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This systematic review aimed to synthesize qualitative research on parents' psychological experiences following their child's diagnosis of congenital heart disease (CHD). 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. 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. 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. [Abstract copyright: © 2023 The Authors. British Journal of Health Psychology published by John Wiley & Sons Ltd on behalf of British Psychological Society.]

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.

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.

Sandel, D. B., Jomar, K., Johnson, S. L., Dickson, J. M., Dandy, S., Forrester, R., & Taylor, P. J. (2021). Beliefs about one’s non-suicidal self-injury: The Experiences of Self-Injury Questionnaire (ESIQ). Archives of Suicide Research, 25(3), 458-474. https://doi.org/10.1080/13811118.2020.1712285