Pub Date : 2025-12-01Epub Date: 2025-11-20DOI: 10.1177/13674935251400432
Julia Harris, Josephine Ampiah, Mark Thomas, Ulrike Sigg
{"title":"Shining a light on pain.","authors":"Julia Harris, Josephine Ampiah, Mark Thomas, Ulrike Sigg","doi":"10.1177/13674935251400432","DOIUrl":"10.1177/13674935251400432","url":null,"abstract":"","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"777-781"},"PeriodicalIF":1.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145566095","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}
Pub Date : 2025-12-01Epub Date: 2024-09-27DOI: 10.1177/13674935241272004
Eva Runngren, Karin Blomberg, Lina Schollin Ask, Emma Appelqvist, Madelene Danielsson, Mats Eriksson
The aim of this study was to investigate Swedish children's and parents' attitudes and knowledge about human papillomavirus (HPV) vaccination a year after gender-neutral HPV vaccination was introduced in Sweden's national immunization program (NIP). Additional information about HPV and vaccine was provided in the extended immunazation program. In total, 276 parents and 206 children from 22 School Health Services responded to a web-based survey. Results showed that half of the children and about a third of the parents received additional Public Health Agency information about HPV vaccination, and a majority were satisfied. Parents considered HPV vaccination being important for their children's health, and both children and parents considered it important to vaccinate all genders against HPV. Both children and parents rated school nurses as most reliable source of HPV vaccination information. Teachers were also a common source of HPV and HPV vaccination information for children. Further research among teachers in Sweden is needed to explore their knowledge and abilities to inform students and parents about HPV and vaccination.
{"title":"Children's and parents' attitudes to and knowledge about HPV vaccination following a targeted information intervention.","authors":"Eva Runngren, Karin Blomberg, Lina Schollin Ask, Emma Appelqvist, Madelene Danielsson, Mats Eriksson","doi":"10.1177/13674935241272004","DOIUrl":"10.1177/13674935241272004","url":null,"abstract":"<p><p>The aim of this study was to investigate Swedish children's and parents' attitudes and knowledge about human papillomavirus (HPV) vaccination a year after gender-neutral HPV vaccination was introduced in Sweden's national immunization program (NIP). Additional information about HPV and vaccine was provided in the extended immunazation program. In total, 276 parents and 206 children from 22 School Health Services responded to a web-based survey. Results showed that half of the children and about a third of the parents received additional Public Health Agency information about HPV vaccination, and a majority were satisfied. Parents considered HPV vaccination being important for their children's health, and both children and parents considered it important to vaccinate all genders against HPV. Both children and parents rated school nurses as most reliable source of HPV vaccination information. Teachers were also a common source of HPV and HPV vaccination information for children. Further research among teachers in Sweden is needed to explore their knowledge and abilities to inform students and parents about HPV and vaccination.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"962-974"},"PeriodicalIF":1.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12662824/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332451","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}
Pub Date : 2025-12-01Epub Date: 2024-09-27DOI: 10.1177/13674935241287865
Gemma Heath, Cassandra Screti, Rebecca Knibb
Wish-granting is a form of positive psychological intervention that seeks to promote child wellbeing by fulfilling a wish of their choice. This study aimed to explore families' experiences of receiving wish-granting interventions to understand how wishes impact wellbeing. Fifty in-depth semi-structured interviews were carried out with 22 families (23 parents, 17 young people); seven charity volunteers; and five health professionals, recruited from the United Kingdom. Interviews were transcribed verbatim and analysed using a thematic framework approach. Findings suggest wishes improve wellbeing by increasing positive emotion; by broadening families' horizons; by providing an alternative focus; and by fostering opportunities for togetherness. To grow and maintain impact, consideration should be given to developing strategies that increase anticipation; keep wish memories alive; encourage children to make wishes that stretch their perceived limitations; and facilitate families to share their experiences and 'give back' to the community.
