The SAMPI Project - Sand Play, Arts, Music, Photovoice and Interviews
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Introduction
The term "rare disease" (RD) refers to a collection of approximately 10,000 known rare diseases. These diseases are called "rare" because they affect a small percentage of the population. About 80% of rare diseases are genetic, meaning gene changes cause them, and around 70% of rare diseases manifest in childhood.
The SAMPI project (which stands for Sand Play, Arts, Music, Photovoice, and Interviews) used creative approaches to better understand the experiences of children living with rare diseases. Through activities like sand play, art, music, and interviews, the project explored these children's daily lives and challenges.
SAMPI Project: Giving Voice to Children and Their Families with Rare Diseases was funded by the Children's Health Foundation under Grant [RPAC17-05].
Project Outline
Why is the SAMPI project important?
Living with rare and complex conditions is incredibly challenging for both children and their parents. Still, very little published research truly captured what these families went through daily. This study aimed to fill that gap by exploring and understanding the experiences of children with rare diseases who had to regularly visit hospitals, as well as the experiences of their parents who cared for them.
We wanted to know what it was like for these children to deal with frequent hospitalisations and medical appointments and how it affected their daily lives. We also wanted to understand the day-to-day challenges that parents faced while caring for a child with a rare chronic illness. By gaining a deeper understanding of these experiences
The SAMPI project has yielded crucial insights into the lives of children with rare diseases, providing healthcare providers a better understanding of their patients' needs and experiences. More importantly, these findings can be directly applied to design creative arts-based interventions, enhancing the care and support for children with rare diseases in paediatric healthcare settings.
Project Outline
This study employed multiple phases; a qualitative enquiry was employed to explore and understand children's and young people's experiences and perceptions of living with rare diseases through research participants’ artistic expression in drawings, Sand Play, Art and interviews. A national survey was employed to understand the disease, working with healthcare professionals, emotional issues, and financial needs. This collaborative approach ensures that all stakeholders are part of this interdisciplinary research effort to improve the lives of children with rare diseases.
Objectives:
To explore children’s and young people’s and their family's experiences of living with a rare disease
- To explore the factors that enhance, inhibit, and impact the lives of children and young people with a rare condition.
- To explore children and young people's understanding of a rare disease.
- To explore children’s experience of engaging with the hospital system.
- To explore day-to-day parenting of a child and young people with a rare disease.
- To examine knowledge and understanding of rare diseases from the perspective of families.
- To examine the supportive care needs of parents of a child with a rare disease in the Irish health system.
Project Outputs
Frameworks were developed to analyse the Sand Play, Music and Art data to analyse the themes emerging from each activity. Common themes across all modalities included "Fitting in versus feeling different," "Meaningful Relationships," and "Family and Friends." These themes highlight important aspects of the children's experiences living with rare diseases. The study emphasises the necessity for comprehensive support systems to address the multifaceted challenges faced by parents of children with rare diseases, highlighting the importance of understanding these needs for adequate healthcare and social support measures and interventions.
Research Poster
Download research poster to view summary findings.
Publications
Somanadhan S, O'Donnell R, Bracken S, McNulty S, Sweeney A, O'Toole D, Rogers Y, Flynn C, Awan A, Baker M, O'Neill A, McAneney H, Gibbs L, Larkin P, Kroll T. Children and young people's experiences of living with rare diseases: An integrative review. J Pediatr Nurs. 2023 Jan-Feb;68:e16-e26. doi: 10.1016/j.pedn.2022.10.014. Epub 2022 Nov 25. PMID: 36443134.
Karpavicute et al. (2021) The Use of Music for Children and Adolescents Living with Rare Diseases in the Healthcare Setting: A Scoping Review Study Protocol, HRB Open Res. 2022 Apr 29;4:52. doi 10.12688/hrbopenres.13280.2. PMID: 36330535; PMCID: PMC9607902.
Karpaviciute, S., Somanadhan, S., McNulty, S., & Kroll, T. (2022). A Scoping Review to Map the Evidence on the Use of Sandplay to Understand the Subjective Experience. Journal of Symbols & Sandplay Therapy, 13(1), 35-100. doi:10.12964/jsst.22002
Sinnott, S., Buckle, N., Sweeney, A., Karpavičiūtė, S., O’Neill, A., Kroll, T., & Somanadhan, S. (2024). The impact of music on health and wellbeing of children and young people with rare diseases in healthcare settings: A scoping review. British Journal of Music Therapy, 0(0). (opens in a new window)https://doi.org/10.1177/13594575241258820
Buckle N, Rogers Y, O'Toole D, McNulty S, Kroll T, Gibbs L, Somanadhan S. A qualitative exploration of children's lives with rare diseases. Child Care Health Dev. 2024 Jul;50(4):e13294. doi: 10.1111/cch.13294. PMID: 38924454.
"The use of art as a creative research method to understand psychosocial care needs for children with rare diseases is cited as follows: Buckle N, O'Neill A, Sweeney A, et al. The use of art as a creative research method to understand psychosocial care needs for children with rare diseases. Therapeutic Advances in Rare Disease. 2024;5. doi:(opens in a new window)10.1177/26330040241265449
Dr Sandra McNulty, Principal Clinical Psychologist (Specialist) Child Vision
Project Team
Dr Atif Awan
Co-Principal Investigator
Consultant Nephrologist CHI at Temple Street
Dr Sandra McNulty
Senior Clinical Psychologist
Aimee O'Neill
Arts Therapist
National Children's Hospital Tallaght University Hospital
Alison Sweeney
Music Therapist
Shirley Bracken
Children's Nurse
CHI at Temple Street
Yvonne Rogers
Senior Clinical Psychologist
CHI at Temple Street
Doris O'Toole
Children's Nurse
CHI at Temple Street
Caroline Flynn
Play Specialist
Dr Bryan Lynch
Consultant Neurologist
CHI at Temple Street
Dr A. Monavari
Consultant in Metabolics
CHI at Temple Street
Niamh Buckle
Research Summer Scholar
UCD School of Nursing, Midwifery and Health Systems
Shannon Sinnott
Research Assistant
UCD School of Nursing, Midwifery and Health Systems
Simona Karpaviciute
Post-Doctoral Research Fellow
UCD School of Nursing, Midwifery and Health Systems
Expert Panel
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Professor Thilo Kroll
Professor of Health Systems Management
HRB PPI Ignite Lead, UCD School of Nursing, Midwifery and Health Systems
My Research Profile
Professor Philip Larkin
Professeur Ordinaire Directeur Académique
Université de Lausanne
Dr Lemuel Pelentsov
University of South Australia
