Search Results (84)

Children with Attention Deficit Hyperactivity Disorder may experience difficulties in emotional regulation, social participation, academic functioning, and daily routines, which can place increased emotional, practical, and caregiving demands on parents. At the same time, parenting a child with Attention Deficit Hyperactivity Disorder is also associated with positive aspects, including opportunities for personal growth. The current study examined perceived growth among mothers of children with Attention Deficit Hyperactivity Disorder, and specifically the associations between types of social support (from family, friends and significant others), types of parental well-being (parents’ cognitive assessment, and positive and negative feelings toward parenting), and types of perceived growth (personal, social, and religious growth). Participants were 246 mothers of children with Attention Deficit Hyperactivity Disorder, aged 28–70 years (M = 43.31, SD = 7.52), who completed questionnaires assessing the primary study variables. Family and significant-other support were associated with personal, social, and religious growth, while friends’ support was associated only with personal and social growth. Positive feelings toward parenting were positively associated with all three dimensions of perceived growth, whereas cognitive assessment related only to personal and social growth. Negative feelings toward parenting were not significantly associated with growth. Hierarchical regression analysis indicated that social support explained a small but significant proportion of variance, but once parental well-being was added, only positive feelings remained uniquely associated with perceived growth. These findings highlight the potential importance of fostering positive parenting experiences and emotional well-being, alongside strengthening social support resources, among mothers of children with Attention Deficit Hyperactivity Disorder. Full article

Leventhal’s Common Sense Model (CSM) is a theoretical framework developed to understand the self-regulatory processes involved in adapting to and managing health threats. This is the first known study to examine all components of the CSM (i.e., illness perceptions and coping behaviors) in its application to treatment seeking behaviors in caregivers of autistic children (N = 288). Results revealed a significant indirect pathway from caregivers’ perceptions of the unpredictable nature of ASD symptoms to intentions to seek treatment for their children through problem-focused coping (β = 0.07, p = 0.02, 95% CI [0.01, 0.13]). Additionally, caregivers’ perceptions about the controllability of their children’s ASD symptoms were positively related to treatment seeking behaviors (β = 0.19, p = 0.03, 95% CI [0.06, 0.34]). These findings suggest that providers assess and then use CBT-based strategies (e.g., cognitive restructuring) to potentially modify aspects of caregivers’ cognitions and coping behaviors during ASD feedback sessions to promote prompt treatment seeking for their autistic children. Full article

Background: Multiple sclerosis (MS) is a condition that requires long-term, multidisciplinary management. The growing digital transformation in healthcare has highlighted the central role of nurses in supporting key aspects such as patient self-management, continuity of (at home) care, and patient empowerment. However, evidence on nurse-led digital interventions in MS remains fragmented. Objective: To map the available literature on nurse-led digital interventions in MS, focusing on the role of nurses, clinical outcomes, and research gaps. Methods: The review was conducted using the methodological framework of the Joanna Briggs Institute (JBI) and the PRISMA-ScR checklist. A systematic search was performed in PubMed, Scopus, Web of Science, and CINAHL. Studies were included if they described digital or telehealth interventions led or coordinated by nurses in patients with MS. Results: A total of 12 studies published between 2015 and 2025 met the inclusion criteria. Four main thematic areas were identified: (1) telenursing and empowerment-based interventions; (2) mobile and web-based patient self-management programs; (3) digital systems for monitoring and integrated care pathways; and (4) digital interventions targeting symptom management and psychosocial outcomes. Across the studies, nurse-led digital interventions were associated with improvements in self-management, treatment adherence, self-efficacy, and health-promoting behaviors. Positive effects were also reported on clinical outcomes such as fatigue, sleep quality, and balance, as well as on psychosocial variables including quality of life, coping strategies, and emotional well-being. Furthermore, the identified systems, in general, contributed to enhanced continuity of care, patient engagement, and organizational efficiency. Conclusions: Nurse-led digital interventions represent a promising approach in the management of patients with multiple sclerosis, supporting both clinical and psychosocial outcomes while enhancing continuity of care. However, the current evidence base remains limited by small sample sizes, heterogeneity of interventions, and short follow-up periods. Future research should prioritize multicenter randomized studies with larger samples and long-term follow-up to strengthen the evidence. Additionally, the integration of digital interventions into routine clinical practice, along with targeted training for nurses, is essential to ensure sustainability, accessibility, and equitable implementation. Further studies should also explore cost-effectiveness and the impact on caregivers and long-term quality of life. Full article

