Parenting a child with congenital heart disease:Experiences of diagnosis, identity and parental role

The thesis comprises a systematic literature review, an empirical research paper and a critical reflection on the research. The aim was to qualitatively explore parental experiences of having a child with congenital heart disease (CHD), specifically of receiving the diagnosis and of parental roles and identity. The systematic literature review utilised thematic synthesis to synthesise qualitative findings regarding parents’ psychological experiences of receiving their child’s CHD diagnosis. Twenty-four papers were included in the review and four themes were identified: 1) unpreparedness for the diagnosis, 2) the overwhelming reality of CHD, 3) mourning multiple losses, and 4) redefining hopes to reach acceptance of CHD. There were individual differences in emotional experiences, but findings highlight the need for compassionate support from professionals throughout. The research paper explored mothers’ experiences of parental role and identity when parenting a child with single ventricle CHD (SVCHD). Interpretative Phenomenological Analysis (IPA) was used to analyse data from interviews with eight mothers. 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”, 3) loss and regaining of identity, and 4) relinquishing control and the need to let go. Parenting a child with SVCHD presented significant challenges to mothers’ parental role and identity, which they managed in various ways. Implications for clinical practice and future research are discussed. The critical appraisal summarises the research and provides reflections on the methodological and ethical considerations, limitations and implications of the research. The appraisal highlights the importance of reflexivity, and personal reflections on the research process are considered throughout

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

Purpose: This systematic review aimed to synthesize qualitative research on parents' psychological experiences following their child's diagnosis of congenital heart disease (CHD). Methods: A 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. Results: Twenty‐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. Conclusions: Receiving 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

Beliefs About One’s Non-Suicidal Self-Injury: The Experiences of Self-Injury Questionnaire (ESIQ)

Objective: The goal of this study was to develop and validate a measure of self-rated positive and negative beliefs about one’s non-suicidal self-injury (NSSI), the Experiences of Self-Injury Questionnaire (ESIQ). Method: Psychometric properties and validation against NSSI severity and shame were tested in two U.S. and two U.K. samples of individuals who endorsed a history of NSSI. Results: Exploratory and confirmatory factor analyses indicated five factors. Subscales were labeled Positive Beliefs, Personal Dislike, Interpersonal Concern, Emotional Suppression, and Emotional Expression. The Positive Beliefs Subscale covers beliefs that NSSI is valuable. Scores on this subscale were associated with endorsement of NSSI frequency, NSSI urges, and perceived likelihood of future NSSI. Other subscales showed validity in that they all showed unique effects on outcome indices of NSSI severity or shame. Conclusion: The ESIQ shows promise as a brief reliable measure of beliefs about and experiences of NSSI

Assessment of penalty-free multi-objective evolutionary optimization approach for the design and rehabilitation of water distribution systems

This paper describes a penalty-free multi-objective evolutionary optimization approach for the phased whole-life design and rehabilitation of water distribution systems. The optimization model considers the initial construction, rehabilitation and upgrading costs. Repairs and pipe failure costs are included. The model also takes into consideration the deterioration over time of both the structural integrity and hydraulic capacity of every pipe. The fitness of each solution is determined from the trade-off between its lifetime costs and its actual hydraulic properties. The hydraulic analysis approach used, known as pressure-dependent modelling, considers explicitly the pressure dependency of the water supply consumers receive. Results for two sample networks in the literature are included that show the algorithm is stable and finds optimal and near-optimal solutions reliably and efficiently. The results also suggest that the evolutionary sampling efficiency is very high. In other words, the number of solutions evolved and analysed on average before finding a near-optimal solution is small in comparison to the total number of feasible and infeasible solutions. We found better solutions than those reported previously in the literature for the two networks considered. For the Kadu network, for example, the new best solution costs Rs125,460,980 – a significant improvement. Additional statistics that are based on extensive testing are included