{"title":"Exploring how 'wish-granting' interventions foster wellbeing for children with life-threatening health conditions and their families: A qualitative study.","authors":"Gemma Heath, Cassandra Screti, Rebecca Knibb","doi":"10.1177/13674935241287865","DOIUrl":"10.1177/13674935241287865","url":null,"abstract":"<p><p>Wish-granting is a form of positive psychological intervention that seeks to promote child wellbeing by fulfilling a wish of their choice. This study aimed to explore families' experiences of receiving wish-granting interventions to understand how wishes impact wellbeing. Fifty in-depth semi-structured interviews were carried out with 22 families (23 parents, 17 young people); seven charity volunteers; and five health professionals, recruited from the United Kingdom. Interviews were transcribed verbatim and analysed using a thematic framework approach. Findings suggest wishes improve wellbeing by increasing positive emotion; by broadening families' horizons; by providing an alternative focus; and by fostering opportunities for togetherness. To grow and maintain impact, consideration should be given to developing strategies that increase anticipation; keep wish memories alive; encourage children to make wishes that stretch their perceived limitations; and facilitate families to share their experiences and 'give back' to the community.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"920-934"},"PeriodicalIF":1.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12662841/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332452","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}
Pub Date : 2025-12-01Epub Date: 2024-06-04DOI: 10.1177/13674935241249597
Emma Jeffs, Fiona Newall, Clare Delany, Sharon Kinney
Morbidity and Mortality meetings are conducted in varied clinical contexts including paediatrics. Widely cited as an educational or quality improvement tool, the reality is more complex. In this qualitative study, the aim was to explore the perceived goals of the paediatric acute care Morbidity and Morbidity meeting. This study used semi-structured interviews and observation within a qualitative case study methodology. Data were collected in a large paediatric quaternary hospital. Analysis generated themes related to meeting observations and the participant's interpretation of meeting goals. A total of 44 interviews were conducted with 14 nurses, 29 doctors, and 1 allied health professional. Thirty-two meetings in six clinical departments were observed. Two themes were developed: complex and nuanced goals; and tensions and contest between and within goals. Meeting goals to evaluate care, learn, support, adhere, and change and respond were sometimes in competition and had varied interpretations. Morbidity and Mortality meetings in this setting are valued and occupy a complex role which reaches beyond identification of measurable patient safety interventions. Understanding goals more fully can lead to optimised conduct and meaningful measurement of efficacy. The strength in these meetings may be the way they promote an embedded safety culture, and an informed and skilled workforce.
{"title":"Goals of Morbidity and Mortality meetings in paediatric acute care. A qualitative case study.","authors":"Emma Jeffs, Fiona Newall, Clare Delany, Sharon Kinney","doi":"10.1177/13674935241249597","DOIUrl":"10.1177/13674935241249597","url":null,"abstract":"<p><p>Morbidity and Mortality meetings are conducted in varied clinical contexts including paediatrics. Widely cited as an educational or quality improvement tool, the reality is more complex. In this qualitative study, the aim was to explore the perceived goals of the paediatric acute care Morbidity and Morbidity meeting. This study used semi-structured interviews and observation within a qualitative case study methodology. Data were collected in a large paediatric quaternary hospital. Analysis generated themes related to meeting observations and the participant's interpretation of meeting goals. A total of 44 interviews were conducted with 14 nurses, 29 doctors, and 1 allied health professional. Thirty-two meetings in six clinical departments were observed. Two themes were developed: complex and nuanced goals; and tensions and contest between and within goals. Meeting goals to evaluate care, learn, support, adhere, and change and respond were sometimes in competition and had varied interpretations. Morbidity and Mortality meetings in this setting are valued and occupy a complex role which reaches beyond identification of measurable patient safety interventions. Understanding goals more fully can lead to optimised conduct and meaningful measurement of efficacy. The strength in these meetings may be the way they promote an embedded safety culture, and an informed and skilled workforce.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"861-876"},"PeriodicalIF":1.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141238833","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}
