Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective

McRae, Tracy; Adams, Emma; Clifton, Elaine; Fitzpatrick, James; Bruce, Kaashifah; Councillor, June; Pearson, Glenn; Walker, Roz

doi:10.22605/rrh5206

Cited by 3 publications

(4 citation statements)

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“…In several studies, [21][22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37] adoptive and biological caregivers described using adaptive parenting styles to support individuals with FASD. Specifically, biological and adoptive caregivers reported that maintaining structure and routine are key.…”

Section: Caregivers Use An Adaptive Parenting Style To Support the In...mentioning

confidence: 99%

“…Motivation to foster children with FASD Foster parents choose to foster children with FASD to support the child and to develop their own parenting skills. 47 Benefits of respite care but concerns Respite care is useful to give caregivers a break and can help manage difficult behaviours; 22,24,36,46 however, some caregivers are hesitant to use it because of the risk to the child. 24 Professional strategies to support individuals with FASD Professionals use several strategies to support individuals with FASD:…”

Section: Subtheme Description Of the Subthemementioning

confidence: 99%

“…In several 22,24,[26][27][28]33,35,36,43 of the studies included in this scoping review, biological, adoptive, and foster caregivers reported that informal support, usually found in friends and family and support groups, is vital for well-being. Informal support provides caregivers with an accepting, non-judgmental place to discuss shared experiences and concerns.…”

Section: Caregivers Value and Depend On Informal Supportmentioning

confidence: 99%

“…Several studies 14,22,[24][25][26][27][28][29]32,33,36,40,41,[44][45][46][56][57][58][59] explored the experience of adoptive and biological caregivers with formal support. Formal support was vital to provide advice, information, and support to the whole family, as well as preventing caregiver burnout; caregivers often experienced a lack of support.…”

Section: Caregiver Experience With Formal Support Is Negativementioning

confidence: 99%

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Lived experience of fetal alcohol spectrum disorder: A qualitative scoping review

Wilson,

McCormack,

Singh

et al. 2023

Develop Med Child Neuro

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AimTo explore the lived experiences of individuals with fetal alcohol spectrum disorder (FASD), their caregivers, and professionals working with individuals with FASD.MethodWe conducted a scoping review using qualitative methods to explore what it is like to live with FASD from the perspective of those living with FASD, their caregivers, and stakeholders experienced in working with individuals with FASD. We searched electronic databases and grey literature for research published between 2005 and 2022.ResultsThe 47 studies included in this scoping review show that FASD affects people's lives on a daily basis. Individuals with FASD are aware of their disability and its effects. Caregivers face daily challenges raising children with FASD and are often left unsupported by professionals. Professionals are unprepared and frustrated when supporting someone with FASD.InterpretationFASD affects individuals, caregivers, and families on a daily basis; and they require improved support and funding.

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Section: Caregivers Use An Adaptive Parenting Style To Support the In...mentioning

confidence: 99%

Section: Subtheme Description Of the Subthemementioning

confidence: 99%

Section: Caregivers Value and Depend On Informal Supportmentioning

confidence: 99%

Section: Caregiver Experience With Formal Support Is Negativementioning

confidence: 99%

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Lived experience of fetal alcohol spectrum disorder: A qualitative scoping review

Wilson,

McCormack,

Singh

et al. 2023

Develop Med Child Neuro

View full text Add to dashboard Cite

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Protocol: Complementarity between informal care and formal care to adults: Knowledge mapping through a scoping review of the literature

de Matos,

Bobrowicz‐Campos,

Silva

et al. 2024

Campbell Systematic Reviews

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This is the protocol for a Campbell systematic review. The aim of this scoping review is to map, describe and characterize the available evidence on the role that formal care might have in complementing informal caregivers role – romantic partners, parallel family members (e.g., [step]siblings, cousins or in‐laws) or descendants (e.g., the care‐receivers are [step]parents, [step]aunts/uncles, [step]grandparents or in‐laws) – when providing care to adults with acquired diseases (physical or neurologic) in domestic settings and will set the ground for future research on this topic. The scoping review questions are the following: (i) What is the existing literature on the complementarity between formal and informal care? (ii) Which are the types of formal cares' services/interventions that have been described in the literature as complementary to informal care, provided to the informal caregiver and/or to the adult being cared for? (iii) Which outcomes have been assessed in the caregiver's physical, psychological, and social health domains, and how have they been measured?

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Aboriginal Kinship Carers and Children with Fetal Alcohol Spectrum Disorder in Western Australia: Advancing Knowledge from an Indigenous and Disability Lens

Williams,

Badry

2024

fpcfr

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Children and youth with fetal alcohol spectrum disorder (FASD) have limited access to assessment, diagnostic, and treatment resources – a distinct disadvantage in meeting their care needs in Australia. Limited knowledge exists on the intersection of FASD, Indigeneity, racism, trauma, and child welfare involvement. Notably, the lack of support for children with FASD increases the risk of adverse outcomes, including incarceration, homelessness, mental health problems, and early mortality. Children with FASD are often cared for in the child protection system by kinship carers, many without a diagnosis or the benefits of FASD informed care. Rarely considered is the Australian response to FASD or the Aboriginal worldview on disability. Qualitative research was utilized to conduct semi-structured interviews with six carers of Indigenous children with FASD–three foster carers and three relative or kinship carers. Seven core themes identified by carers included: FASD awareness, caregiver health, advocacy for the child, mothers of the children with FASD, loss and grief experienced by the carer, social costs, and children in child protection care. Carers identified that limited resources existed to address the disabilities and care needs of children, including training and respite. Financial disparity exists with relative carers receiving less income than foster carers. Carers demonstrated advocacy, resiliency, and resourcefulness in providing care. A lack of knowledge of FASD and core resources in child welfare services were identified as major challenges in providing care. This research examined the caregiving experiences of foster and Aboriginal kinship carers, caring for children with FASD in child protection.

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Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective

Cited by 3 publications

References 0 publications

Lived experience of fetal alcohol spectrum disorder: A qualitative scoping review

Lived experience of fetal alcohol spectrum disorder: A qualitative scoping review

Protocol: Complementarity between informal care and formal care to adults: Knowledge mapping through a scoping review of the literature

Aboriginal Kinship Carers and Children with Fetal Alcohol Spectrum Disorder in Western Australia: Advancing Knowledge from an Indigenous and Disability Lens

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