Parents and caregivers of children who have medical complexity (CMC) are – according to research from the University of Rochester Medical Centre – more likely to report experiencing poor or fair mental health, as well as struggling to find help in their local communities.
CMC are defined as the one per cent of children who have the most complex medical conditions, typically living with multiple chronic conditions and developmental disabilities, using medical devices like tracheostomies and using healthcare services frequently.
Given the substantial needs of these children, caregivers face significant challenges when it comes to raising their child and completing other family obligations and responsibilities.
As such, identifying strategies to fall back on that can help them manage and adapt to this inherent stress that is sure to accompany this is important – and the university has been working on uncovering useful methods with which to achieve this, providing a roadmap for developing more effective support programmes for families that are often overlooked.
3 critical strategies
The researchers carried out in-depth qualitative interviews with 14 caregivers in diverse family situations and analysed how they successfully navigate their circumstantial challenges.
Finding acceptance and meaning
Caregivers were better able to adapt to roles by finding acceptance and meaning in the caregiving experience, celebrating non-traditional milestones and integrating the role of being a care provider into their identity.
Establishing practical systems, teams & services for care
Those families that successfully established comprehensive care networks (including home nursing, clinical teams and community services) reported feeling more supported and less isolated.
Self-care
Those parents that were able to develop self-care, mindfulness, emotional sharing and coping strategies reported experiencing reduced stress levels.
Lead author of the study Dr Nathaniel Bayer said: “Finding time for yourself while caring for your child is extremely challenging. Parents are creative. Many find ways to incorporate self-care within their routines, such as listening to music, dancing, crafting, or some other activity while they engage in caregiving activities.”
However, the study also found that there were significant gaps in infrastructure that gave parents and caregivers the support they need, with many saying that they struggle to build support systems while maintaining employment.
This serves to highlight the unmet need for workplace policies to support financial stability and sustainable employment for this demographic.
Dr Bayer continued: “Parents and caregivers are spending a tremendous amount of time, effort, money, and energy trying to support themselves and their families while navigating the system.
“These families are at risk of not having the time and resources to accomplish other important activities like developing a support community and engaging in coping strategies for themselves.”
The study concluded that there is an urgent need for caregiver support programmes and institutional peer mentorship within the healthcare system, as well as improved integration of adaptation support in clinical care pathways. Policy reforms were also highlighted as a way to set up more caregiver-friendly workplace policies and environments.
