On responsible sharing of stories of families with a seriously ill child.
The lives of families with a child with a life-limiting or life-threatening illness can be extremely demanding. In addition to securing treatment, families face social, financial, and educational difficulties and often experience a sense of social exclusion.
In this fragile and complex situation, families are often confronted with the question of whether to publish their story in the media—whether on the parents’ own initiative, motivated by the urge to “do something”, an effort to gain support, mobilize help, and secure funding, or at the request of care organizations aiming to raise funds, increase public awareness, or promote systemic change. When considering whether to publish a story, it is essential to recognize that the best interests of each child are to be prioritized over any other consideration, including over advocacy for children’s issues and the promotion of children’s rights.1
This set of concrete recommendations aims to strengthen the capacities of parents, children, and adolescents to make an informed decision about whether to publish their story and to better assess the potential impact of media coverage on a seriously ill child, themselves, siblings, and the wider family. For professionals,2 these recommendations provide guidance on how to handle these sensitive stories with the utmost responsibility while protecting the interests of families, recognizing that their role and responsibility extend beyond the publication of the story.
This set of recommendations was developed between June and October 2025 under the auspices of a working group addressing cross-cutting objectives within the framework of the implementation of the Concept of Care Provision for Children and Adolescents with Serious, Life-Limiting, or Life-Threatening Conditions and Their Families.
The introductory workshop, aimed at gathering input for the development of the recommendations, was attended by representatives of numerous organizations3 that provide direct care to families of children with life-limiting or life-threatening illnesses, support the development of children’s palliative care, act as major donors, or assist the families in such demanding situations with fundraising; the workshop was also attended by parents of seriously ill children.
The workshop generated numerous inputs, which were subsequently categorized, organized, and developed by members of the Subgroup for Communication into three sets of recommendations aimed at guiding all stakeholders safely through the process of deciding whether to publish a story. The June workshop also raised the issue of how media coverage affects caregiving teams. The authors aim to further address this issue and to provide caregiving teams with a tool that will help them better cope with the stressful situations that the publication of a story about a family in their care may bring.
The authors also prepared anonymized case studies illustrating what the publication of a story can mean for both families and the professionals who provide their care. The results of a survey conducted among parents and organized by the Vlček Family Foundation are also included.
We thank everyone for their cooperation,
The team of authors
1 Ethical reporting guidelines: Key principles for responsible reporting on children and young people. UNICEF, 24.9.2025 https://www.unicef.org/media/reporting-guidelines
2 The recommendations are intended for all professionals who come into contact, in the course of their work, with families of a child with a serious, life-limiting, or life-threatening diagnosis. These include professionals in fundraising and communications such as journalists as well as professionals providing direct care, such as doctors, nurses, social workers, psychologists, chaplains, and others.
3 Institut Pallium, Nadace rodiny Vlčkových, Zlatá Rybka, Výbor dobré vůle – Nadace Olgy Havlové, Česká společnost paliativní medicíny ČLS JEP, Česká pediatrická společnost ČLS JEP, Fakultní nemocnice Motol, ČAVO – Česká asociace pro vzácná onemocnění, Mobilní hospic Ondrášek, Aliance pro individualizovanou podporu, Asociace poskytovatelů sociálních služeb, energeia, Poradna Vigvam, Srdcem Robinson, Raná péče, Cesta domů, Dobrý anděl, Ústav lékařské etiky a humanitních základů medicíny 2. LF UK.
When you think about sharing your story
You may be considering sharing your story about your illness or your life on social media, creating a video, or responding to a media request. Here are a few important things to keep in mind before you proceed.
In recent years, there has been an increasing number of media stories about families with a child that has a life-limiting or life-threatening illness, including stories shared by the parents themselves. However, there is very little empirical data showing how parents perceive the impacts of such sharing. To address this gap, the Vlček Family Foundation, in collaboration with the research agency Behavio Labs, conducted an anonymous online questionnaire between July and September 2025 that was completed by 138 parents of seriously ill children.
