STaRS -Siblings Together are Stronger Vs 1
Research type
Research Study
Full title
A participatory research project to explore how siblings of children with life-limiting conditions wish to promote their own welfare and wellbeing.
IRAS ID
287607
Contact name
Helena Dunbar
Contact email
Sponsor organisation
De Montfort University
Duration of Study in the UK
1 years, 1 months, 30 days
Research summary
This study focuses on the siblings of children with life limiting conditions, aged 11 - 14 years. The rationale for this focus being these children due to their family situation face daily adversity as they support their family with a child who has a life limiting illness.
This study is primarily a qualitative study adopting participatory research methods. The qualitative data is complimented by some psychometric data that gives insight into the children's baseline wellbeing and wellbeing post activity.
Twelve teenage siblings of children with life-limiting conditions, will be drawn from Leicester city’s diverse BAME population with NHS and tertiary service support in identifying suitable families.
The research activity will adopt a two phased data collection approach. The first phase being to involve the children in focus group activity exploring how they promote their own welfare and wellbeing and how they perceive their own and their family support can be strengthened.
A second phase of participatory research activity will then be used to put them at the heart of this enquiry and knowledge generation, giving them opportunity, in fun ways, to explore and identify how the helping strategies they presently use to promote their wellbeing and resilience can be shared with other children in similar situations as themselves. Information learned will then be co-produced and collated by the young people with adult support from the researchers and supporting university students into a STaRs supportive package for siblings of children with life limiting conditions aged 11-14 years.
Finally in phase 3 volunteers from the 12 participants will add the final touches to their co creation, developing a prototype which will then be disseminated and presented to their families, health professionals and to other associated parties.
Summary of Results
In September 2020 Dr Helena Dunbar and Dr Tania Hart secured a Burdett Trust for Nursing grant to carry out their Siblings Together are Stronger (STaRS) research study. This study commenced, on 1st Dec 2020 and focused on the teenage siblings of children with life limiting conditions.Siblings of children with life limiting conditions have been referred to in the literature as forgotten. Many of them experience a disparity in parental attention and have a sense of invisibility. Plus, they often experience feelings of guilt and self-blame because they are the healthy child in the family, often repressing their emotions and to avoid upsetting their parents they are often forced to ‘grow up’ too early, to become more self-sufficient. Moreover, many siblings take on the role of young carer for their sibling brother or sister, often meaning that they lose out on playdates, sleepovers, trips out and fun with their friends. The place they describe and want as home is overtaken by supplies, equipment, professional visits, and carers.
The aim of this participatory research project was to explore, through the lens of teenage siblings of children with life-limiting conditions how they wanted to promote their own welfare and wellbeing and highlight their concerns, worries, needs and requirements.
With support from colleagues within the NHS and voluntary sector, the aim was to recruit 12 young siblings to take part in a study which used creative, age-appropriate activities, combined with conventional focus group questioning.
Following ethical approval in May 2021 recruitment began. The initial face to face workshop (workshop 1) was held on Saturday 11th September 2021. This was supposed to be the first phase of the project recruitment, however, it proved to be a lot more difficult than expected, out of 9 children who consented, only 4 turned up on the day. The research did however proceed as planned. Two young DMU university student volunteers helped the researchers to bridge the adult/teenager gap and enhance the light-hearted focus group discussion. All focus group activity was based around creative activities that aimed to help reflect on the siblings’ lived experience and promote discussion related to their own welfare and wellbeing. The creative activities used were making a family shield and participating in a graffiti wall activity.
A second workshop recruited 5 further children, total 9 siblings. The implications of Covid19 whereby these families had shielded during the pandemic due to the vulnerabilities of their child with LLC might have been one reason for recruitment difficulties. Also many of these families found it difficult to commit to the practicalities of workshop attendance. Often parents and children consented to participate in the research, but when it came to attending the workshops, several factors impeded them from attending i.e., family emergencies arose with the child with LLC, parents were unable to commit to the time to bring their well child to the workshops because of their 24/7 caring responsibilities for their child with LLC.The 9 siblings of children with LLC who participated in this study demonstrated they possessed a wealth of knowledge about their brothers and sisters condition, about life at home and the challenges and joy that having a sibling with a life-limiting conditions brings. The data gathered suggested that siblings of children with LLC faced unique challenges whereby they voiced their difficulties and needs very insightfully. They described freely, their complex lives, by depicting it in their artwork and engaging in discussion. What was learnt from this study’s participants was that they coped resiliently with the family adversity they faced and their caring responsibilities. They did however struggle with how different their lives were to that of their peers. They also worried about their sibling when they were very sick or in hospital. They reported, that it was during these times they felt most unsupported because their parents often did not have the capacity to emotionally support them, because of having to prioritise their sick sibling. They therefore frequently had to cope in difficult times alone and would often worry and struggle with symptoms of anxiety. The children did however report that one way of making their lives easier was if their schools had a better understanding and awareness of the challenges they faced and their life differences. Their perception being that this understanding would enable them to obtain the learning and pastoral support they required and better connect them to their teachers and possibly to their peers.
The psychometric data, obtained from the children at commencement of the research, related to their Emotional Intelligence (EI) (The Trait Emotional Intelligence Questionnaire) and their resilience, (Adolescent Short Form and The Child & Youth Resilience Measure Revised (CYRM – R), confirmed these children possess above average resilience and possess remarkable levels of Emotional Intelligence, possibly because they feel they must cope, and be brave for not only their unwell sibling but also for their parents. An important factor promoting their resilience was having strong family connection. For example, when taking part in one creative activity that involved developing a family shield with a family moto, many of the children’s moto placed an emphasis on family unity i.e., ‘Teamwork ‘Team (names family surname)’ and ‘Never Give Up’ and ‘Fire and Water are Stronger together’
Presently this pilot study’s findings cannot be generalised to a larger population of children with siblings with LLC, however this study did provide a rare opportunity for the brothers and sisters of children with LLC to tell their story.
