Journal of Child Health Care最新文献_第2页

Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study. 患有严重慢性疾病儿童的父母的心理健康：一项横断面调查研究。

IF 1.6 4区医学

Journal of Child Health Care Pub Date : 2025-09-01 Epub Date: 2024-03-29 DOI: 10.1177/13674935241238485

Eden G Robertson, Lauren Kelada, Robert Ilin, Elizabeth Emma Palmer, Ann Bye, Adam Jaffe, Sean E Kennedy, Chee Y Ooi, Donna Drew, Claire E Wakefield

{"title":"Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study.","authors":"Eden G Robertson, Lauren Kelada, Robert Ilin, Elizabeth Emma Palmer, Ann Bye, Adam Jaffe, Sean E Kennedy, Chee Y Ooi, Donna Drew, Claire E Wakefield","doi":"10.1177/13674935241238485","DOIUrl":"10.1177/13674935241238485","url":null,"abstract":"Parents of a child with a chronic illness can experience greater distress than the average population, yet little is understood about differences between illness groups. This cross-sectional survey study aimed to compare parents' psychological distress and perceived wellbeing across five chronic illnesses. Parents from one Australian pediatric hospital completed the Kessler Psychological Distress Scale and seven purpose-designed items about their wellbeing. Data from 106 parents (cancer = 48, cystic fibrosis [CF] = 27, kidney disease = 12, gastrointestinal condition/disorder = 9, developmental and epileptic encephalopathy [DEE] = 10) was analysed using bivariate Pearson's Correlation and linear mixed-effects models. Parents' distress scores differed between groups (F(4,80) = 2.50, p = .049), with the DEE group reporting higher distress than the CF group (mean difference = 6.76, 95% CI [0.11, 13.42]). Distress scores were moderately correlated to parents' perceptions of their child's health and their own wellbeing. Parents' self-reported coping with their child's condition/treatments differed (F(4,81) = 3.24, p = .016), with the DEE group rating their coping as poorer than the CF group (mean difference = -25.32, 95% CI [-46.52, 4.11]). Across all groups, parents reported unmet needs, particularly for psychosocial support and practical/financial assistance. Support interventions may be most effective if tailored to the child's illness, with greater support potentially needed for parents who have a child with DEE and/or severe comorbidities.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"626-641"},"PeriodicalIF":1.6,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12368296/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140327419","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}

引用次数: 0

Experiences and expectations of parents when young people with congenital heart disease transfer from pediatric to adult care: A qualitative systematic review. 患有先天性心脏病的年轻人从儿科转入成人护理时，父母的经历和期望：定性系统回顾。

IF 1.6 4区医学

Journal of Child Health Care Pub Date : 2025-09-01 Epub Date: 2024-02-08 DOI: 10.1177/13674935241231024

Birgitte Lykkeberg, Marianne Wetendorff Noergaard, Merete Bjerrum

{"title":"Experiences and expectations of parents when young people with congenital heart disease transfer from pediatric to adult care: A qualitative systematic review.","authors":"Birgitte Lykkeberg, Marianne Wetendorff Noergaard, Merete Bjerrum","doi":"10.1177/13674935241231024","DOIUrl":"10.1177/13674935241231024","url":null,"abstract":"Parents encounter challenges when their child with congenital heart disease is transferred from pediatric to adult care. Until recently these parents' experiences and expectations of their child's transfer have received less attention. This systematic review aims to identify and synthesize qualitative evidence on parental experiences and expectations about their child's transfer from pediatric to adult care using a meta-aggregation approach. Six studies were included with 39 findings being aggregated into seven categories. Three syntheses were formed: Information is a prerequisite for supporting young people's transfer. The transition process should be well-prepared, individualized, and based on young people's maturity. Changing parental roles causes ambivalent feelings requiring support in the transfer process. Parents regard transfer from pediatric to adult care as a natural developmental step. However, some parents are anxious and worried while others found the transfer as feasible as other transitions in their child's life. Involving parents in the transition process enables them to facilitate their child's transfer. Parents worry their child is too young to take responsibility for their health. Parental roles from being a full caregiver to becoming a supportive person cause ambivalent feelings. These findings align with research on parents' experiences of young people with long-term conditions.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"716-733"},"PeriodicalIF":1.6,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139708592","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}

