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Search Results (923)

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Keywords = parent-caregiver

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23 pages, 327 KiB  
Article
Caregiver and Birth Parent Influences on Depression and Anxiety in African American Children in Kinship Care
by Tyreasa Washington, Sheryl L. Coley, Joan M. Blakey, Quenette L. Walton, Jeff Labban, Helen B. Tadese, Dominique N. Martinez and Sonya J. Leathers
Healthcare 2025, 13(16), 2025; https://doi.org/10.3390/healthcare13162025 (registering DOI) - 17 Aug 2025
Abstract
Background/Objectives: Depression and anxiety in children pose a significant public health concern, with long-term implications for well-being. Over 10% of children and adolescents are affected by emotional disorders such as depression and anxiety. African American youth face disproportionate exposure to mental health [...] Read more.
Background/Objectives: Depression and anxiety in children pose a significant public health concern, with long-term implications for well-being. Over 10% of children and adolescents are affected by emotional disorders such as depression and anxiety. African American youth face disproportionate exposure to mental health risk factors, including poverty, adverse childhood events, community violence, and racial discrimination, which elevate their vulnerability to these disorders. A particularly at-risk subgroup includes African American children in kinship care arrangements (e.g., grandparents raising grandchildren), who may face additional factors such as family disruption and separation from birth parents. Methods: This mixed-methods sequential study examined how caregiver stress and birth mother–child relationship quality relate to depression and anxiety symptoms in African American children in kinship care. Phase I included survey data from 58 caregivers of children aged 5 to 12; Phase II involved interviews with 16 of these caregivers. Results: Results indicated that lower caregiver stress was associated with reduced child depression and anxiety symptoms. Furthermore, findings suggest that a high quality of the birth mother–child relationship serves as a promotive factor, particularly for depressive symptoms. Qualitative findings highlighted two themes: (1) the weight of kinship care, marked by factors such as ongoing grief and financial strain; and (2) birth parent relationships, defined by a mix of connection, conflict, and loss that affects children’s mental health. Conclusions: These findings underscore the need for greater understanding of the strengths and resources within kinship families that support positive mental health outcomes and highlight the importance of targeted interventions to reduce caregiver stress and foster supportive parent–child relationships. Full article
18 pages, 303 KiB  
Article
Feeling the Same Strain? A Cross-Sectional Comparison Study of Fathers’ Versus Mothers’ Parenting Stress During the COVID-19 Pandemic
by Anna Friedmann, Anne Sophie Wenzel, Katharina Richter, Ina Nehring and Volker Mall
Children 2025, 12(8), 1055; https://doi.org/10.3390/children12081055 - 11 Aug 2025
Viewed by 179
Abstract
Background/Objectives: Parenting stress is associated with parent and child mental health problems and has increased since the beginning of COVID-19. Research on paternal parenting stress is sparse—even if family models are changing increasingly with fathers being more strongly involved in caregiving for [...] Read more.
Background/Objectives: Parenting stress is associated with parent and child mental health problems and has increased since the beginning of COVID-19. Research on paternal parenting stress is sparse—even if family models are changing increasingly with fathers being more strongly involved in caregiving for their children. This study investigated (1) overall parenting stress levels and specific parenting stress subscales in fathers with young children in comparison to mothers and (2) potential influencing factors on fathers’ and mothers’ parenting stress during the pandemic. Methods: In a cross-sectional online study, N = 368 parents (50.00% fathers) of children (0–3 years) filled out the German version of the Parenting Stress Index (EBI) and answered questions on sociodemographic and pandemic-related factors. Results: Fathers were 36.17 years (SD = 5.21) and mothers 33.65 years (SD = 4.39) old and 67.50% had a high educational background. Children (45.38% female) were 16.34 months (SD = 11.66) old. There was no significant group difference between fathers’ and mothers’ overall parenting stress (p = 0.39). Parenting stress scores in the attachment subscale were significantly higher in fathers (p < 0.001, r = 0.19). An increase in family conflicts during the pandemic had the highest impact on both paternal (ß = 0.45) and maternal (ß = 0.35) parenting stress. Conclusions: Parenting stress was equally high for fathers and mothers during the COVID-19 crisis, indicating a levelling of pre-pandemic differences due to pandemic-related factors. Future support measures should focus on reducing family conflicts and on strengthening fathers’ attachment to their child. Full article
(This article belongs to the Special Issue Stress and Stress Resilience in Children and Adolescents: 2nd Edition)
22 pages, 685 KiB  
Systematic Review
Understanding Parental Representations Across the Perinatal Period: A Systematic Review of Empirical Findings and Clinical Implications
by Renata Tambelli, Ludovica Del Proposto and Francesca Favieri
Children 2025, 12(8), 1051; https://doi.org/10.3390/children12081051 - 11 Aug 2025
Viewed by 208
Abstract
Background/Objectives: Parental mental representations play a crucial role in shaping early parent–child relationships, particularly during the perinatal period. These internal models influence caregiving behaviors, emotional attunement, and the intergenerational transmission of attachment. The present systematic review aims to address this gap by [...] Read more.
