Support provided for critically ill children and their families - Strategies for Aiding Sick Children and Their Familial Circle in Critical Situations
In the realm of child health, it's a challenging feat for families when their kids fall seriously ill. In Hesse, three children's palliative care teams spread across North, Central, and South Hesse strive to offer support to ease the burden. Their mission primarily involves alleviating troublesome symptoms, like breathing difficulties or pain, in the child while bolstering the family. This is achieved through specialized outpatient palliative care (SAPV), allowing incurable children to stay comfortably at home with their loved ones until their journey's end.
Kassel is home to an upcoming unique offering with the "Little Giants House." Parents will learn how to care for their ailing child at home within this setting, acting as a vital bridge between hospital-based care and home care. Thomas Voelker, head of the "Little Giants North Hesse" children's palliative care team, has shared concerns about the dwindling availability of outpatient care, especially for children and adolescents, due to the shortage of specialized professionals. This problem is exacerbated by the rising number of chronically ill children who now live longer due to advancements in medical and nursing support.
At the "Little Giants House," eight families will be accommodated and guided in caring for their child from late 2026. Through the guidance of an interdisciplinary team of nurses, doctors, psychologists, and therapists, parents will learn to manage care requirements such as using aids efficiently and dealing with situations when outpatient children's nursing services are unavailable. Admission to the house can be arranged after a hospital stay or even directly from home.
According to Voelker, around eight million euros are being allocated for the construction of the house, with the Hesse government contributing two million euros and the city of Kassel providing a building cost subsidy of 500,000 euros. The offer is intended for affected families across central Germany, from Hannover to Koblenz and from Bielefeld to Jena. The house is set to address a gap in the current care landscape, as it will serve as the first building in Germany dedicated to transition care.
The Hesse Hospice and Palliative Care Association is optimistic about the project in Kassel, with Bettina Mathes, the representative for hospice work, stating that the house will contribute significantly to the care of children and adolescents in Hesse. Despite this, the state health department in Hesse does not report any indications of a shortage of skilled workers in the field of children and youth palliative care.
Specialization is crucial in dealing with the wide array of diseases faced by these palliative care teams, which includes rare illnesses like childhood dementia, inherited metabolic disorders, heart defects, organ failures, brain damage, and cancer. The greatest challenge is often the societal taboo surrounding death and dying. Families are often unaware that palliative care isn't confined to the final stages of a life-threatening illness; teams strive to relieve pain, reduce breathlessness, curb fear, provide human contact, and create meaningful experiences throughout the illness.
Financial burdens are prevalent among families in which both parents are unable to work due to their child's illness. To assist with aspects of care not covered by health insurance, such as psychological and social work within the team, children's palliative care teams rely on donations. The South Hesse Children's Palliative Care Team in Frankfurt explained that many families find the support offered to be greatly relieving once trust is established, and the teams are grateful for the contributions from people engaging in various projects to support the cause.
- The community policy should consider the rising number of chronically ill children, necessitating more vocational training for professionals in the field of children and youth palliative care.
- In the realm of science, research on childhood dementia, inherited metabolic disorders, and other rare illnesses faces a significant challenge due to the societal taboo surrounding death and dying.
- Sleep patterns can be affected by chronic diseases, and workplace-wellness programs should address this concern to promote overall health and wellness.
- Medical conditions like cancer, respiratory conditions, and digestive health issues require ongoing vigilance and treatments, making vocational training in these areas critical for healthcare providers.
- Eye health, hearing, and skin-care are integral to a child's quality of life, and should be included in the comprehensive care provided by children's palliative care teams.
- Family-health is deeply impacted when a child is seriously ill, and therapies and treatments for conditions like autoimmune disorders, mental health issues, and mens' health should be considered in family care plans.
- Nutrition plays a crucial role in weight management and cardiovascular health, both essential aspects of health and wellness for children with chronic diseases.
- Aging is accelerated in children with certain medical conditions, and treatment plans should consider the long-term effects on aging.
- In addition to children's health, women's health and sexual health should also be prioritized in family care, particularly for mothers who may face unique challenges while caring for a sick child.
- Parenting a child with a serious illness is emotionally taxing, and supportive services like psychological and social work are essential for the well-being of the family.
- Financial burdens can be alleviated through donations, allowing children's palliative care teams to provide comprehensive care regardless of the family's financial situation.
- Neurological disorders and skin-conditions can significantly impact a child's quality of life, and effective treatments and therapies are necessary to improve their living conditions.
- Medications like CBD may offer relief for some children with chronic diseases, and should be considered as part of the holistic care plan.
- As the number of children with chronic diseases continues to rise, it's important to educate the public about the importance of children's palliative care and the role it plays in improving family health.
- Medicare provisions should be reevaluated to ensure they adequately cover the extensive care requirements of children with chronic diseases, alleviating some of the financial burden on families.
