BACKGROUND AND OBJECTIVES

Diet compliance is critical in managing Maple Syrup Urine Disease (MSUD) to prevent physiological and neurological damage. However, there is a lack of studies looking at factors critical to diet compliance. This study determined the caregivers’ nutrition knowledge, attitudes, and feeding practices (KAP); and its relationship to Filipino MSUD children’s leucine level, nutritional status, and nutrient intake.

A cross-sectional, sequential explanatory research approach using survey was utilized. Data tools were questionnaires and food records.

The participants were 20 caregivers and 21 MSUD children (aged 6 to 83 months). Caregivers had moderately high feeding practices and knowledge scores and had positive attitudes towards providing adequate nutritional care; still, they were struggling with diet compliance.

Their nutrition knowledge was related to their attitude (p-value: 0.021), feeding practices (p-value: 0.037), and their children’s weight-for-age (p-value: 0.036). Furthermore, knowledge and feeding practices were related to the children’s natural-protein status (p-value: 0.043 and 0.006, respectively). The caregivers’ sex was related to the children’s leucine (p-value=0.010), those with female caregivers had lower leucine by 470 μmol/L on average. Moreover, children with good leucine control belonged to higher-income households (p-value=0.049).

With caregiver's nutrition knowledge having been possibly associated with the children’s weight-forage, and their knowledge and feeding practices with the children's natural protein status, as well as knowledge positively affecting both attitude and feeding practice, interventions for improving all caregivers’ nutrition knowledge and feeding practices are recommended. Additionally, with caregivers’ sex and income having been found to be related to metabolic control, it is suggested that strategies to better manage these barriers be carried out. These may include improving support for male caregivers, with children under their care having higher leucine than those cared for by their female counterparts. Added provisions may likewise be planned for further reducing the impact of income-related barriers.

Effective communication between parents and occupational therapists (OTs) is central to family-centered care in Filipino pediatric practice; unclear expectations, power differentials, and unaddressed cultural dynamics often hinder collaboration. This paper aims to develop a culturally grounded conceptual framework that identifies and illustrates the dynamics of parent–OT communication supporting reflective, strengths-based, and context-sensitive collaboration in Filipino pediatric OT. It was developed through an iterative process that included clinical reflection, extensive literature review, and iterative consultation with mentors and reviewers. The framework integrates the ideas of the Kawa model, Two-Way Communication model, Sikolohiyang Filipino concepts of loob–labas–kapwa, the Double Empathy Problem, and the Strengths-Based approach. Communication elements (sender–receiver roles, message, feedback, medium, and noise) are situated within three cultural–relational spheres (inner self, shared understanding, and sociocultural context) to explain how messages are produced, interpreted, and sustained over time. The framework offers a culturally grounded lens and reflective tool for OTs seeking to strengthen therapeutic partnerships with Filipino families, while highlighting the need for empirical validation, multi-caregiver applications, and co-designed refinements with parents and neurodivergent adults.

Objective To analyze the caregiver presence needs and their influencing factors among hospitalized elderly non-surgical patients and provide a basis for formulating relevant policies.Methods A descriptive qualitative study method was adopted.Through purposive sampling,semi-structured interviews were conducted on elderly non-surgical patients and their families and medical staff in Peking Union Medical College Hospital from September to October 2023.MAXQDA 2020 and the 7-step phenomenological analysis method of Colaizzi were used to classify and code the interview contents and identify themes.Results The categories of caregiver presence needs of elderly non-surgical patients included basic living assistance needs,disease monitoring needs,psychological support needs,as well as the needs for family members to provide economic support and participate in treatment decision-making.The influencing factors included advanced age,frailty,the lack of self-care ability in patients with comorbidities,the susceptibility of patients to sudden situations during the disease exacerbation period,the increased risk of unexpected events in patients with psychological distress,and patients' concerns about social support and medical decision-making.Conclusion The caregiver presence needs of elderly non-surgical patients during hospitalization are high and influenced by multiple factors.
Humans ; Caregivers/psychology* ; Aged ; Hospitalization ; Social Support ; Male ; Qualitative Research ; Female

BACKGROUND

Globally, cancer remains to be one of the leading causes of mortality and poses significant burden to patients and families. A growing body of evidence suggests that early palliative care results in more favorable patient and caregiver outcomes compared to standard oncology care alone. 

