What It Means to Be a 'Good Parent' as Described By Caregivers of a Child With Medical Complexity
Mentor 1
W. Hobart Davies
Start Date
28-4-2023 12:00 AM
Description
There has been limited research looking at the way caregivers of children with medical complexity (CMC) cope with emotions, stress, and burnout from the constant providing of daily medical care, attention, and psychological toll. CMC are a group of pediatric patients who require extensive healthcare service needs because of chronic conditions and fragile health. Milwaukee Collaborative for Resilience and Emotional Wellness Science (Milwaukee CREWS) had hour-long interviews with primary caregivers who utilize an outpatient Complex Care program to manage appointments, improve communication between specialist doctors and non-medical services, help the coordination of care, and overall support the families to develop individualized care plans. The qualitative data was analyzed using Interpretative Phenomenological Analysis to find common emergent themes derived from the overall superordinate themes. One of the superordinate themes throughout the interview was caregivers striving to be a good parent when caring for a CMC. This included managing and attending to their child’s complex needs, advocating and adapting to the child's needs, and nurturing the child's emotional well-being. The results have provided insight into what the caregivers of CMC experience in their day to day and allowed caregivers to feel understood. It also allows medical providers to identify and intervene when the CMC caregivers need support in supporting their child. Future research on the emotional impact of primary caregivers could include a larger sample of families or the investigation of the experiences of caregivers of adults with medical complexity.
What It Means to Be a 'Good Parent' as Described By Caregivers of a Child With Medical Complexity
There has been limited research looking at the way caregivers of children with medical complexity (CMC) cope with emotions, stress, and burnout from the constant providing of daily medical care, attention, and psychological toll. CMC are a group of pediatric patients who require extensive healthcare service needs because of chronic conditions and fragile health. Milwaukee Collaborative for Resilience and Emotional Wellness Science (Milwaukee CREWS) had hour-long interviews with primary caregivers who utilize an outpatient Complex Care program to manage appointments, improve communication between specialist doctors and non-medical services, help the coordination of care, and overall support the families to develop individualized care plans. The qualitative data was analyzed using Interpretative Phenomenological Analysis to find common emergent themes derived from the overall superordinate themes. One of the superordinate themes throughout the interview was caregivers striving to be a good parent when caring for a CMC. This included managing and attending to their child’s complex needs, advocating and adapting to the child's needs, and nurturing the child's emotional well-being. The results have provided insight into what the caregivers of CMC experience in their day to day and allowed caregivers to feel understood. It also allows medical providers to identify and intervene when the CMC caregivers need support in supporting their child. Future research on the emotional impact of primary caregivers could include a larger sample of families or the investigation of the experiences of caregivers of adults with medical complexity.
