Children with single ventricle congenital heart defects: An interpretative phenomenological analysis of the lived parent experience

Lumsden, Midori; Smith, Debbie; Twigg, Emma; Guerrero, Rafael; Wittkowski, Anja

doi:10.1016/j.ppedcard.2020.101297

Cited by 7 publications

(13 citation statements)

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“…Parents of CYP with CHD are more likely to experience anxiety and depression (Alkan et al, 2017;Lawoko & Soares, 2002) and post-traumatic stress (Kolaitis et al, 2017;Woolf-King et al, 2017) than parents of healthy CYP. These parents describe isolation, guilt and fear throughout their child's life (Lumsden et al, 2020). Findings are consistent across cultures (Im et al, 2018;Nakazuru et al, 2017) and may be explained by the additional challenges faced, such as making important medical decisions (Rempel et al, 2004) or adapting to necessary financial or lifestyle changes (Connor et al, 2010).…”

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confidence: 63%

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Parenting a Child with a Functionally Univentricular Heart: Mothers’ Experiences of Role and Identity

Dandy,

Wittkowski,

Murray

2024

J Child Fam Stud

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This qualitative study aimed to explore how having a child with a functionally univentricular heart (FUH) affected mothers’ experiences of their parental role and identity. Eight mothers whose children had undergone the Fontan surgical procedure were recruited via social media. Interviews were completed using Microsoft Teams and audio-recorded, then transcribed and analysed using Interpretative Phenomenological Analysis. Four themes were identified: (1) being a “heart mum”, (2) managing competing roles: “you have to wear lots of different hats all at the same time”, with subthemes (a) promoting normality vs. protecting the child and (b) mothering vs. nursing roles, (3) loss and regaining of identity and (4) relinquishing control and letting go of caring roles. Parenting children and young people (CYP) with FUH presented significant challenges to mothers’ parental role and identity, which they managed in various ways. There are implications for health services to support mothers with their psychological wellbeing, managing nursing roles and their child’s transition to adulthood.

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confidence: 63%

“…Nonetheless, the findings may simply suggest that some parents psychologically adapt to their child's condition. For example, parents of CYP with FUH interviewed by Lumsden et al (2020) reported establishing a sense of normality once they had adjusted to changes that a FUH brought to their parental role.…”

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confidence: 99%

Parenting a Child with a Functionally Univentricular Heart: Mothers’ Experiences of Role and Identity

Dandy,

Wittkowski,

Murray

2024

J Child Fam Stud

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“…Despite blaming themselves, mothers felt resentful that they had done everything ‘right’: ‘I was annoyed, cos I didn't smoke, I didn't drink. I didn't do anything… I just don't understand why I got it’ (Lumsden et al., 2020, p.4). Conversely, fathers expressed more anger towards the world, implying recognition that the diagnosis was out of their control: ‘For myself, I think I felt a lot of anger.…”

Section: Resultsmentioning

confidence: 99%

Parents' experiences of receiving their child's diagnosis of congenital heart disease: A systematic review and meta‐synthesis of the qualitative literature

Dandy,

Wittkowski,

Murray

2023

British J Health Psychol

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PurposeThis systematic review aimed to synthesize qualitative research on parents' psychological experiences following their child's diagnosis of congenital heart disease (CHD).MethodsA systematic search of six electronic databases (CINAHL, Embase, MEDLINE, PsycINFO, PubMed and Web of Science) was completed, inclusive of all years up to May 2022. Any included articles were synthesized using thematic synthesis and appraised using the Critical Appraisal Skills Programme Qualitative Checklist.ResultsTwenty‐six articles were included. Four main themes, and 11 subthemes, emerged from the synthesis. Theme 1 (unpreparedness for the diagnosis) concerned parents' shock, guilt and anger regarding the diagnosis. Theme 2 (the overwhelming reality of CHD) described parental fear about decision‐making and the child's prognosis, and the influence of professionals on parents' well‐being. Theme 3 (mourning multiple losses) detailed parents' sadness at losing their envisioned pregnancy, birth and parenthood experiences. Theme 4 (redefining hopes to reach an acceptance of CHD) described parents' adjustment to the diagnosis.ConclusionsReceiving a child's CHD diagnosis was a uniquely challenging situation for parents. The findings provided insight into the emotions parents experienced and how they adjusted to the diagnosis psychologically. As parents' experiences were significantly influenced by their interactions with professionals, clinicians should offer compassion, validation and clear information throughout the diagnosis process.

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“…Striving for normality is common amongst parents of children with rare conditions. 10,11 Research has found that other people asking questions about their child's condition has been found to trigger a grief reaction in parents of children with chronic illness. 24,26 Thus, LALD being visually absent somewhat protects parents from unwarranted distress from regular confrontation of the condition.…”

Section: Discussionmentioning

confidence: 99%

“…This was a qualitative study using Interpretative Phenomenological Analysis (IPA), an approach which has been used extensively to explore individuals' experiences of physical health problems as well as parental experiences. [8][9][10][11] IPA allows for an in-depth understanding of a smaller group of homologous participants and is concerned with the personal, lived experiences of participants within a complex and emotional context. 12 This approach was used due to the rarity of and lack of current qualitative research regarding LALD, which IPA has been identi ed to be particularly suitable for.…”

Section: Designmentioning

confidence: 99%

“Why them, why me, why us?” The Experiences of Parents of Children with Lysomal Acid Lipase Deficiency: An Interpretative Phenomenological Analysis Study

Hassell

Smith

Rust

et al. 2021

Preprint

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BackgroundLysosomal acid lipase deficiency (LALD) is an ultra-rare, inherited metabolic disease within the category of lysosomal storage disorders, affecting an infant’s ability to metabolise cholesterol. Developments in treatment, including Enzyme Replacement Therapy, have proven successful, with some children living for a number of years post-diagnosis, although the future still remains unknown. The aim of this study was to explore the lived experiences of parents of children with LALD. Main textParticipants were recruited from across the United Kingdom between 2020-2021. Eight parents (five mothers and three fathers) whose child had a confirmed diagnosis of LALD were interviewed. Data collected from the semi-structured interviews were audio-record, transcribed and analysed using Interpretative Phenomenological Analysis (IPA). Three superordinate and nine subordinate themes emerged from the data: 1) Uncertainty - a double-edged sword (plunged into an uncertain world, living life with worry and walking the tightrope of stability), 2) Powerless against a shared battle (a helpless parent, a joint battle, protection against distress and a vulnerable parent needing to be held) and 3) Accepting a life with LALD - the camouflage of a “normal” child (trying to make sense of ‘why’ and a condition disguised by normality). ConclusionsThe findings of this study highlighted that the diagnosis of LALD proves to be a very vulnerable time in parents’ lives, eliciting strong emotional reactions against an unknown future. This study signified the importance of clinical pathways and service provisions to support parents and their children through this period, raising important issues around diagnosis.

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Children with single ventricle congenital heart defects: An interpretative phenomenological analysis of the lived parent experience

Cited by 7 publications

References 56 publications

Parenting a Child with a Functionally Univentricular Heart: Mothers’ Experiences of Role and Identity

Parenting a Child with a Functionally Univentricular Heart: Mothers’ Experiences of Role and Identity

Parents' experiences of receiving their child's diagnosis of congenital heart disease: A systematic review and meta‐synthesis of the qualitative literature

“Why them, why me, why us?” The Experiences of Parents of Children with Lysomal Acid Lipase Deficiency: An Interpretative Phenomenological Analysis Study

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