Primary Carers Research Articles

Family care and predictors of the disabled elderly in China: A cross-sectional study based on the Anderson model.

In light of China's progressively aging population, family care with the "warmth of affection" has always been an irreplaceable form of care that meets the wishes of the majority of disabled elderly to enjoy their twilight years comfortably. Data from a follow-up survey on the influencing factors of the Chinese Longitudinal Healthy Longevity Survey from 2018 and the Anderson Model was used as a theoretical framework to analyze the influencing factors using a binary logistic regression model. Children were the main providers of care services among disabled elderly in family care. Family care for disabled elderly was influenced by the combined effects of age (P < 0.01), gender (P < 0.05), marital status (P < 0.01), number of children (P < 0.01), housing ownership (P < 0.05), primary carer preference (P < 0.05), and self-assessed health (P < 0.01) were jointly affected. As a result, it's critical to set up a strong social support network that is focused on family caregiving and includes tailored interventions based on the requirements of disabled elderly and family caregivers.

Anti‐Imperial Autoethnographies of Family Separation: Feminist Solidarities Against Imperial Bordering in the UK

AbstractAnti‐imperial autoethnography is an important practice for critiquing and reflecting upon encounters with imperial bordering and its junctions with the neoliberal‐corporate university. In this article, we analyse our children's visa rejections to the UK, where we work and study as immigrant academics. We argue that the Home Office's policy of what constitutes a child's “welfare” produces racialised, gendered, and classist processes through which children are legally estranged from their primary carer when they immigrate for work unaccompanied by the other parent. This heteropatriarchal policy disproportionately impacts working migrant mothers. Academic carers can be further impacted by corporate university practices that eschew institutional agency and responsibility, including by individualising interpretations of visa rejections or presuming to abstain wholesale from matters concerning migrant family welfare. We reflect on how transnational feminist friendships and solidarities challenge imperial bordering and the interfaces of border enforcement with academic institutions and spaces, and acknowledge the importance of ongoing activist work to abolish borders from within the university.

"Traditionalizing" Effect of Parenthood on First Time Mothers: Insights from a Longitudinal Study

Researchers have documented that transitioning to parenthood may have a "traditionalizing“ effect on the gendered division of housework and childcare. The goal of this research is to enhance an understanding of the factors that influence this change in behaviour and attitudes swaying it to the side of traditional gender roles. To achieve this objective, two waves of individual semi-structured interviews were conducted with ten women during pregnancy and four to six months postpartum. Although convenience sampling was employed for data collection, the research participants displayed variation in terms of marital status, educational level, number of children, breastfeeding practices, and other characteristics. An inductive thematic analysis was carried out, allowing for a cross-sectional and longitudinal analysis of the data. Results show that the research participants who declared a more traditionally gendered division of household labour prior to childbirth continued to be responsible for a greater share of housework duties after childbirth. While childcare tasks were mostly carried out by mothers, surprisingly, only two out of nine women expressed dissatisfaction regarding such a division of duties. Furthermore, by employing a novel approach to measuring attitudes towards gender roles and after they became parents, four research participants have altered their views on who should be the primary carer of an infant. The research findings suggest that the “traditionalizing“ effect may be observed in the attitudes of some women without necessarily being observed in the division of housework duties. The salience of the new identity as a mother is being discussed as a precursor for the “traditionalizing“ effect observed.

Generating qualitative evidence of the validity of the Health Literacy Questionnaire Parent