Background/Objectives: Parental mental representations play a crucial role in shaping early parent–child relationships, particularly during the perinatal period. These internal models influence caregiving behaviors, emotional attunement, and the intergenerational transmission of attachment. The present systematic review aims to address this gap by examining the nature of both maternal and paternal mental representations in the perinatal period (involving pregnancy and the first postnatal time), with a particular emphasis on reflective functioning, and by outlining the variables that are influenced by these representations. Methods: Following PRISMA guidelines, eligible peer-reviewed studies were identified through a comprehensive literature search of major scientific databases (Scopus, Web of Science, PsychArticle/PsycInfo). Qualitative assessment and detailed description were carried out. Results: In total, 28 studies were selected and analyzed. Findings reveal that while representations tend to organize around shared psychological domains—such as expectations regarding the child, parental identity, and the anticipated relationship—there is significant heterogeneity in how these are conceptualized and measured across studies. Risk factors such as maternal depression, low social support, and adverse life experiences were consistently linked to disengaged or distorted representations, whereas balanced representations were associated with greater RF, emotional availability, and protective relational contexts. Conclusions: Overall, the review highlights the clinical relevance of assessing parental mental representations and RF during the perinatal period, suggesting that early, targeted interventions may enhance parental sensitivity and promote secure parent–infant bonds. Future research should adopt integrated theoretical models, include diverse family configurations, and evaluate the efficacy of preventive programs that support reflective and adaptive representations. Full article
(This article belongs to the Section Pediatric Mental Health)
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25 pages, 291 KiB  
Article
Work–Care Reconciliation Strategies for a Variety of Informal Carers: What Works and What Does Not?
by Tjaša Potočnik and Valentina Hlebec
Healthcare 2025, 13(16), 1961; https://doi.org/10.3390/healthcare13161961 - 11 Aug 2025
Viewed by 249
Abstract
Objectives: The aim of this study is to describe and examine reconciliation strategies for reconciling work and informal care that are aimed at different types of working carers (carers of the following: family members with dementia; partners; children under 18; adult children; [...] Read more.
Objectives: The aim of this study is to describe and examine reconciliation strategies for reconciling work and informal care that are aimed at different types of working carers (carers of the following: family members with dementia; partners; children under 18; adult children; parents; other family members). Methods: We conducted a cross-sectional survey to examine structural strategies for a work–care balance throughout the caregiving period, followed by the frequency of the use of strategies in the last 12 months to better understand what is an effective work–care balance strategy for different working carer types. Hierarchical cluster analysis was conducted in February 2025 on 299 working carers drawn from a representative sample of adult Slovenian residents in an online probability panel. Results: The results show five clusters of carers that clearly indicate their use of reconciliation strategies depends on the national context, the work organisation and employees, the family structure, the value orientation of informal carers, and the type of care recipient. Conclusions: A variety of policy measures are needed to enable informal carers to remain active in the labour market while they care for dependent family members and relatives. Full article
19 pages, 567 KiB  
Article
What’s in Your Heart? Development of a Culturally Grounded and Trauma-Informed Parenting Support Program with a Pacific Northwest Tribe
by Sara F. Waters, Meenakshi Richardson, Alvina Marris, Fawn Harris and Myra Parker
Int. J. Environ. Res. Public Health 2025, 22(8), 1253; https://doi.org/10.3390/ijerph22081253 - 10 Aug 2025
Viewed by 377
Abstract
The aims of the current study included gathering cultural knowledge and stories regarding parenting young children within a Tribal community and learning community members’ perspectives on key components of a promising parenting prevention program. Qualitative data were drawn from a focus group including [...] Read more.
