The COVID-19 pandemic has drastically altered the landscape of healthcare, especially for children with medical complexity (CMC) and their family caregivers (FCs). The recent study, "Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study," provides valuable insights that practitioners can leverage to improve their skills and the care they provide.
The study highlights several key challenges FCs faced during the pandemic:
- Lack of Access to Healthcare Services and Increased Hospital Restrictions: FCs noted that essential services like speech-language pathology and occupational therapy were either unavailable or avoided to minimize virus exposure. Hospital visitation policies also limited support, making it difficult for FCs to manage hospital appointments alone.
- Negative Clinical Interactions and Communication Breakdowns: Many FCs reported insensitivity and poor communication from healthcare providers, which exacerbated the stress of caregiving.
- Virtual Care Use: Despite challenges, the shift to virtual care had significant benefits, such as reducing the need for travel and providing a sense of connection to healthcare teams.
- Pandemic’s Impact on FC Well-Being: The physical and mental toll on FCs was profound, with many experiencing sleep deprivation, chronic stress, and isolation due to reduced nursing support and stringent social distancing measures.
- Financial Strain: The financial burden of caring for CMC increased during the pandemic, with many FCs facing reduced income and higher out-of-pocket expenses for medical supplies and equipment.
- Balancing Multiple Roles: FCs had to juggle numerous roles, including caregiver, nurse, advocate, and parent, often without adequate support.
- Inadequate Homecare Nursing: The pandemic worsened the already existing shortage of trained homecare nurses, leading to increased stress and physical exhaustion for FCs.
Recommendations for Practitioners
Based on these findings, here are actionable recommendations for practitioners:
- Promote Virtual Care: Encourage the use of telehealth services to minimize the need for in-person visits, reducing the burden on FCs and mitigating exposure risks.
- Enhance Communication: Develop strategies to improve communication with FCs, ensuring they feel heard and respected. This can include training for healthcare providers on the specific needs of CMC and their families.
- Support Access to Services: Advocate for policies that ensure continuous access to essential healthcare services, even during crises. This includes telehealth options for therapies like speech-language pathology and occupational therapy.
- Provide Psychosocial Support: Implement programs that offer mental health support to FCs, recognizing the significant emotional and physical toll of their caregiving responsibilities.
- Financial Assistance: Work with policymakers to streamline funding processes and increase financial support for FCs, covering essential medical supplies and services.
- Improve Homecare Nursing: Advocate for better training and retention strategies for homecare nurses, ensuring they are well-equipped to handle the complex needs of CMC.
Encouraging Further Research
Practitioners should also consider engaging in further research to continually improve care for CMC and their families. Understanding the long-term impacts of the pandemic and identifying effective interventions will be crucial in developing robust support systems.
To read the original research paper, please follow this link: Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study.
