Danton Matheus de Souza, Rodrigo Dos Santos Nascimento, Ana Paula Scoleze Ferrer, Mariana Vieira de Souza, Lisabelle Mariano Rossato, Elaine Buchhorn Cintra Damião
{"title":"Family perceptions of prolonged hospitalization for children with complex chronic conditions: Between losses and adaptations in an uncertain future.","authors":"Danton Matheus de Souza, Rodrigo Dos Santos Nascimento, Ana Paula Scoleze Ferrer, Mariana Vieira de Souza, Lisabelle Mariano Rossato, Elaine Buchhorn Cintra Damião","doi":"10.1177/13674935251318073","DOIUrl":"https://doi.org/10.1177/13674935251318073","url":null,"abstract":"<p><p>The aim of this study was to understand the family perception and emotional impacts on caregivers of children with chronic conditions who remained hospitalized in intensive care units for an extended period. A qualitative, descriptive-exploratory study, grounded in symbolic interactionism, was conducted with 10 primary caregivers of children with long-term experience in a Brazilian intensive care unit. Interviews were conducted, either remotely or in person, and were analyzed using thematic content analysis supplemented by lexical analysis. Through symbolic interactions, it was observed that families had to reorganize themselves in the face of a context filled with insecurities and permeated by losses. These losses begin with the diagnosis of the chronic condition and are intensified by prolongated hospitalization, which brings numerous uncertainties about the child's future, leading to a reorganization of life. Over time, some families experience discharge and must adapt to home care; others remain hospitalized, continuing to face impactful experiences; and some have lost their child, having to reorganize themselves during grief. This study highlights the urgent need to reflect on ways to care for families, aiming to reduce the impacts experienced during prolonged hospitalizations and to empower them in the care of the child.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251318073"},"PeriodicalIF":1.3,"publicationDate":"2025-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143069736","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}
Lyndsay Mackay, Tammie Dewan, Lauren Asaad, Francine Buchanan, K Alix Hayden, Lara Montgomery, Una Chang
{"title":"The health and well-being of children with medical complexity and their parents' when admitted to inpatient care units: A scoping review.","authors":"Lyndsay Mackay, Tammie Dewan, Lauren Asaad, Francine Buchanan, K Alix Hayden, Lara Montgomery, Una Chang","doi":"10.1177/13674935241312299","DOIUrl":"https://doi.org/10.1177/13674935241312299","url":null,"abstract":"<p><p>Children with medical complexity (CMC) are regularly admitted to inpatient care units to receive medical care. While admissions for CMC and their parents can negatively impact their health and well-being, mapping of evidence in this area appears underreported. A scoping review using the Joanna Briggs Institute methodology was conducted to map evidence on CMC and parents' experiences of care. The purpose of this paper is to report the findings from the scoping review specific to CMC and parents' experiences of care on their health and well-being. A total of 24 articles were synthesized, and themes included: psychological impacts for parents, impacts on functions of daily living, parents' coping strategies for psychological well-being, impacts of hospitalization on CMC, CMC coping strategies, spirituality, and interventional studies. Findings from this review demonstrate that CMC and their parents struggled with their psychological and emotional well-being and that both CMC and parents coped with the stress of hospitalization in a variety of ways. Healthcare professionals need to be educated on how to support CMC and their parents during hospitalization. Future development and implementation of innovative care models and interventions that offer CMC and their parents with enhanced psychosocial support are recommended.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935241312299"},"PeriodicalIF":1.3,"publicationDate":"2025-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143069739","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}
Maryanne Murphy, Hugh Fulham-McQuillan, Agnes Higgins, Maria Brenner