引用次数: 0

Consequences of the Coronavirus disease 2019 pandemic on child and adolescent mental, psychosocial, and physical health: A scoping review and interactive evidence map. 2019 年冠状病毒疾病大流行对儿童和青少年精神、社会心理和身体健康的影响：范围综述和互动证据图。

IF 1.6 4区医学

Journal of Child Health Care Pub Date : 2025-09-01 Epub Date: 2024-03-19 DOI: 10.1177/13674935241238794

Liza Bialy, Sarah A Elliott, Alison Melton, Samina Ali, Shannon D Scott, Lisa Knisley, Lisa Hartling

{"title":"Consequences of the Coronavirus disease 2019 pandemic on child and adolescent mental, psychosocial, and physical health: A scoping review and interactive evidence map.","authors":"Liza Bialy, Sarah A Elliott, Alison Melton, Samina Ali, Shannon D Scott, Lisa Knisley, Lisa Hartling","doi":"10.1177/13674935241238794","DOIUrl":"10.1177/13674935241238794","url":null,"abstract":"Effects of the Coronavirus disease 2019 (COVID-19) pandemic on children stem beyond immediate infectious and post-infectious risks. Our aim was to conduct a scoping review and produce an online Interactive Evidence Map (IEM) highlighting available literature around unintended effects of the pandemic on children's and adolescents' mental, psychosocial, and physical health. A search was run monthly in MEDLINE, PsycINFO, CENTRAL, and Cochrane COVID-19 Study Register from May 1st 2021 through April 30th 2022. All articles involving children and adolescents under 18 years of age relating to any unintended mental, psychosocial, and physical health consequences of the pandemic and resultant restrictions were included. Data were extracted and topics categorized, with corresponding data uploaded into EPPI-Reviewer and transferred to EPPI-Mapper for visualization. A total of 14,555 citations were screened and 826 (6%) articles included. Most articles reported on mental health outcomes, particularly anxiety (n = 309, 37%) and depression (n = 294, 36%). Psychosocial outcomes related to lockdowns such as loneliness (n = 120, 15%) and impact on adolescent relationships with others (n = 149, 18%) were also reported. Fewer articles examined physical consequences, but those that did mostly focused on child abuse (n = 73, 9%). Overall, currently mapped literature focuses on consequences related to mental health outcomes such as anxiety and depression.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"589-603"},"PeriodicalIF":1.6,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12368300/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140177732","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}

引用次数: 0

Risk mitigation strategies for children and young people admitted with mental health crisis to acute paediatric care: A systematic review with narrative synthesis. 因精神健康危机入院接受急性儿科护理的儿童和青少年的风险缓解策略：一项具有叙事综合的系统综述。

IF 1.6 4区医学

Journal of Child Health Care Pub Date : 2025-08-29 DOI: 10.1177/13674935251374808

Takawira C Marufu, Aikaterina Kaltsa, Zaki Albelbisi, Timothy Carter, Jane Coad, Sarah J Bolton, Philip Breedon, Michael P Craven, Kate Frost, Anthony Harbottle, Elizabeth Hendron, Julian Patel, Laura Rad, Peter White, Damian Wood, Joseph C Manning

{"title":"Risk mitigation strategies for children and young people admitted with mental health crisis to acute paediatric care: A systematic review with narrative synthesis.","authors":"Takawira C Marufu, Aikaterina Kaltsa, Zaki Albelbisi, Timothy Carter, Jane Coad, Sarah J Bolton, Philip Breedon, Michael P Craven, Kate Frost, Anthony Harbottle, Elizabeth Hendron, Julian Patel, Laura Rad, Peter White, Damian Wood, Joseph C Manning","doi":"10.1177/13674935251374808","DOIUrl":"https://doi.org/10.1177/13674935251374808","url":null,"abstract":"Globally, the number of Children and Young People (CYP) that experience mental health crisis and access paediatric acute hospital settings continues to increase. Many of these CYP present with thoughts and behaviours of self-harm and/or suicide and often experience severe and fluctuating emotional states. It is therefore important that the risk of self-harm/suicide is assessed during an inpatient admission and strategies implemented to mitigate risk. This study aimed to identify self-harm and suicidality risk management pathways that have been developed and evaluated for use with CYP admitted to acute hospital settings with mental health crisis. A systematic review was conducted. Eight online academic database were searched up to February 2022. The critical appraisal skills programme tool was used to assess the methodological rigour of included studies. Online searches identified 120 potential studies. Five studies met the predefined inclusion criteria. Six risk mitigation strategies were identified; safety huddles, urgent full mental psychiatric review within 2-h of assessment, feedback on screening responses, motivational and barrier-reducing intervention, 1:1 constant observations and environmental safety. All included strategies targeted environmental, family, and individual CYP involving modifications to equipment, surveillance, and communication to enhance safety.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251374808"},"PeriodicalIF":1.6,"publicationDate":"2025-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144978614","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}

