top of page
  • mlincoln214

Parenting a Child with a Rare Disease: Isolation

A challenge that comes with parenting a child with a rare disease – especially a condition that requires a great deal of medical management – is isolation. Sometimes it’s physical isolation, not being able to interact with people, and sometimes it’s a feeling of being disconnected from friends and family. Over the last few years, researchers have identified strategies to help parents of chronically ill children feel more like they have a support network outside their homes.

Some rare diseases can require an intense level of attention from a child’s caregivers. In these cases, parents may find themselves relatively confined to their homes, performing life-saving tasks for their children or providing much needed comfort for a young person in pain or emotional distress. This time commitment precludes small indulgences like coffee with friends, social events. Movies or date nights. Spending the vast majority of their lives in their houses, going out merely to run errands, creates a claustrophobic emotional effect. A 2020 article in The Journal of Pediatrics presented data from multiple studies that demonstrated that parents of chronically ill children suffered from higher rates of depression and anxiety and significant health problems, including cardiovascular disease, that can contribute to greater mortality than parents of healthy children.

Even for those not physically “trapped” in their homes, taking care of a child with a rare disease is psychologically isolating. Friends and other family members, or parents of healthy children, have no concept of the fears and anxiety these parents feel for their children’s future, or the grief of witnessing all the normal fun of a childhood they are missing. Others my empathize, but they cannot fully share the experience, and this disconnect is isolating.

In recent years, some new internet-based interventions have shown promise to alleviate the emotional effects of caregiving for these parents. Youcan read more about these success stories at and


1. Cohn LN, Pechlivanoglou P, Lee Y, Mahant S, Orkin J, Marson A, Cohen E. Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis. J Pediatr. 2020 Mar;218:166-177.e2. doi: 10.1016/j.jpeds.2019.10.068. Epub 2020 Jan 6. PMID: 31916997.

2. Sherifali D, Ali MU, Ploeg J, Markle-Reid M, Valaitis R, Bartholomew A, Fitzpatrick-Lewis D, McAiney C. Impact of Internet-Based Interventions on Caregiver Mental Health: Systematic Review and Meta-Analysis. J Med Internet Res. 2018 Jul 3;20(7):e10668. doi: 10.2196/10668. PMID: 29970358; PMCID: PMC6053616.

3. Ploeg J, Ali MU, Markle-Reid M, Valaitis R, Bartholomew A, Fitzpatrick-Lewis D, McAiney C, Sherifali D. Caregiver-Focused, Web-Based Interventions: Systematic Review and Meta-Analysis (Part 2). J Med Internet Res. 2018 Oct 26;20(10):e11247. doi: 10.2196/11247. PMID: 30368439; PMCID: PMC6229518.

22 views0 comments

Recent Posts

See All


It was a full circle moment, the kind that somehow makes you feel a little bit vindicated. As if the cosmos is admitting that all of the struggles that you and your family have endured is seen and per

Coming Soon: Guest Blogs

The mission of Pathways To Trust is to help create allyships in the rare disease community. We facilitate relationship building between patients, patient advocates, healthcare providers, health system

Selfcare is Healthcare, Part II: Sleep

Sufficient sleep is vital for everyone’s health, but many people struggle to get enough. Many rare disease patients live with chronic, debilitating pain which can make it nearly impossible to fall asl


bottom of page