Abstract Background Health literacy refers to the skills needed to access, understand, and navigate health information and services. The Health Literacy Questionnaire (HLQ) is a widely used validated measure of health literacy capturing nine distinct domains. The HLQ-Parent is a recent adaption of the HLQ which has been designed to capture the nuanced health literacy skills required by primary care givers of children. Generating qualitative evidence of validity of such tools is an important element of the validation process as it captures understanding and interpretation of items which is not achievable by quantitative methods alone. Therefore, the purpose of this study was to generate qualitative evidence of the validity of the HLQ-Parent. Methods A qualitative study implementing the HLQ-Parent during face-to-face cognitive interviews with concurrent probing was conducted. Primary carers of children aged 16 or under living in England were recruited via voluntary organisations supporting families. Qualitative data analysis was conducted on the audio recordings in the form of text summaries. Parents’ chosen HLQ-Parent responses were compared to their narrative responses and coded by the researcher as match, no match or unclear. Parents’ narrative responses were also compared to the HLQ-Parent item intent descriptions and coded as concordant, discordant, or unclear. Results Overall, participants (n = 9, mean age 40 years, 88.9% female) narrative responses matched to their chosen HLQ-Parent response, while their narrative responses were concordant with the HLQ-Parent item intent descriptions. Two participants narratives did not match their responses for the item:’ I have enough information to help me deal with my child’s health’. Conclusions The qualitative data provided evidence that participants understood and answered the HLQ-Parent items as intended. Study results contribute validity evidence for the use of HLQ-Parent to measure parental health literacy. Key messages • This study contributes evidence to the validity of the HLQ-Parent. • Qualitative methods provide valuable insights that enhance the overall understanding of health literacy measurement tools.

Physical and Mental Health of Informal Carers from Culturally and Linguistically Diverse (CALD) and Non-CALD Groups in Australia.

Empirical evidence shows that many family carers, especially immigrants, experience considerable health disadvantages and poorer quality of life. Australia has a rapidly increasing multicultural population, officially referred to as Culturally and Linguistically Diverse (CALD) people. This paper explores similarities and differences in the carer profile and physical and mental health of CALD and non-CALD family carers. A cross-sectional anonymous survey was conducted of self-reported family carers aged 18 years and older. Identical paper and online survey modes were provided to enable choice. Key variables included demographic and carer profile, diagnosed chronic physical health conditions, and validated scales such as CESD-12 and MOS-SF12, including derivative composite Physical and Mental Component Summary (PCS and MCS, respectively) scores. The sample comprised 649 participants (CALD = 347, non-CALD = 302). The analyses included univariate, bivariate, and multivariable linear regression analyses for three outcome variables: PCS, MCS, and CESD-12. CALD carers were comparatively younger and married, and 54% had university-level education (29% in the gfvnon-CALD group). Women were primary carers in both groups (67.4% versus 72.2%). The weekly care hours were higher for non-CALD carers. Both groups had below population-referenced scores for mean PCS and MCS values. For CESD-12, non-CALD respondents had higher scores (17.5 vs. 11.2, p < 0.022). Regression analyses showed significant differences for demographic, carer, and physical health variables across the three outcome variables. Women have a higher domestic workload, which, when combined with high care hours, adversely impacts physical and mental health. The need for improved and culturally aligned care support systems is required.

Love, support and structural holes: Māori whānau carer experiences in collective family care systems

Abstract As the population of Aotearoa New Zealand ages, informal family carers will play an increasingly important role in caring for older adults at home. Multi-generational living arrangements are a growing trend, particularly among Māori communities, where caring for older relatives within the family home is widespread. This article uses in-depth, semi-structured interviews with Māori whānau (extended family members) caring for kaumātua (older family members) at home to explore how carers experienced care coordination in the broader care collective. The findings centred on three interconnected factors that described the collective organisation of care: (1) whānau care as normal; (2) whānau care as collective coordination; and (3) whānau carer knowledge and needs as unseen. The findings show that although whānau care of kaumātua is highly valued, ‘structural holes’ within care systems contribute to challenges in care coordination. Despite extensive whānau support for kaumātua, primary carers often felt that their knowledge, preferences and self-care needs remained unseen and not translatable to those outside the everyday care situation. Rather than assuming an artificial binary difference between ‘collective’ and ‘individually oriented’ care contexts and cultures, analysing the cultural norms surrounding whānau care-giving confirms that collective care system members face similar and different challenges to carers with smaller caring capacities.

Psychological wellbeing among carers of children and adolescents with physical disabilities in North-Eastern Tanzania-a cross-sectional survey study.

