The parents of children with chronic illness have additional roles beyond that of typical parenting. These roles can often include functionally being a coordinator for specialty care, medical expert in their child's diagnosis and medications, and system advocates to ensure their child's needs are adequately met. Meeting the needs of their child's special needs can become socially and emotionally exhausting and isolating.
Parents of children with chronic illness can find a lack of social empathy and often resort to their naturally occurring venues for support, such as other parents and children that receive treatment from the same care providers, therapists, etc. It is important for both the parents and the child to be surrounded by others who have true empathy for the situation. Likewise, it is important for the parents and child to have times when the issues of the chronic illness are "put on the shelf" for a while to focus on being a family, rather than a family coping with chronic illness.
There are unique dynamics regarding coping with a chronic illness for the parents and children. Parents with children with chronic illness often experience:
- Managing strong emotions
- Social isolation
- Finding time for personal needs
- Adjusting expectations and redefining normal
- Balancing child's need with siblings
- Discipline quandaries
- Dealing with the scrutiny of others
- Lack of understanding
- Common ground lost
- Priorities shift
- Limited energy and time to nurture others
- Coping differences
- Finding providers who listen and are willing to partner
- Bureaucratic barriers and complexities
- Not fitting in
- Vulnerable to others insensitivity
- Coping with fear and anxiety
- Atypical dependence on parents
- Re-framing perspective and adjusting expectations - feelings and actions are based on thoughts
- Be prepared and knowledgeable - the more informed, the better care
- Develop partnerships with professionals - have realistic expectations and display gratitude
- Take care of your personal needs - take care of yourself first and you can care better for others
- Similar peers - develop relationships with peers who understand the unique familial needs
- Become an effective advocate - assertively standing up for a change in areas of challenge
- Their child demonstrates increased compassion, tolerance and maturity beyond their years
- They have an increased appreciation for important things and a clarity of life's meaning
- They have personal growth and discover inner strength they never thought possible
Kieckhefer, G. M., Kratz, L., Trahms, C. M., Uding, N., & Villareale, N. (2009). Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships. Families, Systems & Health, 27(4), 303+.
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