The aims of the current study included gathering cultural knowledge and stories regarding parenting young children within a Tribal community and learning community members’ perspectives on key components of a promising parenting prevention program. Qualitative data were drawn from a focus group including seven participants and semi-structured phone interviews with 21 additional participants, all of whom were parenting children in the community. Hybrid coding and applied thematic analysis revealed five themes: (1) Desire to Learn and Gain Parenting Skills; (2) Relationships and the Caregiver Role; (3) Culture and Caregiving, which included subthemes of Diversity Among Tribal Bands, Intergenerational Knowledge Sharing, and Reconnection and Revitalization; (4) Historical Trauma and Behavioral Health; and (5) Curriculum Terminology Considerations. The information gathered collectively informed the development of the culturally grounded stim’ aspuʔús (What’s in Your Heart?) parenting program. This addresses the great need for culturally grounded interventions to support trauma healing within Indigenous families. The development process and implications for program development by and for Indigenous communities is discussed. Full article
12 pages, 697 KiB  
Article
Together TO-CARE: A Novel Tool for Measuring Caregiver Involvement and Parental Relational Engagement
by Anna Insalaco, Natascia Bertoncelli, Luca Bedetti, Anna Cinzia Cosimo, Alessandra Boncompagni, Federica Cipolli, Alberto Berardi and Licia Lugli
Children 2025, 12(8), 1007; https://doi.org/10.3390/children12081007 - 31 Jul 2025
Viewed by 233
Abstract
Background: Preterm infants and their families face a challenging experience during their stay in the neonatal intensive care unit (NICU). Family-centered care emphasizes the importance of welcoming parents, involving them in their baby’s daily care, and supporting the development of parenting skills. NICU [...] Read more.
Background: Preterm infants and their families face a challenging experience during their stay in the neonatal intensive care unit (NICU). Family-centered care emphasizes the importance of welcoming parents, involving them in their baby’s daily care, and supporting the development of parenting skills. NICU staff should support parents in understanding their baby’s needs and in strengthening the parent–infant bond. Although many tools outline what parents should learn, there is a limited structured framework to monitor their involvement in the infant’s care. Tracking parental participation in daily caregiving activities could support professionals in effectively guiding families, ensuring a smoother transition to discharge. Aims: The aim of this study was to evaluate the adherence to and effectiveness of a structured tool for parental involvement in the NICU. This tool serves several key purposes: to track the progression and timing of parents’ autonomy in caring for their baby, to support parents in building caregiving competencies before discharge, and to standardize the approach of NICU professionals in promoting both infant care and family engagement. Methods: A structured template form for documenting parental involvement (“together TO-CARE template”, TTCT) was integrated into the computerized chart adopted in the NICU of Modena. Nurses were asked to complete the TTCT at each shift. The template included the following assessment items: parental presence; type of contact with the baby (touch; voice; skin-to-skin); parental involvement in care activities (diaper changing; gavage feeding; bottle feeding; breast feeding); and level of autonomy in care (observer; supported by nurse; autonomous). We evaluated TTCT uploaded data for very low birth weight (VLBW) preterm infants admitted in the Modena NICU between 1 January 2023 and 31 December 2024. Staff compliance in filling out the TTCT was assessed. The timing at which parents achieved autonomy in different care tasks was also measured. Results: The TTCT was completed with an average of one entry per day, during the NICU stay. Parents reached full autonomy in diaper changing at a mean of 21.1 ± 15.3 days and in