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Author Spotlight: Capturing Infant-Caregiver Interactions Through Synchronized Multimodal Data Collection
Published on: May 31, 2024
"I need everybody to understand that he's a whole child": A mixed-methods study exploring caregivers' experiences
Emily J Jensen1, Sarah N Douglas1, Sarah Khan2
1Human Development and Family Studies, Michigan State University, 552 W. Circle Dr., East Lansing, MI 48824, USA.
Insights
Caregivers of children with medical complexities (CMC) face significant challenges in healthcare access and daily care. This study highlights their experiences and suggests improvements for better support systems and medical care for CMC.
Area of Science:
- Pediatric healthcare
- Caregiver-child health dynamics
- Medical complexity research
Background:
- Children with medical complexities (CMC) require frequent medical care and substantial caregiver support.
- Limited research exists on the holistic medical care experiences of caregivers for CMC.
- Understanding these experiences is crucial for improving care for both the child and the caregiver.
Purpose of the Study:
- To understand the experiences and challenges of caregivers for CMC.
- To explore the impact of COVID-19 on this population.
- To gather caregiver suggestions for enhancing medical care for CMC.
Main Methods:
- Explanatory sequential mixed-methods study.
- Quantitative data collected via surveys (n=149).
- Qualitative data gathered through in-depth interviews (n=26) with a subset of survey participants.
- Data analyzed using descriptive/inferential statistics and thematic/content analysis.
Main Results:
- Frequent need for medical care and specialist access.
- Emotional and demanding nature of caregiving for CMC.
- Risk of pediatric medical trauma and stress.
- Unique challenges posed by COVID-19.
- Difficulties navigating medical insurance.
- Impact of provider and system quality on care experiences.
- Personal caregiving challenges, coping strategies, and advocacy efforts.
- Caregiver-identified suggestions for care improvement.
Conclusions:
- Findings indicate a need for enhanced practices and policies to support CMC and their families.
- Healthcare professionals can learn from caregiver experiences to improve care delivery.
- Opportunities exist to better integrate caregiver perspectives into pediatric healthcare.
Purpose:
Children with medical complexities (CMC) access medical care at high rates and rely heavily on caregivers for daily care. Little research has explored the medical care experiences of caregivers of CMC to understand the holistic impact on the caregiver and their children. The goal of this study was to understand the experiences and challenges faced by CMC and their caregivers, explore the impact of COVID-19 on this population, and highlight the suggestions caregivers have to improve medical care for their children.
Design And Methods:
We conducted an explanatory sequential mixed method study utilizing surveys (n = 149) and in-depth interviews (n = 26) with a subset of survey participants. Descriptive and inferential quantitative analysis strategies as well as qualitative thematic and content analysis techniques were used to analyze the survey and interview data.
Results:
Our findings included insights such as the frequent need to access medical care/specialists, the demand and emotional process of caring for CMC, the risk of pediatric medical trauma and stress, the unique impact of COVID-19 on this population, challenges navigating medical insurance, and the impact of the medical provider and system qualities on overall experiences. We also had findings related to the personal challenges associated with caregiving for CMC, caregiver coping and advocacy, and suggestions for improving care for CMC.
Conclusions:
These findings suggest a need for improved practices and policies to support CMC and their families.
Practice Implications:
This study identifies opportunities for healthcare professionals to learn from the experiences of caregivers of CMC.
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