Psychiatric Care for Parents of Children With Medical Complexity

In this issue of Pediatrics, Orkin et al describe the characteristics of parents of children with medical complexity (CMC) seen by a psychiatry service developed in partnership with a pediatric complex care program in Toronto, Ontario.1 Among 57 parents, they found that most (79%) received a new mental health diagnosis, including depressive and anxiety disorders. The authors conclude that most parents of CMC have suboptimal mental health that is undertreated.As the parent of a child with medical complexity and the sibling of an autistic adult, these findings resonate with me. Many parents do not disclose that they are struggling, and health professionals may not feel comfortable inquiring. For parents, hesitance to disclose may stem from a variety of reasons, including mistrust of systems and providers2, unhelpful past experiences or even a deeply held belief that they should cope on their own, a CMC3 parent’s innate need to minimize their needs to focus on the consistent needs of their high-needs children, the general sigma and misconceptions of seeking mental health treatment, concerns of potential negative consequences such as losing custody of their children, the fear of losing control, ableism, financial concerns, or past medical traumas, or they may just lack the capacity to do “one more thing.” These are all valid concerns that should be considered for both psychiatric and nonpsychiatric medical conditions. Health professionals’ hesitation to inquire about the mental health status of parents often comes from not knowing or having resources to offer parents or feeling overwhelmed trying to deliver care in a fragmented system and potential concerns of patient alienation due to the sensitive nature of addressing mental health, or they may simply not have enough time to address it during an appointment made to address another ailment. Ultimately, as described by Orkin et al, many parents of CMC have untreated mental health needs. When parents do not receive necessary mental health care, it can impact the whole family and lead to grief. The lack of accessible mental health services and support for patients and families is taxing, causing burnout and moral injury. With Medicaid cuts looming, rates of untreated anxiety and depression among parents are likely to increase.The work by Orkin et al is a call to action for all who provide care for CMC. Work is needed to spread models of care to address linkages to and effectiveness of mental health interventions for parents of CMC. Identifying how we can support parents’ mental health is a call for creativity and innovation.Focusing on peer support is a path forward, and the National Federation of Families is an excellent resource that could be used as a template for this critical work. As a nationwide family advocacy organization, they bring lived experience collaboration to provide technical assistance and advocacy through a family-driven approach to develop legislations and implement policies that support the overall wellness of families.4 They also provide national peer support certification. Individual peer support networks will vary state to state and may have or may not have specified support to CMC parents. Each state has a Family-to-Family Health Information Center or Family Voices Affiliate Organization (FVAO).5 FVAO uses uniquely qualified staff to provide critical support to families caring for children and youth with special health care needs, particularly families of children with complex needs and those from communities that experience worse outcomes. Far too often parents are not introduced to these peer support services that have deep roots and connections to community resources until later in a child’s life. It is pertinent to introduce peer support options at the time of, or shortly after, diagnosis. But more important is the follow-up afterward. Parents need time to process and time to create space to participate, as it will be outside of their already hectic daily routine. The opportunity to connect and build a spectrum of mental health services and support for parents of CMC is critical and available in many communities. Peer support programs have found success in offering virtual platforms and focusing on flexible time options. In-person options are still viable but may pose challenges for some CMC parents if appropriate childcare is not provided on site. These supports encompass the entire family, reduce feelings of isolation, and provide access to support networks to improve the mental health and well-being of the parent and, indirectly, of the child as well.6