Caring for physically disabled children, particularly in contexts where resources are often insufficient or absent, exposes primary carers to significant psychological strain. The lack of structured mechanisms to address this psychological burden poses a considerable threat to the wellbeing of both carers and the children with disabilities under their care. However, research on the psychological wellbeing of carers in Tanzania is scarce. This study aimed to evaluate the psychological wellbeing and symptoms of anxiety and depression, along with associated factors, of carers of children, and adolescents with physical disabilities in the Kilimanjaro region. A cross-sectional survey was conducted from November 2020 to June 2021 in the Kilimanjaro region, involving 212 carers. The Swahili versions of the WHO-5 Wellbeing Index and Hopkins Symptoms Check List-25 were used to assess psychological wellbeing and symptoms of anxiety and depression. Data were analysed using IBM SPSS Statistics V.28. Multivariable linear and binary logistic regression were used to assess the associations. More than four fifths (81%) of the carers were parents, and most of these parents were mothers (92%). Of the 212 carers, more than half (51%) exhibited poor psychological wellbeing, 42% had symptoms of anxiety, and 38% symptoms of depression. Notably, poor psychological wellbeing was significantly associated with symptoms of anxiety and depression. Results of a multivariable regression analysis indicated that extended family support was associated with better psychological wellbeing and lower odds of symptoms of anxiety and depression. A higher estimated monthly income was associated with better psychological wellbeing, and lower odds of symptoms of depression. Access to rehabilitation for the child was associated with improved psychological wellbeing and decreased likelihood of symptoms of anxiety. Many carers of children, and adolescents with physical disabilities in Tanzania are at high risk of having poor psychological wellbeing, and symptoms of anxiety and depression. Support from extended-family networks is crucial in promoting good psychological wellbeing. The government in Tanzania should improve rehabilitation services, especially in disadvantaged rural areas, and integrate mental-health screening for carers in both rehabilitation programmes and primary healthcare.

Quality of life of Retinoblastoma survivors in tertiary care eye hospital in South India.

With the increased survival of retinoblastoma (RB) patients, it is important to evaluate the quality of life (QoL) of RB survivors as well as caregivers to provide comprehensive care to the children and caregivers. This study aims to assess the QoL of survivors of RB, as perceived by parents and the self-report by patients, through a pediatric QoL (PEDs-QoL) questionnaire. The study cohort included 86 RB survivors, 86 age-matched controls, and their primary carers. PedsQL 4.0 generic core scale and structured interview were administered. QoL in physical, social, emotional, and school health was evaluated and correlated with clinical and sociodemographic parameters. The mean age of the RB survivors was 5.7 years with an M:F ratio of 1.1:1. Disease was bilateral in 79% of cases. About 45% (39/86) underwent enucleation, while others received combination therapy (16; 18%), chemotherapy (30; 34%), and radiation (1; 1%). As reported by parents, the QoL of physical health domain of RB survivors was 70.2 SD ± 27.8 and 96.15 ± 13 SD, emotional health was 72.1 ± 27.4 SD and 94.4 ± 12.5 SD, social health was 80.4 ± 24.9 SD and 98.6 ± 6.2 SD; and school health was 71.9 ± 2 6.5 SD and 96.1 ± 12.2 SD. As per the self-report perception, the QoL of physical health was 68.2 ± 27.8 SD and 96.2 ± 13 SD, emotional health was 66.2 ± 28.4 SD and 95.3 ± 12.5 SD, social health was 69.5 ± 24.9 SD and 98.7 ± 6.2 SD, and school health was 63.5 ± 26.5 SD and 95.1 ± 12.2 SD. There was a significant relationship between enucleation and QoL domains, where χ2 = 67.75, degrees of freedom (df) = 36, and P < 0.01. There was a significant association between vision in the better eye (6/18 or better = 8, 6/18-6/60 = 8, 3/60 or worse = 42) and QoL scores (χ2 = 95.36, df = 62, P < 0.01). There was a substantial association between socioeconomic status and QoL domains, where χ2= 88.5, df = 56, P < 0.01. The results of the study showed that the QoL of parents of RB survivors and self-proxy reports were negatively affected in many ways, including physical, social, emotional, and school-related dimensions. Despite the small differences, self-proxy reports indicated a lower QoL than the parents' group. The study findings indicate that there are notable correlations between enucleation and visual acuity less than 6/18, as well as socioeconomic status, with various aspects of QoL domains among individuals who have survived RB.

Cohort profile: Understanding the influence of early life environments and health and social service system contacts over time and across generations through the Western Australian Aboriginal Child Health Survey (WAACHS) Linked Data Study

PurposeDespite the volume of accumulating knowledge from prospective Aboriginal cohort studies, longitudinal data describing developmental trajectories in health and well-being is limited. The linkage of child and carer cohorts from...

