Experiences of mothers caring for children with rare diseases in Turkey
Sign Up to like & getrecommendations! Published in 2024 at "Journal of Genetic Counseling"
DOI: 10.1002/jgc4.1978
Abstract: Rare diseases (RDs), important for children and families, have been poorly studied in Turkey. This study aimed to describe the experiences and needs of mothers whose children have RDs from the perspectives of their mothers.… read more here.
Keywords: children rds; mothers caring; caring children; rare diseases ... See more keywords
Enabling and caring for children with limb loss
Sign Up to like & getrecommendations! Published in 2021 at "Paediatrics and Child Health"
DOI: 10.1016/j.paed.2021.06.003
Abstract: Abstract The loss of a limb places a significant physical and emotional burden on the child and their family. Limb loss in children can be congenital or acquired due to trauma or disease and its… read more here.
Keywords: caring children; loss; limb loss; enabling caring ... See more keywords
Corrigendum to "Caring for children with intellectual disabilities part 1: Experience with the population, pain-related beliefs, and care decisions" [Res. Dev. Disabil. 62 (2017) 197-208].
Sign Up to like & getrecommendations! Published in 2017 at "Research in developmental disabilities"
DOI: 10.1016/j.ridd.2017.03.013
Abstract: The authors would like to clarify that beyond being submitted concurrently, “part two” of this manuscript has been published in Research in Developmental Disabilities. The relevant citation for part two of this manuscript is: Genik,… read more here.
Keywords: part; care decisions; caring children; intellectual disabilities ... See more keywords
"As time passes, her disability becomes severe." The struggles and challenges of caring for children living with spina bifida and hydrocephalus in Uganda: perspectives from caregivers.
Sign Up to like & getrecommendations! Published in 2025 at "Disability and rehabilitation"
DOI: 10.1080/09638288.2025.2527947
Abstract: Abstract Purpose Spina bifida and hydrocephalus (SBH) are common neural tube defects that cause brain and spinal cord damage leading to loss of sensation, paralysis, deformities, and bladder/bowel dysfunction. Children with these conditions require substantial… read more here.
Keywords: caring children; spina bifida; parents siblings; support ... See more keywords
Caring for children with SAM: Intersectional stories of shame, blame and stigmatisation in Zimbabwe, Zambia and Kenya.
Sign Up to like & getrecommendations! Published in 2024 at "Global public health"
DOI: 10.1080/17441692.2024.2439883
Abstract: ABSTRACT This paper draws from qualitative research undertaken with the mothers and primary caregivers of children aged under 5 years old and in recovery from severe acute malnutrition (SAM), as well as other community members,… read more here.
Keywords: caring children; sam intersectional; stories shame; paper ... See more keywords
Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders
Sign Up to like & getrecommendations! Published in 2020 at "International Journal of Qualitative Studies on Health and Well-being"
DOI: 10.1080/17482631.2020.1725362
Abstract: ABSTRACT Purpose: The experiences of parents caring for the complex care needs of children with rare neurodevelopmental disorders are not well understood. Parents struggle to meet their children’s medical, behavioural, and social needs within and… read more here.
Keywords: rare neurodevelopmental; children rare; parents experience; caring children ... See more keywords
Caring for Children in Relation to Financial Hardship, Advance Care Planning, and Genetic Testing Among Adolescent and Young Adults with Cancer.
Sign Up to like & getrecommendations! Published in 2023 at "Journal of adolescent and young adult oncology"
DOI: 10.1089/jayao.2023.0010
Abstract: Purpose: When a cancer diagnosis coincides with caring for children, it may influence the financial impacts of cancer and decisions to pursue advance care planning (ACP) or genetic testing. We examined associations between caring for… read more here.
Keywords: adolescent young; genetic testing; financial hardship; caring children ... See more keywords
‘We have been in lockdown since he was born’: a mixed methods exploration of the experiences of families caring for children with intellectual disability during the COVID-19 pandemic in the UK
Sign Up to like & getrecommendations! Published in 2021 at "BMJ Open"
DOI: 10.1136/bmjopen-2021-049386
Abstract: Objectives This study aimed to explore the experiences of parents caring for children with intellectual and developmental disabilities (IDD) during the UK national lockdown in spring 2020, resulting from the COVID-19 pandemic. Design Participants were… read more here.
Keywords: since born; caring children; born mixed; lockdown since ... See more keywords
Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia
Sign Up to like & getrecommendations! Published in 2022 at "BMJ Open"
DOI: 10.1136/bmjopen-2021-060077
Abstract: Objectives Advance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise… read more here.
Keywords: advance care; care planning; life; care ... See more keywords
The Impact of Caring for Children With Severe Neurological Impairment on Clinicians
Sign Up to like & getrecommendations! Published in 2022 at "Clinical Pediatrics"
DOI: 10.1177/00099228221099135
Abstract: Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges… read more here.
Keywords: severe neurological; children severe; caring children; neurological impairment ... See more keywords
Capability wellbeing of parents caring for children with rare diseases: a national cross-sectional study
Sign Up to like & getrecommendations! Published in 2025 at "BMC Public Health"
DOI: 10.1186/s12889-025-25452-8
Abstract: Rare diseases impose significant burden on families, particularly parents, of affected children, involving intensive caregiving, financial hardship, and social isolation. However, there is a scarcity of research exploring the broader dimensions of parental wellbeing, such… read more here.
Keywords: caring children; capability; rare diseases; wellbeing parents ... See more keywords