Challenges in Studies of Caregiving in Pediatrics

Problems of small cohorts for pediatric caregiving studies

Given the relative rarity of chronic illnesses in childhood, finding sufficient numbers of caregiving parents to mount large studies of caregiver burden or of the success of interventions may be more difficult than when studying larger populations, such as caregivers of loved ones with dementia.

Dad and sick childIn a given community, there may be few parents who would meet typical study criteria. The issue of small numbers of eligible subjects is complicated by the range of caregiver and child factors which may affect the caregiving experience and which researchers would like to control or stratify for in their research.

Researchers often need to mount multi-site studies or plan for longer study periods in order to adequately evaluate caregiver interventions. Both of these research strategies require higher funding levels. Another strategy is to group parents of children with different diseases such as cancer and sickle-cell diseases in caregiver research. But this approach may make it more difficult to understand the caregiving burdens of specific children and their family members coping with particular chronic illnesses during different developmental periods.

Child specific factors in pediatric caregiving studies

Factors such as the age of the ill child may make caregiving burdens quite different for caregivers caring for an ill infant from those caring for an ill teenager. Other factors that may further limit the number of eligible caregivers are:

  • The child’s degree of physical impairment
  • Chronicity of physical impairment
  • Degree of emotional distress and/or mental illness
  • Child’s social functioning,
  • Child’s cognitive functioning
  • Child’s communication skills
  • Child’s educational abilities and school placement

Community-specific factors in pediatric caregiving

Community-specific factors may make it difficult to assume that caregivers in different places face similar stressors. These factors include:

  • The social valence of a child’s illness (e.g. AIDS vs. cancer) in different communities
  • The availability of social support from the community
  • The presence or absence of educational supports and practical assistance
  • Highly specialized care for children with serious illnesses which may not be available in many smaller communities and which may require caregiving parents to travel frequently to distant healthcare facilities.