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

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

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

During the COVID-19 pandemic, social isolation and quarantine measures set to control the spread of the infection paved for the increased utilization of virtual methods of consultation and follow-up. Telerehabilitation allows access to rehabilitation services despite distance and makes possible the continuation of rehabilitation services despite the lack of face-to-face interaction. This is difficult for pediatric patients who are dependent on their caregivers for understanding and making decisions regarding their health. Loss of continuity of rehabilitation services led to poorer outcomes in children with disabilities. Although advantageous for them, pediatric patients may not benefit from telerehabilitation if caregivers have negative perceptions of the process and are unwilling to utilize the service.

This study determined caregivers’ perceptions and willingness to participate in telerehabilitation as a method of outpatient follow-up for pediatric patients admitted to a COVID-referral center in a developing country.

The study utilized a descriptive cross-sectional design. Respondents were adults (≥19 years old) caring for pediatric patients admitted at non-COVID wards of the Philippine General Hospital and who were referred for rehabilitation services. A survey tool adapted from a previous study on willingness to utilize telemedicine among caregivers of pediatric patients was translated into the Filipino language and used in the study. A dataset from Excel was imported in STATA 16 (StataCorp, Texas, USA) and was exhaustively checked for completeness, accuracy, and consistency before analysis. The association between patient characteristics and willingness to utilize telerehabilitation for any app was determined using Pearson’s chi-squared test or Fisher’s exact test, as appropriate. The latter was used when more than 20% of the cells had an expected value of less than or equal to five. A P value of less than 0.05 was considered significant for all tests.

Of 123 respondents, 92 (75%) reported willingness to utilize telerehabilitation for outpatient consultation and therapy using video calls or a customized telerehabilitation app when available. Among 31 (25%) respondents who were not willing or unsure of participation, the main reasons identified were preference for face-to-face, lack of financial resources/load, poor connectivity, and doubt about the effectiveness of telerehabilitation.Patients with younger age (Fisher’s exact test, P=0.023), low usage of video call service (Fisher’s exact test, P=0.020), and lack of available devices (Fisher’s exact test, P=0.015) significantly reduced willingness to utilize telerehabilitation. Caregiver age, sex, educational attainment, estimated monthly income, number of devices used, speed of internet connectivity, and technological behaviors did not show statistical significance in association with willingness to participate in telerehabilitation.Most caregivers recognized the usefulness of a service allowing transmission of health data to and from the hospital, consultation with a doctor in case of an emergency, sending of reminders for medical visits and therapy, and provision of a list of home exercises and nutritional recommendations. Telerehabilitation was perceived advantageous, but concerns regarding privacy, trust, lack of human contact, and technological difficulty were also present.

With high levels of willingness among caregivers, telerehabilitation is a viable method of providing rehabilitation services for the continuation of management after inpatient admission among pediatric patients. Limitations in its utilization include technological issues including the lack of devices, low level of service use, and slow internet connectivity. Although well perceived as advantageous, there are concerns regarding loss of human contact, difficulty in using technological devices, and trust and privacy issues that may affect utilization.

Objectives: The present study explored the experiences of caregivers raising a child with perinatal HIV infection through a narrative inquiry approach. It uncovered how caregivers learned about their children’s diagnosis, the challenges that they experience in raising their children, and how they cope with the ordeal caused by HIV infection. Methods: A total of ten participants joined the study – five caregivers participated in the key informant interviews (KIIs), with their respective child diagnosed to have perinatal HIV infection joining the focus group discussion (FGD) (n=5). Semi-structured individual interviews were carried out to examine in-depth narratives from the caregivers. We thoroughly analyzed the verbatim interview transcripts using reflexive thematic analysis (RTA) by the six-phase process outlined by Braun and Clarke (2019). NVivo 12 was utilized in the process of data analysis. The transcribed data were uploaded, coded, and analyzed individually. The software helped the organization and expression of the codes and themes. Result: In this study, three major themes and four sub-themes in each theme were generated: a) becoming known: the journey towards testing and treatment, which includes reasons for testing, cause of acquiring HIV, reactions, and treatment, b) passing through challenging times, which cover preparing the child to understand illness, child's awareness and understanding of illness, physical health, and discrimination, and c) receiving essential support which includes an understanding of illness, building hope, needs received, and sources of support. Conclusions Caregivers with children living with HIV face challenges such as preparing the illness to be known and understood by their child, managing the child’s physical health, and discriminating against others. However, they can live healthy and meaningful lives if they are given comprehensive support from the government, access to quality healthcare and education, and psychosocial interventions. The government and private sectors must make efforts to promote physical, emotional, and mental health care underpinning the well-being of caregivers and children with HIV. The retention of the programs offered by certain organizations (e.g., testing and treatment needs, nutritional and basic needs support, educational supply, and livelihood program for caregivers) and the increase in the number of psychoeducational and support group activities were suggested to significantly help in addressing the concerns of both caregivers and their child with perinatal HIV infection.
HIV ; Caregivers

OBJECTIVES

The present study explored the experiences of caregivers raising a child with perinatal HIV infection through a narrative inquiry approach. It uncovered how caregivers learned about their children’s diagnosis, the challenges that they experience in raising their children, and how they cope with the ordeal caused by HIV infection.

A total of ten participants joined the study – five caregivers participated in the key informant interviews (KIIs), with their respective child diagnosed to have perinatal HIV infection joining the focus group discussion (FGD) (n=5). Semi-structured individual interviews were carried out to examine in-depth narratives from the caregivers. We thoroughly analyzed the verbatim interview transcripts using reflexive thematic analysis (RTA) by the six-phase process outlined by Braun and Clarke (2019). NVivo 12 was utilized in the process of data analysis. The transcribed data were uploaded, coded, and analyzed individually. The software helped the organization and expression of the codes and themes.

In this study, three major themes and four sub-themes in each theme were generated: a) becoming known: the journey towards testing and treatment, which includes reasons for testing, cause of acquiring HIV, reactions, and treatment, b) passing through challenging times, which cover preparing the child to understand illness, child's awareness and understanding of illness, physical health, and discrimination, and c) receiving essential support which includes an understanding of illness, building hope, needs received, and sources of support.

Caregivers with children living with HIV face challenges such as preparing the illness to be known and understood by their child, managing the child’s physical health, and discriminating against others. However, they can live healthy and meaningful lives if they are given comprehensive support from the government, access to quality healthcare and education, and psychosocial interventions. The government and private sectors must make efforts to promote physical, emotional, and mental health care underpinning the well-being of caregivers and children with HIV. The retention of the programs offered by certain organizations (e.g., testing and treatment needs, nutritional and basic needs support, educational supply, and livelihood program for caregivers) and the increase in the number of psychoeducational and support group activities were suggested to significantly help in addressing the concerns of both caregivers and their child with perinatal HIV infection.