bottle feeding at a mean of 48.0 ± 22.4 days after admission. The mean length of hospitalization was 53 ± 38 days. Conclusions: The adoption of the TTCT in the NICU is feasible and should become a central component of care for preterm infants. It promotes family-centered care by addressing the needs of both the baby and the family. Encouraging early and progressive parental involvement enhances parenting skills, builds confidence, and may help reduce post-discharge complications and readmissions. Furthermore, the use of a standardized template aims to foster consistency among NICU staff, reduce disparities in care delivery, and strengthen the support provided to families of preterm infants. Full article
(This article belongs to the Section Pediatric Neonatology)
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14 pages, 2017 KiB  
Article
Prevalence of Depression and Anxiety Symptoms Among Parents of Hospitalized Children in 14 Countries
by Linda S. Franck, Renée Mehra, Christine R. Hodgson, Caryl Gay, Jennifer Rienks, Amy Jo Lisanti, Michelle Pavlik, Sufiya Manju, Nitya Turaga, Michael Clay and Thomas J. Hoffmann
Children 2025, 12(8), 1001; https://doi.org/10.3390/children12081001 - 30 Jul 2025
Viewed by 473
Abstract
Background/Objectives: Despite the importance of parent mental health for child health, there are no global prevalence data on parental mental health symptoms when children are hospitalized. We aimed to describe depression and anxiety symptom prevalence and associated factors among parents of hospitalized [...] Read more.
Background/Objectives: Despite the importance of parent mental health for child health, there are no global prevalence data on parental mental health symptoms when children are hospitalized. We aimed to describe depression and anxiety symptom prevalence and associated factors among parents of hospitalized children. Methods: We conducted this 14-country prospective cohort survey with parents/primary caregivers staying at a nearby Ronald McDonald House® during their child’s hospital treatment. We used the Hospital Anxiety and Depression Scale to measure depression and anxiety symptoms and validated scales and theory-based questions to measure parent, family, and child covariates. We calculated the prevalence of clinically significant or concerning symptoms of depression and anxiety, and used multivariable regression analyses to examine associations between covariates and outcomes. Results: Among 3350 participants, 1789 (49.7%) reported depression symptoms and 2286 (69.0%) reported anxiety symptoms. Worry about housing and poorer ratings of their child’s health were associated with increased risk of depression symptoms. Poorer rating of the child’s health, living with a partner, and discrimination in daily life were associated with increased risk of anxiety symptoms. Higher levels of self-care, hospital family-centered care, and social support were associated with reduced risk of depression symptoms. Higher levels of self-care and social support were associated with reduced risk of anxiety symptoms. Conclusions: Clinically significant or concerning depression and anxiety symptoms are common among parents of hospitalized children globally. Hospitals should consider offering routine mental health symptom screening and preventative mental health and support services to all parents. Full article
(This article belongs to the Section Pediatric Mental Health)
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19 pages, 750 KiB  
Article
Parents as First Responders: Experiences of Emergency Care in Children with Nemaline Myopathy: A Qualitative Study
by Raúl Merchán Arjona, Juan Francisco Velarde-García, Enrique Pacheco del Cerro and Alfonso Meneses Monroy
Nurs. Rep. 2025, 15(8), 271; https://doi.org/10.3390/nursrep15080271 - 29 Jul 2025
Viewed by 363
Abstract
Background: Nemaline myopathy is a rare congenital neuromuscular disease associated with progressive weakness and frequent respiratory complications. In emergency situations, families often serve as the first and only responders. The aim of this study is to explore how parents in Spain care [...] Read more.
