SEARCHSYSTEMATIC_REVIEWpediatrics, neurology

systematic_review·pediatrics, neurology, psychiatry, family medicine, systematic review·PMC10486052

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

Orphanet Journal of Rare Diseases · 15 authors, 11 centres

AI SUMMARY

FIDELITY 100%

This summary was generated by AI from a single paper. It has not been reviewed by a clinician and is not clinical advice. Verify against the source before acting on it.

AGENT 01 · STRUCTURED SUMMARY

TRACE TO SOURCE

“

TL;DR

Parents reported manifold psychosocial challenges and a critical need for integrated family-centred psychosocial supports throughout their child's condition trajectory.

Full summary

542 CHARS

Studies were assessed using the QualSyst scoring system (mean quality index 0.91 for quantitative, 0.94 for qualitative). Results were synthesised into three thematic categories: parents' healthcare experiences, psychosocial impacts, and information and support needs. Psychosocial challenges encompassed physical, economic, social, emotional, and psychological implications. A critical need was identified to prioritise access to integrated family-centred psychosocial supports throughout distinct stages of the child's condition trajectory.

STUDY TYPE

systematic_review

SPECIALTY

pediatrics

SUMMARISED BY

AI pipeline

FIDELITY CHECK

100% · A

ORIGINAL PAPER

PMC10486052

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

Orphanet Journal of Rare Diseases

READ THE FULL PAPER

ABSTRACT

Abstract Background Childhood 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. Methods We 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. Results Nineteen 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. Conclusion This 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. Supplementary Information The online version contains supplementary material available at 10.1186/s13023-023-02859-3. Keywords: Child, Neurodegeneration, Dementia, Psychosocial, Healthcare, Parent

CITATION EXPORT

Suzanne M Nevin, Brittany C McGill, Lauren Kelada et al.. The psychosocial impact of childhood dementia on children and their parents: a systematic review. Orphanet Journal of Rare Diseases. (2023). https://doi.org/10.1186/s13023-023-02859-3

AUTHORS

15 · 11 CENTRES

Suzanne M Nevin, Brittany C McGill, Lauren Kelada, Gail Hilton, Megan Maack, Kristina L Elvidge, Michelle A Farrar, Gareth Baynam, Naomi T Katz, Leigh Donovan, Sarah Grattan, Christina Signorelli, Kaustuv Bhattacharya, Kenneth Nunn, Claire E Wakefield

1School of Clinical Medicine, UNSW Medicine and Health, Discipline of Paediatrics and Child Health, Sydney, Australia
2Behavioral Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, Australia
3Childhood Dementia Initiative, Sydney, NSW Australia
4Department of Neurology, Sydney Children’s Hospital, Randwick, Australia
5Faculty of Health and Medical Sciences, Division of Paediatrics, University of Western Australia, Western Australia, Australia
6Rare Care Centre, Perth Children’s Hospital, Perth, WA Australia
7Telethon Kids Institute, Perth, WA Australia
8Victorian Paediatric Palliative Care Program, Royal Children’s Hospital, Melbourne, VIC Australia
9Genetic Metabolic Disorders Service, Sydney Children’s Hospitals’ Network, Randwick and Westmead, Australia
10Faculty of Medicine and Health, Discipline of Genomics, Sydney University, Westmead, Australia
11Department of Psychological Medicine, Children’s Hospital at Westmead, Sydney, NSW Australia