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).

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

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.

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.

Humans ; Child ; Caregivers ; Singapore ; Software

To develop a caregiver parenting behavior scale for children aged 2 to 6 years, and to verify its reliability and validity. This study recruited 1 350 caregivers of children aged 2 to 6 years. The item discrimination analysis and exploratory factor analysis were used to analyze the structure, dimensions and items of the scale. Homogeneity reliability, split-half reliability and test-retest reliability were used to analyze the reliability of the scale. Content validity and construct validity were used to analyze the validity of the scale. The results showed that the final scale contained 7 dimensions and 45 items. Cronbach's α coefficient of the total scale was 0.945; the coefficient of split half was 0.899; the test-retest reliability analysis showed that the correlation coefficients between the two tests were 0.893 (total score), 0.854 (social), 0.832 (language), 0.871 (gross motor), 0.893 (fine motor), 0.862 (cognitive), 0.832 (self-care), and 0.872 (sensory). The content validity analysis was carried out by two rounds of expert argumentation using Delphi expert consultation method. The Kendall coefficient of the items score in two rounds of Delphi expert consultation was 0.813 (P<0.01). The structure validity analysis showed that there were significant correlations between each dimension and the total scale, also between each dimension of the scale, and the extracted average variance values of each dimension was greater than the correlation coefficients between this dimension and other dimensions. In conclusion, the reliability and validity of the scale are qualified. It can be used as a tool to evaluate and guide the parenting behavior of caregivers of children aged 2 to 6 years.
Humans ; Child ; Caregivers/psychology* ; Reproducibility of Results ; Parenting ; Surveys and Questionnaires ; Factor Analysis, Statistical ; Psychometrics/methods*

Objective: To investigate the psychological effect of physical function dependence on maintenance hemodialysis (MHD) patients and their primary family caregivers. Methods: The study was a cross-sectional survey. The MHD patients in the hemodialysis centre, the Third Affiliated Hospital of Guangzhou Medical University from March 2022 to June 2022 were enrolled. The patients' demographics and laboratory data were collected. Katz and Lawton-Brody questionnaires were used to assess patients' physical function, and Five Item Mental Health Inventory (MHI-5) was used to evaluate the psychological conditions of the patients and their primary family caregivers. Multiple linear regression analysis was used to analyze the influencing factors of MHI-5 scores of the patients and their primary family caregivers. Results: A total of 116 patients were included, with 61 males and 55 females. There were 47 patients (40.5%) with physical function dependence. In the physical function dependence group, serum albumin (t=-2.512, P=0.013), MHI-5 scores of patients and their primary family caregivers (t=-8.461, P < 0.001; t=-8.533, P < 0.001) and male ratio (χ²=8.467, P=0.002) were significantly lower, and the age (t=9.754, P < 0.001) and the proportions of hypertension (χ²=20.421, P < 0.001), diabetes (χ²=10.470, P=0.002), cardiovascular and cerebrovascular diseases (χ²=9.898, P=0.003) were significantly higher than those in the normal physical function group. The incidence of mental disorders in MHD patients was 39.7%(46/116), and the incidence of mental disorders in the physical function dependence group was significantly higher than that in the normal physical function group [72.3%(34/47) vs. 17.4%(12/69), χ²=35.275, P < 0.001]. The incidence of mental disorders in the primary family caregivers was 32.8%(38/116), and the incidence of mental disorders in the primary family caregivers of physical function dependence group was significantly higher than that in the normal physical function group [66.0%(31/47) vs. 10.1%(7/69), χ²=39.536, P < 0.001]. The incidence of mental disorders in the primary family caregivers of MHD patients who were not spouses was significantly higher than that of spouses [46.0%(29/63) vs. 17.0%(9/53), χ²=11.028, P=0.001], and in physical function dependence group, the incidence of mental disorders in non-spouses was significantly higher than that in spouses [80.6%(25/31) vs. 37.5%(6/16), χ²=8.749, P=0.003]. Multiple linear analysis showed that bathing (β=-5.182, P=0.015), doing laundry (β=-7.053, P < 0.001), taking medication (β=-8.680, P=0.003), and female patients (β=-2.982, P=0.030) were the influencing factors of MHI-5 scores decline in MHD patients. Bathing (β=-4.404, P=0.032), preparing meals (β=-3.954, P=0.041), managing money (β=-5.067, P=0.021), and female patients (β=-2.466, P=0.042) were the influencing factors of MHI-5 scores decline in primary family caregivers. Conclusions: The incidence of physical function dependence in MHD patients is high, and its manifestations and influencing factors are diverse. The incidence of mental disorders in MHD patients and their primary family caregivers is also high, especially in patients with physical function dependence and non- spouse family caregivers. Clinicians should pay attention to and assess the physical function dependence of MHD patients as early as possible, and intervene in time. At the same time, they should also pay attention to the mental health of MHD patients and their primary family caregivers.
Humans ; Male ; Female ; Caregivers ; Cross-Sectional Studies ; Renal Dialysis/psychology* ; Hypertension ; Diabetes Mellitus