Background: Nemaline myopathy is a rare congenital neuromuscular disease associated with progressive weakness and frequent respiratory complications. In emergency situations, families often serve as the first and only responders. The aim of this study is to explore how parents in Spain care for children with nemaline myopathy during emergency situations, focusing on the clinical responses performed at home and the organizational challenges encountered when interacting with healthcare systems. Methods: A qualitative phenomenological study was conducted with 17 parents from 10 families belonging to the Asociación Yo Nemalínica. Semi-structured interviews were performed via video calls, transcribed verbatim, and analyzed using Giorgi’s descriptive method and ATLAS.ti software (version 24). Methodological rigor was ensured through triangulation, reflexivity, and member validation. Results: Four themes were identified. First, families were described as acting under extreme pressure and in isolation during acute home emergencies, often providing cardiopulmonary resuscitation and respiratory support without professional backup. Second, families managed ambiguous signs of deterioration using clinical judgment and home monitoring tools, often preventing fatal outcomes. Third, parents frequently assumed guiding roles in emergency departments due to a lack of clinician familiarity with the disease, leading to delays or errors. Finally, the transition to the Pediatric Intensive Care Unit was marked by emotional distress and rapid decision-making, with families often participating in critical choices about invasive procedures. These findings underscore the complex, multidisciplinary nature of caregiving. Conclusions: Parents play an active clinical role during emergencies and episodes of deterioration. Their lived experience should be formally integrated into emergency protocols and the continuity of care strategies to improve safety and outcomes. Full article
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10 pages, 345 KiB  
Article
Natural History of Hyperphagia in Patients with Pseudohypoparathyroidism
by Jaclyn Tamaroff and Ashley H. Shoemaker
J. Clin. Med. 2025, 14(15), 5345; https://doi.org/10.3390/jcm14155345 - 29 Jul 2025
Viewed by 277
Abstract
Background/Objectives: Pseudohypoparathyroidism (PHP) is a group of genetic disorders characterized by end-organ resistance to multiple hormones, short stature, brachydactyly, subcutaneous ossifications, obesity, and developmental delays. The tissue specific imprinting of GNAS in the hypothalamus may lead to different eating behavior phenotypes in [...] Read more.
Background/Objectives: Pseudohypoparathyroidism (PHP) is a group of genetic disorders characterized by end-organ resistance to multiple hormones, short stature, brachydactyly, subcutaneous ossifications, obesity, and developmental delays. The tissue specific imprinting of GNAS in the hypothalamus may lead to different eating behavior phenotypes in maternally inherited (PHP1A, PHP1B) vs. paternally inherited (PPHP) variants. In this exploratory study, we aimed to evaluate differences in eating behaviors in a cohort of patients with PHP1A, PPHP and PHP1B. Methods: Assessments included caregiver-reported measures (hyperphagia questionnaire, children’s eating behavior questionnaire, child feeding questionnaire) and self-reported measures (three factor eating behavior questionnaire). Results: A total of 58 patients with PHP1A, 13 patients with PPHP and 10 patients with PHP1B contributed data, along with 124 obese pediatric controls. An increased risk of obesity was found in PHP1A vs. PPHP (adult body mass index (BMI) 39.8 ± 8.7 vs. 30.2 ± 7.4 kg/m2, p = 0.03). Parents reported significantly earlier onset of interest in food in children with PHP1A (2.0 ± 2.3 years) and PHP1B (1.1 ± 1.3 years) compared with controls (5.2 ± 3.2 years, p < 0.001). Measures of hyperphagia, satiety and other feeding behaviors were all similar to controls. The highest hyperphagia questionnaire scores were seen prior to adolescence. In a multi-year, longitudinal assessment of 11 pediatric patients with PHP1A, hyperphagia scores were stable and 25% showed an improvement in symptoms. Conclusion: Patients with PHP1A/1B may have hyperphagia symptoms from a young age but they do not worsen over time. Patients may overeat when allowed access to food, but do not usually have disruptive food seeking behaviors. Early diagnosis can give clinicians the opportunity to provide anticipatory diagnosis on the increased risk of obesity in PHP1A/1B and need for scheduled meals and controlled portions. Further studies with larger cohorts are needed to confirm these findings. Full article
(This article belongs to the Special Issue Research Progress in Pediatric Endocrinology)
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12 pages, 258 KiB  
Article
Parental Interference/Family Abduction and Its Relationship with Depressive Symptoms in Children and Adolescents
by Diego Portilla-Saavedra, Estefany Retamal Ninahuanca and Katherin Castillo-Morales
Adolescents 2025, 5(3), 38; https://doi.org/10.3390/adolescents5030038 - 23 Jul 2025
Viewed by 361
Abstract
The literature has been scarce in addressing parental interference/family abduction and its relationship with depressive symptoms. Due to this, the objective of this study was to examine the association between family abduction/parental interference and depressive symptoms in a national sample of 11,568 children [...] Read more.
