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NASP Communiqué, Vol. 36, #1
September 2007
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