引用次数: 0

Experiences of parents caring for more than one child with the same chronic or serious illness in Occupied Palestinian Territory: A qualitative study. 在巴勒斯坦被占领土内，父母照顾一个以上患有同样慢性或严重疾病的儿童的经历：一项定性研究。

IF 1.6 4区医学

Journal of Child Health Care Pub Date : 2025-08-28 DOI: 10.1177/13674935251375126

Maha Atout, Intima Alrimawi, Abd Al-Hadi Hasan, Atheer Qashou

{"title":"Experiences of parents caring for more than one child with the same chronic or serious illness in Occupied Palestinian Territory: A qualitative study.","authors":"Maha Atout, Intima Alrimawi, Abd Al-Hadi Hasan, Atheer Qashou","doi":"10.1177/13674935251375126","DOIUrl":"https://doi.org/10.1177/13674935251375126","url":null,"abstract":"In Occupied Palestinian territory (OPT), which is in a complex political situation and has limited access to resources, there is a critical need to deepen the understanding of how children with life-limiting and life-threatening illnesses are cared for. This study explores the experiences of parents caring for more than one child with a chronic or serious illness. A qualitative descriptive method was adopted, with data collected from several paediatric units in two OPT cities, Tulkarm and Ramallah. Semi-structured, face-to-face interviews were conducted with 16 parents (each interview was of an individual parent). Data were analysed using thematic analysis, and the analysis unearthed seven major themes that reflected the parents' experiences. These were as follows: Significant life changes with the first child's illness; the second experience; becoming stronger; support systems; economic difficulties; social stigma; and social isolation. Data analyses suggest that there is a significant need for emotional and physical support to be provided to parents, and culturally salient social service provisions should be implemented to alleviate the burden placed on these parents.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251375126"},"PeriodicalIF":1.6,"publicationDate":"2025-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144979152","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}

引用次数: 0

Experiences and insights from parents of children with temporary feeding tubes. 临时喂食管儿童家长的经验与见解。

IF 1.6 4区医学

Journal of Child Health Care Pub Date : 2025-08-23 DOI: 10.1177/13674935251370415

Claire Reilly, Jeanne Marshall, Rebecca Packer, Nikhil Thapar, Maryanne Syrmis, Nadine Frederiksen, Kristie L Bell

{"title":"Experiences and insights from parents of children with temporary feeding tubes.","authors":"Claire Reilly, Jeanne Marshall, Rebecca Packer, Nikhil Thapar, Maryanne Syrmis, Nadine Frederiksen, Kristie L Bell","doi":"10.1177/13674935251370415","DOIUrl":"https://doi.org/10.1177/13674935251370415","url":null,"abstract":"This study aimed to describe parents' experiences of children with temporary feeding tubes by surveying parents whose children required tubes. This survey included three sections including; (A) Depression Anxiety Stress Scale (DASS-21); (B) Paediatric Assessment Scale for Severe Feeding Problems (PASSFP); and (C) open-ended questions on satisfaction and experiences. Data were analysed using descriptive statistics and inductive content analysis. A total of 44 parent participants completed the survey. Most participants reported satisfaction with their child's care, although for most, tube removal occurred after ≤5 days (n = 25, 57%). Children who were discharged home with a temporary feeding tube (n = 7, 16%) had more feeding difficulties. Two themes were identified: 1) navigating tube feeding and 2) health service experiences. Although parents were generally positive about their child's care, some described ongoing medical and psychosocial impacts. Many parents desired more involvement in decision-making and tube feeding care. Parents described varied experiences regarding temporary tube feeding both in hospital and after discharge home. Further studies are needed across all spectrums of temporary tube feeding care, especially those discharged home. These findings underscore a need for enhanced support and education for parents, which could improve outcomes for children with temporary feeding tubes.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251370415"},"PeriodicalIF":1.6,"publicationDate":"2025-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144979219","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}