Association Between Cancer Screening Patterns and Carer Literacy in Individuals With Cognitive Decline: An Observational Study.

The incidence rates of dementia, mild cognitive impairment, and cancer increase with age, posing challenges to affected individuals and their families. However, there are currently no clear cancer screening guidelines for individuals with cognitive impairment. This study analyzed the impact of carer health literacy on screening behaviors in this population. We conducted a postal follow-up survey, associated with the National Center for Geriatrics and Gerontology-Life STORIES of People with Dementia, that targeted primary carers to assess their reports regarding patient attendance at regular cancer screenings recommended by the Japanese Ministry of Health, Labor and Welfare, over the preceding 2 years. Screening rates were compared between the memory clinic cohort and the national average, and the influence of carer health literacy level on screening was analyzed. Among the 826 total individuals analyzed, the memory clinic cohort exhibited lower breast cancer screening rates, at 11% among female patients aged 65-74 years versus the national average of 32%. Higher health literacy among carers was significantly associated with increased screening. For female patients, carers with high levels of communicative health literacy were more likely to ensure that patients attended screenings for gastric (adjusted odds ratio [AOR], 1.77; 95% confidence interval [CI], 1.03-3.04), colorectal (AOR, 1.70, 95% CI 1.08-2.70), and breast cancers (AOR, 3.08; 95% CI, 1.40-6.76). Among the male patients, high communicative health literacy was associated with increased lung cancer screening attendance (AOR, 1.82; 95% CI, 1.11-2.99). Our research highlights a notable gap in cancer screening attendance between individuals with cognitive impairment and the general population, potentially arising from the intricate nature of screening procedures and the extensive burden on carers. More informed decisions and increased screening rates can be achieved through patient-centric communication strategies that accommodate the cognitive abilities of patients, ensuring the comprehensibility and accessibility of health-related information.

Living With Spasticity During the COVID‐19 Pandemic: A Qualitative Study of Patient, Carer and Physician Experiences

ABSTRACTBackgroundApproximately 4.4 million people in England (8% of the total population) are living with a long‐term neurological condition. Within this group of vulnerable individuals, there will be individuals living with severe spasticity that requires regular outpatient treatment with botulinum toxin injection. The closure of outpatient spasticity services during the pandemic impacted individuals who required spasticity treatment and their carers, as well as the specialist clinicians responsible for service delivery.ObjectivesWe aimed to gain insight into the experiences of individuals living with spasticity, their carers and a clinical spasticity service lead during the pandemic, and to reflect on potential learning for the future.MethodsA qualitative study was designed using semi‐structured interviews conducted by telephone. Participants comprised patients living with a long‐term neurological condition who attended outpatient spasticity clinics before the start of the pandemic in England, primary carers who accompanied patients attending these clinics and a clinical spasticity service lead. Data were audio recorded, transcribed, anonymised and coded. Data analysis utilised the One Sheet of Paper thematic approach to identify themes, which were discussed and analysed by the interdisciplinary research team and two patient and carer participants.ResultsOut of the 11 participants recruited, aged 36–77 years, seven comprised people living with spasticity related to a long‐term neurological condition, three were carers and one was a clinical spasticity service lead. Six participants were male and five were female. Among the participants, four were stroke survivors, two were living with spinal cord injury and one was living with multiple sclerosis. Analysis revealed six major themes: experience of living with spasticity during the pandemic; impact of the pandemic on patient, carer and clinician health; access to and experience of outpatient clinic appointments; coping strategies during the pandemic; system improvements; and learning from the pandemic period.ConclusionThese findings contribute research knowledge to a very limited research knowledge base and suggest that there is scope for improving system and service delivery through the allocation of research funding to senior clinicians working in this specialist area.

Parental non-compliance to childhood safety practices: A cross-sectional study.

