303–319.

Cohen, S., & Williamson, G. M. (1991). Stress and infectious disease in humans. Psychological Bulletin, 109, 5–24.

Ellis, D. A., Templin, T., Naar-King, S., Frey, M. A., Cunningham, P. B., Podolski, C., et al. (2007). Multisystemic therapy for adolescents with poorly controlled type I diabetes: Stability of treatment effects in a randomized controlled trial. Journal of Consulting and Clinical Psychology, 75, 168–174.

Goldbeck, L. (2001). Parental coping with the diagnosis of childhood cancer: Gender effects, dissimilarity within couples, and quality of life. Psycho-Oncology, 10, 325–335.

Hanson, C. L., Harris, M. A., Relyea, G., Cigrang, J. A., Carle, D. L., & Burghen, G. A. (1989). Coping styles in youths with insulin-dependant diabetes mellitus. Journal of Consulting & Clinical Psychology, 57, 644–651.

Hanson, C. L., Henggeler, S. W., Harris, M. A., Cigrang, J. A., Schinkel, A. M., Rodrigue, J. R., et al. (1992). Contributions of sibling relations to the adaptation of youths with insulin-dependent diabetes mellitus. Journal of Consulting and Clinical Psychology, 60, 104–112.

Holmes, C. S., Yu, Z., & Frentz, J. (1999). Chronic and discrete stress as predictors of children's adjustment. Journal of Consulting and Clinical Psychology, 67, 411–419.

McGrath, P. (2001). Identifying support issues of parents of children with leukemia. Cancer Practice, 9, 198–205.

Melnyk, B. M., Feinstein, N. F., Moldenhouer, Z., & Small, L. (2001). Coping in parents of children who are chronically ill: Strategies for assessment and intervention. Pediatric Nursing, 27, 548–558.

Place, M., Hulsmeier, J., Brownrigg, A., & Soulsby, A. (2005). The Family Adapatability and Cohesion Scale (FACES): An instrument worthy of rehabilitation? Psychiatric Bulletin, 29, 215–218.

Schmidt, D. D., & Schmidt, P. M. (1991). Family systems, stress, and infectious diseases. Advances, 7, 7–15.

Sloper, P. (2000). Predictors of distress in parents of children with cancer: A prospective study. Journal of Pediatric Psychology, 25(2), 79–91.

Soliday, E., Kool, E., & Lande, M. B. (2001). Family environment, child behavior, and medical indicators in children with kidney disease. Child Psychiatry & Human Development, 31, 279–295.

Williams, P. D., Williams, A. D., Graff, J. C., Hanson, S., Stanton, A., Hafeman, C., et al. (2002). Interrelationships among variables affecting well siblings and mothers in families of children with a chronic illness or disability. Journal of Behavioral Medicine, 25, 411–424.

Williams, P. D., Williams, A. R., Hanson, S., Graff, C., Ridder, L., Curry, H., et al. (1999). Maternal mood, family functioning, and perceptions of social support, self-esteem, and mood among siblings of chronically ill children. Children's Health Care, 28, 297–310.

Websites

At-Health.com: Children and Chronic Illness http://www.athealth.com/Consumer/newsletter/ FPN_4_5.html

CDC & NASD: From Family Stress to Family Strengths http://www.cdc.gov/nasd/docs/d001201-d001300/ d001249/d001249.html

Institute of Medicine: When Children Die – Improving Palliative and End-of-Life Care for Children and Their Families http://www.iom.edu/CMS/3740/4483.aspx

Kid's Health: How to care for a seriously ill child http://www.kidshealth.org/parent/system/ill/ seriously_ill.html