{"title":"An evaluation of the impact of a cancer support specialist service on families of children with cancer and the multidisciplinary team in a children's health service in Ireland.","authors":"Maryanne Murphy, Hugh Fulham-McQuillan, Agnes Higgins, Maria Brenner","doi":"10.1177/13674935241312722","DOIUrl":"https://doi.org/10.1177/13674935241312722","url":null,"abstract":"<p><p>The onset of childhood cancer is sudden and unexpected, and the effect on the family unit can be enormous as they embark on a major life transition. Families of children with cancer have a high level of psychosocial needs due to the many challenges they may face during their child's cancer journey. Previous research indicates that the current healthcare system does not always meet these needs. This qualitative descriptive study aimed to explore the impact of a new Cancer Support Specialist Service from the perspective of the families and the multidisciplinary team. Data were collected using semi-structured one-to-one interviews. The impact on the family was increased emotional, practical, informational, and navigational support. The impact on the MDT included freeing up time for the clinical component of their work, decreasing worry that unmet needs for parents were not being addressed, and increasing access to timely flexible support for families. The knowledge advanced by this study can inform future planning of the Cancer Support Specialist Service.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935241312722"},"PeriodicalIF":1.3,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142933531","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}
Jennifer H Staab, Suhong Tong, Jennifer S Gerson, Claire E Simonsen
{"title":"Screening pediatric patients to determine need for child life services using the pediatric emotional safety screener.","authors":"Jennifer H Staab, Suhong Tong, Jennifer S Gerson, Claire E Simonsen","doi":"10.1177/13674935241312989","DOIUrl":"https://doi.org/10.1177/13674935241312989","url":null,"abstract":"<p><p>There can be adverse psychosocial outcomes for children who have negative healthcare experiences. Identifying children's risk for experiencing elevated distress early on when entering the healthcare setting would allow targeted, proactive support to help mitigate negative psychological sequelae. The aim of this retrospective study was to evaluate the psychometric properties of the Pediatric Emotional Safety Screener (PESS), designed to screen for psychosocial distress for pediatric patients. A Child Life Department conducted a program evaluation, screening 1643 patients using the PESS in six different service areas including acute inpatient, critical care, emergency department, radiology, surgery, and ambulatory clinics. Certified child life specialists (CCLS) completed a Psychosocial Risk Assessment in Pediatrics (PRAP) and provided their assessment of priority level for child life support for each patient screened. Secondary analysis of the data evaluated the psychometric properties of the PESS. Findings indicated good internal consistency for the PESS. PESS scores significantly correlated with both PRAP scores and CCLS priority level. The PESS is a promising standardized method for health-care providers to screen pediatric patients' risk for experiencing significant distress during their healthcare visit to determine the need for support from a CCLS.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935241312989"},"PeriodicalIF":1.3,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142933615","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":"Interventions for improving treatment adherence in young people with inflammatory bowel disease (IBD): A systematic review of behaviour change theory and behaviour change techniques.","authors":"Cassandra Screti, Lou Atkinson, Rachel Shaw, Rafeeq Muhammed, Gemma Heath","doi":"10.1177/13674935241310893","DOIUrl":"https://doi.org/10.1177/13674935241310893","url":null,"abstract":"<p><p>Treatment adherence is important but challenging for young people with inflammatory bowel disease (IBD). Behavioural interventions may support adherence, leading to improved condition management. This review aimed to evaluate interventions designed to improve treatment adherence in young people (aged 13-18) with IBD and identify their use of behaviour change theory and behaviour change techniques (BCTs). Five databases (PsycInfo, Embase, MEDLINE, Web of Science and Scopus) were searched to identify eligible articles published between 1980 and 2022. Articles were critically appraised using the Mixed Methods Appraisal Tool. Findings were synthesised narratively. Seven articles reporting seven oral medication adherence interventions were included. Study designs included five randomised controlled trials and two single-arm clinical trials. Eleven BCTs were identified across seven articles. No article discussed how an intervention was informed by behaviour change theory. Interventions that included additional family members and/or offered tailored adherence support generally had greater effects, as did interventions including education and goal setting components. Reporting of intervention content was poor, limiting our ability to make concrete recommendations regarding intervention effectiveness, use of behaviour change theory and BCTs. Further research is needed to understand how theory-driven behaviour change interventions can improve treatment adherence in young people with IBD.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935241310893"},"PeriodicalIF":1.3,"publicationDate":"2024-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142866409","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}