Background & objectives To assess the pattern of non-compliance to childhood safety practices among parents of children between one and five yr of age and to determine the reasons behind the same. Methods A descriptive, cross-sectional study was conducted on 120 children between one and five yr of age through a questionnaire-based interview of the primary carer. Poor compliance was defined as compliance to <85 per cent of the recommended practices. Results Of the total 48 injuries, 32 were serious (66.6%). Falls and burns/scalds were the two common types of injuries. Nearly three-fourths (72.5%) of families showed overall poor compliance. Poorest compliance was observed towards four safety practices namely, helmet wearing, restricting number of pillion riders to two on a two-wheeler, seatbelt wearing in a car and avoiding food items with a high risk of choking in children <3 yr. Parental perception of 'unnecessary' and 'lack of knowledge' were the main reasons behind non-compliance. Interpretation & conclusions Low compliance among families occurred with respect to safety on motor vehicles and avoidance of choking hazards. Change of parental perception and improved awareness is necessary for the prevention of unintentional childhood injuries.

Does Childhood Cochlear Implantation Spill Over to Carers' Employment Status?

Carers of children with disabilities, especially primary carers, tend to have poorer labor market outcomes than carers of typically developing children. However, the extant literature has been largely silent on whether interventions for children's disabilities spill over to carers' employment outcomes, if at all. We aimed to fill this gap. We analyzed data from the Longitudinal Outcomes of Children with Hearing Impairment study, which is a unique panel dataset of Australian children who are deaf or hard-of-hearing (DHH). The Longitudinal Outcomes of Children with Hearing Impairment dataset includes information about 449 DHH children. We used 3 waves covering the same children at ages 0 to 3, 5 to 7, and 8 to 10 years during 2005 and 2018. We used a panel random-effects model, the use of which was supported by the Hausman specification test to control for time-invariant individual heterogeneity. We found that primary carers (typically mothers) of DHH children with cochlear implants (CI) were more likely to be employed relative to DHH children without a CI. The positive association was stronger among carers from a lower socioeconomic background. The association between childhood CI and carer employment may potentially be due to relaxed primary carers' time constraints to care for the child, increased self-efficacy, and reduced carer stress, enabling them to engage in other activities, including employment. Further research through large-scale, longitudinal studies is warranted to solidify the findings of this research.

Burden of care in caregivers of patients with schizophrenia in Greater Noida, U.P., India.

Schizophrenia is a serious mental illness that causes major functional impairments, raises the risk of disability, and reduces life expectancy. It affects around 7 in 1000 people b/w the age of 15 and 35 years. Schizophrenia poses a great challenge not only for the patient but also for the people and the society around the patient. Family members who serve as informal primary carers may suffer personal expenses as a result of providing care for those who have major mental illnesses. One outcome that is regularly studied is the caregiver burden or the challenges encountered in providing care. Burden of care in caregivers of patients with schizophrenia in Greater Noida, U.P, India. This cross-sectional study was carried out at the School of medical sciences and Research, Sharda University. We enrolled 100 caregivers and it is assessed through the burden assessment scale. Caregivers ranged in age from 20 to 85, with a mean age of 47 (SD=14.1). The male-to-female ratio was 1.7, with 63 men and 37 women present. The majority of the caregivers were parents (n=54), siblings (n=9), spouses (n=10), or their children (n=5). On the burden assessment scale, the severity of the burden was found on the basis of mild, moderate, severe, and very severe. It is important to understand the mental health of caregivers in order to develop an appropriate intervention to deal with their mental health problems. Therefore, this study highlighted the need for psychological interventions not only for the patients but also for caregivers.

Respiratory diphtheria in the time of Omicron.

Diphtheria is a potentially fatal bacterial infection caused by toxin-producing strains of corynebacteria, most often Corynebacterium diphtheriae and less commonly Corynebacterium ulcerans. Incidence of the disease has fallen significantly since the introduction of vaccination programs; it is now rare in countries with high vaccination coverage such as Australia. This article presents the most recent respiratory cases of diphtheria in two children in New South Wales-the first locally acquired childhood cases in Australia in 30 years-and discusses potential contributing factors. These encompass the lack of clinical awareness and the delays in laboratory diagnosis in regional laboratories. The cases also highlight the problem of vaccine hesitancy and the role that primary carers play in addressing these anxieties. While clinical management of the cases progressed well, factors in the public health responses were complicated by access to appropriate care and by delays in antibiotic sensitivity profiles. The public health response to these cases raises important considerations for clinicians and public health practitioners, including preparedness for rare and re-emerging diseases, the need for culturally safe environments and the importance of addressing vaccine hesitancy. Preparedness requires consideration of the capacity of regional health systems with fewer resources and of how public health departments can support response to multiple crises. Preparedness also relies on access to necessary diagnostic laboratory resources, on up-to-date guidelines, and on maintaining awareness among clinicians for these rare infections.