The literature has been scarce in addressing parental interference/family abduction and its relationship with depressive symptoms. Due to this, the objective of this study was to examine the association between family abduction/parental interference and depressive symptoms in a national sample of 11,568 children and adolescents aged 12 to 18 from Chile. Robust linear regression models were conducted to assess how these experiences are related to depressive symptoms while controlling for age. Our results show that children and adolescents who reported these experiences in their lives presented higher levels of depressive symptoms. Additionally, although all forms of caregiver victimization were associated with depressive symptoms, parental interference/family abduction also showed a significant association, even when controlling for sociodemographic variables. These findings highlight the need for attention to the phenomenon of family abduction/parental interference, especially concerning its potential associations with mental health outcomes such as depression. Theoretically, the study contributes to the limited body of research on this form of caregiver victimization, and practically, it provides evidence that may inform future prevention strategies and mental health policies targeting children and adolescents exposed to high-conflict family dynamics in the Chilean context. Full article
(This article belongs to the Section Adolescent Health and Mental Health)
12 pages, 307 KiB  
Review
Motherhood and Childhood in the Context of Mental Illness: A Narrative Review
by Rosa Ayesa-Arriola, Claudia Parás and Alexandre Díaz-Pons
Women 2025, 5(3), 26; https://doi.org/10.3390/women5030026 - 23 Jul 2025
Viewed by 387
Abstract
Maternal mental illness significantly impacts caregiving, influencing both mothers and their children. This narrative review examines the challenges faced by mothers with conditions such as depression, anxiety, bipolar disorder, and schizophrenia, which often disrupt caregiving routines, emotional stability, and social integration. These difficulties [...] Read more.
Maternal mental illness significantly impacts caregiving, influencing both mothers and their children. This narrative review examines the challenges faced by mothers with conditions such as depression, anxiety, bipolar disorder, and schizophrenia, which often disrupt caregiving routines, emotional stability, and social integration. These difficulties can hinder secure attachments and contribute to adverse developmental outcomes in children, including heightened risks of anxiety, depression, behavioral issues, and cognitive impairments. Children of mothers with mental illnesses are 1.8 times more likely to develop emotional or behavioral problems and face a 2.7 times higher risk of suicidal ideation during adolescence. Intergenerational transmission of mental illness is also prevalent, with affected children showing a 2.5 times greater likelihood of developing mental illnesses in adulthood. Effective interventions include cognitive behavioral therapy (CBT), family-based approaches, and community programs integrating parenting education and mental health resources. These strategies have demonstrated improvements in maternal well-being and child resilience. The review highlights the need for comprehensive policies addressing maternal mental health, early intervention for children, and culturally sensitive support systems to break cycles of intergenerational mental illness. Future research should prioritize evaluating long-term intervention effectiveness and exploring innovative tools like digital mental illnesses solutions to support affected families. Full article
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11 pages, 1617 KiB  
Article
Parental Knowledge and Preventive Strategies in Pediatric IgE-Mediated Food Allergy—Results from a Cross-Sectional Survey
by Francesca Galletta, Angela Klain, Sara Manti, Francesca Mori, Carolina Grella, Leonardo Tomei, Antonio Andrea Senatore, Amelia Licari, Michele Miraglia del Giudice and Cristiana Indolfi
Nutrients 2025, 17(15), 2387; https://doi.org/10.3390/nu17152387 - 22 Jul 2025
Viewed by 351
Abstract
Background/Objectives: Food allergy (FA) is a growing concern in pediatric care, requiring effective avoidance strategies and timely emergency responses. The role of caregivers is central to the daily management of FA. This study aimed to assess parental knowledge, preparedness, and behaviors regarding [...] Read more.
