{"title":"I saw myself as an important piece of a jigsaw puzzle: Parents experiences of their child's anaesthesia induction.","authors":"Sofia Almerud Österberg, Lisbet Andersson","doi":"10.1177/13674935231218039","DOIUrl":"https://doi.org/10.1177/13674935231218039","url":null,"abstract":"<p><p>Anxiety in children, as well as their parents, is common in high-tech environments such as an operating room. This study aimed to describe parents' experiences of being present when their child is being anaesthetised. Twenty-four parents were interviewed and data were analysed using a descriptive phenomenological approach. Findings show that being present at a child's anaesthesia and surgery is a long, continuous process that begins at home. Parents struggle to face strong emotions in a special and frightening environment, focussing on their child's well-being while trying to remain control in this situation. Security and trust are vital, but it's challenging to relinquish control in an uncertain situation. Professional caregivers can promote trust and participation, but an awareness that something can go wrong affects parents on a deep level. In conclusion, parental presence at induction of anaesthesia is important but can be overwhelming and anxiety-inducing for some parents. Parents should be seen as a resource rather than a disturbance. Overall, the healthcare system should prioritise parents' involvement and seek to create an environment where they feel supported and included.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138441632","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lynn Buckley, Katherine Harford, Louise Gibson, Nicola Cornally, Margaret Curtin
{"title":"Parent perspectives of engaging with a community paediatric clinic with linked child development supports in a disadvantaged area of Ireland.","authors":"Lynn Buckley, Katherine Harford, Louise Gibson, Nicola Cornally, Margaret Curtin","doi":"10.1177/13674935231210947","DOIUrl":"https://doi.org/10.1177/13674935231210947","url":null,"abstract":"<p><p>Parent experiences of child health services can be used to understand their value and optimise the support provision to families during critical developmental periods. A gap in the literature exists regarding parental perspectives of linked child development supports, particularly in disadvantaged areas. This study examined parent experiences of the impact and value of a community paediatric clinic (Kidscope) with linked, multi-agency supports in a disadvantaged area of Ireland. Using a qualitative analysis design, 10 parents participated in one-to-one interviews. A Community Advisory Group consulted on interview schedules. Data was thematically analysed in line with Braun & Clarke's Framework. Five themes and twenty-two sub-themes emerged. Kidscope's linked, multi-agency approach was valuable for engaging families, addressing developmental delay, supporting readiness for education, and developing parent-child relationships. Relational working and a child and family centred model of care empowered parents to become active agents in children's health. Coronavirus disease 2019, national deficits in healthcare, and staff turnover impeded service delivery. Kidscope and linked supports work in partnership to disrupt the impact exclusion from healthcare has on vulnerable children and families. This study provides evidence of an effective integrated paediatric service delivery model designed around vulnerable children and families and highlights areas for improvement.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"92157337","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anilsa Suraia Pedro Gaspar Francisco, Maylli Daiani Graciosa, Sheila Cristina da Silva Pacheco, Luciana Sayuri Sanada
{"title":"Gross motor trajectories of pre-term and full-term infants under different parental educational approaches.","authors":"Anilsa Suraia Pedro Gaspar Francisco, Maylli Daiani Graciosa, Sheila Cristina da Silva Pacheco, Luciana Sayuri Sanada","doi":"10.1177/13674935231211954","DOIUrl":"https://doi.org/10.1177/13674935231211954","url":null,"abstract":"<p><p>This study aimed to explore motor trajectories of Brazilian pre-term and full-term infants from 3 to 12 months old whose parents participated in an educational program and had received guidance on gross motor development. Forty-eight Brazilian infants aged 3 months old were divided into Group 1 (full-term infants and their parents who received only verbal guidance, <i>n</i> = 14), Group 2 (full-term infants with parents who received an educative folder in addition to the same verbal guidance, <i>n</i> = 23), and Group 3 (preterm infants with parents who received the same verbal guidance and educative folder, <i>n</i> = 11). The folder had similar information to the verbal guidance; nonetheless, it helped to teach parents and allowed later consultation at home. We applied Alberta Infant Motor Scale, Affordances in Home Environment for Motor Development-Infant Scale, and a questionnaire about infants' information at 3-, 6-, 9-, and 12-months old. In longitudinal comparison, all groups showed a significant difference for AIMS variables on total score and subscales; all subitems of AHEMD-IS; and time spent in prone, supine, sitting, and standing positions. In general, no differences were found between groups. Motor trajectory, home opportunities, and parental positioning practices were similar between full-term and preterm infants with different guidance approaches.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71488962","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Manon Willekens, David De Coninck, Peter de Winter, Koen Matthijs, Steven Lierman, Ingrid Boone, Jaan Toelen
