On duty all the time: health and quality of life among immigrant parents caring for a child with complex health needs

Kvarme, Lisbeth Gravdal; Albertini-Früh, Elena; Brekke, Idunn; Gardsjord, Ragnhild; Halvorsrud, Liv; Lidén, Hilde

doi:10.1111/jocn.13056

Cited by 35 publications

(49 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…This limits their ability to readily gain information and seek help. Previous studies have suggested the importance of educational programs for parents as a way to give information in a more interactive way, reducing parental stress and increasing their quality of life (Chiang 2014; Hoogsteen and Woodgate 2013; Kvarme et al 2016; Tung et al 2014). Knowledge to navigate across systems requires a set of structural conditions (language, access to networks), and availability of appropriate services for immigrant mothers as well (Khanlou et al 2015; Asanin and Wilson 2008; Stewart et al 2006).…”

Section: Discussionmentioning

confidence: 99%

Access Barriers to Services by Immigrant Mothers of Children with Autism in Canada

Khanlou

Haque

Mustafa

et al. 2017

Int J Ment Health Addiction

View full text Add to dashboard Cite

Equal access for autism services remains suboptimal for diverse groups. In Canada, little is known about the barriers immigrant mothers face accessing services and support for their children with developmental disabilities. In this qualitative study, 21 immigrant mothers of children with Autism, from a diverse ethno cultural background, were interviewed in Toronto, Canada. We apply House’s (1981) four domains of social support to analyze findings. Structural support challenges, such as delays in diagnosis, fragmented and dispersed services were common, followed by instrumental challenges due to loss of social ties and stigma. Lack of expected support from partners, and negative perceptions of services, were identified as emotional and perceptive challenges. Focused attention is required to address inequalities within the context of current access pathways for autism.

show abstract

Section: Discussionmentioning

confidence: 99%

Access Barriers to Services by Immigrant Mothers of Children with Autism in Canada

Khanlou

Haque

Mustafa

et al. 2017

Int J Ment Health Addiction

View full text Add to dashboard Cite

show abstract

“…There is an inherent tension in children with such complex health care needs being at home and the demands that this brings (Moran, Spittle et al, 2015); and there is considerable evidence that the services available to provide support to the families is insufficient to meet their needs (Carter, Coad et al, 2012). Other studies have explored these facets of life at home with a child with complex needs (Kirk et al, 2005;Kvarme et al, 2016). Many authors report parents' having similar experiences to the ones portrayed in the videos, where parenting is raised to a different level when caring for a child with complex health care needs.…”

Section: Discussionmentioning

confidence: 99%

“…Caring for a child with health care needs and/or disability places additional stress (Bray et al, 2017) and time demands on parents who have to perform their usual parenting role alongside caregiving (nursing) tasks such as managing complicated medicine regimes, performing suctioning and administering parental feeding (McCann et al, 2012). The caregiving role means that many parents feel like they are 'on duty' all the time (Kvarme et al 2016). Although some families receive nursing and other care-related support (Kirk et al, 2005), many parents receive insufficient support from health and social care professionals (Pelentsov et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Parent-Driven Campaign Videos: An Analysis of the Motivation and Affect of Videos Created by Parents of Children With Complex Healthcare Needs