The aim was to gain parents’ perspectives on why they choose to share their stories or not, and to identify the factors that contribute to making the process safe and respectful for families. The Vlček Family Foundation also sought to contribute, through this survey, to the initiative launched within the working group addressing cross-cutting objectives of the Concept of Care Provision for Children and Adolescents with Serious, Life-Limiting, or Life-Threatening Conditions and Their Families.
From the beginning, family members had different approaches to media coverage of their child’s story. The child had been diagnosed with Ewing’s sarcoma of the diaphragm with numerous metastases. One parent viewed media coverage as a way to “do something” – to gain support, preserve hope, mobilize help, and secure financial resources for the family. The other parent, however, felt under pressure, feared media attention, and longed to spend the remaining time with the child in a more intimate way, without public exposure. The child’s younger sibling, a preschooler at the time, also played a role in how the story was shared.
At the moment when the child’s condition deteriorated rapidly, the family had to cope not only with crisis care but also with pressure and stress related to external communication. Instead of being able to focus peacefully on their final shared moments, they experienced a sense of obligation to “say something” to others. The preservation of a vital space for intimacy and support was thus jeopardized during the most vulnerable period of their experience.
When deciding whether to make a story public, it is important to respect the opinions and needs of all family members and to seek consensus.
The field palliative care team was caring for a child diagnosed with a life-limiting illness in a family where, from the outset, the parents had held differing attitudes toward sharing their child’s story in the media. At times when full attention to the child’s needs and comfort was most critical, this disagreement repeatedly diverted focus from care, and much of the team’s psychological support efforts were directed at easing tensions between the parents. Following the child’s death, one parent immediately shared the news on social media, from which it was subsequently picked up and quoted by several media outlets.
This immediate reaction meant that some members of the team learned about the child’s death through the media, disrupting the usual process of internal communication within the team. To cope with the resulting emotional burden, the support of the team’s psychologist and supervision was necessary. Team members needed to share their thoughts and express their feelings so they could regain focus, continue their work effectively, and maintain both professional and personal stability.
The parent who shared the news in media was not fully aware of the impact it could have on others. Serious information should be communicated to those close to you thoughtfully and, whenever possible, in person.
Working with influencers is not uncommon in children’s palliative care and can bring a number of benefits to both sides, as well as some unexpected challenges.
For influencers, it can be challenging to understand how to work with families’ stories in an ethical manner. Some families wish to share their story, while others do not. In the social media environment, where emotional storytelling is the norm, it is easy to gain the impression that public sharing is the only way to help. There are no unified guidelines, and it often does not occur to influencers that by sharing – which they may see as supporting a good cause and their own brand – they might cross boundaries, act unethically, or compromise values such as the right to privacy.
In one particular case of collaboration, the influencer was not informed that the family and the organisation did not wish the story to be published in the media. As a result, a meeting with the family and the child was streamed publicly without prior notice. Despite the good intentions of the influencer and all stakeholders, the collaboration led to embarrassment, and the video was subsequently removed from social media.
Collaboration with influencers can be valuable if it is based on mutual understanding and trust. This is why it is worth investing time in shared preparation – for example, explaining the context of children’s palliative care, the specifics of communication with families, and the reasons why discretion is sometimes prioritized.
An 18-year-old patient with a fast-progressing illness expressed her wish “to leave something behind,” ideally in the form of a book. A paediatric clinic psychologist from the hospital support team assessed that there would not be enough time or strength to complete a book and offered a more realistic alternative: an empathically guided interview over which the young woman would have complete control.
To ensure a high-quality and dignified outcome, a communication expert specializing in children’s palliative care was invited to collaborate. Together, they prepared an audio podcast recording, followed by an interview published in a lifestyle magazine. The psychologist provided a sensitive framework and supervised the creation of a safe environment, the interview itself, and the overall process. She also contributed her perspective to both the podcast and the interview, offering listeners and readers important context for understanding this sensitive and demanding topic. The interview took place in the hospital, with the girl’s mother present, and the setting – including medical equipment such as an oxygen tank – was openly acknowledged.