Background: Lifestyle factors such as diet and physical activity significantly impact on the risk of obesity in individuals with Down syndrome (DS). However, in the absence of national nutritional guidelines in individuals with DS, further work is needed to understand their dietary and physical activity patterns. In this work we retrieved caregivers’ responses on those aspects. Methods: We analyzed data from a cross-sectional online survey of caregivers of individuals with DS conducted as part of the GO-DS21 project and reported in the accompanying paper (nutrients-4216283) (n = 764). We explored physical activity patterns, dietary habits, beliefs around weight-loss interventions and caregiver confidence that family members with DS would engage in a healthier lifestyle. Associations were examined using correlation analysis, and cumulative and binary logistic regression models. Results: Caregivers reported that most individuals with DS exercised 1–3 times per week, with frequency declining with age. Males were more likely to exercise daily than females. Caregiver exercise frequency was positively correlated with that of their DS family member (ρ = 0.521, p < 0.001), suggesting clustering of shared health behaviors within households. In adjusted models, caregivers who exercised regularly had up to thirteen-fold higher odds of having a physically active family member with DS (aOR = 13.02, 95% CI: 7.40–24.06, p < 0.001). Fried food consumption and higher snack frequency were independently associated with perceived obesity status, while sugar-sweetened beverage consumption was not. Caregivers favored exercise as a weight-loss strategy, while anti-obesity drugs were endorsed by only 11% of caregivers primarily and were more likely to be endorsed when obesity was perceived (aOR = 4.21, 95% CI: 2.44–7.39, p < 0.001). Finally, caregiver confidence that their family member with DS would engage in healthier behaviors was associated with perceived obesity status and strongly associated with higher physical activity levels (aOR 14.68, 95% CI: 6.59–33.40, p < 0.001). Conclusions: In this large European caregiver survey, reported consumption of selected energy-dense foods was generally low, although fried food intake and higher snack frequency were associated with perceived obesity. Physical activity patterns were closely aligned between caregivers and individuals with DS, suggesting shared household health behaviors. These findings highlight the importance of involving caregivers and family environments in lifestyle interventions aimed at supporting physical activity and weight management in individuals with DS. Full article

Background: Contemporary models of parental burnout conceptualize it as an interplay between parental demands and insufficient resources. However, research and current models remain sparse in their understanding of these demands and dynamics within the context of managing a child’s sleep wellness and related problems, which constitute a fundamental aspect in early parenting. The present work addresses this gap by examining this issue comprehensively. Methods: 2291 mother–child dyads were recruited from two sources: a random population sample (n = 1409) and a clinical sample (n = 882) of mothers seeking consultation for their child’s sleep issues (0–5 years old). Mothers completed an extensive panel of validated instruments and survey questions covering burnout and psychopathologies, sleep parameters, psychosocial, organizational, and demographic variables. Inferential analyses, regression modeling, cluster analysis, and mediation models were applied. Results: Two distinct profiles of parental burnout emerged: one associated with child sleep disturbances and the other with general parenting stress. The strongest-weighted risk factors pertained to maladaptive beliefs and perceptions (e.g., shame, “I am a bad parent”, “My child cries because I do not meet his needs”), as well as additive stressors such as interparental tension and daytime child behavioral problems. The strongest protective factors involved resources that reduced parental demands or facilitated recovery, including couple satisfaction, a consistent bedtime routine, greater capacity to take breaks (e.g., additional caregivers, father nighttime involvement, parental cohabitation, and child screen time). Conclusion: The identification of two distinct burnout profiles highlights the importance of incorporating, or placing more centrally, the management of young children’s insomnia in contemporary theoretical models of parental burnout. This research highlights the need for interventions on healthy self-beliefs and perceptions, effective daytime parenting strategies, positive couple dynamics, consistency in bedtime routines, and equitable distribution of caregiving responsibilities between parents to reduce the risk of parental burnout. Full article