Carter

Bray

Keating

et al. 2017

Comprehensive Child and Adolescent Nursing

View full text Add to dashboard Cite

Caring for a child with complex health care needs places additional stress and time demands on parents. Parents often turn to their peers to share their experiences, gain support, and lobby for change; increasingly this is done through social media. The WellChild #notanurse_but is a parent-driven campaign that states its aim is to "shine a light" on the care parents, who are not nurses, have to undertake for their child with complex health care needs and to raise decision-makers' awareness of the gaps in service provision and support. This article reports on a study that analyzed the #notanurse_but parent-driven campaign videos. The purpose of the study was to consider the videos in terms of the range, content, context, perspectivity (motivation), and affect (sense of being there) in order to inform the future direction of the campaign. Analysis involved repeated viewing of a subset of 30 purposively selected videos and documenting our analysis on a specifically designed data extraction sheet. Each video was analyzed by a minimum of 2 researchers. All but 2 of the 30 videos were filmed inside the home. A variety of filming techniques were used. Mothers were the main narrators in all but 1 set of videos. The sense of perspectivity was clearly linked to the campaign with the narration pressing home the reality, complexity, and need for vigilance in caring for a child with complex health care needs. Different clinical tasks and routines undertaken as part of the child's care were depicted. Videos also reported on a sense of feeling different than "normal families"; the affect varied among the researchers, ranging from strong to weaker emotional responses.

show abstract

“…Leustek 17 Mas et al 21 Kvarme et al 22 1) Was there a clear statement of the aims of the research? a.…”

Section: Linden 15mentioning

confidence: 99%

“…Lack of financial support from the family or government and shortage of public services to guarantee adequate care for these children are other complicating factors for the family's financial stability, since the parents are forced to pay for the services their children need 21 . In some cases one parent, usually the father, works fulltime, puts in overtime, or adds another informal paid activity in the attempt to improve the family's financial situation 22 . On parent, usually the mother, often has to quit work, which appears in the studies as an aggravating factor or cause of financial difficulties 15,17,19,21 .…”

Section: Box 2 (Continued)mentioning

confidence: 99%

Repercussões do nascimento e do cuidado de crianças com deficiência múltipla na família: uma metassíntese qualitativa

et al. 2019

View full text Add to dashboard Cite

A deficiência múltipla em crianças, presente em diversas síndromes, é uma condição que acarreta problemas de ordem física, econômica e social e afeta os pais dessas crianças e suas famílias. O anseio de conhecer melhor essa problemática, sob a perspectiva da análise qualitativa, deu origem ao objetivo deste estudo, que é de identificar e sintetizar o que a literatura científica aborda sobre as repercussões do nascimento e do cuidado de um filho com deficiência múltipla na família. Trata-se de uma metassíntese qualitativa, realizada nas bases de dados Scopus, PsycInfo e SciELO, utilizando-se os descritores: qualitativo; crianças com deficiência; relações pais-filhos; relações familiares; e cuidadores. Os dados foram analisados em três etapas, segundo o método adotado por Noblit & Hare: extração de conceitos de primeira ordem; produção de conceitos de segunda ordem; e síntese interpretativa. Depois do processo de busca e elegibilidade, oito estudos foram incluídos; desses, emergiram seis conceitos de segunda ordem: restrição social; desgaste nas relações familiares; sentimentos que afligem; instabilidade financeira; mudança na dinâmica familiar; e estresse na saúde e no bem-estar. Com base nesses conceitos, elaboraram-se três sínteses: deficiência e parentalidade ideal; o ônus do cuidado; e (re)ssignificações e adaptações da família. Os estudos apontaram que os pais e a família passam por dificuldades advindas das representações sobre a deficiência múltipla e dos encargos do cuidado (problemas de saúde, limitação para outras atividades, aumento dos custos financeiros, mudança de rotina). Indicam, também, que esses elementos penetram e podem interferir nas relações familiares e sociais.

show abstract

On duty all the time: health and quality of life among immigrant parents caring for a child with complex health needs

Abstract: Aim and objectives. To provide knowledge about how immigrant parents of children with complex health needs manage their family lives and how this affects their own health and quality of life.Background. Caregivers of children with complex health needs have additional risk for

Cited by 35 publications

References 28 publications

Access Barriers to Services by Immigrant Mothers of Children with Autism in Canada

Access Barriers to Services by Immigrant Mothers of Children with Autism in Canada

Parent-Driven Campaign Videos: An Analysis of the Motivation and Affect of Videos Created by Parents of Children With Complex Healthcare Needs

Repercussões do nascimento e do cuidado de crianças com deficiência múltipla na família: uma metassíntese qualitativa

Contact Info

Product

Resources

About