Caregiver burnout, gaps in care, and COVID-19

A.T. had been a part of our practice for many years, coming in for regular health checks related to his autism and moderate intellectual disability. A.T. lived at home with both parents, attended school in a small, supported classroom, and participated in therapy and community-based day programs for respite. A.T. often used physical behaviour (eg, tapping, pulling) to communicate his need for social attention from his parents.^1,2 However, when A.T. hit puberty, his behaviour became more volatile and emotional. This coupled with his greater physical size increased the threat of harm. Medication stabilized his mood, with modest effect. Referrals made for publicly funded in-home support had limited value owing to lack of parent follow-through. Consultation with school staff was effective, particularly when A.T. had one-on-one support and access to frequent social attention and consistent structuring of the day. However, his attendance at school was variable. In contrast, at home, his parents reported that things were “manageable,” but they were often quiet, with a flat affect, during visits. A.T.’s mother opened up to the pediatric health care team, sharing guilt about talking about challenges (eg, “a mother should not talk this way about her son”). She also expressed shame and frustration: “I know what they [home support] want me to do and I can’t do it.”

The coronavirus disease 2019 (COVID-19) pandemic furthered the challenges experienced at home, reduced access to school and community supports, and increased unpredictability for both A.T. and his parents. A.T.’s behaviour became more physically aggressive and volatile, even outside the household. His parents did not inform the clinical team about his worsening behaviour or seek support until A.T. started hitting strangers at the bus stop and police were called. Eventually A.T.’s family hit a crisis point of nearly daily episodes of aggression, including his mother suffering a concussion as a result of A.T.’s behaviour. This culminated in A.T. being dropped off in the emergency department and hospitalized indefinitely awaiting an out-of-home placement.

While serious concerns have emerged during this pandemic about the interrupted developmental trajectory for children with autism spectrum disorder,^3,4 it is imperative that we acknowledge the gap in the system for families of older children and youth with autism and intellectual disability whose mental health and behaviour have deteriorated. During this pandemic, youth with autism and intellectual disability have experienced drastically altered routines that have increased their anxiety and rigidity. Caregivers have reduced capacity as they work from home and do not have the same external supports. A.T.’s case reveals early warning signs for family physicians and pediatricians to identify families at risk of crisis at this time.

In reviewing A.T.’s medical record, there were many entries about childhood aggression toward his caregivers, and recommendations to access community-based parenting programs to address these challenges. Unfortunately, there was minimal information documented regarding the engagement with or the effectiveness of such programs from the perspective of A.T.’s caregivers. Most programs require caregivers to adapt, change, and respond differently to their children.^1,5 What happens when caregivers’ capacity is reduced because of financial or family stressors, language or cultural barriers, or poor mental or physical health? A cultural lens is important when considering the experience of stigma and shame.⁶ For this family, they were newcomers to Canada and visible minorities. Caregivers can also become immobilized by shame and guilt when not able to create the desired changes suggested by professionals. Over time, these stressors contribute to caregiver burnout.

As A.T. grew bigger and stronger, caregivers were unable to follow through with the strategies provided to them when he was younger. Their fear that he would hurt the therapists coming to the home and the shame about his behaviour prompted them to decline further support. It was only when the behaviour escalated during the COVID-19 lockdown and spilled over to a public domain, that the family disclosed A.T.’s persistent aggression and the effects on their mental health and safety.

After further investigation, incidents were identified at school toward teachers, and calls to 911 had been occurring when A.T. was agitated. Caregivers did not know how to pursue further assessment and help for A.T.

A.T.’s case illustrates gaps between school, medical, and crisis services, especially for caregivers who themselves might be experiencing stress and burnout. In the developmental service sector, agencies do support the family unit in behaviour management and respite, but none are mandated to address or given explicit training in the evaluation of caregiver burnout.^7,8 The Children’s Aid Society (CAS) also supports families who are struggling, but they might not be called until there is a crisis and might only be able to intervene if a child is at risk.⁵ A.T. was also at the transitional age between child and adult sectors. Pediatric scope of practice is limited to patients younger than age 18, and families might not have accessed a family physician to continue care. A common period of stress for caregivers is between the ages of 16 and 25, and this is the highest risk time period for an individual with a developmental disability to develop mental health concerns.^9,10 Pediatric specialists might conduct behaviour assessments but lack expertise in evaluating adult capacity and wellbeing. Adult-based services in mental health might be available to caregivers, but the 2 systems of care have no formal connection. This led to fragmentation in services for A.T.’s family and might have contributed to challenges engaging with needed services.

A.T. stayed in-hospital for 3 months and was discharged to a group home environment funded by CAS, with one-on-one, on-site support 24 hours a day. With this level of support, within another 3 months, he had a considerable reduction in aggressive behaviour and was in school full time. We worked with the group home to wean him off all medication this past year. A.T. has shown an increase in skill development (able to do his own laundry, learned to use a computer to call family members). He has also developed social relationships (made his first friend outside of school, reconnected with an older sibling, video calls with parents daily). Six months after his placement, CAS was able to transfer care to the adult support system for developmental disabilities. His mother recently called our office and explained how this process had “saved 2 lives.” She shared having had thoughts of dying for herself and A.T. during the period leading up to his hospitalization and believed these feelings had resolved knowing that her son was safe, well cared for, and thriving in his new placement