Pub Date : 2025-12-01Epub Date: 2024-10-03DOI: 10.1177/13674935241289159
Belachew Dejene Wondemagegnehu, Addisu Andargie
Hirschsprung's disease is a common cause of lower intestinal obstruction in newborns. It has variable postoperative outcomes affecting quality of life. The study was aimed at assessing postoperative bowel function in children with Hirschsprung's disease. It was conducted on 120 children operated for Hirschsprung's disease. A structured questionnaire for bowel function score was used and analyzed using relevant statistical tests. Of the 120 children in the study, 97 (80.8%) were male with 49 (40.8%) diagnosed during neonatal age and others by 2 years of age. Ninety-three (77.5%) of them had the classic type. Diversion colostomy was done in 104 (86.6%), and two-staged endorectal pullthrough was performed in 62 (72.5%) of cases with a 16% rate of retained aganglionosis. Postoperative continence was excellent in 46 (57%) and good in 26 (32%) with an incontinence rate of 11%. None of the outcome predictor showed significant influence. Optimal postoperative bowel function was obtained in the majority of patients with two-stage procedures, and the overall outcome of bowel function in children was not influenced by age, gender, level of aganglionosis, and type of procedure. Longer follow-up periods are required for definitive information.
{"title":"Postoperative bowel function in children operated for Hirschsprung's disease in a low-income setting: Institution-based cross-sectional study.","authors":"Belachew Dejene Wondemagegnehu, Addisu Andargie","doi":"10.1177/13674935241289159","DOIUrl":"10.1177/13674935241289159","url":null,"abstract":"<p><p>Hirschsprung's disease is a common cause of lower intestinal obstruction in newborns. It has variable postoperative outcomes affecting quality of life. The study was aimed at assessing postoperative bowel function in children with Hirschsprung's disease. It was conducted on 120 children operated for Hirschsprung's disease. A structured questionnaire for bowel function score was used and analyzed using relevant statistical tests. Of the 120 children in the study, 97 (80.8%) were male with 49 (40.8%) diagnosed during neonatal age and others by 2 years of age. Ninety-three (77.5%) of them had the classic type. Diversion colostomy was done in 104 (86.6%), and two-staged endorectal pullthrough was performed in 62 (72.5%) of cases with a 16% rate of retained aganglionosis. Postoperative continence was excellent in 46 (57%) and good in 26 (32%) with an incontinence rate of 11%. None of the outcome predictor showed significant influence. Optimal postoperative bowel function was obtained in the majority of patients with two-stage procedures, and the overall outcome of bowel function in children was not influenced by age, gender, level of aganglionosis, and type of procedure. Longer follow-up periods are required for definitive information.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"951-961"},"PeriodicalIF":1.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367342","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}
Pub Date : 2025-12-01Epub Date: 2024-10-03DOI: 10.1177/13674935241261744
Megan S McHenry, Brianna Alex, Anna Roose, Catherine Raciti, Eren Oyungu, Ananda R Ombitsa, Cleophas Cherop, Beatrice Kaniaru, Carolyne Cherop, Chandy C John, Rachel C Vreeman
The Care for Child Development (CCD) program may improve child development outcomes in resource-limited settings, but has not yet been adapted to group-based settings to facilitate sustainable dissemination. In this study, we determined the acceptability and feasibility of a group-based CCD program, with evaluation of program outcomes for child development, home environment, and symptoms of maternal depression as secondary outcomes. We evaluated this adapted program using a 2 × 2 crossover-designed pilot study administered over 10 bi-weekly sessions. Acceptability and feasibility were assessed through focus group discussions using qualitative methods. Child development, home observations, and symptoms of maternal depression were evaluated at baseline, 6 months, and 12 months and assessed quantitatively. Twenty-six mother-child dyads participated. Overall, they perceived CCD as acceptable and feasible, and especially beneficial within its group-based format. Although there were no measured improvements in child development, improvements in stimulating home environments (mean difference 2.5, 95% C.I. [0.37, 4.72]) were found. Further scale-up of this intervention is needed to determine effectiveness.