引用次数: 0

Influence of spoken language and gender identity on healthcare experiences of transgender and non-binary youth living in Quebec, Canada. 口语和性别认同对加拿大魁北克跨性别和非二元青年医疗保健经历的影响

IF 1.6 4区医学

Journal of Child Health Care Pub Date : 2025-08-23 DOI: 10.1177/13674935251370413

Claire Lefebvre, Nicholas Chadi, Ashley B Taylor, Ace Chan, Annie Pullen Sansfaçon, Lyne Chiniara, Kira London-Nadeau, Elizabeth M Saewyc

{"title":"Influence of spoken language and gender identity on healthcare experiences of transgender and non-binary youth living in Quebec, Canada.","authors":"Claire Lefebvre, Nicholas Chadi, Ashley B Taylor, Ace Chan, Annie Pullen Sansfaçon, Lyne Chiniara, Kira London-Nadeau, Elizabeth M Saewyc","doi":"10.1177/13674935251370413","DOIUrl":"https://doi.org/10.1177/13674935251370413","url":null,"abstract":"Whether spoken language influences experiences of trans and non-binary youth (TNBY) with healthcare systems is unknown. We analyzed Quebec data from the Canadian Trans and Non-Binary Youth Health Survey to illustrate healthcare experiences of predominantly French-speaking TNBY aged 14-25 and influence of gender identity and language on those experiences. We included 220 participants of whom 71% identified as French-speaking. Up to 78% reported a mental health problem and 51% reported foregoing mental health care in the last year. Only 26% of non-binary versus 57% of trans youth were comfortable discussing healthcare needs with providers (OR 0.26; 95% CI [0.13-0.54]). English youth were less likely than French youth to be comfortable discussing healthcare needs (aOR 0.33, 95% CI [0.13-0.83]. They were also more likely to forgo care because of negative experiences (aOR 2.21, 95% CI [1.00, 4.87]) and out of fear (aOR 2.38, 96% CI [1.08, 5.28]). Our study found that TNBY had a high prevalence of foregone health care despite a great need. In Quebec, a predominantly French-speaking area within Canada, language-minority English TNBY were less comfortable than French TNBY discussing healthcare needs and accessing needed resources. Limited availability of language-specific resources may be an additional barrier to healthcare access for TNBY.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251370413"},"PeriodicalIF":1.6,"publicationDate":"2025-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144979254","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}

引用次数: 0

Standards of care for pediatric clinical service delivery: A rapid scoping review. 儿科临床服务提供的护理标准：快速范围审查。

IF 1.3 4区医学

Journal of Child Health Care Pub Date : 2025-07-03 DOI: 10.1177/13674935251355056

Brittany Barber, Annette Elliott-Rose, Amanda Higgins, Kristy Hancock, Amy Mireault, Katie McDonald, Stacy Burgess, LeeAnn Larocque, Christine Cassidy

{"title":"Standards of care for pediatric clinical service delivery: A rapid scoping review.","authors":"Brittany Barber, Annette Elliott-Rose, Amanda Higgins, Kristy Hancock, Amy Mireault, Katie McDonald, Stacy Burgess, LeeAnn Larocque, Christine Cassidy","doi":"10.1177/13674935251355056","DOIUrl":"https://doi.org/10.1177/13674935251355056","url":null,"abstract":"When pediatric services are not coordinated, children, youth, and their caregivers cannot always access the right services at the right time. Guidance is needed for how pediatric services should be planned and organized to improve integrated care. The objective of this rapid scoping review was to map and characterize current evidence on standards of care for integrated pediatric levels of service. This rapid scoping review was conducted in accordance with Cochrane Rapid Reviews Interim Guidance. We searched academic databases and gray literature in 2022, published in English from Canada, United States, United Kingdom, Australia, New Zealand, with no date parameter. Fifty-three sources met inclusion criteria and were included in this review. Levels of service frameworks categorized services into three, four, or six distinct levels. Eight sources described integrated levels of service. Most pediatric standards of care frameworks defined levels of service by roles and responsibilities. Differences were defined by transitions between levels of care, planning for services across urban and rural communities, and coordinating integrated levels of service. Future research is required to build evidence base of how levels of service frameworks can be used in practice, adapted to local contexts, and evaluated.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251355056"},"PeriodicalIF":1.3,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144562013","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}

