Cost of Caregiving on Parents of Children With Medical Complexity and Life-Limiting Conditions.

Abstract

* Abbreviations: CMC — : children with medical complexity LLC — : life-limiting condition In this issue of Pediatrics , two studies are presented in which researchers explore challenges faced by parent caregivers. Hartley et al1 draw attention to reduced physical health among parents caring for children with life-limiting conditions (LLCs), whereas Bayer et al2 highlight decreased mental and emotional health in parents of children with medical complexity (CMC). For >10 years, I have worked in biomedical ethics and patient advocacy with families of CMC, many of whom also have LLCs. Sadly, I find it unsurprising that Hartley et al1 found 84% of studies in which researchers look at the physical health of caregivers for children with LLCs showed “parent health was directly and negatively impacted by the nature of the care they provided to their child,” whereas Bayer et al2 found “almost one-fifth of parents of CMC self-report poor or fair mental health.” I can speak to these truths both professionally and personally. Among caregivers with whom I have worked (most of whom are mothers), the inability to achieve time for self-care (whether emotional, mental, or physical) is a common topic. This ranges from one mother unable to leave her child with complex medical problems long enough to get a haircut for over 2 years, to multiple mothers repeatedly missing physical or mental health appointments for themselves. Inability to address these needs presents further in our conversations as reports of long-standing sleep deprivation, frequent health problems like colds and tooth abscesses, increased irritability, and anxiety over their ability to fulfill caregiving and family obligations. My professional insight is built on my own caregiving experiences because both of my children were born with a complex rare disease that can shorten life expectancy. My daughter, the more affected child, died shortly before age five. My son is stable at the age … Address correspondence to Jessica Shriver, MA, MS, 123 Lawrence St #1, Clinton, MA 01510. E-mail: jessica.e.shriver{at}gmail.com