{"title":"Acceptability and feasibility of a group-based intervention to improve outcomes for children at risk for developmental delays in Kenya: A piloted randomized trial.","authors":"Megan S McHenry, Brianna Alex, Anna Roose, Catherine Raciti, Eren Oyungu, Ananda R Ombitsa, Cleophas Cherop, Beatrice Kaniaru, Carolyne Cherop, Chandy C John, Rachel C Vreeman","doi":"10.1177/13674935241261744","DOIUrl":"10.1177/13674935241261744","url":null,"abstract":"<p><p>The Care for Child Development (CCD) program may improve child development outcomes in resource-limited settings, but has not yet been adapted to group-based settings to facilitate sustainable dissemination. In this study, we determined the acceptability and feasibility of a group-based CCD program, with evaluation of program outcomes for child development, home environment, and symptoms of maternal depression as secondary outcomes. We evaluated this adapted program using a 2 × 2 crossover-designed pilot study administered over 10 bi-weekly sessions. Acceptability and feasibility were assessed through focus group discussions using qualitative methods. Child development, home observations, and symptoms of maternal depression were evaluated at baseline, 6 months, and 12 months and assessed quantitatively. Twenty-six mother-child dyads participated. Overall, they perceived CCD as acceptable and feasible, and especially beneficial within its group-based format. Although there were no measured improvements in child development, improvements in stimulating home environments (mean difference 2.5, 95% C.I. [0.37, 4.72]) were found. Further scale-up of this intervention is needed to determine effectiveness.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"975-990"},"PeriodicalIF":1.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367341","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}
Play has positive effects on children's well-being and development. Play heroes, in Danish, called "Legeheltene", have worked, for the last 7 years, to improve play and movement for hospitalized children in Danish hospitals. However, the significance of this novel Danish intervention is insufficiently researched. This phenomenological-hermeneutic study explored how children experience interacting with a play hero when hospitalized at a Danish paediatric unit. Combined observations and interviews were performed with children from two paediatric departments. Data were analyzed with inspiration from the French philosopher Paul Ricoeur. Three themes were identified: "A sense of familiarity," "From loneliness to connectedness," and "Becoming more powerful." Children experience that interaction with play heroes is existentially meaningful. Through playful activities, children experience that they are connected to their daily lives outside the hospital and their true selves. Bridges to children's everyday lives are built, leading to an improved sense of freedom, security, and the ability to manage difficult aspects of their hospital stay. Engagement with play heroes provides children with an experience of well-being and can be a positive direction in care provided to hospitalized children.
