Caring for families of children with disability in a time of epidemic: The EnFORCE project

During the first months of the COVID-19 emergency, we have started a telehealth program to promote and sustain the health and wellbeing of children with disability and their parents. This program - named the Engaging Families in the Online Rehabilitation of Children during the Epidemic (EnFORCE) - has now produced the first data and the findings are encouraging.

Figure A reports in red the percentage of primary caregivers experiencing specific COVID-19-related stressors. Figure B reports the score for specific parental worries: a, COVID-related worries; b, COVID-management challenges; c, COVID-information need; d, concerns for child continuity of care; e, lack of communication with specialists.

In the first published EnFORCE paper we report on the needs and emotional issues of main caregivers of children with disability during the lockdown period. This paper is published in Disability and Rehabilitation and suggests that worries about COVID-19 contagion and concerns for the child left without rehabilitation programs were the greatest sources of mental health burden for caregivers. The concerns related to the lack of continuity of care were significantly associated with caregivers’ reports of stress, depressive and anxious symptoms.

In the second EnFORCE paper published in Acta Paediatrica we report on the preliminary responses of parents to this telehealth interventions. The intervention was very well received, with a high percentage of adherence and participation and with reports of good effects for both parental psychological wellbeing and the continuous support to child rehabilitation and developmental achievements. Many parents asked to not discontinue this intervention which is still ongoing, consistent with the pandemic status.

Developing tools and interventions that specifically promote continuity of care should be a primary investment during these especially challenging days

It should be highlighted that granting continuity of care is not only a big issue in a time of epidemic and global health emergency. Families in rural areas, who live far from the main rehabilitation centers or have limited resources to travel may be challenged in obtaining full access to rehabilitation interventions. Promoting telehealth interventions may be a smart and effective to promote continuity of care and optimal family-centered care even in non-emergence periods.

We would like to highlight that families of children with disabilities risk to be a relevant portion of population that may bear emotional and psychological severe consequences during the present healthcare emergency and specific interventions are needed both on the clinical and policy levels.

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Full paper citations

Provenzi, L., Grumi, S., & Borgatti, R., & EnFORCE Group (2020). Alone With the Kids: Tele-Medicine for Children With Special Healthcare Needs During COVID-19 Emergency. Frontiers in Psychology, 11.

Provenzi, L., Grumi, S., Gardani, A., Aramini, V., Dargenio, E., Naboni, C., ... & Borgatti, R., & EnFORCE Group (2020). Italian parents welcomed a telehealth family‐centred rehabilitation programme for children with disability during COVID‐19 lockdown. Acta Paediatrica, in press.

Grumi, S., Provenzi, L., Gardani, A., Aramini, V., Dargenio, E., Naboni, C., & Borgatti, R., & EnFORCE Group (2020). Rehabilitation services lockdown during the COVID-19 emergency: the mental health response of caregivers of children with neurodevelopmental disabilities. Disability and Rehabilitation, in press.