Psychosocial Considerations in Children with Rare Diseases: A Critical Analysis

Source: BELZER, L. T.; WRIGHT, S. M.; GOODWIN, E. J.; SINGH, M. N.; CARTER, B. S. Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action. Children , [S .l.], v. 9, n. 933, June 21, 2022. Available at: https://doi.org/10.3390/children9070933. Accessed on: 27 Feb 2024…

🌍 This article analyzes rare diseases (RD) and their psychosocial impact on children, families and health teams.

Why it matters: It reveals the complexity of care and the need to focus on children with DR, as well as highlighting the importance of evidence-based care and optimal practices.

🧠 What’s going on:

The research emphasizes the importance of the child’s point of view, although the experiences of caregivers are often better documented.
It emphasizes the need for multidisciplinary care and coordination between different care sectors.

🔍 Between the lines:

There is a lack of attention to the personal experiences of children with RD.
The importance of including psychosocial considerations in the care of these children is highlighted.

🏃 In a nutshell:

The results show the need to integrate proven practices and optimal resources in the care of children with RD, their families and health teams.

🖼️ The big picture:

It proposes actions to improve quality of life and promote evidence-based care for children with RD, their families and healthcare teams.

💭 O ur opinion:

The article reinforces the importance of a child-centered approach, considering all aspects of their well-being amid the challenges of DR.

Highlights

Children with Rare Diseases (RD) often have chronic and complex medical conditions, requiring a complicated care environment with several health professionals.
This review examines RDs and their psychosocial ramifications for children, families and the healthcare team.
Existing knowledge about children with RD describes the psychosocial experiences of their families and caregivers [16,17], but the child with RD must remain the focal point.
This review has endeavored to provide a thorough examination of psychosocial considerations for the child with RD.
The results examine DR and its psychosocial ramifications for children, families and the health system.
By summarizing the literature through a purposeful sampling of scientific literature, recommendations are given for integrating what is known of current best practices, accessing optimal resources, and proposals formulated as ‘calls to action’ to raise the quality of life and promote evidence-based care for children with RD, their families and healthcare teams.

The article in questions and answers

What are some of the main psychosocial considerations that children with rare diseases may face?

Children with rare diseases can face several important psychosocial considerations, including:

Diagnostic odyssey: The process of identifying the genetic basis of a rare disease can be emotionally challenging for families, leading to uncertainty and stress.

Isolation and Loneliness: Children with rare diseases can feel isolated because they are one of the few individuals with a specific diagnosis, leading to feelings of loneliness.

Complex medical needs: Children with rare diseases often have complex medical conditions that require extensive care, which can affect their daily functioning and quality of life.

Stigma and lack of understanding: Children with rare diseases can face stigma in various contexts, such as education, employment and the community, due to a lack of awareness and understanding of their condition.

Family dynamics: The presence of a child with a rare disease can have a significant impact on family dynamics, leading to changes in the roles, responsibilities and emotional well-being of family members.

Uncertainty about prognosis and treatment: Due to the rarity of their disease, children with rare diseases and their families may face uncertainty about the course of the disease, available treatments and long-term outcomes.

2. How can healthcare providers and caregivers better support children with rare diseases from a psychosocial perspective?

Healthcare providers and caregivers can support children with rare diseases from a psychosocial perspective in the following ways:

Holistic Care Approach: Adopting a holistic care approach that considers not only the child’s medical needs, but also their psychosocial well-being, emotional health and quality of life.
Communication and Education: Provide clear and open communication with the child and their family about the rare disease, treatment options, prognosis and support services available to empower them with knowledge and understanding.
Psychosocial support services: Offer access to psychosocial support services such as counseling, mental health professionals, support groups and social workers to help children and families deal with the emotional challenges of living with a rare disease.
Coordination of Care: Ensuring coordinated care between multidisciplinary health teams to respond to the complex medical and psychosocial needs of children with rare diseases, promoting continuity of care and support.
Empathy and Understanding: Demonstrate empathy, understanding and sensitivity to the unique experiences and challenges faced by children living with a rare disease and their families, fostering a supportive and compassionate care environment.
Advocacy and Empowerment: Defending the needs and rights of children living with rare diseases and empowering families to actively participate in decision-making processes regarding their care, treatment and support services.
By implementing these strategies, healthcare providers and caregivers can improve the psychosocial well-being of children with rare diseases, promote resilience and improve the overall quality of life of the child and their family.

3. What are some of the recommendations and calls to action proposed in the article to improve the well-being of children with rare diseases?

The article provides several recommendations and calls to action to improve the well-being of children with rare diseases:

Improved support pathways: Proposing the need for improved care and delivery systems to promote support in various contexts for children living with rare diseases and their families.
Integration of psychosocial care: advocate for the integration of psychosocial care as a standard part of routine care for children living with rare diseases and their families, to fill the gaps in psychosocial health support.
Interdisciplinary Collaboration: Emphasize the importance of interdisciplinary collaboration and networking between healthcare providers, patient organizations and funding agencies to simplify access to psychosocial care and support services for families of children with rare diseases.
Family-Centered Care: Promoting family-centered care approaches that consider the psychosocial needs of the entire family unit, recognizing the burdens faced by families in balancing care responsibilities with other aspects of life.
Advocate for policy changes: Call for policy changes and investments in robust paid family leave policies, childcare programs tailored to children with rare diseases, and paid family care to alleviate the impact of chronic health needs on families.
Improving accessibility: Recommend improving accessibility in communities, improving wheelchair-accessible transportation and making community spaces and activities more inclusive for children living with a rare disease, regardless of disability status.

These recommendations and calls to action aim to address the multifaceted needs of children living with rare diseases and their families, advocating for comprehensive support, better care and policy changes to improve their well-being and quality of life.

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