{"title":"Hospitalized children experience: Play heroes to build bridges between hospital days and everyday life.","authors":"Sunniva Olsen, Malene Beck, Malene Boas, Anita Pedersen, Jannie Nissen, Charlotte Simonÿ","doi":"10.1177/13674935241253303","DOIUrl":"10.1177/13674935241253303","url":null,"abstract":"<p><p>Play has positive effects on children's well-being and development. Play heroes, in Danish, called \"Legeheltene\", have worked, for the last 7 years, to improve play and movement for hospitalized children in Danish hospitals. However, the significance of this novel Danish intervention is insufficiently researched. This phenomenological-hermeneutic study explored how children experience interacting with a play hero when hospitalized at a Danish paediatric unit. Combined observations and interviews were performed with children from two paediatric departments. Data were analyzed with inspiration from the French philosopher Paul Ricoeur. Three themes were identified: \"A sense of familiarity,\" \"From loneliness to connectedness,\" and \"Becoming more powerful.\" Children experience that interaction with play heroes is existentially meaningful. Through playful activities, children experience that they are connected to their daily lives outside the hospital and their true selves. Bridges to children's everyday lives are built, leading to an improved sense of freedom, security, and the ability to manage difficult aspects of their hospital stay. Engagement with play heroes provides children with an experience of well-being and can be a positive direction in care provided to hospitalized children.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"796-809"},"PeriodicalIF":1.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140900073","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}
Pub Date : 2025-11-25DOI: 10.1177/13674935251402954
Laura Ares-Brage, Caritat Bagur-Calafat, Marta Amor-Barbosa, Cristina Lidón-Moyano, Rita-Pilar Romero-Galisteo
Children with cerebral palsy (CP) and their families face a wide range of healthcare services. Evidence suggests that this care should be family-centered (FCC). The purpose of this systematic review and meta-analysis was to gather the existing evidence about the experience of children with CP, families, and professionals with FCC through the Measure of Processes of Care (MPOC) and analyze the different perspectives in the population groups, determining which aspects of this model are more entrenched and which need special attention to improve. A search of the peer-reviewed literature in five databases was conducted. The included studies were assessed using the relevant Joanna Briggs Institute tool and a meta-analysis was performed. Fifteen articles were included, in which any version of the MPOC was used for both families and professionals. However, no article reporting the experience of children was found. The domains related to "Information provided" were the lowest rated by families and professionals, so special attention should be paid to this. The highest average score was for "Respectful care," both families and professionals agree that the treatment provided is characterized by respect and dignity. Recommendations are provided to start collecting this kind of information for children with CP.
{"title":"Family-centered care for children with cerebral palsy: A meta-analysis of perspectives from children, caregivers, and professionals through the measure of processes of care.","authors":"Laura Ares-Brage, Caritat Bagur-Calafat, Marta Amor-Barbosa, Cristina Lidón-Moyano, Rita-Pilar Romero-Galisteo","doi":"10.1177/13674935251402954","DOIUrl":"https://doi.org/10.1177/13674935251402954","url":null,"abstract":"<p><p>Children with cerebral palsy (CP) and their families face a wide range of healthcare services. Evidence suggests that this care should be family-centered (FCC). The purpose of this systematic review and meta-analysis was to gather the existing evidence about the experience of children with CP, families, and professionals with FCC through the Measure of Processes of Care (MPOC) and analyze the different perspectives in the population groups, determining which aspects of this model are more entrenched and which need special attention to improve. A search of the peer-reviewed literature in five databases was conducted. The included studies were assessed using the relevant Joanna Briggs Institute tool and a meta-analysis was performed. Fifteen articles were included, in which any version of the MPOC was used for both families and professionals. However, no article reporting the experience of children was found. The domains related to \"Information provided\" were the lowest rated by families and professionals, so special attention should be paid to this. The highest average score was for \"Respectful care,\" both families and professionals agree that the treatment provided is characterized by respect and dignity. Recommendations are provided to start collecting this kind of information for children with CP.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251402954"},"PeriodicalIF":1.6,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145607427","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}
Pub Date : 2025-11-21DOI: 10.1177/13674935251400902
Maile T Jones, Karen Romer, Emily D Irwin, Kayla Black, Leslie Rhodes, Jessika C Boles
Advancements in life-sustaining technologies have extended the lives of children with medical complexities, increasing demand for substantial healthcare services. Caring for these children requires significant caregiver time and energy, affecting their well-being. These experiences highlight a critical need for psychosocial interventions-like legacy-building-to foster adaptive coping, facilitate meaning making, and optimize outcomes for this population. This study explores how parents/caregivers of medically complex children perceive and experience the concept of legacy. Thirty-one parents/caregivers participated in semi-structured interviews, which were analyzed using inductive coding. Three themes emerged: (1) legacy is both what you leave behind and what you live right now, (2) legacy inspires change, and (3) legacy is shaped by healthcare experiences. Findings highlight the need for inclusive, adaptable legacy-building practices that address families' unique needs and enhance psychosocial support for this population.
