Helping Parents of Children With Chronic Health Conditions

Helping Parents of Children With Chronic Health Conditions

As reported in the Summer 2012 issue of FOCUS, The Journal of Lifelong Learning in Psychiatry, approximately one-quarter of children and adolescents in the United States have a chronic health condition including trauma, disability and potential life-shortening illness. These include physical conditions such as asthma, diabetes, leukemia and sickle cell disease as well as psychiatric and developmental disabilities such as ADHD and autism spectrum disorders. The long-term nature of chronic childhood illness and disability affects all family members in multiple ways on a biological, psychological, and sociological or combined biopsychosocial level. Family functioning, parental mental and physical health, parental sleep disturbance, and family economic/financial health are just some of the main areas of difficulty that need to be attended to.

A comprehensive therapeutic approach requires a focus on the whole child and the whole family.

Optimal care for the child and family requires assessment of multiple interrelated issues. Children’s health is both affected by and contributes to multiple family dynamics. Family caregivers can become overwhelmed and experience shame, guilt, anger and blame leading to conflict with the child in a repetitive cycle of attack-defend, criticize-avoid. Children often recognize the seriousness of their condition and prefer open communication about diagnosis, prognosis and treatment goals. Parental avoidance and denial leads to the child feeling isolated and alone. There are also multi-generational consequences such as marital stress and divorce, grandparent stress, financial stress and bankruptcy, and decreased social and extended family interactions.

It is important to pay attention to the family structure and organization. All families have rules, designated roles, established rituals, historical belief systems and repetitive patterns of communication. A multi-generational framework addresses the family history of previous illness and crisis, definitions of the “sick role”, coping patterns, and designation of the primary caretaker. Attention to psychosocial support for parents and other family members is crucial as peer relationships for caregivers and healthy siblings may suffer. Parental/caregiver quality of life is often impaired by physical exhaustion, emotional fatigue, cognitive dulling and “burnout”.

Ronald B Cohen of discusses how children suffering from chronic illness affects the whole family and how a comprehensive therapeutic can help.All families can use a bit of guidance and advice when bonding and family relationships are adversely affected.

An Integrated Systemic Family perspective for helping families with children with chronic conditions addresses the goals of learning to “struggle well”, reduce stress and vulnerability and empower families to overcome persistent adversity. Integrative psychiatrists, trained to combine medication, therapy and social context into a systemic holistic treatment approach are in a unique position to provide services that address the multiple issues that cause suffering for patients and their families and have a negative impact on the quality of their lives.

Interventions range from family psychoeducation to intensive family, couple and/or individual therapy. Psychoeducation addresses the normative challenges of coping and adapting to serious life-threatening or potentially life-shortening illness. Outside resources include family support groups, “respite services”, and work support. Systemic family interventions address coping strategies and communication styles, help improve intra- and extra-familial relationships and promote long-term healthy psychological adjustment.

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Ronald B Cohen, MD, PC Ronald B. Cohen, MD
Bowen Family Systems Coach
1 Barstow Road, Suite P-10
Great Neck, NY 11021
(516) 466-7530
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