Background/Objectives: Food allergy (FA) is a growing concern in pediatric care, requiring effective avoidance strategies and timely emergency responses. The role of caregivers is central to the daily management of FA. This study aimed to assess parental knowledge, preparedness, and behaviors regarding pediatric FA management, focusing on both prevention and emergency readiness. Methods: A cross-sectional survey was conducted from December 2024 to April 2025 through the SurveyMonkey® platform, promoted by the Italian Society of Pediatric Allergology and Immunology (SIAIP). The anonymous, structured questionnaire was distributed online and in two Italian university hospitals. A total of 129 fully completed responses from caregivers of children with FA were analyzed. The survey explored self-perceived knowledge, symptom recognition, preventive actions, emergency preparedness, and communication practices. Results: Only 9.3% of parents considered themselves “very informed,” while 54.3% reported limited or no knowledge. Just 16.0% recognized all symptoms of an allergic reaction, and only 24.0% could distinguish mild reactions from anaphylaxis. Notably, 67.4% reported not knowing how to respond to anaphylaxis, and 83.7% did not possess an epinephrine auto-injector. Preventive measures at home were inconsistently applied, and 41.1% took no precautions when eating out. Communication with external caregivers was often informal or absent. Only 33% updated physicians regularly. Conclusions: The findings reveal significant gaps in parental preparedness and highlight critical areas for educational intervention. Enhanced caregiver training, standardized communication protocols, and improved clinical follow-up are essential to strengthen pediatric FA management and safety. Full article
(This article belongs to the Special Issue Nutrition and Quality of Life for Patients with Chronic Disease)
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17 pages, 560 KiB  
Review
Navigating a New Normal: A Mixed-Methods Study of the Pediatric Tracheostomy Parent-Caregiver Experience
by Laine DiNoto, Adrianne Frankel, Taylor Wheaton, Desirae Smith, Kimberly Buholtz, Rita Dadiz and Kathryn Palumbo
Children 2025, 12(7), 956; https://doi.org/10.3390/children12070956 - 21 Jul 2025
Viewed by 364
Abstract
Objective: To explore the experiences and self-efficacy of parent-caregivers providing care for a child with a tracheostomy tube. Study Design: Parent-caregivers completed surveys and participated in semi-structured interviews about their experiences learning to care for their child with a tracheostomy tube. Survey data [...] Read more.
Objective: To explore the experiences and self-efficacy of parent-caregivers providing care for a child with a tracheostomy tube. Study Design: Parent-caregivers completed surveys and participated in semi-structured interviews about their experiences learning to care for their child with a tracheostomy tube. Survey data were analyzed using descriptive statistics. Interviews were transcribed verbatim and analyzed thematically through coding. Results: Fifteen parent-caregivers participated in the survey, 13 of whom completed an interview. After receiving a tracheostomy, children were hospitalized a median of 6 months prior to discharge home. At the time of our study, children had been home for a median of 3.5 years. Parent-caregivers felt more prepared to perform routine daily care compared to triaging a change in medical status. Parent-caregiver self-efficacy in performing tracheostomy care skills improved with experience at home. Four themes were identified from interviews: new identity formation, enduring education, child and family biopsychosocial support, and establishing normalcy. Parent-caregivers shared that education was more than just acquiring skills; it also involved discovering diverse ways of learning and building confidence in one’s own abilities to fulfill the many types of roles they serve to successfully care for and keep their child safe while supporting their social and emotional needs as parent-caregivers. Conclusions: Parent-caregivers’ reflections on their experiences provide critical insight into their psychosocial needs and challenges in providing care to children with tracheostomies. Further investigation of lived experiences is vital to shaping a community that can support families of medically complex children. Full article
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26 pages, 1514 KiB  
Article
Adapting a Participatory Group Programme for Caregivers of Children with Complex Neurodisability from Low-, Middle-Income Countries to a High-Income Setting: Moving from “Baby Ubuntu” to “Encompass”
by Kirsten Prest, Kirsten Barnicot, Catherine Hurt, Frances Badenhorst, Aleksandra Borek, Melanie Whyte, Phillip Harniess, Alea Jannath, Rachel Lassman, Christopher Morris, Rachel Osbourne, Tracey Smythe, Cally J. Tann, Keely Thomas, Emma Wilson, Angela Harden and Michelle Heys
Int. J. Environ. Res. Public Health 2025, 22(7), 1144; https://doi.org/10.3390/ijerph22071144 - 18 Jul 2025
Viewed by 745
Abstract
The “Baby Ubuntu” programme is a well-established, low-cost, community-based intervention to support caregivers of children with complex neurodisability, like cerebral palsy, in low- and middle-income country (LMIC) contexts. This process-focused paper describes our utilisation of the ADAPT guidance to adapt “Baby Ubuntu” for [...] Read more.