Background/Objective: Informal caregiving for individuals with severe mental disorders (SMDs) often leads to significant psychological distress. However, the specific coping strategies that determine mental health outcomes among siblings remain poorly understood. This study aimed to analyze the predictive capacity of various coping strategies regarding health, perceived stress, self-esteem, and caregiving experience for siblings. Methods: A cross-sectional study was conducted with a sample of siblings of patients with SMDs (N = 60) from mental health service. Self-report measures were used to assess perceived health, perceived stress, self-esteem, coping strategies, and caregiving experience. Multiple linear regression analyses were performed for each dependent variable, controlling for collinearity. Results: The siblings reported a higher mean use of problem-focused coping strategies compared to emotion-focused coping strategies. Regression models were statistically significant for all analyzed variables, except for somatic symptoms. Emotion-focused maladaptive coping (EFMC) strategies emerged as the most consistent and powerful predictor, showing a significant association with positive caregiving appraisal (β = 0.657), depression (β = 0.500), poor health (β = 0.453), negative stress (β = 0.449), social dysfunction (β = 0.429), self-esteem (β = −0.390), and anxiety (β = 0.368). In contrast, problem-focused strategies were largely non-significant, except for an association with positive and negative aspects of caregiving (β_PFMC = 0.509, β_PFMC = 0.312, respectively), and positive stress (β_PFAC = −0.272). Conclusions: These results suggest that while siblings of people with SMDs report a greater use of problem-focused coping strategies, the adoption of EFMC strategies is the most detrimental factor observed, given their negative influence on mental health, self-esteem, and caregiving experience. Full article

Background: This study examined how patients and caregivers perceive and experience AI-based care technologies through text mining analysis. The goal was to identify major themes, sentiments, and value-oriented interpretations embedded in their narratives and to understand how these perceptions align with key dimensions of patient-centered care. Methods: A corpus of publicly available narratives describing experiences with AI-based care was compiled from online communities. Natural language processing techniques were applied, including descriptive term analysis, topic modeling using Latent Dirichlet Allocation, and sentiment profiling based on a Korean lexicon. Emergent topics and emotional patterns were mapped onto domains of patient-centered care such as information quality, emotional support, autonomy, and continuity. Results: The analysis revealed a three-phase evolution of care values over time. In the early phase of AI-mediated care, patient narratives emphasized disruption of relational care, with negative themes such as reduced human connection, privacy concerns, safety uncertainties, and usability challenges, accompanied by emotions of fear and frustration. During the transitional phase, positive themes including convenience, improved access, and reassurance from diagnostic accuracy emerged alongside persistent emotional ambivalence, reflecting uncertainty regarding responsibility and control. In the final phase, care values were restored and strengthened, with sentiment patterns shifting toward trust and relief as AI functions became supportive of clinical care, while concerns related to depersonalization and surveillance diminished. Conclusions: Patients and caregivers experience AI-based care as both beneficial and unsettling. Perceptions improve when AI enhances efficiency and information flow without compromising relational aspects of care. Ensuring transparency, explainability, opportunities for human contact, and strong data protections is essential for aligning AI with principles of patient-centered care. Based on a small-scale qualitative dataset of patient narratives, this study offers an exploratory, value-oriented interpretation of how relational care evolves in AI-mediated healthcare contexts. In this study, care-ethics values are used as an analytical lens to operationalize key principles of patient-centered care within AI-mediated healthcare contexts. Full article

Background/Objectives: The beliefs about a disease and its treatment determine how patients and caregivers manage and adapt to the illness. The study aimed to explore the QoL and mental health of children with food allergy (FA), and parental illness perception, analyzing influences of sociodemographic and clinical factors and associations between constructs. Methods: This cross-sectional study involved 79 parents of children (3–12 years) with FA, who completed the Food Allergy Quality of Life Questionnaire—Parent Form (FAQLQ_PF), Strengths and Difficulties Questionnaire (SDQ), and Brief Illness Perception Questionnaire (B-IPQ). Pearson correlation coefficient and multiple linear regressions were performed. Results: FAQLQ score was positively associated (0.28) with SDQ score, particularly internalizing problems (0.33), and with B-IPQ score (0.64), consequences for the child and parents (0.66), timeline (0.43), and emotional representation (0.63). SDQ score was negatively associated with parental control (−0.27) and coherence (−0.24), while internalizing problems were negatively associated with parental control (−0.23) and positively associated with timeline (0.24). A greater number of allergens was associated with a worse QoL (p < 0.05). Previous anaphylaxis was associated with higher illness identity (p < 0.05). An age between 7 and 12 years was associated with lower control and coherence. In the final model, higher scores on internalizing problems, timeline, and emotional representation were associated with poorer child QoL (p < 0.001). Conclusions: It is crucial to understand and explore illness perception, as well as focus on psychosocial–emotional aspects of FA in both children and parents. A multidisciplinary approach addressing medical and psychological aspects of FA should be implemented to ensure optimal QoL. Full article

