By: Jane Kim, Research Intern, Devereux Center for Resilient Children
Families and professionals who interact with and care for children with Chronic Illnesses (CI) deserve a much needed focus on resilience. Caring for children with CI involves high levels of emotional engagement and personal commitment (Meier and Beresford, 2006). The responsibility for caring for a child with a chronic illness is associated with increased caregiver stress, feelings of powerlessness, helplessness, and lack of hope (Wenzel et al., 2011). How can families stay positive when the odds are against them? Specifically, how do families coping with a childhood chronic illness nurture resilience? What kind of effective strategies can be used to minimize the negative social and emotional impact of chronic illness on the children, families and health care professionals? And what protective factors may contribute to helping them overcome the challenges and risk factors presented by chronic illness?
The literature supports the following tips for promoting resilience and preventing burnout amongst families caring for children with CI:
1) “Put the illness in its place”
Families coping with childhood chronic illness often feel that the illness demands so much that it becomes the center of family life. The protective strategy of “putting the illness in its place” has been used in medical family therapy to show the family that the relationship between the family and illness is not a one-way track. Through the development of “balanced coping”, a term coined by Cohen in 1999; the family can see that they are not just victim to the illness, but can also influence the illness, its process, course, and outcome. Achieving balance requires remembering to promote the growth and development of all family members as well as the family unit. Reminding parents and family members to maintain balance in their lives by attending to themselves and their family in addition to the illness is important, and can support the family’s overall well-being. Try DCRC’s Building Your Bounce as a way to practice self-care strategies and build adult protective factors! Caregivers can also seek out workshops and support groups to help them build resilience.
2) Family is the most influential Support System
After “putting the illness in its place” the family is able to improve upon other aspects of everyday living that may be demanding for families coping with a CI. Quality of family life is the most powerful predictor of child adjustment. Open communication and understanding are essential to family functioning – all the more in families coping with childhood chronic illnesses. Families dealing with childhood chronic illness may find that the following methods help maintain quality family life: Taking turns with caregiving roles, maintaining self-esteem despite setbacks, seeking medical consultation and support, and balanced coping (see number 1). However, it is important to note that all of these strategies together are most beneficial for building resilience.
3) Acknowledging fears
Families dealing with childhood CI often feel the need to avoid their fears and pressing concerns of the future and their children’s outcome. Parents feel that they are in a chronic state of uncertainty as a result of the long-term stresses and strain of dealing with their child’s CI. Healthcare providers are partially responsible for minimizing the parents’ concerns in hopes to reassure or comfort the families. However, it is helpful for the families to acknowledge their intense fears, and to encourage a “one day at a time” philosophy toward coping with stress. For strategies on building hope and optimism, look to the section Internal Beliefs in Building Your Bounce for activities such as “Solution Circle.” The Self-Control section even has a ‘“One Day at a Time” To-Do List’ that helps to set priorities and limits and take things one day at a time.
4) “Hear the children’s voices”
Although parents as guardians and care-takers assume the difficult responsibility to make the right decisions for their children, they should not fail to “hear the children’s voices.” A family member’s condition has an impact on the psychosocial well-being of their children with and without an illness. Therefore, children should be given opportunities to make choices and express their opinions. This does not mean that the parent should leave it up to their children to make all of their own decisions. Rather, it means to involve the family in the coping process, and to keep everyone informed as the family deals, as a unit, with the grueling illness and its demands.
5) Education: Building children’s resilience through school
Along with families, and peers systems, the school system can promote resilience in children. Many children dealing with CI and their siblings are unable to or abstain from attending school because of the adverse effects of their illness. However, incorporating resilience into the education of these students through developing their relationships and within-child protective factors, such as coping skills, can improve their academic experiences and foster academic achievement. Children with CI need to be encouraged and provided with opportunities for positive growth, stress management, and problem solving
The study of children’s resilience underscores the significance of parent stress management and mindfulness as ways to promote children’s attachment, and healthy development. Reaching out to other families through peer led self-management programs can help families to be fully engaged in decisions about their child’s treatment and care. It also equips family members to play an active role in the daily management of their illness. Parents will gain the knowledge they need to build their resilience and to promote their children’s resilience. Web-based education and support may also offer a relatively easy way of reaching families who feel isolated by their child’s condition.
7) Clinicians and other professionals can support family adaptation
Because of the very nature of chronic illness, families often find themselves relying on health care providers for support. Professionals should take a person-centered approach to address the unique needs, preferences, and values of the child and family experiencing CI. Developing an informed understanding of the needs of each family, allows professionals to provide the highest quality care, and employing interventions that are most timely and effective.
Professionals are also encouraged to reflect on their current practice and consider areas for improvement when working with families experiencing chronic illness. For example, professionals could emphasize motivational interviewing techniques to maintain or build a sense of control in families coping with CI, or allow more time to listen to children’s opinions
Try the Devereux Adult Resilience Survey to reflect on your protective factors today!
Barlow, J. H., & Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child: Care, Health and Development, 32, 19-31. doi:http://dx.doi.org/10.1111/j.1365-2214.2006.00591.x
Burns, B. M., Haynes, L. D., Bauer, A., Shetty, A., Mendoza, J., Fregoso, F., . . . Arellano, B. (2013). Strengthening children’s resilience through parenting: A pilot study. Therapeutic Communities, 34, 121-131. doi:http://dx.doi.org/10.1108/TC-07-2013-0020
Carter, B. (2014). Parenting a sick child: Challenge and resilience. Journal of Child Health Care, 18, 99-100. doi:http://dx.doi.org/10.1177/1367493514535332
Cohen, M.S. (1999). Families coping with childhood chronic illness: A research review. Families, Systems, & Health, 17. 149-164. doi:http://dx.doi.org/10.1037/h0089879
Jones, J. E., Kessler-Jones, A., Thompson, M. K., Young, K., Anderson, A. J., & Strand, D. M. (2014). Zoning in on parents’ needs: Understanding parents’ perspectives in order to provide person-centered care. Epilepsy & Behavior, 37, 191-197. doi:http://dx.doi.org/10.1016/j.yebeh.2014.06.029
Smith, A. M., & Grzywacz, J. G. (2014). Health and well-being in midlife parents of children with special health needs. Families, Systems, & Health, 32, 303-312. doi:http://dx.doi.org/10.1037/fsh0000049
Tétreault, S., Freeman, A., Carrière, M., Beaupré, P., Gascon, H., & Marier Deschênes, P. (2014). Understanding the parents of children with special needs: Collaboration between health, social and education networks. Child: Care, Health and Development, 40, 825-832. doi:http://dx.doi.org/10.1111/cch.12105
Wideman-Johnston, T. (2011). Resilience and students with chronic illness: a literature review of fostering resilience into the lives of students with chronic illness. Journal of Educational and Development Psychology, 1. 127-132.