To meet the expectations of a “major newspaper interview,” the team arranged for a professional make-up artist and photographer. A set of high-quality photographs became an important outcome for both the girl and her family. After being approved by all involved, some of the images were used to accompany the printed interview.
The make-up session, photo shoot, and interview were an exceptional experience for the girl, and the encounter brought her joy. All materials were approved by the girl and her mother without any time pressure; the content adjustments they requested were minor and were fully respected. The published interview received positive feedback. The young woman later told her psychologist how happy she was when a stranger who recognized her approached her and expressed appreciation for her bravery and the positive attitude she conveyed in the interview.
The patient died several months later.
The published interview and the audio podcast became the only public testimony of the young woman’s story and her approach to a severe illness. Thanks to the sensitive approach of the psychologist from her care team and the communication expert, the girl’s wish to share and inspire was successfully fulfilled while fully respecting her boundaries, privacy, and informed consent.
Despite a time-limited situation, the wishes of a seriously ill person can be fulfilled when empathy, expertise, and personal care come together. Sometimes, there is no need for grand gestures: a sensitive interview can be enough to provide a sense of meaning and leave the kind of legacy the person hopes for.
The interview with the child’s mother was initiated by the head of the hospice, whose staff had cared for the family during the child’s illness and supported them through the grieving process. The head of the hospice was also present at the interview between the mother and a representative of a foundation focused on supporting children’s palliative care. The aim of the interview with a representative of an aligned foundation was to share the parent’s personal experience and to help the public better understand what it means to accompany a seriously ill child and their family, as well as how meaningful and enriching such care can be.
From the perspective of a year later, the child’s mother said she was glad to have done the interview, while also expressing relief that it was over. It gave her a sense of meaning, especially knowing that sharing her experience may help other parents and raise awareness that children can be seriously ill and may die, and that there are institutions that support families in such situations.
Reactions to the interview were very positive, and the mother was happy with the result. She felt that the interview was conducted sensitively and professionally, and that the story was treated with dignity and respect. She also described that the most difficult part for her was repeatedly returning in her thoughts to the details of the illness and the loss, and being able to speak about it without crying. She considered the approach of the interviewer as very sensitive and professional, even in retrospect.
The mother mentioned that participating in the interview was a positive, albeit mentally very demanding, experience. She was aware that sharing her story required a great deal of internal preparedness and mental resilience. She considered it important to engage in such a project only when a parent feels ready and believes it may be beneficial to others.
Later on, the mother was invited to participate in the filming of a documentary about families who had used palliative care. She declined the offer, as she felt that returning to those memories would place too heavy a mental burden on her and could risk a recurrence of depression.
The interview with the mother confirmed that sharing the personal experience of losing a child can have a significant impact in raising awareness and, for some, may carry therapeutic value – provided it is conducted with respect, empathy, and in a safe environment. It also highlighted the importance of sensitive timing, an individual assessment of the parent’s mental preparedness, and choosing an appropriate form of sharing. As the mother said: “If you feel that it can help someone, then go for it. But you should have the courage, strength, and readiness so that it doesn’t overwhelm you again.”
This initiative was created within the framework of the working group for addressing cross-cutting objectives of the Concept of Care Provision for Children and Adolescents with Serious, Life-Limiting, or Life-Threatening Conditions and Their Families.
Within the newly created Communication sub-group, the theme was developed and recommendations were formulated by, among others:
Miroslav Čepický, Vlček Family Foundation
Monika Kofroňová, Institut Pallium
Zuzana Lebedová, Zlatá rybka
Eva Rysová, Institut Pallium
Barbora Steinlauf, Česká společnost paliativní medicíny