Hala Mahmoud Obeidat, Haytham Mohammad Al-Oran, Ghadeer Hjazeen, Doa'a Abdullah Dwairej, Aseel Hussein Obeidat, Ferdous Hasan Omari, Diana Arabiat
{"title":"\"When I gave him the insulin injection, I felt the pain in my heart\": Experiences of parents of young children with type 1 diabetes in an Arab country.","authors":"Hala Mahmoud Obeidat, Haytham Mohammad Al-Oran, Ghadeer Hjazeen, Doa'a Abdullah Dwairej, Aseel Hussein Obeidat, Ferdous Hasan Omari, Diana Arabiat","doi":"10.1177/13674935241309509","DOIUrl":"https://doi.org/10.1177/13674935241309509","url":null,"abstract":"<p><p>Type 1 diabetes mellitus in children is one of the most common chronic health conditions, requiring constant monitoring and care. Living with children who are diagnosed with chronic illness affects multiple aspects of parents' daily lives, including the physical, mental, and social aspects. Due to their child's diabetes, parents may experience many special difficulties with their daily responsibilities. This study describes parental experiences caring for a child with type 1 diabetes. The study was based on semi-structured interviews with 10 parents caring for a child with type 1 diabetes. We analyzed the interviews using Colaizzi's strategy of descriptive phenomenological data analysis in nursing research. Participants were described a profoundly challenging situation, and they were in need of support to help them handle a challenging life situation, especially during the first years of a child's diagnosis. The following themes emerged from the data: adapting to the new reality after diagnosis, keeping up with the child's treatment regimen, psychological, social, and financial burdens, and staying tuned for complications.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935241309509"},"PeriodicalIF":1.3,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142856822","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}
Eun Kyoung Choi, Yoonhye Ji, Eunyoung Jung, Eunjeong Bae
{"title":"Factors associated with transition readiness among adolescents and young adults with spina bifida in South Korea.","authors":"Eun Kyoung Choi, Yoonhye Ji, Eunyoung Jung, Eunjeong Bae","doi":"10.1177/13674935241302438","DOIUrl":"https://doi.org/10.1177/13674935241302438","url":null,"abstract":"<p><p>This study aimed to examine the factors associated with transition readiness based on the healthcare transition model among adolescents and young adults (AYAs) with spina bifida (SB) in the individual (self-management and self-efficacy), family or social support (family function and social support), healthcare system, and environmental (transition environment) domains. Using face-to-face and online surveys, we conducted a cross-sectional study on AYAs with SB in South Korea. The participants were aged 13-25 years. Data were analyzed using descriptive statistics, <i>t</i> test, one-way analysis of variance, Pearson's correlation coefficients, and multiple regression analysis. A total of 110 AYAs with SB participated in this study. Their mean age was 19.85 (SD = 3.65) years. The mean score of transition readiness was 3.89 (SD = 0.70) out of 5. Transition readiness was statistically significantly associated with general (age), clinical (mobility), and individual (self-management) characteristics and family or social support (social support) and the healthcare system. These results suggest that it is necessary to develop tailored transition care programs that consider factors associated with transition readiness for AYAs with SB. The findings of this study increase our understanding of the transition readiness of AYAs with SB, which can help in the development of effective transition strategies.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935241302438"},"PeriodicalIF":1.3,"publicationDate":"2024-12-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142792853","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}
Jessica F Rohde, Kimberly Canter, Madison Houff, Barry Bodt, Lee M Pachter, Matthew D Di Guglielmo, Neera Goyal
