Summary of an article on MedScape that shows precisely how hard it is to care for a child with a chronic illness.
[This article first appeared in the PAGER newsletter, Reflux Digest, June 2004]

Great Expectations: A Position Description for Parents as Caregivers

This two-part article on MedScape provides a comprehensive overview of the burden of caregiving when a child has a chronic medical condition.

Four caregiving tasks are identified:

  • managing the illness
  • identifying, accessing and coordinating resources
  • maintaining the family unit
  • and maintaining self.

The article uses an extensive review of the literature to describe the multitude of skills parents need including assessing and treating symptoms, advocating for their child while attending to a multitude of tasks related to childcare, medical care and managing the household.

Parents, especially mothers, are expected to carry the burden of the caretaking and extra tasks associated with caring for a child with a chronic condition with little or no additional help. The authors state that it is important for medical providers to assess the caretaker burden and take measures to address the needs of caretakers to ensure they have the skills and support to provide the care that is needed at home.

Part II of the article contains a list of 166 “Parent/ Caregiver Responsibilities and Activities Associated with the Day-to-Day Management of Raising a Child who has a Chronic Condition.” The list will amaze and overwhelm you, yet most of you have already learned of the tasks by the seat of your pants.

Unfortunately, the article doesn’t go far enough in defining tasks such as “uses an appropriate level of vigilance,” “keeps written records when appropriate,” or “seeks authoritative advice when appropriate.” [Emphasis added] For instance, most parents would never dream of leaving a child alone in a hospital overnight, yet some of our parents have been accused of being hyper-vigilant when they stay over. And it is never inappropriate to keep a full copy of the medical chart, yet some of our parents are refused copies. When specialists disagree on a diagnosis or treatment, what is appropriate action for the parent? The task “asks questions to assist in developing explanations” could also be problematic to define. How many questions are acceptable – and who has the right to decide?

There is a discussion of how professionals can use the list in assessing, teaching and supporting parents of children with chronic illness.

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