This study aims to determine the effects of early palliative care on caregivers of adult cancer patients in terms of quality of life, psychological distress, and satisfaction with care. 

Systematic database searches in PubMed, Google Scholar, Cochrane library and Clinicaltrials.gov registry was conducted to select eligible studies for this review. Keywords, limit fields and Boolean operators were used for the search. Qualitative and quantitative analyses through the Review manager 5.4 software were done to compare quality of life, psychological distress, and satisfaction with care among caregivers given early palliative care vs. caregivers given standard oncology care. 

This review revealed inconclusive evidence on the benefits of early palliative care on caregiver outcomes when compared to standard care. We reviewed outcomes of early palliative care including quality of life, psychological distress, and satisfaction with care, but evidence remains unclear due to paucity of studies. Larger, high-caliber trials with more robust evidences, refinement of measurement tools catered to caregivers with higher sensitivity, and standardization of EPC protocol are needed to detect effect of EPC. 

OBJECTIVES: To investigate the current status and influencing factors of quality of life in children and adolescents with type 1 diabetes (T1DM) in Xinjiang. METHODS: A convenience sampling method was used to select 259 children with T1DM and their primary caregivers who attended three tertiary hospitals in Xinjiang from January 2023 to February 2024. The Pediatric Quality of Life Inventory^TM Version 4.0 Generic Core Scales (PedsQL^TM4.0) and Pediatric Quality of Life Inventory^TM Version 3.2 Diabetes Module (PedsQL^TM3.2-DM) were used to assess the quality of life of the children. Information on family demographics, caregiver burden, and caregiving ability was also collected. Multiple linear regression analysis was employed to identify factors associated with the quality of life of the children. RESULTS: The scores for PedsQL^TM4.0 and PedsQL^TM3.2-DM were 77±16 and 71±16, respectively. Both were negatively correlated with caregiver burden (P<0.05) and positively correlated with caregiving ability (P<0.05). Multiple linear regression analysis indicated that caregiver burden, caregiving ability, family income, and parent-child relationship were significantly associated with generic quality of life (P<0.05), whereas caregiver burden, caregiving ability, disease duration, place of residence, and glycated hemoglobin level were significantly associated with diabetes-specific quality of life (P<0.05). CONCLUSIONS The overall quality of life of children and adolescents with T1DM in Xinjiang is relatively low. The quality of life is influenced by a combination of factors including family caregiver burden, caregiving ability, family income, parent-child relationship, disease duration, place of residence, and glycated hemoglobin level. Strategies to improve quality of life should consider the combined impact of individual disease characteristics and family factors.
Humans ; Quality of Life ; Diabetes Mellitus, Type 1/psychology* ; Adolescent ; Child ; Male ; Female ; Caregivers/psychology* ; Child, Preschool ; Linear Models

OBJECTIVES: To develop a scale for evaluating responsive feeding behaviors among caregivers of children aged 0-24 months in China, and to examine its reliability and validity. METHODS: An initial item pool was constructed through literature review, expert panel discussions, and caregiver interviews. Items were screened and revised using expert consultation and item analysis. A total of 523 caregivers of children aged 0-24 months were randomly selected from urban community health service centers in Nanjing for a formal survey to assess the scale's reliability and validity. RESULTS: The scale comprised two age-specific subscales: 0-6 months (4 dimensions, 18 items) and 7-24 months (5 dimensions, 29 items). Cronbach's alpha values for the two subscales were 0.766 and 0.850, respectively; split-half reliability coefficients were 0.616 and 0.716. Content validity indices were 0.83 for the 0-6 months subscale and 0.86 for the 7-24 months subscale. Confirmatory factor analysis supported the structural validity of both subscales, with all fit indices within acceptable ranges. CONCLUSIONS The two age-specific subscales demonstrate good reliability and validity and can serve as practical tools for assessing caregivers' responsive feeding behaviors in children aged 0-24 months, suitable for clinical application and dissemination.
Humans ; Infant ; Caregivers/psychology* ; Male ; Female ; Feeding Behavior ; Child, Preschool ; Infant, Newborn ; Reproducibility of Results