{"title":"Pediatric primary care clinicians' views on needs and challenges in caring for infants with intrauterine opioid exposure and their families.","authors":"Jessica F Rohde, Kimberly Canter, Madison Houff, Barry Bodt, Lee M Pachter, Matthew D Di Guglielmo, Neera Goyal","doi":"10.1177/13674935231168676","DOIUrl":"10.1177/13674935231168676","url":null,"abstract":"<p><p>Opioid use disorder (OUD) during pregnancy has risen in the U.S. over the past two decades, resulting in a growing number of children with intrauterine opioid exposure (IOE). Limited research exists supporting best practices to optimize primary care for these children and their families, particularly mothers with OUD. Using a modified Delphi method, we surveyed pediatric primary care clinicians from a single children's health care system regarding their experiences in caring for this population. In Phase 1, open-ended survey questions inquired about needs and challenges facing these infants, their families, and clinicians and resources within primary care. After thematic analysis, the most frequent responses were presented as a Phase 2 survey for clinicians to select their top five. Percentages for the most commonly selected top five themes were tabulated. Survey response rates were 58/139 (42%) for Phase 1 and 45/137 (33%) for Phase 2. For infants with IOE and their families, respondents identified parenting knowledge and family issues related to maternal OUD as top challenges, with limited resources to address them in primary care. Clinicians identified time constraints and follow-up issues as top challenges. Future intervention in pediatric primary care could include addressing parenting education, resource gaps, and best practice recommendations in caring for children with IOE.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"849-864"},"PeriodicalIF":1.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9283374","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":"Relationships between parenting and illness factors and child behaviour difficulties in children with asthma and/or eczema.","authors":"Alina Morawska, Evren Etel, Amy E Mitchell","doi":"10.1177/13674935231155964","DOIUrl":"10.1177/13674935231155964","url":null,"abstract":"<p><p>Chronic health conditions such as asthma and eczema are common and are associated with significant psychosocial sequelae for children and their families. A number of parenting variables have been implicated in child health outcomes; however, there are gaps in understanding of the relationships between parenting and child adjustment in the context of chronic illness. This study examined the role that modifiable parenting factors including parenting style, self-efficacy, and adjustment play in explaining general and illness-related child behaviour and emotional problems. Parents (<i>N</i> = 107) of children diagnosed with asthma only (<i>n</i> = 22), eczema only (<i>n</i> = 59), or both conditions (<i>n</i> = 26) completed a range of parenting and child adjustment measures. The majority of the modifiable parenting factors (parents' self-efficacy with managing their child's internalising, asthma-related, and eczema-related behaviours; parent adjustment; and use of ineffective parenting strategies) made significant contributions to explaining variance child behaviour. Parenting variables consistently explained greater proportions of variance in general and illness-related child behaviour difficulties compared to demographic and illness factors and represent important intervention targets.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"829-848"},"PeriodicalIF":1.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9638434","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":"Changing bodies: A scoping review and thematic analysis of family experience during serious childhood illness.","authors":"Emma Maynard, Megan Bennett","doi":"10.1177/13674935231168683","DOIUrl":"10.1177/13674935231168683","url":null,"abstract":"<p><p>This scoping review has investigated experiences of children and parents encountering in-patient treatment for serious childhood illness, including current or potential use of technology as a support mechanism. The research questions were 1. What do children experience during illness and treatment? 2. What do parents experience when their child is seriously ill in hospital? 3. What tech and non-tech interventions support children's experience of in-patient care? The research team identified <i>n</i> = 22 relevant studies for review through JSTOR, Web of Science, SCOPUS and Science Direct. A thematic analysis of reviewed studies identified three key themes reflecting our research questions: <i>Children in hospital, Parents and their children,</i> and <i>Information and technology</i>. Our findings reflect that information giving, kindness and play are central in hospital experiences. Parent and child needs in hospital are interwoven and under researched. Children reveal themselves as active producers of pseudo-safe spaces who continue to prioritise normal child and adolescent experiences during in-patient care.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"914-926"},"PeriodicalIF":1.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11607840/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9629047","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}