The “Baby Ubuntu” programme is a well-established, low-cost, community-based intervention to support caregivers of children with complex neurodisability, like cerebral palsy, in low- and middle-income country (LMIC) contexts. This process-focused paper describes our utilisation of the ADAPT guidance to adapt “Baby Ubuntu” for use in ethnically and linguistically diverse, and economically deprived urban boroughs in the United Kingdom (UK). The process was guided by an adaptation team, including parents with lived experience, who explored the rationale for the intervention from local perspectives and its fit for this UK community. Through qualitative interviews and co-creation strategies, the perspectives of caregivers and healthcare professionals substantially contributed to the “Encompass” programme theory, drafting the content, and planning the delivery. Ten modules were co-produced with various topics, based on the “Baby Ubuntu” modules, to be co-facilitated by a parent with lived experience and a healthcare professional. The programme is participatory, allowing caregivers to share information, problem solve, and form supportive peer networks. The “Encompass” programme is an example of a “decolonised healthcare innovation”, as it aims to transfer knowledge and solutions developed in low- and middle-income countries to a high-income context like the UK. Piloting of the new programme is underway. Full article
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19 pages, 971 KiB  
Article
The Quality of the Parent–Child Relationship in the Context of Autism: The Role of Parental Resolution of the Child’s Diagnosis, Parenting Stress, and Caregiving Burden
by Annalisa Levante, Chiara Martis and Flavia Lecciso
Eur. J. Investig. Health Psychol. Educ. 2025, 15(7), 142; https://doi.org/10.3390/ejihpe15070142 - 18 Jul 2025
Viewed by 552
Abstract
Background. Parents of autistic children face challenges that can negatively affect the quality of the parent–child relationship. This study aimed to explore the potential protective role of parental resolution about positive (closeness) and negative (conflict and dependence) aspects of the parent–child relationship, with [...] Read more.
Background. Parents of autistic children face challenges that can negatively affect the quality of the parent–child relationship. This study aimed to explore the potential protective role of parental resolution about positive (closeness) and negative (conflict and dependence) aspects of the parent–child relationship, with parenting stress and caregiving burden as mediators. Methods. A cross-sectional study (ethical approval: CE n. 92949) was conducted with 51 Italian parents of autistic children. A multiple mediation model was tested. Results. Parental resolution had a significant total effect (β = 0.012; BootLLCI = 0.002; BootULCI = 0.024) and a significant direct effect on the parent–child relationship (β = 0.223; BootLLCI = 0.058; BootULCI = 0.389), indicating that resolving the child’s diagnosis could potentially influence parents’ perceptions of their relationship with their child, possibly leading to views of it being somewhat closer, experiencing fewer conflicts, and involving a lower degree of dependence. An indirect effect via parenting stress was also significant (β = −0.130; BootLLCI = −0.009; BootULCI = −0.291), while caregiving burden did not show a mediating effect. Conclusion: Despite the exploratory and cross-sectional nature of this study, the findings highlight the importance of promoting family well-being in the context of autism. The findings may inform future research on parental resources and guide clinicians in developing intervention programmes to mitigate the emotional impact of receiving a child’s autism diagnosis. Full article
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