OBJECTIVES: With the accelerating aging of the population and the rising prevalence of chronic diseases, the number of patients with pressure injuries (PIs) has increased markedly, prolonging the period of disease-related care. Informal caregivers play a critical role in the daily care of patients with pressure injuries, and their care burden has become increasingly prominent. This study aims to investigate the current status and influencing factors of care burden among informal caregivers of patients with PIs, providing evidence for targeted intervention strategies. METHODS: A total of 170 informal caregivers of patients with PIs were selected by convenience sampling from the Third Xiangya Hospital of Central South University. General demographic and clinical data of both patients and caregivers were collected. The Zarit Caregiver Burden Inventory (ZBI), Knowledge-Attitude-Practice Scale for Informal Caregivers of Patients with PIs, General Self-Efficacy Scale (GSES), and Family Caregiver Task Inventory (FCTI) were used to assess caregiving burden, knowledge-attitude-practice level, self-efficacy, and caregiving ability, respectively. Pearson correlation analysis was conducted to evaluate relationships among ZBI, Knowledge-Attitude-Practice Scale for Informal Caregivers of Patients with PIs, GSES, and FCTI scores. Stepwise multiple linear regression analysis was used to identify factors influencing caregiving. RESULTS: Among the 170 patients with pressure injuries, the age was (65.52±15.88) years; 118 (69.41%) were male and 52 (30.59%) were female. The duration of PIs was less than 1 month in 108 (63.53%) cases and 1 to 6 months in 40 cases (23.53%). Stage II injuries were predominant (135 cases, 79.41%). A total of 193 pressure injury sites were recorded, most commonly located at the sacrococcygeal region (127 sites, 65.80%), followed by the head (3 sites, 1.55%), shoulder and back (9 sites, 4.66%), feet (24 sites, 12.44%), and other regions (30 sites, 15.55%). Informal caregivers were 48.82% aged 46 to 59 years, 54.71% female, 41.77% primarily spouses and 47.06% children of the patients, and 77.06% lived with the patients. Caregivers who received assistance from others or had higher family per-capita monthly income reported significantly lower caregiver burden scores than those without assistance or with lower income (all P<0.001). The total ZBI score was 50.89±14.95, indicating a moderate burden. The total scores of the Knowledge-Attitude-Practice Scale for Informal Caregivers, GSES, and FCTI were 50.61±7.22, 26.03±7.11, and 14.76±8.70, respectively. Pearson correlation analysis revealed that ZBI scores were correlated with scores on the Knowledge-Attitude-Practice Scale for Informal Caregivers of Patients with PIs (r=-0.543, P<0.001), GSES scores (r=-0.545, P<0.001), and FCTI scores (r=0.800, P<0.001). The scores on Knowledge-Attitude-Practice Scale for Informal Caregivers of patients with PIs were correlated with GSES scores (r=0.500, P<0.001) and FCTI scores (r=-0.461, P<0.001); GSES scores was negatively correlated with FCTI scores (r=-0.415, P<0.001). Stepwise multiple linear regression analysis showed that assistance availability, family per-capita monthly income, total scores on the Knowledge-Attitude-Practice Scale for Informal Caregivers of Patients with PIs, total GSES score, and total FCTI score were the main influencing factors of caregiver burden, jointly explaining 79.38% of its variance. CONCLUSIONS The main factors influencing the caregiving burden of informal caregivers of patients with PIs include the availability of assistance, family per-capita monthly income, total score on the Knowledge-Attitude-Practice Scale for Informal Caregivers of PI patients, total score on the GSES, and total score on the FCTI. Developing targeted intervention strategies addressing these factors may help alleviate the caregiving burden among informal caregivers of patients with PIs.
Humans ; Caregivers/psychology* ; Pressure Ulcer/nursing* ; Female ; Male ; Middle Aged ; Cost of Illness ; Adult ; Aged ; Surveys and Questionnaires ; Health Knowledge, Attitudes, Practice ; Self Efficacy ; Caregiver Burden ; China

BACKGROUND

Caregiving for survivors of stroke often leads to significant stress, impacting caregivers’ health and well-being. This study aims to explore the occupational engagement and coping strategies of family caregivers in a community rehabilitation setting, focusing on the physical, emotional, and financial challenges they face.

