Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD)

Fernández‐Alcántara, Manuel; García‐Caro, María Paz; Pérez-Marfil, Mͣ Nieves; Hueso‐Montoro, César; Laynez-Rubio, Carolina; Cruz-Quintana, Francisco

doi:10.1016/j.ridd.2016.05.007

Cited by 62 publications

(38 citation statements)

References 29 publications

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“…The emotional downturn of loss, grief and shock is a finding congruent with other studies of fathers who had also been preparing for the birth of a typically developing child which did not come to fruition (Boström & Broberg, 2013;Fernandez-Alcántara et al, 2016;Goff et al, 2013;Huang, St John, Tsai, & Chen, 2011;Takataya et al, 2016;Torquato et al, 2012).…”

Section: Discussionsupporting

confidence: 80%

“Something was wrong”: A narrative inquiry of becoming a father of a child with an intellectual disability in Ireland

Marsh

Warren

Savage

2018

Brit J Learn Disabil

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Accessible summary Ten fathers were asked to tell their story of being told that their child was diagnosed with an intellectual disability. They said that initially they were shocked, disappointed, in denial and blamed themselves when the diagnosis was certain. All fathers remembered when they were told and by whom they were told about their child’s diagnosis. Becoming a father was a reason to be happy. Abstract BackgroundIn recent years, there has been a growth of research on men’s experiences of becoming fathers, most of which relates to a typically developing child without intellectual disabilities. While some studies have specifically explored the experiences of becoming a father of a child with an intellectual disability, there are few studies from an Irish context. AimThe aim of this study was to present Irish fathers’ narratives within the context of leading up to the diagnosis and the actual diagnosis of a child’s intellectual disability. MethodA qualitative narrative inquiry design was used with ten fathers aged 31–48 years through semi‐structured interviews. ResultsThis study is part of a larger study focusing on becoming a father of a child with an intellectual disability in Ireland. The findings related to finding out “something was wrong” with the child are presented. ConclusionFathers are emotionally affected by the diagnosis of a child’s intellectual disability. Therefore, healthcare professionals need to be cognisant of the emotional upheaval that such a diagnosis can have on fathers and be sensitive to their needs in supporting them through this process.

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Section: Discussionsupporting

confidence: 80%

“Something was wrong”: A narrative inquiry of becoming a father of a child with an intellectual disability in Ireland

Marsh

Warren

Savage

2018

Brit J Learn Disabil

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“…Related to the stigma of disability may be unresolved feelings of guilt and self‐blame for causing the disabilities (Dimond , Fernandez‐Alcantara et al . , Hallowell et al . , Keeley et al .…”

Section: Introductionmentioning

confidence: 99%

The Actionability of Exome sequencing testing results

Stivers

Timmermans²

2017

Sociology Health & Illness

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Genomic tests such as exome sequencing have recently become an option for diagnosing patients. The tests allow clinical geneticists to sequence the majority of patients' disease causing genetic variants. As a new technology, exome sequencing confronts the question of what the benefit is of this increased genetic information. Against a narrow perspective of clinical utility that emphasises tangible improvements in a patient's disease management, professional organisations have argued that genomic sequencing should be considered beneficial if it helps families and society. Based on video-recorded observations of the return of exome sequencing results to parents of a child with disabilities in the clinic and in-depth interviews with these parents, we examine how genomic test results become actionable in the clinical encounter. We find that parents and clinicians marshal exome results beyond biomedical diagnostic and management goals to address questions about guilt for causing the disabilities and to secure access to disability-related services. We argue that genomic actionability rests on the interaction between the biological characteristics of genetic results and the predicaments facing parents of children with disabilities.

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“…Furthermore, by reducing intensity and cost of therapist involvement, public systems can distribute scarce resources to benefit more parents. Within such care models, however, parents are being asked to be involved earlier, often close to diagnosis, when emotional (Davis & Carter, 2008;Osborne, McHugh, Saunders, & Reed, 2008) and work-related (Singh, 2016) burdens are known to be especially high. Insisting on high levels of engagement for all parents at this early stage may have unintended consequences on a subset of those who are not ready to meet the additional demands placed on them, exacerbating parenting stress, which can in turn reduce intervention effectiveness (Osborne, McHugh, Saunders, & Reed, 2007 and be a barrier to achieving optimal outcomes for the family and child (Prilleltensky & Nelson, 2000;Reed & Osborne, 2012).…”

mentioning

confidence: 99%

Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care

Gentles

Nicholas

Jack

et al. 2019

Autism

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We report results from a large qualitative study regarding the process of parents coming to understand the child has autism starting from the time of initial developmental concerns. Specifically, we present findings relevant to understanding how parents become motivated and prepared for engaging in care at this early stage. The study included primary data from 45 intensive interviews with 32 mothers and 9 expert professionals from urban and rural regions of Ontario, Canada. Grounded theory methods were used to guide data collection and analysis. Parents’ readiness (motivation and capacity) for engagement develops progressively at different rates as they follow individual paths of meaning making. Four optional steps account for their varied trajectories: forming an image of difference, starting to question the signs, knowing something is wrong, and being convinced it’s autism. Both the nature of the information and professional help parents seek, and the urgency with which they seek them, evolve in predictable ways depending on how far they have progressed in understanding their child has autism. Results indicate the need for sensitivity to parents’ varying awareness and readiness for involvement when engaging with them in early care, tailoring parent support interventions, and otherwise planning family-centered care pathways. Lay Abstract What is already known about the topic? Parents of children with autism often learn about their child’s autism before diagnosis and can spend long periods seeking care (including assessment) before receiving a diagnosis. Meanwhile, parents’ readiness to engage in care at this early stage can vary from parent to parent. What this paper adds? This study revealed how parents come to understand their child has autism—on their own terms, rather than from just talking to professionals. It also explained how parents’ growing awareness of their child’s autism leads them to feel more motivated to engage in care by seeking information and pursuing services. Four “optional steps” described how parents’ growing readiness to engage in care at this early stage can vary, depending on their personal process. Implications for practice, research, or policy The results suggest ways that professionals can be more sensitive (a) to parents’ varying awareness of autism and (b) to their varying readiness for being involved in early care. They also suggest ways to tailor parent supports to their individual situation and design care that is more family centered. Not all parents want high levels of involvement. Depending on their personal process, some parents may need care and support that is directed at them before feeling ready for professionals to engage them in care directed at the child.

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Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD)

Cited by 62 publications

References 29 publications

“Something was wrong”: A narrative inquiry of becoming a father of a child with an intellectual disability in Ireland

“Something was wrong”: A narrative inquiry of becoming a father of a child with an intellectual disability in Ireland

The Actionability of Exome sequencing testing results

Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care

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