As we return from time with family and friends over the Easter holidays (and at the time of writing the UK was in the midst of a mini heatwave!) it seems pertinent that we stop to think about the impact that living with rare conditions has on children and young people within the family setting. In particular, we’d like to share the top line results from a recent survey carried out by Rare Disease UK who looked at how children and their siblings were impacted by rare disease.
What sparked our interest in this area was that we saw a pattern of insights emerge through interviews and focus groups that was disease agnostic. Many people reported challenges were similarly aligned and if addressed, could make huge differences to peoples’ quality of life, adherence and health outcomes.
Although there are no panaceas, some of the challenges can be eased with digital patient support tactics, especially within the cohort of young people living with these conditions who may be more amenable to such support and in addition, certainly in the UK, policy changes through advocacy and influence which address the lack of joined up care.
Let’s consider below some of the insights below from children and their siblings. Your thoughts and comments are welcome.
Coordination of Care
The young people interviewed expressed negative opinions about the way in which their care was coordinated and they reported that they often had to attend multiples series of appointments with up to ten different Health Care Professionals (HCP’s). The young people reported an inconsistent level of medical knowledge of their rare condition dependent upon the HCP involved and the many miles needed to travel to appointments had an impact upon their energy and that of their families. Specialist units did exist but it was a “post code lottery” in terms of access to care across the UK.
Transfer to adult care – the teenage years
Whilst the period of adolescence is challenging to most, this period of transition can be further impacted by living with a rare condition. Children typically moved from paediatric to adult services and often found themselves on adult wards surrounded by people who had unrelated conditions. The job of educating new HCP’s began again as did the coordination of disparate service providers who are increasingly split across different specialisms. Young people often relied on online information sources and indeed, our research at Swii.ch shows that young people often use social channels such as Instagram and Snap Chat to link with others and to gain support from peers.
One of the biggest challenges identified by young people was the amount of school that was missed through multiple medical appointments that were often on different days with multiple specialists. Those interviewed explained that teachers often had a poor understanding of the rare conditions that pupils lived with and of the need for multiple appointments and days off school. Many stated however, that with the right information and explanation to schools the understanding increased although much of this information giving had to be carried out by the young person themselves or their families. Others mentioned specific initiatives that had been set up at educational establishments such as “escape cards” to allow pupils to leave the class room when necessary which allowed them to be taken seriously by school staff.
Many explained that support from the education and health and social care system was not able to be put in place until a formal diagnosis had been made which serves to highlight the anguish and stress caused to those who are navigating the diagnostic odyssey prior to diagnosis.
The role of siblings stands out in this survey which showed that they understood much about their brother or sister’s rare condition and often shared caring roles within the family. Siblings demonstrated emotional maturity, emotional empathy and compassion and often provided support during hospital visits but this was not without its physical or emotional challenges. Through their highly developed knowledge of the condition and its treatment, these children also showed a heightened awareness of wider societal issues around disability and illness and many of the patient engagement partners who we work with began their advocacy work through supporting siblings and family members in this setting.
The siblings who were surveyed also spoke of the many hospital visits their brothers or sisters undertook and sometimes they had to accompany the family which could be boring and interfere with school and homework. Hospitals offered little to do for those children who were accompanying others. The siblings described feelings of uncertainty and anxiety within the family and they were often left with other family members whilst their parents attended hospital appointments with the sibling with the rare condition. This could result in them missing out on special events such as birthdays and holidays.
The young people were intensely aware of the worry and stress that dealing with the condition caused their parents and this in itself was worrying for them and those who took part in the project who sometimes they stated that they wished their sibling was “normal”.
But despite the challenges that having a brother or sister with a rare disease can bring, siblings were grateful for the time spent with them and for those mature enough to reflect upon and articulate their views, they valued the unique learning experience that living with a rare condition brought and were proud and grateful for what they continued to learn.
In summary, it is clear that young people with rare conditions, their siblings and families live with huge challenges which have a widespread impact upon the family dynamic and unit. Many of these are as a result of the very nature of rare conditions which are multi factorial and present with complex co-morbidities within fragmented healthcare systems that endeavour to support them.
Although there is no immediate panacea, simple digital and peer support in the form of support groups (both face to face and within the digital space) may play a small part in supporting people facing isolating challenges. This coupled with education and support for teachers, educators and employers could also go towards easing this burden and even raise the awareness of the extreme lengths that families go to support and care for children with rare conditions.
This blog was based upon data extracted from the Rare Disease UK Children and Young People report accessed at https://www.raredisease.org.uk/wp-content/uploads/sites/7/2018/04/understanding-children-and-young-peoples-experiences-website.pdf