The initial grant proposal outlined one of the project’s key outcomes was to co-create with the young siblings a prototype support package which, with the securing of additional funds, could be later piloted and evaluated by rolling it out more extensively via nurses to other siblings of families with LLC children. Whilst the STaRS participants did suggest a support package would be very helpful, especially aimed at schoolteachers, the problem was that the support package they recommended was a digital animated package. Costing was sought from an organisation to develop a short animation package, containing rich information conveying key advice to teachers about how to better support this population of school children. However, the cost of developing a protype either in paper format or digital format was not within this project’s budget allocation.
The findings suggest there is a gap in LLC sibling support at school, whereby they sometimes require more assistance at school. Teacher awareness of the siblings difficulties is a crucial first step in promoting school awareness so that teachers can take simple steps to support these children academically and emotionally. STaRS researchers have commenced this school awareness building exercise by arranging to speak at educational conferences and promoting this study’s key research methods to schools and the services that support children with LLC via a purposefully designed PDF flyer. This flyer designed by ‘Scientia’ will help to communicate key findings to a very broad and diverse none health audience in a new, easy-to-understand format, therefore reaching a whole new audience.
During the research study Dr Helena Dunbar was successfully appointed to the position of Director of Service Development and Improvement for the UK National Charity for Children with palliative care needs, Together for Short Lives. Helena will use her connections to ensure that the results of the STaRS project are disseminated amongst professionals working across the palliative care sector.
To date the study results have been disseminated at three conferences with a final pending
July 2023 The European Conference on Education. London. Live Steam presentation Professor Tania Hart. Submission Title: Ensuring the ‘Glass’ Children Become Visible: Reporting the Findings of the STaRS (Siblings Together Are Really Stronger) Research Study.
September 2023 Sebda International Conference – Global Solutions to Working with Vulnerable Children and Young People. Submission Reporting the findings from the STaRS (Siblings Together are Really Stronger) research project, which explored how the wellbeing of siblings of children with life-limiting conditions can be promoted.
November 2023 Association for Paediatric Palliative Medicine Nov 2023 Poster presentation STaRS (Siblings Together are Really Stronger) research study.
March 2024 RCPCH Conference Building a Bright Future Together Oral Presentation Listening to the voice of siblings - a participatory study exploring the experiences of siblings of children with life-limiting conditions. Awaiting outcome of submission Jan 2024
In addition Our article has been written but is in the process of being peer reviewed for the Wiley Journal - Child and Adolescent Mental Health, with the following impact scores Cite Score (Scopus) 5.6; Journal Citation indicator 0.9; Journal Impact factor 6.1.
Overall this study has had the following impact:
o Siblings of children with LLC had a rare opportunity to meet with other sibling children whereby time together; sharing common experience, enabled them to form friendships, and to learn that their experiences are not unique, but also shared by others in a similar position to themselves and therefore they are not alone.o The STaRS research activity ensured the voice of a rarely heard small population of children was heard. The aim was to understand more fully their lived experiences and perspectives so that this newly acquired knowledge is disseminated locally and nationally. The result of broader dissemination being, that the STaRS study findings now have the potential, when acted upon, to strengthen the psychosocial support well siblings of children with LLC and their families need.
o The findings suggest there is a gap in LLC sibling support at school, whereby they sometimes require more assistance at school. Teacher awareness of the siblings difficulties is a crucial first step in promoting school awareness so that teachers can take simple steps to support these children academically and emotionally.
o Dr Dunbar’s move to a senior position at Together for Short Lives is a platform to disseminate the findings more widely but also with additional funding progress this vital work in the future.
The UK national charity for families with children with LLC; Together for Short Lives (TfSL) will support the dissemination of the findings of this study. This is because TfSL work relates to caring for the wider family of children with LLC and this includes their siblings. Dr Dunbar in her new senior role with TfSL will use existing channels and forums to ensure that the study findings are both seen and heard across the palliative care sector. The study will be shared across the following networks and forums:
• Presentation at a forum for the leads of the 15 Children’s Palliative care networks across the UK
• Presentation at the Leaders of Care forum that is aimed at the Directors of clinical care across the 54 children’s hospice services in the UK
• Executive summary printed in the E-Care exchange newsletter which is disseminated across the 1000+ members of Together for Short lives
• Presentation at joint research group between Together for Short Lives and the Association of Paediatric Palliative Care MedicineAs part of the ongoing strategic development for the organization Dr Dunbar has also identified the need for ongoing development of sibling support. Building on the lessons learnt from this study TfSL will seek further funding to develop a new sibling support service which will include the development of an animation presented by siblings themselves which tackles the ‘big questions’, this study’s finding support, for example, -
“I’m worried about my parents/sibling…”
“Who else can I talk to?” “I feel lonely but don’t have anyone else to talk to…”
“What will dying be like for my sibling?”
“What will happen after they die?”This animation will ensure that siblings’ stories are both seen and heard. It will be co-created with siblings and will offer an easy to access resource that allows both adults and children a starting point to consider how they can respond to the needs of children with a brother or sister who has LLC and who will die in childhood. It is therefore important that these children’s have their experience and their emotional world, heard, valued and held, in order for them to experience that their thoughts and feelings matter.
On evaluation all (100%) of the siblings who took part said they really enjoyed the work they undertook with us, giving us full marks on an emoji scored evaluation card.
REC name
East Midlands - Nottingham 2 Research Ethics Committee
REC reference
21/EM/0100
Date of REC Opinion
4 May 2021
REC opinion
Favourable Opinion