A qualitative descriptive phenomenological approach was used, employing in-depth interviews with eight family caregivers of stroke survivors. Participants were recruited from a rehabilitation center in a central urban area in Cebu, Philippines. Thematic analysis was conducted to identify recurring patterns and key themes in the caregivers’ experiences.

Three main themes emerged from the analysis: (1) Navigating Caregiving and Life: Impact on Occupational Engagement, (2) Ripple Effect: The Strain of Emotional and Physical Demands, and (3) Navigating New Normals: Coping Strategies to Manage Caregiving Stress. Caregivers reported disruptions in daily routines, significant emotional and physical strain, and financial burdens. Coping strategies varied from adaptive techniques, such as seeking social support, to maladaptive behaviors like smoking.

Caregivers experience significant challenges in maintaining their occupational engagement due to the demands of caregiving. This highlights the need for targeted interventions, such as pre-discharge education, financial support, and access to community-based programs, to improve caregiver well-being and enhance their ability to manage caregiving stress.

OBJECTIVE

To investigate factors influencing adherence of caregivers to prescribed out-patient management of children with cerebral palsy (CP).

This prospective cohort study enrolled 106 children with CP and their caregivers seen at the Philippine General Hospital (PGH) from July 1, 2018 to April 30, 2019 to investigate the association of patient profile, caregiver profile, accessibility of treatment center, and type of therapy, to adherence to out-patient management.

Atotal of 106 pediatric patients with CPand their caregivers participated in the study with no dropouts observed. Adherence to therapy was defined as completion of patient of at least 50% of the prescribed therapy sessions or completion of at least one set of therapy. Adherence was significantly increased when patients were referred to: (1) physical therapy (OR=34.5, CI 7.21 to 167, pCONCLUSION

Caregiver's adherence to out-patient rehabilitation program was seen to be significantly influenced by the type of therapy the patient with CPwas referred to undergo (i.e., PT, OT, SLT).

INTRODUCTION: In the early phase of the coronavirus disease 2019 (COVID-19) pandemic, children with COVID-19 in Singapore required hospital isolation. We aimed to explore the psychological experiences of children and their caregivers isolated in a tertiary university hospital due to COVID-19. METHODS: A prospective mixed-methods design was used to evaluate the psychological status of hospitalised family units with one or more children aged <18 years who had severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. Patient medical records were reviewed for demographic and clinical information. Parents and children ≥7 years of age underwent a psychologist-administered telephone-based interview. Self-reported, age-appropriate instruments, Short Mood and Feelings Questionnaire, and Screen for Adult/Child Anxiety-Related Disorders, were used to assess anxiety and depression, respectively. Participants were also interviewed qualitatively. RESULTS: Fifteen family units were hospitalised between March 2020 and May 2020. Of these, 13 (73%) family units were recruited. The median age of the children and median hospitalisation duration were 57 months and 21 days, respectively. Median number of COVID-19 polymerase chain reaction swabs performed for each child was eight. All children had asymptomatic to mild SARS-CoV-2 disease. The criteria indicative of anxiety disorder were met by 40% of adults and 80% of children, while the criteria indicative of separation anxiety were met by 60% of parents and 100% of children. One child met the criteria indicative of depression. Uncertainty, separation, prolonged hospitalisation and frequent swabs caused significant reported anxiety. CONCLUSIONS Families, especially children, had heightened anxiety while in hospital isolation. Therefore, home-based recovery from COVID-19 and psychological support for children and their families, with focus on early recognition of anxiety disorders, are recommended. We support review of paediatric isolation policy as the pandemic evolves.
Humans ; COVID-19/epidemiology* ; Male ; Child ; Female ; Singapore/epidemiology* ; Anxiety/etiology* ; Prospective Studies ; Adolescent ; Hospitalization ; SARS-CoV-2 ; Adult ; Child, Preschool ; Pandemics ; Parents/psychology* ; Caregivers/psychology* ; Family/psychology* ; Depression ; Patient Isolation/psychology* ; Surveys and Questionnaires