Animal-assisted intervention is widely used in children and adolescents with neurodevelopmental disorders. The aim of this review is to understand the perceptions of parents of children with neurodevelopmental disorders, regarding the benefits of their children’s participation in animal-assisted intervention. Using the PRISMA methodology, a search was conducted in the Web of Science and ProQuest Central databases. The number of articles included in the review was 23 after applying the selection criteria. The results indicate that in all interventions carried out with children with neurodevelopmental disorders, parents perceive improvements in their children mainly at the physical, social and emotional levels. In addition, they identify positive aspects that influence family functioning. It can be concluded that these types of interventions, regardless of the type of animal or activity, are a beneficial tool when addressing different symptoms associated with neurodevelopmental disorders, having an impact not only on the child or adolescent, but also on parents or caregivers. Full article

Routine Early Intervention services are an ideal context to evaluate parent-mediated intervention (PMI) delivery. While effectiveness research suggests that receiving manualized PMIs positively affects caregivers’ learning and use of intervention strategies, the impact of other aspects of delivery, such as PMI adaptation, on caregiver engagement and learning is less clear. The current study aimed to address this gap by closely characterizing the delivery and associated outcomes of an autism PMI, Project ImPACT, within an Early Intervention (EI) Part C system. In total, 21 EI providers and 23 caregivers of children with social communication delays participated. Following training in Project ImPACT, the providers submitted videos of their Project ImPACT sessions as part of routine service delivery. The sessions were behaviorally coded for Project ImPACT coaching fidelity and instances in which Project ImPACT was adapted. After each session, the caregivers rated their participatory engagement and therapeutic alliance. Before and immediately following the intervention, the caregivers also completed measures of their self-efficacy and their child’s social communication skills, and their use of Project ImPACT strategies (i.e., fidelity) was behaviorally coded. The results demonstrated that EI providers’ Project ImPACT coaching fidelity was not related to caregiver ratings of therapeutic alliance or participatory engagement at the session level. Augmenting Project ImPACT sessions was associated with higher caregiver ratings of therapeutic alliance but not with participatory engagement. Although provider coaching fidelity was not associated with changes in caregiver ratings of self-efficacy, it was associated with caregiver use of Project ImPACT strategies focused on teaching their children new skills. There was no association between provider fidelity and caregiver report of child social communication outcomes. The current study highlights the complicated relationship between the delivery of autism PMIs and caregiver-reported outcomes. The findings highlight the value of holistic delivery models that support adaptations in response to child- and family-level factors. Full article

Background/Objectives: Pet therapy, also known as Animal-Assisted Therapy (AAT), is increasingly recognized for its potential to support pediatric patients and their families in the hospital setting. This study explores the perceptions of parents of pediatric surgical patients regarding the use of pet therapy during hospitalization. Methods: A qualitative study was conducted using Interpretative Phenomenological Analysis (IPA). Semi-structured interviews were conducted with parents of children admitted for surgery procedures. The interviews were transcribed, read thoroughly, and analyzed. Thematic analysis was employed to identify recurring themes related to the emotional, relational, and organizational aspects of pet therapy. Results: Twenty mothers were interviewed and five main themes emerged: (1) general perception of pet therapy (valuable tool to reduce children’s anxiety and provide emotional support); (2) parental expectations about benefits for their children (positive interactions between children, parents and caregivers); (3) expected behavioral impact on the child (animals were viewed as mediators of relational bonding, especially in stressful moments); (4) emotional repercussions on caregivers (parental well-being improved when children appeared calmer during sessions); and (5) preferences regarding animals and organizational aspects (most parents preferred dogs for their empathic and communicative nature, while horses were appreciated but considered impractical in a hospital setting). In addition, the presence of structured AAT programs also positively influenced parents’ perception of the quality of care. Nurses played a crucial role in supporting the implementation of AAT and family involvement, aligning with the Family-Centered Care model. Conclusions: This study found that parents view AAT as a valuable intervention that reduces anxiety and supports emotional well-being in hospitalized children. Nurses play a vital role in integrating AAT within Family-Centered Care to enhance the pediatric hospital experience. Full article

