What is “Taking care of you” and who makes up the Paediatric Palliative Care team?
The “Taking Care of You” programme is the Paediatric Palliative Care programme of the Fundación Valle del Lili Hospital in Cali-Colombia. Our goal is to support families with children diagnosed with complex or chronic diseases that impact their quality of life or threaten the child’s life. It consists of a comprehensive transdisciplinary team that addresses all aspects of patients and their families, including paediatricians with training in paediatric palliative care, psychology and psycho-oncology, nursing, social work, counselors, or spiritual guides. Additionally, there is support from other clinic cross-functional teams such as rehabilitation, respiratory therapy, speech therapy, and nutrition. https://valledellili.org/multimedia/programa-cuidando-de-ti/
Mission of the “Taking care of you” Programme
The “Taking care of you” programme team aims to improve the quality of life for patients and their families facing life-threatening diseases in children. This is achieved through comprehensive support from the diagnosis of the disease to the end of life and beyond, focusing on preventing, identifying, and managing physical, emotional, spiritual, and social suffering.
Vision of the “Taking care of you” Programme
To establish ourselves as one of the best Paediatric Palliative Care programmes in the country and Latin America within 5 years, through a comprehensive and humanised model of care in PPC (Paediatric Palliative Care).
Values of the “Taking care of you” Programme
The programme places a high value on providing compassionate care to both the patient and their family. It emphasises comprehensive support, ethical considerations as the foundation for decision-making processes, assertive communication with patients, families, collaborative teamwork, inclusivity, and a commitment to sustainability.
Those Eligible for Paediatric Palliative Care
All paediatric patients who have a diagnosis of a disease that threatens the child’s life or quality of life, or that classifies the child as having a disability are eligible.
Examples include patients with cancer, complex heart conditions, nephropathy, cystic fibrosis, muscular dystrophies, orphan diseases, severely ill or challenging-to-manage premature infants, among others.
Other Relevant Processes Managed by the Programme
- We provide daily medical care for patients in palliative or terminal phases, as well as compassionate and humanised end-of-life care.
- We support coping processes for complex diagnoses and seek to improve the quality of life throughout the disease.
- We assist in interdisciplinary decision-making processes for case analysis from ethical and care perspectives.
- We support the management of pain and other physical, emotional, social, or spiritual symptoms.
- We support complex coordination processes for health care and/or home care needs.
- We promote empowerment processes for the child and their family through educational strategies such as integrative therapy sessions or our emblematic activity, “Celebrating Life.”
Projects and relevant moments
1. Family empowerment days. Our annual flagship activity with families is called “Celebrating Life” where we honour the lives of our children. Every year we meet at the Cali Zoo to meet our programme’s mascot, the big lion “Valiente”, who reminds our children of strength and courage in the processes of illness.
https://valledellili.org/multimedia/celebrando-la-vida-cuidando-de-ti/
2. Integrative therapy days. Through meditation, yoga, reiki, slow and guided breathing, mindfulness, sound therapy with Tibetan bowls, we help our patients and families to reduce pain and anxiety.
3. Art therapy: Art is a mechanism to express the emotions and feelings that arise from chronic disease processes. Through creativity, ingenuity, colors, materials and sharing with other patients and families, we support their therapeutic process.
4. “Lilac Code” grief programme. Although in many cases we cannot cure, we can always provide relief, even at the end of life, when the paediatric palliative care programme helps to find physical, emotional, spiritual and social comfort. Through a standardised guide to humanised end-of-life care, we impact the moment of greatest pain in a parent’s life. In this process, we also create memories, a ritual that we perform with parents and health workers to honor the life of our child who passed away. Later, we provide care to our grieving families, through follow-ups with psychology and our grief workshops where families share their experiences.
5. International academic and research meetings. Through our international networks, we hold the international symposium on paediatric palliative care every year and this year, we also held the EPEC-Paediatric Latin America train the trainers. Joining forces with more friends and colleagues, as well as creating networks, helps us to expand knowledge and education in paediatric palliative care.
The Taking Care of You programme is dignity and hope.
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