Our Researcher in Focus for May is Dr. Amanda Fitzgerald, Associate Professor/lecturer in the School of Psychology and co-founder of the Youth Mental Health lab, at University College Dublin. Amanda is funded through the National Children’s Research Centre Paediatric Research Project Grant Scheme for her project “Supporting families affected by adolescent idiopathic scoliosis”.
Adolescent Idiopathic Scoliosis (AIS) involves abnormal curvature of the spine and is one of the most common orthopaedic conditions affecting young people. It occurs in approximately 1-3% of adolescents, more often in girls. It can significantly alter appearance, causing asymmetries associated with the back, shoulders, ribcage, hips, breasts, and overall posture. As Amanda explains “AIS is the most common spinal condition seen in paediatric orthopaedics and there is currently no known cause. Girls are twice as likely to develop AIS, and the condition is typically detected in the early teenage years around the onset of puberty. Usually first detected by the adolescent, parent, or their general practitioner, the appearance changes associated with AIS are often the first noticeable sign. The spinal curvature can lead to rotation of the ribcage, unlevel shoulders and hips, and asymmetries of the back and chest”.
Treatment options for adolescents are dependent on the severity of the spinal curvature. As Amanda explains “While minor spinal curves are kept under observation, moderate curves may be treated conservatively with an orthotic brace. For adolescents whose scoliosis progresses severely, spinal fusion surgery is considered to partially correct and prevent progression of the spinal curve. Spinal fusion surgery for AIS is considered one of the most invasive elective procedures performed on children and it is estimated that about 10% of AIS patients will reach the stage of surgical consideration”.
While treatment for AIS remains focused on minimising the physical symptoms, there is increasing interest in the psychosocial implications of AIS. In addition to the physical burden, young people with AIS can experience several psychological and social challenges. As Amanda explains “Adolescence is an important period of physical, psychological, and social development for all young people, and being diagnosed with a chronic health condition such as scoliosis at this time is understandably a challenging experience for young people and their parents. The physical changes by the spinal curvature are particularly difficult to manage at this time when appearance-related pressures are heightened. Concerns have been raised in previous research that AIS can negatively impact the psychosocial well-being of patients, including issues such as body image disturbance, eating disorders, anxiety and mood disorders, and social problems”.
Parents whose children are diagnosed with AIS can also experience significant psychological challenges. These include helping their child to cope with the condition, managing the progression of the spinal curve, and making important decisions regarding treatment which may include spinal surgery. “The well-being of parents of adolescents diagnosed with AIS is also a primary concern, as new challenges are introduced to the parenting role. Supporting parents throughout their adolescents’ treatment is a key consideration to promote optimal outcomes for scoliosis patients and deliver family-centred care”
Despite the psychological challenges facing adolescents with AIS and their respective families, there remains a limited amount of research seeking to understand the lived experience of these patients and their parents.
The aim of Amanda’s research project is to investigate the lived experience of adolescents diagnosed with AIS, and their parents, in order to better understand the psychosocial impact of AIS and identify how supports for patients and their families can be improved. “This research project will explore the psychosocial implications of living with AIS in order to identify support needs and inform the care of this patient group”. This projects is also supported by an Irish Research Council Postgraduate Scholarship awarded to Gillian Motyer, a PhD student who works under the supervision of Amanda.
To investigate the lived experience of patients and parents, Amanda and Gillian are performing qualitative interviews with a group of adolescents with AIS attending Children’s Health Ireland at Crumlin, and their parents. The study explores themes such as appearance concerns, emotional well-being, and psychosocial adjustment following a diagnosis of AIS among young people. Interviews with parents explore themes such as a parents’ experiences and support needs related to their child’s AIS. The finding from interviews with adolescents with AIS are currently being used to develop a questionnaire which will assess psychosocial well-being among a larger group of adolescents with AIS.
Through these studies, Amanda and Gillian will be able to produce recommendations to inform the care, and the provision of supports and resources for young people with AIS and their parents. This research will also heighten awareness of the impact that AIS can have on young people and their families.
Gillian recently made a video with the Children’s Medical and Research Foundation, Crumlin describing her research.
Additional information on Amanda and Gillian’s research can be found through the following links:
UCD Profile Pages
To get in contact about this ongoing research, please email firstname.lastname@example.org