Aim: To explore the experiences, beliefs, and values of patients who participated in a two-arm randomized clinical trial assessing a nurse-led intervention program for chronic pain self-management, which demonstrated positive effects on pain reduction, depression, and anxiety, and on health-related quality of life 24 months after completion of the program. Design: Descriptive phenomenological qualitative study. Methods: Patients were recruited via telephone, informed about the study, and invited to participate in an individual interview at a place of their choice (hospital or home). All interviews were audiotaped, and an inductive thematic analysis was performed. Results: Seven interviews were carried out between both groups. Six emerging categories were found: effective relationship with the healthcare system, learning to live with pain, family and social support, behaviors regarding pain, resources for self-management, and concomitant determinants. Conclusions: Patients report key aspects that help us to understand the impact of this type of nurse-led group intervention: the intrinsic therapeutic effect of participating in the program itself, the ability to learn to live with pain, the importance of family and social support, the modification of pain-related behaviors, and the identification of resources for self-care. The findings highlight the need for gender-sensitive, individualized care approaches to chronic pain, addressing stigma and social context. Expanding community-based programs and supporting caregivers is essential, as is further research into gender roles, family dynamics, and work-related factors. Full article

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

Objective: Family members of individuals with spinal cord injury often take on caregiving responsibilities, which can lead to caregiver burden. One factor that can mitigate the adverse effects of caregiving, such as caregiver burden, is receiving social support. Caregivers can obtain support from people they meet in person (in-person support) and on social media platforms (online support). The current cross-sectional correlational design study investigated the moderating effect of in-person and online support on the association between relationship quality, caregiver competence, caregiver distress, and caregiver burden (dependent variables). Methods: Family caregivers of an individual with spinal cord injury (n = 115) completed an online survey assessing relationship quality, competence, distress, burden, and in-person and online supports. Results: Moderation analyses showed that the negative associations between relationship quality and physical burden (B = −0.58; p = 0.019) and caregiver competence and physical burden (B = −0.73; p = 0.013) were more pronounced at higher levels of online social support. Furthermore, the magnitude of the negative associations between relationship quality and emotional burden (B = −0.52; p < 0.001) and caregiver competence and emotional burden (B = −0.34, p = 0.012) were more pronounced at higher levels of in-person social support. Moderation analyses also revealed that the positive association between distress and social burden (B = 0.47; p = 0.029) and emotional burden (B = 0.26; p = 0.045) were stronger when caregivers reported higher levels of online support. Conclusions: In-person and online support can buffer some aspects of caregiver burden on caregiver well-being. While online support is usually considered beneficial, greater online engagement may contribute to higher levels of burden when the distress is high. It is possible, however, that caregivers who are more distressed engage more with online media to receive support. Full article

Background: The aging population is increasing, leading to a greater need for home care for older adults, often provided by informal caregivers (ICs). These caregivers face numerous challenges, requiring adequate training and support. Objectives: This study aimed to map the main interventions performed by the Rehabilitation Nursing Specialist in empowering ICs of older adults at home. Methods: A scoping review was conducted following the Joanna Briggs Institute methodology. The search included seven articles published between 2019 and 2024, in Portuguese, English, and Spanish, available in the PubMed e CINHAL Ultimate databases. The descriptors used were (Rehabilitation Nursing) AND (Informal Caregivers OR Caregivers) AND (Elderly OR Aged) AND (mentoring OR Training. Results: The RNS interventions focused on training caregivers in technical skills (e.g., positioning, transfers, hygiene care, feeding, medication administration), preventing caregiver burden, managing behavioral and psychological symptoms of dementia, promoting self-care, and emotional support. Educational programs and the use of technologies (telehealth) were identified as effective strategies. Conclusions: RNS interventions are crucial for enhancing the skills and well-being of ICs, improving the quality of care provided to older adults at home, and reducing caregiver burden. Person-centered care, continuous support, and recognizing the caregiver’s role are fundamental aspects of these interventions. Full article