Experiences of Parenting a Child Receiving Dexamethasone During Maintenance Chemotherapy for Acute Lymphoblastic Leukemia.

Background: The purpose of this research was to understand the experience of parenting a child receiving dexamethasone during maintenance chemotherapy for acute lymphoblastic leukemia (ALL). Previous research has shown that dexamethasone's high level of toxicity causes many physical, behavioral, and emotional side effects, which reduce the quality of life during ALL treatment. Less is known about the experience of parenting a child receiving dexamethasone and the impact on the parent-child relationship. Methods: In-depth semi-structured interviews were conducted with 12 parents and data was analyzed using Interpretative Phenomenological Analysis. Results: Four superordinate themes emerged: "a child on steroids is not your child": the behavioral and emotional changes in the child and their relationships; "you have to do what you have to do": adapting parenting to manage dexamethasone; "it breaks your heart … it's a horrible medicine": the emotional impact of parenting a child on dexamethasone; and, "it's the worst week ever": finding ways to cope with the challenges of dexamethasone. Discussion A preparatory intervention for parents beginning the dexamethasone journey focused on likely challenges, managing boundary setting and discipline, and their own emotional struggles, could be beneficial. Research into the impact on siblings could further understand the systemic influence of dexamethasone and help develop further interventions.

Examining the Psychosocial Well-Being of Children and Adolescents With Coeliac Disease: A Systematic Review.

This review aimed to synthesize the available literature regarding the psychosocial well-being of children and adolescents with coeliac disease (CD). Research on psychosocial well-being outcomes in children and adolescents with CD under the age of 18 were identified through a systematic search in the PsychInfo, Medline, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases in July 2021. Outcomes, including health-related quality of life (HRQOL), psychological adjustment, mental health, and social functioning were examined. Changes in outcomes over time and the geographic representation of the included studies were also analyzed. A total of 43 studies were included. Mixed results were found in the domain of HRQOL and mental health. Both challenges with psychological adjustment and adaptive coping strategies were identified. Social functioning was found to be an area of difficulty for children and adolescents with CD. However, there was high heterogeneity in methodology and participant characteristics between studies. This review concluded there were mixed findings regarding the HRQOL and mental health of young people with CD. However, CD and the gluten-free diet initiates a need for psychological adjustment and impacts on social functioning. The review highlights the need for the integration of physical and psychosocial care, and further research to determine the most appropriate screening measures, and the most efficacious psychological interventions for this group. Future research should continue examining changes in psychosocial outcomes over time given the increase in the availability of gluten-free foods and changes in food labeling policies.

"I sort of never felt like I should be worried about it or that I could be worried about it'" an interpretative phenomenological analysis of perceived barriers to disclosure by young people with coeliac disease.

OBJECTIVES: There has been little research in the United Kingdom regarding young people's experiences of disclosure of psychological difficulties relating to coeliac disease (CD) to others, particularly healthcare professionals. This study sought to address this systematically with a focus on the lived experiences of young people with CD. This study aimed to gain insight into how paediatric gastroenterology services could improve the patient experience for those with CD and support the identification of patients who may benefit from further psychological support. DESIGN: This study used interpretive phenomenological analysis (IPA) of patient accounts. METHODS: Seven young people with CD (aged 11-16 years) were recruited from a UK hospital paediatric gastroenterology service. Semi-structured interviews were carried out and verbatim transcripts were analysed using IPA to explore young people's experiences of CD and why they might feel able or unable to disclose psychological difficulties associated with their condition to clinicians. RESULTS: Three superordinate themes were interpreted from the data. The first encapsulated experiences of adjusting to the diagnosis within a developmental context, including the role of adults in information provision and the importance of peer support. The second outlined experiences of managing perceived or actual stigma regarding others' perceptions of the condition and themselves. The third incorporated perceived barriers to disclosure relating to power, safety, and beliefs about the role of medical professionals. CONCLUSIONS: Findings highlight the importance of clinicians continually providing developmentally appropriate information to young people and actively breaking down barriers to disclosure through body language and the use of clear questions regarding emotional experiences.

The experiences of adolescents diagnosed with functional gastrointestinal disorders: An interpretative phenomenological analysis.

The aim of this study was to provide a qualitative perspective of adolescents' experiences of functional gastrointestinal disorders. In-depth semi structured interviews were conducted with eleven adolescents aged 11-16. The transcripts were analysed using Interpretative Phenomenological Analysis. Three superordinate themes were identified: 1) The journey to diagnosis: the good, the bad and the unknown; 2) Making sense of 'functional': the search for meaning; and 3) To share or conceal?: the impact of anticipated stigma on peer disclosure. The themes highlighted a complex process of meaning-making, with limited information about their diagnosis impacting on approaches to self-management and peer disclosure. Findings suggest adolescents would benefit from developmentally appropriate information and resources about the biopsychosocial aetiology of their presentation. It is considered that this may lead to greater self-efficacy in self-management of symptoms and reduce potential for perceived and self-stigma. Further implications for clinical practice and future research are discussed.

A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease.

Inflammatory bowel disease (IBD) consists of Crohn's disease and ulcerative colitis, chronic conditions involving inflammation and ulceration of the gastrointestinal tract. Individuals with IBD may be susceptible to experiencing health-related stigma: experienced, perceived, or internalised social exclusion, rejection, blame, or devaluation resulting from negative social judgements based on the disease. This qualitative research synthesis draws together findings from 38 studies describing lived experiences to develop a unified interpretative account of the experience of stigma in IBD. Analysis developed two categories: 'The IBD journey' explores the dynamic ways in which having IBD impacted on individuals' self-identity and 'a need to be understood' examines the tension between wanting to be understood whilst feeling their true experiences needed to be hidden from or were misjudged by the social sphere. The overarching concept 'feeling of otherness' highlights that, rather than a static, binary experience, individuals moved across a continuum ranging from the excluding experience of feeling stigmatised and othered, to the inclusive experience of integration. Individuals fluctuated along this continuum across different physical, social, and health contexts. Psychological adjustment to IBD, drawing on experience of adaptive coping, and reconnecting with valued others through illness disclosure strengthened stigma resistance during more challenging times.