Socioeconomic disparities and difficulties to access to healthcare services among Canadian children with neurodevelopmental disorders and disabilities

Raouafi, Sana; Achiche, Sofiane; Raison, Maxime

doi:10.4178/epih.e2018010

Cited by 27 publications

(15 citation statements)

References 20 publications

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“…This is an important problem since women and couples who would have the fewest resources to cope with costs of care for an affected child are least likely to access RCS testing. 17 Although childhood-onset recessive conditions individually are rare, international pan-ethnic studies have reported that as many as one-third of individuals test positive for at least one condition. 18 A similar study from Australia, reporting the results of 12 000 limited RCS (CF, SMA, and FXS only) found that one in 20 individuals tested was found to be a carrier.…”

Section: Discussionmentioning

confidence: 99%

“…The observation that there is a steep socioeconomic gradient in uptake of RCS is striking: it seems likely there is a financial disincentive for women in more disadvantaged socioeconomic circumstances. This is an important problem since women and couples who would have the fewest resources to cope with costs of care for an affected child are least likely to access RCS testing 17 …”

Section: Discussionmentioning

confidence: 99%

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Socioeconomic status and uptake of reproductive carrier screening in Australia

Robson

Caramins

Saad³

et al. 2020

Aust NZ J Obst Gynaeco

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Reproductive carrier screening (RCS) aims to provide information about the risk that children will be affected by a serious heritable condition. Advances in genetic technology have allowed carrier screening 'panels' to be developed to screen for multiple autosomal recessive and X-linked conditions. These panels provide information for asymptomatic people with no family history which enables them to make informed reproductive decisions. These multi-disorder RCS tests-most commonly for cystic fibrosis (CF), spinal muscular atrophy (SMA), and fragile X syndrome (FXS)have been available commercially in Australia since 2012. The combined affected pregnancy rate of these conditions is similar to the population chance of trisomy 21, emphasising the need to routinely offer carrier screening. 1 Although recent estimates suggest that the lifetime cost of care of a person with a recessive condition exceeds 1.5 million Australian dollars, this will increase since the cost of newly introduced therapeutics exceeds two million dollars per dose: 2 recent studies report that population-based pre-conception screening is cost-effective. 3 When children are affected by recessive conditions such as SMA, the primary carer typically is the child's mother. 4 This creates greater specialisation within the household, reducing maternal labour supply. 5 Family fragmentation and marital breakdown are more common among these households, further exacerbating hardship: 6 the unanticipated birth of a disabled child

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Socioeconomic status and uptake of reproductive carrier screening in Australia

Robson

Caramins

Saad³

et al. 2020

Aust NZ J Obst Gynaeco

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“…Caregivers encounter significant challenges with accessing information and services, experience a lack of communication and coordination within and across agencies, and perceive the responsibility to coordinate their child’s services as overwhelming [ 7 – 9 ]. These experiences negatively impact family quality of life [ 10 ] and family burden [ 11 ], and those of low socioeconomic status [ 12 , 13 ] or who are immigrants [ 14 , 15 ] are further at risk.…”

Section: Introductionmentioning

confidence: 99%

Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review

Gardiner

Wong

Lin

et al. 2022

BMC Health Serv Res

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Background Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of educational and emotional support. Given the distinct needs of children with ND and their families, programs built upon such core concepts could be of great benefit. The diversity of terminology encompassing navigation-related concepts and activities (e.g., care coordination, case management, family support), however, presents challenges to both practice and research. This scoping review examined the terminology and descriptions provided within published articles on navigation-type models for children with ND and their families. Methods The scoping review was conducted according to the Joanna Briggs Institute methodology. A preliminary search was completed on PubMed (NCBI), MEDLINE (Ovid) and CINAHL (EBSCO) to identify initial search terms, upon which a full search strategy was developed and executed in MEDLINE (Ovid) and CINAHL (EBSCO). After screening records according to our inclusion and exclusion criteria, a full-text review of relevant articles was conducted and data extracted using a researcher-developed tool. Under close supervision by the research team, study selection was primarily performed by one author. Results Of the 2597 papers identified, 33 were included in the final review. From the included papers, a total of 49 terms were extracted, 20 of which were unique. Across the diversity of terminology observed, articles provided detailed and rich descriptions characterized by four central domains, namely: (i) what navigation-related resources, supports and services aim to facilitate and (ii) provide; (iii) descriptions of their intended outcomes; as well as (iv) guiding principles. Conclusions This scoping review addresses a gap in our knowledge related to the specification of patient navigation and related supports as applied to the specific context of children with ND and their families. Given the particular needs of this population, we propose an empirically-informed integrative model that synthesizes the findings from this scoping review. We suggest that this framework can be used as a guide to the mindful characterization of how supports aiming to connect children and families to needed service are termed and described within future research and in practice.

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“…Although family-centered care is widely adopted to guide health and supportive care in many circumstances (Åstedt-Kurki, 2010; Foster et al., 2013; Kaakinen et al., 2018), additional efforts towards its integration can enhance care and support for children and their families. Advocacy for family-centred care and identification of strategies to support coping and well-being are crucial because some parents struggle to clearly identify and prioritize their needs, and social inequities can impose barriers to accessing essential care and support (Raouafi et al., 2018). In conjunction with interprofessional teams, social workers are optimally positioned to provide and advocate for holistic care for families through their capacity to foster collaboration, therapeutic communication, and mobilize supportive care resources and interventions.…”

Section: Introductionmentioning

confidence: 99%

Exploring opportunities for holistic family care of parental caregivers of children with life-threatening or life-limiting illnesses

Bally¹,

Burles

Smith

et al. 2020

Qualitative Social Work

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Life-threatening and life-limiting illnesses in children have profound implications for all family members, many of whom experience unmet health and support needs. Guided by literature on family-centered care and an Interpretive Description methodology, qualitative focus group interviews were conducted with 18 parental caregivers and health care and support providers to explore family experiences and identify care and support needs across the illness trajectory. Data analysis resulted in three themes related to parental participation in children’s medical care, parental and familial psychological well-being, and social support needs. These inter-related themes reflect the complex nature of family life with childhood illness, highlighting families’ holistic needs and how children’s physical and psychological care is intertwined with the psychological and social well-being of the family system. Additionally, the findings revealed the significance of communication to parental caregivers’ hope, coping, and well-being. The findings add depth to existing literature, and identify opportunities for addressing families’ unmet needs, with specific attention to the role that social workers can play in facilitating family-centred care to promote effective support of parental caregivers. As such, the findings emphasize the important contributions that social workers can make within health care teams and in educational settings to optimize parents’ ability to care for ill children while maintaining family functioning and well-being, and as advocates for social and policy change.

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Socioeconomic disparities and difficulties to access to healthcare services among Canadian children with neurodevelopmental disorders and disabilities

Cited by 27 publications

References 20 publications

Socioeconomic status and uptake of reproductive carrier screening in Australia

Socioeconomic status and uptake of reproductive carrier screening in Australia

Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review

Exploring opportunities for holistic family care of parental caregivers of children with life-threatening or life-limiting illnesses

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