{"title":"Is blood thicker than water? Perceptions on the role of stepparents in medical decisions among minors.","authors":"Manon Willekens, David De Coninck, Peter de Winter, Koen Matthijs, Steven Lierman, Ingrid Boone, Jaan Toelen","doi":"10.1177/13674935231211217","DOIUrl":"https://doi.org/10.1177/13674935231211217","url":null,"abstract":"<p><p>Alternative family configurations are becoming more prevalent, yet current legislative statutory does not support stepparents in medical decisions for their stepchildren. We investigate opinions of Belgian and Dutch adults regarding inclusion of stepparents in medical decision-making in minors. We make two observations. First, participants wanted stepparents to be involved in cases when medical information had to be shared or informed consent signed. Second, when stepparents object against previously approved medical interventions by a biological parent, respondents were less likely to support stepparents. Participants with stepchildren were likely to favour inclusion of stepparents in decision-making. Overall, our findings indicate that Belgian and Dutch adults view stepparents as potential executive actors in medical decision-making for minors, but not as primary decision-makers. This study is a first step in showing to what extent stepparents could be included in medical information and decision-making regarding stepchildren. We reflect on these findings in light of implications for medical practice and legislative shortcomings.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-10-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"54232333","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Facilitators and barriers to adherence to medical recommendations among adolescents with cancer: A systematic review.","authors":"Ágata Salvador, Shivani Atul Mansuklal, Maria Moura, Carla Crespo, Luísa Barros","doi":"10.1177/13674935231208502","DOIUrl":"https://doi.org/10.1177/13674935231208502","url":null,"abstract":"<p><p>We aimed to systematically review barriers/facilitators of adherence among adolescents with cancer (aged 10-24 years), following a comprehensive approach to adherence that goes beyond medication-taking. Empirical studies published in English exploring determinants of adherence to medical recommendations among adolescents with cancer were identified in MEDLINE, PsycInfo, and Web of Science, up to October 2021. Records and full-text articles were reviewed by two independent reviewers, and results were classified according to the World Health Organization's (WHO) multidimensional adherence model. Eighteen studies were included. Despite heterogeneity in the definition and measurement of adherence, literature supported barriers/facilitators at patient, treatment, condition, healthcare team/system, and social/economic levels. Specifically, patient-related factors (i.e., psychological functioning and beliefs about disease and treatment) and social-related factors (i.e., family functioning) were major determinants of adolescent adherence. Few studies were conducted, and inconsistent findings were displayed for other dimensions (i.e., healthcare team/system, treatment, and condition-related factors). Adherence is a complex and multidetermined phenomenon. More research is needed to provide critical insights for policymakers and healthcare professionals in planning practices and interventions that effectively address meaningful barriers/facilitators of adolescents' adherence.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49684997","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sophie D Bennett, Natalia Rojas, Matteo Catanzano, Anna Roach, Brian Cf Ching, Anna E Coughtrey, Isobel Heyman, Holan Liang, Lucy Project Team, Roz Shafran
{"title":"Feasibility, acceptability and preliminary effectiveness of a mental health drop-in centre for the siblings of young people attending a paediatric hospital.","authors":"Sophie D Bennett, Natalia Rojas, Matteo Catanzano, Anna Roach, Brian Cf Ching, Anna E Coughtrey, Isobel Heyman, Holan Liang, Lucy Project Team, Roz Shafran","doi":"10.1177/13674935231206895","DOIUrl":"https://doi.org/10.1177/13674935231206895","url":null,"abstract":"<p><p>Siblings of children with long-term conditions (LTCs) can have significantly elevated mental health needs, but these are often overlooked. A pragmatic single-arm feasibility pilot assessed feasibility, acceptability and preliminary effectiveness of a drop-in centre in a paediatric hospital addressing mental health needs of patients with LTCs, their carers and siblings. The drop-in centre accepted self-referral and supplemented existing provision offering a suite of interventions, including signposting, diagnostic assessments and/or guided self-help. This paper reports on feasibility, acceptability and preliminary outcomes of this centre for siblings. Eighteen siblings aged 2-17 used the centre. Sixteen of their parents completed the Strengths and Difficulties Questionnaires at baseline and 6 months post-baseline, and ten completed parent-reported PedsQL across two time points. Preliminary effectiveness results demonstrated a decrease in mental health symptoms with large effect size (score reduction of 3.44, 95% CI [1.25, 5.63], d = 0.84) and small effect on quality of life, with scores increasing from a median of 69.91, 95% CI [53.57, 91.67], to a median of 80.44, 95% CI [67.39, 89.13], r = 0.11 for these siblings. 88% of parents were satisfied with this provision for their sibling child. This study highlights the feasibility and value of assessing siblings for emotional and behavioural difficulties and providing them with an accessible, effective and acceptable intervention.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41240981","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Experiences of trust in mothers of hospitalized children toward pediatric nurses.","authors":"Mi-Ra Kim, Sun-Mi Chae","doi":"10.1177/13674935231206214","DOIUrl":"https://doi.org/10.1177/13674935231206214","url":null,"abstract":"<p><p>Trust is an essential component of qualified nursing care and correlated with mothers' satisfaction during child's hospitalization. This exploratory qualitative study was conducted to gain a better understanding of trust from mothers of hospitalized children toward pediatric nurses. Data were collected using semi-structured, in-depth interviews with eight mothers with recently hospitalized children. Collected data were analyzed using thematic analysis. As a result, three themes were identified from this study: \"assessing the trustworthiness of pediatric nurses,\" \"overcoming emotional burden caused by the child's hospitalization,\" and \"newly recognizing the importance of pediatric nurses.\" Seven sub-themes were identified. Mothers reported guilt and stress due to their responsibility as the primary caregiver when children were hospitalized. However, mothers felt empowered and gained confidence when trusting pediatric nurses, recognizing their importance, and accepting their help. The result highlights the essential nature of the mother's trust in pediatric nurses, which in turn facilitated emotional support and empowerment for the mothers. Based on this study's insights into the unique experiences of trust from mothers of hospitalized children, pediatric nurses can explore strategies to facilitate trust-building. Based on these findings, pediatric nurses can develop trust-building strategies, tools to assess the level of trust, and interventions to facilitate trust-building.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41240980","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarah A Elliott, Shannon D Scott, Kelsey S Wright, Lisa Hartling
