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Our Youth and Families Councils are vital for forming strategic improvement plans for the SJD Barcelona Children's Hospital.
As a hospital facility, we strive for healthcare excellence: a blend of comprehensive technical quality and compassionate human care. To reach these standards of excellence, we are constantly adapting ourselves to the needs of our patients, their families and also the needs of our staff. These people are vital in helping us improve our service offering.
The councils are ongoing participation initiatives aimed at improving the hospital and the patient/family experience, as well as maintaining an open dialogue with centre management, thereby having a significant impact on the centre's service strategy.
The progressive incorporation of these councils into hospital practice, while simultaneously putting greater focus on patients and their families sharing feedback with staff (through various means, such as surveys), has also been done in a way that complements the work of the Patient Experience team.
What are the main goals?
- To better improve our service offering in several transversal areas.
- To raise awareness both internally and externally.
- To act as a representative for the hospital and also for patients and families.
- To collaborate in education and training.
- To promote the protection of rights and responsibilities of patients and families.
- To work alongside centre management on strategic elements and work lines.
Families Council
Active since 2019, the Families Council is made up of 21 mothers and fathers of patients with high-complexity or rare diseases.
The council meets monthly to discuss various challenges in several intersecting hospital areas, such as care in the Accidents & Emergency Department, remote care provision, in-lab blood extractions, psychosocial care, the transition to adult hospital, coordination, treatment provision and communication.
It must be noted that professionals from the areas being discussed are present at sessions to listen to family experiences first-hand, so they can take the appropriate steps to improve.
On a more strategic note, the Families Council also actively takes part in the annual SJD director meeting, as well as in the Healthcare Hub trimester meetings, in which the Heads of Medicine, Nursing, Quality and Patient Experience, Planning, Data, and Digital and International Strategy are present.
Members of the council also act as representatives for families and for the SJD Barcelona Children's Hospital in education and awareness campaigns, as well as when recruiting new staff members.
"The diversity of opinions, experiences and points of view is enriching and, fundamentally, it gains strength when all parties strive for a common goal".
"Participating in the Council is an opportunity to give back for all that the Hospital has done and does for them. I am very proud".
"It helps us to fight for the rights of the most vulnerable".
"I can contribute to the construction of a health care model in which the patient is involved and co-responsible".
"Sharing expectations and suggestions with the Family Council is a wonderful experience and a great help in facing the daily challenge of providing the best possible care".
Youth Council
The first Youth Council meeting was held in 2010 and was active until 2015. Made up of 11 patients with chronic or rare diseases, their focus was the promotion and protection of the rights of children and teenagers in hospital, as per the 1986 European Charter for Children in Hospital. Thanks to their efforts, patients today are always accompanied by their parents, they can receive different pain relief methods, they are always able to play in the hospital and there are distraction activities available at all times. In addition, hospital spaces are designed and adapted to the needs of children and teenagers.
In 2019, a new Youth Council was formed that focuses on improving the hospital from their perspective.
In 2022, the third Youth Council was formed, made up of 11 youths with various conditions. In its monthly sessions, the current council focuses on raising awareness of the needs of children and teenagers, both in the hospital and outside in wider society. They are actively working on the implementation of a new care model for child and teenage patients.
"For me, it is an opportunity to help children who are going through the same things I went through".
"The Youth Council shows me that my opinion counts and does not remain in the pile of the forgotten ones".
"The Youth Council is a place where you feel comfortable and accompanied".
"Working with the Youth Council contributes to the design of more inclusive programmes tailored to their unique needs. This collaboration brings innovative ideas to improve our services and strengthens the links with the young community we take care of".
Families Council of the SJD Pediatric Cancer Center Barcelona
With the inauguration of the SJD Pediatric Cancer Center Barcelona in 2023, it was decided to found a dedicated group to help detect areas for improvement in this new facility. Made up of 17 mothers and fathers with experience in the paediatric oncology healthcare process, this council deals with interdepartmental care aspects such as care in the Accidents & Emergency Department, the outpatients process or psychosocial care. As with the Families Council, the Heads of the areas being discussed also actively participate in the sessions.
"With my participation in the Families Council, I seek to offer support and empathy to families going through such difficult times and also to contribute with my personal experience to improve the services and care that the Pediatric Cancer Center Barcelona offers to patients".
"For the care team, it is reassuring to have the Families Council's point of view and advice on key issues that impact the day-to-day lives of our children and adolescents at the Pediatric Cancer Center".
Impact
These councils, alongside other initiatives, permit the SJD Barcelona Children's Hospital to improve their comprehensive care model, which continues to grow and develop thanks to the needs of patients and their families being brought to light. The councils are heavily involved in the design of this care model, which also help us to cultivate a culture of compassion and involvement in hospital care provision.