Socio-demographic factors and mental health trajectories in Australian children and primary carers: Implications for policy and intervention using latent class analysis.

Children's mental health status (MHS) is frequently influenced by their primary carers (PCs), underscoring the significance of monitoring disparities longitudinally. This research investigated the association between socio-demographic clusters and mental health trajectories among children and their PCs over time. Data from waves 6-9c2 of the Longitudinal Study of Australian Children (LSAC) were analyzed using Latent Class Analysis (LCA) to identify four socio-demographic classes among children aged 10-11 years at wave 6. Multinomial logistic regression and predictive marginal analysis explored associations between classes and mental health outcomes. PCs in Class 4 (disadvantaged and separated families with indigenous children) exhibited higher odds of borderline and abnormal MHS compared to Class 1 (prosperous and stable working families) across all waves. However, while MHS of PCs' impacted children consistently, the association with socio-demographic classes was significant only in wave 6. Class 4 children had elevated risks of mental illness compared to Class 1, while Class 3, characterized by educated working mothers, had lower risks. Reducing mental health risks entails addressing socio-economic disparities, supporting stable family structures, and offering tailored interventions like counseling and co-parenting support. Longitudinal monitoring and culturally sensitive approaches are crucial for promoting mental well-being across diverse groups.

Exploring Musculoskeletal Injuries Among Informal and Formal Carers of People With Dementia.

Carers of people with dementia manually handle the care recipients (eg, repetitive lifting, transferring, and pulling) as part of the care service, increasing the musculoskeletal injury risk to themselves. We aimed to determine the prevalence of musculoskeletal injuries among informal and formal carers of people with dementia and the perceived associated risk factors. Primary carers of people with dementia (26 males and 141 females) from Dementia Care Centers and Home Care programs completed a questionnaire providing information about (a) the carers' and their care recipients' characteristics, (b) musculoskeletal symptoms (via the Nordic Musculoskeletal Questionnaire) and related aspects, and (c) the caregiving activities exposing the carers to risk of musculoskeletal injury. Our results showed that 69.7% of informal and 86.7% of formal carers reported having more than 1 musculoskeletal injury, while 63.1% and 61.5%, respectively, reported having a musculoskeletal injury in the last year. Lower back had the highest injury prevalence (>10% for both groups). The 2 carer groups were not different in any of the variables. Our results reinforce calls for education and support of carers, regardless of their formal status, to enable injury-free and prolonged service provision.

Positive family connections for families of children with a developmental disability: Cluster randomized controlled trial.

Positive Family Connections is a coproduced, positively oriented, family-systems program for families of children with a developmental disability aged 8-13 years. The study was a feasibility cluster randomized-controlled trial which was registered prospectively (International Standard Randomised Controlled Trial Number 14809884). Families (clusters) were randomized 1:1 to take part in Positive Family Connections immediately or to a waitlist condition and were followed up 4 months and 9 months after randomization. Feasibility outcomes included participant and facilitator recruitment rates, retention, intervention adherence, and fidelity. The proposed primary outcome measure was the family APGAR, a measure of family functioning. Quantitative data were analyzed using multilevel modeling. Sixty families (60 primary parental carers and 13 second carers) were randomized. 73.33% of primary parental carers and 71.43% of second carers in the intervention group attended ≥ 4 intervention sessions, and fidelity of delivery was high (M = 94.02% intervention components delivered). Retention for the proposed primary outcome was 97.26% at 4-month follow-up and 98.63% at 9-month follow-up. Intervention condition was not associated with family APGAR scores at 9-month follow-up (estimate = 0.06, 95% CI [-0.49, 0.61], p = .86, Hedges' g = 0.03, 95% CI [-0.43, 0.49]). However, meaningful improvements were observed for other secondary outcomes related to parental well-being and family relationships. A definitive randomized-controlled trial of Positive Family Connections is feasible. Preliminary evaluation of outcomes shows that Positive Family Connections may be beneficial for parental psychological well-being and family relationships. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Impact of a comprehensive rehabilitation palliative care program on the quality of life of patients with terminal cancer and their informal caregivers: a quasi-experimental study