{"title":"Establishing priorities in child health: Giving parents and youth a voice.","authors":"Sarah A Elliott, Shannon D Scott, Kelsey S Wright, Lisa Hartling","doi":"10.1177/13674935231205041","DOIUrl":"https://doi.org/10.1177/13674935231205041","url":null,"abstract":"<p><p>Parents and youth across Alberta were engaged to identify specific research questions that are a priority to them. Two lists, containing 27 topics were developed with local parent and youth advisory groups, and sent to participants via online questionnaires. Topics were rated from one (least important) to five (most important) and ranked in order of priority. Initial questionnaires were completed by 263 (46%) parents and 308 (54%) youth. Parents rated five topics (behaviour, learning, and developmental disorders; mental health; food, environment and lifestyle; quality of health care; and vaccines) and youth rated four topics (brain and nerve health; mental health; quality of health care; and vaccines) as a high priority. Research questions stemming from 4 parent (12 [5%]) and 6 youth (21 [7%]) focus group discussions were then ranked in a second questionnaire, completed by 43 (43%) parents and 56 (56%) youth. Parents' highest ranked research question was 'What is the effect of screen time on cognition and neurodevelopment for children and adolescents?', while the highest ranked question from youth was 'What are the early signs of anxiety and depression and when should an individual seek help?'. These topics highlight areas that are important to parents and youth where funding, research, and knowledge mobilization efforts should be directed.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41240979","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Vanessa C Fong, Jennifer Baumbusch, Koushambhi Basu Khan
{"title":"\"A very different place from when the pandemic started\": Lessons learned for improving systems of care for families of children with medical complexity.","authors":"Vanessa C Fong, Jennifer Baumbusch, Koushambhi Basu Khan","doi":"10.1177/13674935231203274","DOIUrl":"https://doi.org/10.1177/13674935231203274","url":null,"abstract":"<p><p>Coronavirus disease 2019 (COVID-19) created unprecedented challenges for everyone, but especially families of children with medical complexity (MC) who rely on a comprehensive range of health and social services in their daily lives. Yet despite this, there are limited studies exploring caregiver perspectives regarding access to health and social services during the pandemic. To address this gap, we aimed to explore how health and social services can better meet the needs of children with MC and their families. Sixteen parents residing with their children with MC (from birth to 18 years) in British Columbia, Canada participated in semi-structured interviews between July 2021 and April 2022. Findings revealed two different areas to improve services for families of children with MC, those relating to technology and family-centered care. Parents prioritized expanding the use of digital communication tools to support service navigation and scheduling. Virtual platforms were viewed as being valuable for building connections with other families and their community. In terms of family-centered care, parents emphasized the importance of policies recognizing the physical, emotional, and financial needs of the family. Findings have important implications for improving services to enhance the well-being and quality of life of children with MC and their families.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41123703","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Transitioning from paediatric to adult healthcare: Exploring the practices and experiences of care providers.","authors":"Jennifer Splane, Shelley Doucet, Alison Luke","doi":"10.1177/13674935231202870","DOIUrl":"https://doi.org/10.1177/13674935231202870","url":null,"abstract":"<p><p>Complex paediatric health conditions are increasingly associated with survival into adulthood resulting in more youth with complex care needs (CCN) transitioning from paediatric to adult healthcare. Current transition practices, when present, are disorganized, resulting in health status deterioration and complications due to unmet needs. The aim of this qualitative descriptive study is to develop a broader understanding of the current transition practices and experiences, as well as recommendations of care providers who support youth with CCN in the transition from paediatric to adult healthcare. Fifteen care providers from two Eastern Canadian provinces were interviewed using a semi-structured interview guide. The data collected were analyzed using inductive thematic analysis following the six phases outlined by Braun and Clarke (2006). The findings from this research demonstrate (1) a shortage of care providers, (2) inconsistent timing for transition initiation, and (3) lack of available community resources and services. Participant recommendations include (1) a designated transition coordinator; (2) transition policy implementation; (3) improved collaboration between and across care teams; and (4) the integration of virtual care to facilitate the transition process. The results of this study can potentially improve transition practices and policies and guide future research in this area.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41151556","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}