引用次数: 0

A pilot study to explore children's experiences of intensive care post-cardiac arrest using art-based participatory methods. 一项利用基于艺术的参与式方法探索心脏骤停后儿童重症监护经历的试点研究。

IF 1.3 4区医学

Journal of Child Health Care Pub Date : 2025-06-23 DOI: 10.1177/13674935251355323

Donna Thomas, Graeme O'Connor

{"title":"A pilot study to explore children's experiences of intensive care post-cardiac arrest using art-based participatory methods.","authors":"Donna Thomas, Graeme O'Connor","doi":"10.1177/13674935251355323","DOIUrl":"https://doi.org/10.1177/13674935251355323","url":null,"abstract":"Children who have survived a cardiac arrest are at the highest risk of long-term impairment, collectively termed Post Intensive Care Syndrome (PICS). This study aimed to explore through participatory and creative methods, children and young people's (CYP) experiences post-cardiac arrest intensive care. Participatory research includes drawing, painting and small-world play. CYPs were recruited who had been admitted to intensive care post-cardiac arrest and had the cognitive and physical ability to talk, draw, paint or play out their experiences. Seven CYPs and families consented to participate. The median number of interviews was two (IQR2,3), with a median interview length of 24 minutes (IQR15,65 minutes). Themes that emerged: gratitude, distrust and extrasensory experiences. Four of the seven (57%) participants opted to paint or draw to convey their experiences. Two (28%) participants had no memories of their cardiac arrest or time in intensive care but used creative methods to express gratitude to the care team. Participatory research methods may be an effective way for CYPs to convey their experiences of post-cardiac arrest intensive care. CYPs who have been critically ill have expressed a need to make sense of their experiences in intensive care. Healthcare professionals should be aware that these experiences may be deemed as extrasensory and require sensitive exploration.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251355323"},"PeriodicalIF":1.3,"publicationDate":"2025-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144477892","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}

引用次数: 0

Caregiver experiences of children living with a diagnosed neurological disability and using medical cannabis. 患有诊断的神经残疾和使用医用大麻的儿童的照顾者经验。

IF 1.3 4区医学

Journal of Child Health Care Pub Date : 2025-06-20 DOI: 10.1177/13674935251350177

Florriann Fehr, Nan Stevens, Jane Hailey, Lindsay A Lo, Carly A Pistawka, Caroline A MacCallum

{"title":"Caregiver experiences of children living with a diagnosed neurological disability and using medical cannabis.","authors":"Florriann Fehr, Nan Stevens, Jane Hailey, Lindsay A Lo, Carly A Pistawka, Caroline A MacCallum","doi":"10.1177/13674935251350177","DOIUrl":"10.1177/13674935251350177","url":null,"abstract":"Medical cannabis (MC) has recently emerged as a potential treatment option for pediatric neurodevelopmental conditions and epilepsy. Medical cannabis within these conditions remains limited in evidence-based literature. Caregiver experience can play a valuable role in providing real-world evidence. Thus, this study sought to conceptualize primary caregivers' experiences using medical cannabis to treat neurological conditions in their children. A qualitative multiple-case study design was used to ascertain caregiver experiences. Twelve primary caregivers were interviewed to identify four themes: lack of support, perception of efficacy, positive impacts on children and caregivers, and contribution to real-world evidence from caregivers. Caregivers reported symptom improvement in their children and improved quality of life for their child and family. However, caregivers identified a lack of support from the healthcare system as a challenge. This study highlights that while medical cannabis shows promise as a potential treatment option, there is a great need for more research and subsequent healthcare provider education. Significant barriers to caregivers acquiring knowledge and healthcare provider support put patients at risk. The healthcare system must develop better educational programs regarding the potential role of MC (such as the benefits and side effects in different patient groups and regulatory framework for prescribing) to support children and their families better.","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251350177"},"PeriodicalIF":1.3,"publicationDate":"2025-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144334452","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}

引用次数: 0