BackgroundPalliative care schemes, which include pain management, symptom control, psychosocial support and rehabilitation, aim to boost patients’ quality of life, ease the burden and anxiety of informal caregivers, and ultimately provide a comprehensive approach to enhance well-being during this challenging and sensitive period. This study aims to evaluate the impact of a comprehensive rehabilitation palliative care program on the quality of life of patients with terminal cancer and their informal caregivers.MethodsThis quasi-experimental study, conducted from August 2023 to January 2024 at outpatient clinics affiliated with the Oncology Center at Mansoura University, Egypt, focused on cancer patients and their caregivers in the palliative care department. Employing pre- and post-test phases, data were gathered using a questionnaire, EORTC QLQ C30, Hospital Anxiety and Depression Scale, Short Form Health Survey, Caregiver Burden Inventory, and Beck Anxiety Inventory. The investigation evaluated a 16-week rehabilitation program comprising exercise, psychoeducation, individual counselling, and spiritual support. Exercises, led by a physiotherapist, targeted fatigue and stress through tailored aerobic and resistance training. Psychoeducation sessions aimed to bolster coping abilities, covering fatigue management and nutrition. Trained counsellors addressed spiritual and existential concerns. Personal advisory sessions were available for individual support. Caregivers received education on rehabilitation and palliative care protocols, ensuring comprehensive patient care.ResultsThe mean age for cancer patients was 65.79 ± 13.85. In contrast, the mean age for primary carers was 42.05 ± 11.15. The QOL for cancer patients during the pre-test phase was 77.8 ± 7.16 and rose to 87.34 ± 14.56 during the post-test phase. Additionally, the total anxiety level of patients before the rehabilitation palliative care program was conducted was 15.45 ± 3.05 compared to 6.12 ± 3.21 after the post test phase. Furthermore, the total depression levels of the patients during the pre-test phase were 20.89 ± 9.21. However, after implementing the rehabilitation palliative care program, it decreased to 15.5 ± 6.86. In regards to the total quality of life of informal caregivers, it was measured at 67.28 ± 32.09 before conducting the program. Nevertheless, it increased to 25.95 ± 40.29 after conducting it. Additionally, the total Caregiver Burden Inventory before implementing the program was 37.45 ± 25.7, and it decreased to 29.36 ± 16.4 after conducting it. Additionally, the total score on the Beck Anxiety Inventory decreased from 45.7 ± 4.3 during the initial testing phase to 17.35 ± 23.67.ConclusionThe program for rehabilitation palliative care successfully achieved its goals by enhancing the overall quality of life for cancer patients and their caregivers. Additionally, it reduced the anxiety and depression levels among the patients, as well as the anxiety and caregiver burden among the caregivers. Continue research into the effectiveness of rehabilitation palliative care programs to identify best practices, improve existing programs, and expand access to these services.

Effect of Psychoeducation on Reducing Burden Among Primary Caregivers of People with Schizophrenia

Schizophrenia is a serious psychological illness that needs long-term treatment. Family members, especially those who care for a patient at home, experience the burden of providing long-term care. Psychoeducational intervention may enhance the caregiver’s outcomes. The major goal of the study was to explore the effect of psychoeducation on reducing the burden among primary carers of people with schizophrenia. In this study, thirty-two participants (32 caregivers) were purposefully selected based on the National Institute of Mental Health (NIMH). A personal information form and the Bangla version of the Zarit Burden Interview scale were administered. Total participants were divided by simple randomization into two groups (i.e., experimental and control groups). Following the baseline evaluation by questionnaire, the experimental group of 16 caregivers received two sessions of psychoeducation, but the control group of the same number of caregivers did not. The effectiveness of psychoeducation was evaluated using a pretest-posttest control group design. Findings suggested that psychoeducation decreased the level of burden, and after the intervention, the mean score of the experimental group was lower than that of the control group. These findings found that the psychoeducation intervention had a positive outcome in reducing the burden on caregivers of patients who deal with schizophrenia. Jagannath University Journal of Life and Earth Sciences, 9(1): 81–94, 2023 (June)