🇵🇱 This study explores the experiences of Polish caregivers of children with rare diseases (CRD) in relation to health and social services. It used a mixed method with a questionnaire and thematic analysis.
- Why it matters: The findings show the urgent need for a more integrated, family-centered approach to improve care and support for CRD families.
🧠 What’s going on:
- The average diagnostic journey for CRD was 1.7 years and involved consulting around 4.8 doctors.
- 88% of parents used the internet as their main source of information about their child’s illness.
🔍 Between the lines:
- 66% of caregivers were dissatisfied with financial help and 65.4% with government support.
- 60.9% were dissatisfied with the availability of specialized care.
🏃 In a nutshell:
- Caregivers face a long and challenging diagnostic and therapeutic journey.
- Many report a lack of adequate emotional and financial support.
🖼️ The big picture:
- There is an urgent need for policies that prioritize coordinated care and emotional support for CRD families.
- Improving access to modern diagnostics and innovative treatments is crucial.
💭 O ur opinion: The effective implementation of the National Rare Disease Plan is vital to meet the needs of caregivers and their families.
The article in questions and answers
What were some of the key findings regarding the duration of the diagnostic journey for children with rare diseases in the study?
In the study, some of the key findings on the length of the diagnostic journey for children with rare diseases include:
- The length of the diagnostic journey ranged from 0 to 18 years, with an average of 1.7 years.
- The average number of doctors consulted before receiving the correct diagnosis was 4.8.
- The study revealed that the internet was the main source of information about the children’s illness for caregivers.
These findings highlight the challenges faced by caregivers in the process of diagnosing children with rare diseases and the importance of improving access to accurate information and adequate support during this journey.
What were the main complaints voiced by caregivers regarding the accessibility of healthcare and social services for children with rare diseases?
The main complaints from caregivers regarding accessibility to health and social services for children with rare diseases include:
- Dissatisfaction with the lack of financial help and support from government and social institutions.
- Difficulty in accessing medicines for rare diseases.
- Criticism of the lack of information provided by doctors about the children’s illness, including practical guidance on how to deal with it.
- Dissatisfaction with the availability of specialized care and the support offered by health professionals.
- Feeling of lack of empathy on the part of doctors and health professionals.
These complaints highlight the challenges faced by caregivers in accessing adequate health and social services for children with rare diseases, underscoring the need for improvements in the coordination of care and the support offered to families.
How can the findings of this study help inform policy and practice to better support caregivers of children with rare diseases in the future?
The results of this study can significantly contribute to informing policies and practices aimed at improving support for caregivers of children with rare diseases in the future in a number of ways:
- Identifying Gaps: The study highlights existing gaps in the health system and social services for children living with rare diseases, providing insights into areas that need urgent improvement.
- Unmet Needs: By highlighting the main unmet needs of caregivers, such as access to medical treatment, psychological support and care coordination, future policies can be targeted to address these issues.
- Improving Communication: The lack of adequate information provided by health professionals was a problem identified. Therefore, policies can be implemented to improve communication between doctors and caregivers, ensuring that they receive the necessary information.
- Financial support: Dissatisfaction with the lack of financial support highlights the need for policies that guarantee access to medication and treatment without imposing a significant financial burden on caregivers.
- Coordination of Care: The lack of care coordination was a challenge pointed out. Therefore, policies can be developed to improve integration between the different care and service providers, ensuring a more holistic and effective approach.
In summary, the results of this study can serve as a basis for the implementation of more effective policies and practices aimed at improving the support and quality of life of caregivers of children with rare diseases, addressing their needs and challenges in a more comprehensive and efficient way.
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