OBJECTIVES: The interaction between elderly people with disabilities and their caregivers and the improvement of caregiver burden is important for elderly people with disabilities and their caregivers. This study aims to explore the multiple mediating roles of caregiver's caring ability and resilience in depression in the elderly people with disabilities on caregiver burden. METHODS: A total of 246 elderly people with disabilities at home and their family caregivers from 5 regions were investigated by questionnaires, including the General Information Questionnaire, the Patient Health Questionnaire, the Family Caregiver Task Inventory, the Resilience Scale, and the Caregiver Burden Interview. A multiple mediation model was constructed and tested. RESULTS: Univariate analysis showed that the caregiver burden of disabled elderly men is higher than that of women; the lower the level of self-care of disabled elderly individuals, the greater the burden on their caregivers (both P<0.05). Correlation analysis showed that depression of the disabled elderly people was positively correlated with the caregiver burden (P<0.01). Caregiver's caring ability was positively correlated with caregiver's resilience (P<0.01), and both were negatively correlated with caregiver burden (both P<0.01). The multiple mediating effects of caregiver caring capacity and resilience between depression of the disabled elderly people and caregiver burden were significant, with the mediating effects of caregiver caring capacity and resilience accounting for 68.9% and 26.2% of the total effect, respectively. CONCLUSIONS Depression in the elderly people with disabilities can indirectly affect caregiver burden through the caregiver's caring ability and resilience. Families of older people with disabilities need to focus on both the elderly and their caregivers. It is possible to reduce the caregiver burden and improve the physical and mental health of the dyads by empowering the caregiver's caring ability and resilience.
Male ; Humans ; Female ; Aged ; Caregiver Burden ; Disabled Persons ; Caregivers ; Surveys and Questionnaires ; Mental Health

INTRODUCTION: Behavioural and psychological symptoms of dementia (BPSD) are considered integral parts of dementia. While pharmacotherapy is reserved for severe symptoms of BPSD, the associated adverse effects can be detrimental. Therefore, non-pharmacological intervention is recommended as the first line of treatment in the management of BPSD. This study aimed to explore the non-pharmacological approaches for the management of BPSD and the strategies and barriers to implementing them in secondary care facilities in Malaysia. METHODS: A qualitative study design was employed. Data were collected through observations and semi-structured interviews of 12 caregivers and 11 people with dementia (PWD) at seven secondary care facilities. Observations were written in the field notes, and interviews were audio-recorded and transcribed. All data were subjected to thematic analysis. RESULTS: Some personalised non-pharmacological interventions, such as physical exercise, music therapy, reminiscence therapy and pet therapy, were conducted in several nursing care centres. Collaborative care from the care providers and family members was found to be an important facilitating factor. The lack of family support led to care providers carrying additional workload beyond their job scope. Other barriers to non-pharmacological interventions were cultural and language differences between the care providers and PWD, inadequate staff numbers and training, and time constraints. CONCLUSION Although non-pharmacological approaches have been used to some extent in Malaysia, continuous education and training of healthcare providers and the family members of PWD is needed to overcome the challenges to their successful implementation.
Humans ; Dementia/diagnosis* ; Psychotherapy ; Qualitative Research ; Health Personnel ; Caregivers