Begonya Nafria Escalera
Begonya Nafria
Share4Rare Coordinator

What is it like to have a sibling with a rare disease?

Girl and boy hugging on the countryside
Siblings of children with rare disorders are also caregivers and must often deal with responsibilities that are not usually attributed to people their age. In this article, we review the struggles these children must face and we invite you to attend a new Share4Rare seminar covering this subject that will be held on October 18th at the Children’s Hospital Sant Joan de Déu Barcelona.

Taking care of a loved one who is chronically ill, having a highly disabling pathology such as a rare disease, can be as rewarding as it is difficult and stressful. This kind of diseases entail for caregivers both physical distress (reduced rest time, physical load caused by mobilizations, etc.) and psychological difficulties, that can be even more stressful even than the physical issues. The uncertainty regarding the diagnosis, the evolution and the prognosis of the disease, and also the serious lack of information (according to Eurordis there is only scientific evidence for 10% of rare diseases) are some of the circumstances that generate severe emotional stress to caregivers.

In many families, caregivers are not just the parents. Siblings (older or younger) are an important point of support and collaboration in the caring process, and therefore we should also consider them within the group of caregivers.

Did you know that there is a whole population of young children who take care of someone with a serious chronic disease? Have you thought about what it is like for a child or teenager to take care of an ill brother or sister?

In Spain, for example, there are around 3 million people affected by a rare disease. If we consider that roughly 80% of these disorders affect the pediatric population, to a greater or lesser extent there will be a considerable percentage of families that may have another child besides the child affected by the rare disease.

What does taking care of a sick sibling mean for a child?

There are several aspects associated with being a sibling caregiver that have been identified and addressed by experts in the field:

  • Being a caregiver is physically exhausting. In some situations the child must help bathing, dressing, lying down and getting out of bed, going to the bathroom, feeding or giving the medication to the sick sibling.
  • Being a caregiver is emotionally exhausting. All the previous tasks create an unnatural a responsibility for people of young age, and therefore, they are eager to generate depressive feelings derived from hard questions, such as: Why does my brother/sister have this disease? Why this happened to me and my family? What will the future bring? etc.

 

  • Poor school performance. Combining study time with care time is not easy. On certain occasions, it can affect school performance. When young caregivers are interviewed, many of them point out that while they were at school they could not stop watching the cell phone in case there was an emergency and they received a call from their parents.
  • Isolation. Not being able to share experiences with other brothers who live in our same situation can lead to problems of interaction and exchange amongst equals.
  • Reduced leisure time. Some children feel that their free time is affected by the disease of their sibling, which also makes them feel inferior to their peers who do not live the same situation. Also, many family free time activities may not be carried out due to the limitations of the brother's or sister’s illness.
  • Causes constant concern. Many young children who are caregivers fear what would happen to them if something happened to their sick loved one. This situation brings permanent anguish, which is rather common amongst minors and adults who take care of a sick person, but in the case of the siblings this will go along with them throughout their whole life, conditioning and determining many aspects related to their personality and the construction of the personal identity that is developed during adolescence.

Seminar “Let’s take care of the siblings of children with rare diseases”

Informative session about siblings and rare diseases

In line with the past Share4Rare informative seminar #Share4Research that took place on July 18th at the Children’s Hospital Sant Joan de Déu Barcelona, will offer the second edition on October 18th 2019 in the same location, and this time the siblings of children affected by rare diseases will be the focus theme. In "Let’s take care of the siblings of children with rare diseases" we will talk about the role played siblings in taking care for sick children and how the disease affects their lives.

To do so, we will have several speakers and frontline experts giving us some insights on this delicate subject and helping us understand and appreciate all those little ones who take care of their siblings. The event will be conducted in Spanish:

 

Programme:

  • 18:00 Welcome Conference - Share4Rare: global support network for patients affected by rare diseases.  
    • Begonya NafriaPatient Engagement in Research Area Coordinator FSJD 
    • Sara Hernández, Share4Rare Project Manager FSJD  
  • 18:20 Expert workshop - Children with very sick siblings: psychosocial support.
    • Daniel Toro Pérez, Psychologist, Paediatric Palliative Care Unit Hospital de Sant Joan de Déu  
    • Soraya Hernández Moscoso, Social Health Worker, Paediatric Palliative Care Unit Hospital de Sant Joan de Déu
  • 18:45 With the look of a child. The look of the siblings of children who are different.
    • Ángeles Ponce, Family Therapist. Expertise in families with disabled children and in grieving processes
  • 19:15 The point of view of the young expert patient: psychological aspects of leukemia.
    • Daniel Marín, KIDS Barcelona
  • 19:30 Closing of the day

 

DATE: October 18th 2019 

TIME: 6:00 - 7:30 PM

PLACE: Auditori Dr. Plaza, Hospital Sant Joan de Déu

ORGANIZES: Fundació per a la Recerca Sant Joan de Déu

Free registration here. You can download the full program of the event here.

For further information: info@share4rare.org

 

Topics
Disease management
Psychosocial support
Share4Rare