The Importance of Community for Parents of Children with Special Health Care Needs (CSHCN)
Parenting these past two years has been a rollercoaster of emotions and experiences. For me there were lows, some highs, and several twists. With a move to a new city, the birth of my second daughter in April 2020, and the COVID-19 pandemic, I made the hard decision to pause my medical career as a pediatrician for children with special health care needs (CSHCN) to become a stay-at-home mom. This life-style change nudged me to spend time reflecting on my work and my parenting. I realized that my career in pediatrics didn’t prepare me for day-to-day, ins and outs, of taking care of my kids. I see now how hugely important my community is for maintaining my sanity and helping me raise my kids. Also, I recognize now, on a much more concrete level, that so much of our society’s parenting culture and socialization is focused around raising typically developing children and that this narrow perspective can leave out parents of CSHCN.
As a pediatrician, I worked first in a Neonatal Intensive Care Unit and then in a pediatric complex care program providing care for CSHCN within a team-based approach. For those less familiar with children with special health care needs (CSHCN), it is an umbrella term for a diverse group of children who have or are at risk of chronic physical, developmental, behavioral, or emotional conditions and require increased healthcare services compared to their typically developing peers. Common diagnoses include (among others) attention deficit hyperactivity disorder (ADHD), behavioral/conduct disorders, autism, developmental delays, mental health disorders, cerebral palsy, epilepsy, and rare genetic disorders. CSHCN represent about 20% of the total population of children and are more likely to be Black, live in poverty, have public insurance, have unmet health care needs and face adverse childhood experiences. Most CSHCN are eligible for additional governmental, insurance and educational programs. My passion for working with this population began as a teenager when I had soooo much fun coaching several Paralympic and Special Olympics teams, it was the personalities and outlooks of the children I met in these experiences that inspired me to become a doctor.
While no two CSHCN and their families are the same, as a group, parents of CSHCN provide a huge amount of specialized care for their child, above and beyond traditional parenting routines. Despite requiring nursing-level skills, this informal caregiving work is often unrecognized, underappreciated and not funded by our healthcare system. Compounding the additional time and out of pocket-expenses associated with providing non-parenting care, parents of CSHCN currently face a dire lack of respite and home healthcare help, limited accessibility to community resources/activities/sports, fragmented healthcare systems, unmet health care needs, and the uncertainty surrounding the ever changing physical and developmental needs of their child.
Parents of CSHCN report unique stressors, emotions and joys of parenting. The day-to-day challenges all parents feel are often intensified and more complex for those raising CSHCN. These challenges include medical decision making, sleep or nutritional issues, Covid-19 questions, balancing the needs of siblings and partners, juggling work and family, self-care, feelings of isolation, school issues, transportation needs and finances. It isn’t surprising that parents of CSHCN are at increased risk of elevated stress and mental health issues (anxiety, depression, post-traumatic stress disorder) as well as physical health challenges. In one cohort of parents with CSHCN rates of post-traumatic stress disorder were equal to that of major earthquake survivors. While most families adapt to the new norm of raising CSHCN, exhaustion, feelings of isolation, and burnout are unfortunately very common.
Many parents of CSHCN feel that our society undervalues and disregards the individuality, personalities, roles and accomplishments of their children. Parents of CSHCN also describe challenges in creating social networks, friends and community. There are several barriers to the development of community and social support for parents of CSHCN. These barriers encompass both societal issues -- inaccessibility, prejudice, and transportation constraints -- and parental restraints -- limited time, energy, and resources, especially given the tremendous caregiving responsibilities. Just as with typically developing children, child specific factors including personalities, age and preferences can also affect the development of social networks. Frequent interactions with the healthcare system is common for CSHCN and could be an entry point for social connections. However, our current system tends to over-medicalize these children - missing the mark on what the majority of my patient’s families want help with - quality of life, family functioning, planning for the future, social engagement and like all of us, how to get more sleep. Several parent-led and parent-involved organizations such as Family Voices, Special Olympics and Lucile Packard Foundation are working to improve social connections for parents of CSHCN but more work is needed.
These past two years have highlighted for me how access to a trust-worthy, non-judgmental community of parents and professionals reduces stress, increases the joy in parenting and encourages families to thrive. Access to such a community matters even more so for parents of CSHCN as current scientific research shows that high levels of social connectedness is associated with decreased risk of physical illnesses – lower risks of cardiovascular disease, rates of diabetes and levels of post traumatic stress disorder. A growing body of research focused on parents of CSHCN shows the positive effects of peer-to-peer support - specifically in increasing hope, a sense of empowerment, self-worth by providing support to others, ability to engage with challenges and decrease maternal depression. Analysis of social networks of parents of CSHCN demonstrates that as a group parents of CSHCN prefer to rely on an informal support system (extended family, friends, faith organizations, online support groups) than formal systems (medical and therapy providers, governmental organizations).
My firm belief in the importance of community support in raising my children coupled with my work as a CSHCN pediatrician led me to find Oath Care and ultimately join their important mission. Oath puts intimate community and medical support at parents’ fingertips in efforts to improve parental and child health. At Oath, we strive to create a diverse, inclusive, and readily accessible community that supports parents of CSHCN through social connections and compassionate expert advice. Our panel of specialists have a depth of experience and comfort working with this population of children and their parents. Specifically, our specialists have training in neurodevelopmental pediatrics, mental health, neonatology, speech and language pathology, physical therapy, acupuncture and Chinese medicine. Oath knows that especially for CSHCN, our experts may not have all the answers immediately but that a connected network of parents probably does.
Oath Care’s small facilitated groups enable parents of CSHCN to exchange information and parenting tips in a safe, validating and inclusive manner. We know that parents of CSHCN report a range of emotions regarding their child’s diagnostic and therapeutic journey from disbelief and loss of identity when their child is diagnosed with a chronic condition to feelings of hope, sense of personal strength, and pleasure in their child’s accomplishments. Joys of parenting CSHCN were apparent daily in my clinical work. In particular, I had one set of parents glowingly tell me their teenage son with severe brain injury and constant medical care needs was their easiest and most loving child, compared to his typically developing mischievous teen brothers. At Oath, we emphasize celebrating these positive aspects of parenting CSHCN in addition to exploration of frustrations, worries, and challenges.
I end my thoughts on the impact of a virtual community and the necessity of the work that Oath is doing with the words of my fellow pediatrician- Dr. Jane Lee. Dr.Lee is an intensive care physician and mother to two children; her youngest child Josephine (Jo), has severe brain injury as the result of a complicated birth. In her beautiful, honest and must read book about the heartbreaks and triumphs in raising Jo. Catastrophic Rupture, A Memoir of Healing, Dr. Lee writes:
“Then while doing some online shopping one evening, my search for a ‘special needs swing’ returned a link to an online discussion forum for parents of children with special needs. I found the perfect swing (which Jo loves and uses to this day - the higher the better), but I also discovered a place where I felt I belonged - a community of moms struggling with the same fears and daily practice challenges, and rejoicing in the same seemingly insignificant triumphs as I was. All from the comfort of my living room….Through pictures, stories and comments I got to know these women and their children. Their advice guided me, their virtual hugs comforted me and their attitudes empowered me. Through these mothers’ eyes, I began to see my child and theirs differently… This network of women held tremendous wisdom, both ‘been there, done that’ practical answers and knowledge of hidden resources” (page 92-93).