The psychosocial impact of childhood dementia on children and their parents: a systematic review

Orphanet Journal of Rare Diseases

Research

Gail Hilton¹  Kristina L. Elvidge¹  Megan Maack¹  Kenneth Nunn²  Gareth Baynam³  Kaustuv Bhattacharya⁴  Sarah Grattan⁵  Suzanne M. Nevin⁶  Leigh Donovan⁶  Christina Signorelli⁶  Brittany C. McGill⁶  Lauren Kelada⁶  Claire E. Wakefield⁶  Michelle A. Farrar⁷  Naomi T. Katz⁸ 

[1] Childhood Dementia Initiative, Sydney, NSW, Australia;Department of Psychological Medicine, Children’s Hospital at Westmead, Sydney, NSW, Australia;Faculty of Health and Medical Sciences, Division of Paediatrics, University of Western Australia, Western Australia, Australia;Rare Care Centre, Perth Children’s Hospital, Perth, WA, Australia;Telethon Kids Institute, Perth, WA, Australia;Genetic Metabolic Disorders Service, Sydney Children’s Hospitals’ Network, Randwick and Westmead, Australia;Faculty of Medicine and Health, Discipline of Genomics, Sydney University, Westmead, Australia;School of Clinical Medicine, UNSW Medicine and Health, Discipline of Paediatrics and Child Health, Sydney, Australia;School of Clinical Medicine, UNSW Medicine and Health, Discipline of Paediatrics and Child Health, Sydney, Australia;Behavioral Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, Australia;School of Clinical Medicine, UNSW Medicine and Health, Discipline of Paediatrics and Child Health, Sydney, Australia;Department of Neurology, Sydney Children’s Hospital, Randwick, Australia;Victorian Paediatric Palliative Care Program, Royal Children’s Hospital, Melbourne, VIC, Australia;

关键词: Child;    Neurodegeneration;    Dementia;    Psychosocial;    Healthcare;    Parent;   

DOI  :  10.1186/s13023-023-02859-3

 received in 2022-11-18, accepted in 2023-08-20,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundChildhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia.MethodsWe used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents’ healthcare experiences, psychosocial impacts, and information and support needs.ResultsNineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child’s rare, life-limiting, and progressive condition. Psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child’s condition trajectory.ConclusionThis review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families.

【 授权许可】

CC BY   
© Institut National de la Santé et de la Recherche Médicale (INSERM) 2023

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