{"title":"\"It Doesn't Have to Be Big Things\": The legacy perceptions of parents/caregivers of medically complex children.","authors":"Maile T Jones, Karen Romer, Emily D Irwin, Kayla Black, Leslie Rhodes, Jessika C Boles","doi":"10.1177/13674935251400902","DOIUrl":"https://doi.org/10.1177/13674935251400902","url":null,"abstract":"<p><p>Advancements in life-sustaining technologies have extended the lives of children with medical complexities, increasing demand for substantial healthcare services. Caring for these children requires significant caregiver time and energy, affecting their well-being. These experiences highlight a critical need for psychosocial interventions-like legacy-building-to foster adaptive coping, facilitate meaning making, and optimize outcomes for this population. This study explores how parents/caregivers of medically complex children perceive and experience the concept of legacy. Thirty-one parents/caregivers participated in semi-structured interviews, which were analyzed using inductive coding. Three themes emerged: (1) legacy is both what you leave behind and what you live right now, (2) legacy inspires change, and (3) legacy is shaped by healthcare experiences. Findings highlight the need for inclusive, adaptable legacy-building practices that address families' unique needs and enhance psychosocial support for this population.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251400902"},"PeriodicalIF":1.6,"publicationDate":"2025-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145574928","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}
Pub Date : 2025-11-14DOI: 10.1177/13674935251393558
Clarisa Wijaya, Emily G Lattie, Caitlin S Sayegh
This study examined the lived experiences of adolescents and young adults (AYA) with chronic illnesses at a safety net hospital, with nearly 90% identifying as ethnically and racially minoritized. Interviews were conducted with patients (N = 19) aged 16-20 years old, who are living with at least one chronic illness. Interviews were coded and analyzed using thematic analysis. Four themes captured the impact of illness and resilience processes: (1) My Condition Affects My Body, (2) My Condition Restricts My Life, (3) My Condition Impacts My Emotional Well-Being, and (4) I Can Still Be Healthy. Themes were verified through a Community Advisory Board of AYA with chronic illness. Participants described how symptoms, side effects, and restrictions negatively impact their physical and emotional well-being. Despite challenges, AYA demonstrated resilience through individualized, trial-and-error coping strategies that buffered illness-related distress. These findings underscore the importance of culturally responsive, developmentally appropriate interventions to support the well-being of minoritized AYA with chronic illness.
{"title":"Understanding youth experiences with chronic illness at a safety net hospital: Challenges, coping, and resilience.","authors":"Clarisa Wijaya, Emily G Lattie, Caitlin S Sayegh","doi":"10.1177/13674935251393558","DOIUrl":"https://doi.org/10.1177/13674935251393558","url":null,"abstract":"<p><p>This study examined the lived experiences of adolescents and young adults (AYA) with chronic illnesses at a safety net hospital, with nearly 90% identifying as ethnically and racially minoritized. Interviews were conducted with patients (N = 19) aged 16-20 years old, who are living with at least one chronic illness. Interviews were coded and analyzed using thematic analysis. Four themes captured the impact of illness and resilience processes: (1) <i>My Condition Affects My Body</i>, (2) <i>My Condition Restricts My Life</i>, (3) <i>My Condition Impacts My Emotional Well-Being</i>, and (4) <i>I Can Still Be Healthy</i>. Themes were verified through a Community Advisory Board of AYA with chronic illness. Participants described how symptoms, side effects, and restrictions negatively impact their physical and emotional well-being. Despite challenges, AYA demonstrated resilience through individualized, trial-and-error coping strategies that buffered illness-related distress. These findings underscore the importance of culturally responsive, developmentally appropriate interventions to support the well-being of minoritized AYA with chronic illness.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":" ","pages":"13674935251393558"},"PeriodicalIF":1.6,"publicationDate":"2025-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145524817","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}