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The complexity of palliative care means that the emotional distress and burden that primary family caregivers suffer under can be particularly high. The objective of this study was to determine the level of burden endured by these primary family caregivers and to identify the variables that predict it in the caregiving relatives of people who requi...
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Context 1
... "backward" multiple linear regression model showed that depression and anxiety were the main predictive variables. Post-traumatic growth remained in the model, but had less predictive power and no statistical significance, while fatigue was excluded from the model (see Table 5). R 2 in the model was 52.4, ...Similar publications
Previous studies have documented cognitive impairments, psychological stress, and depressive symptoms in family caregivers of people with dementia (PWD), which could be attributed to their sleep disturbances. Notwithstanding the increasing recognition of poor sleep quality and sleep disturbances in family caregivers of PWD, their association has no...
Citations
... In the work by Götze et al. [4] almost a third of caregivers have a high level of anxiety at the beginning of home care. Other studies report a prevalence of anxiety of 40 to 48% [23,24]. However, the existing literature does not take into account sufficiently the impact of pre-existing trait anxiety on anxiety in the current palliative care situation. ...
Introduction
Caring for a family member with a palliative diagnosis at home is physically and mentally stressful. This prospective study explores the emotional and physical burdens experienced by family caregivers in end-of-life palliative care settings, particularly focusing on those caregivers with high levels of pre-existing trait anxiety. The following hypotheses were examined: 1.) Family caregivers with high levels of trait anxiety suffer from high levels of anxiety, stress, burnout symptoms, insomnia, daytime sleepiness, physical complaints, health-related anxiety and resentments. 2.) Caregivers with a high level of trait anxiety are less resilient and receive less social support. They are more likely to use inappropriate strategies in the context of emotional regulation and work-related behavior. 3.) The support provided by the mobile palliative care team reduces stress and improves the quality of sleep of the caregiving relatives.
Methods
Forty-seven caregivers participated, with assessments conducted at two time points: before the mobile palliative care team’s intervention and six weeks later. Data collection included measures such as the State-Trait Anxiety Inventory (STAI), Whiteley Index (WI), Perceived Stress Scale (PSS-10), Maslach Burnout Inventory (MBI-HSS), Insomnia Severity Index (ISI), Epworth Sleepiness Scale (ESS), Giessen Complaints Questionnaire, Berner Bitterness Inventory (BVI), Brief Resilience Coping Scale, FEEL-E for emotional regulation, AVEM, and the MOS Social Support Survey.
Results
High levels of trait anxiety among caregivers were significantly associated with increased anxiety, stress, emotional exhaustion, depersonalization, insomnia, and feelings of resentment. Notably, maladaptive emotional regulation strategies were also prevalent. Intervention by the mobile palliative care team significantly reduced stress and insomnia, showing benefits across all levels of trait anxiety.
Conclusion
Family caregivers with high trait anxiety face significant challenges in end-of-life palliative care settings, indicating a crucial need for early identification and comprehensive biopsychosocial support to mitigate adverse emotional and physical health outcomes.
... The SF-12 is a simplified version of the Health Survey (SF-36) developed by the Boston Medical Center in the United States. 27 It is used to assess an individual's physical and mental health, consisting of a total of 12 items that cover both the physical health aspect and the mental health aspect, across 2 dimensions. Scores for each dimension need to be converted to standard scores, with scores ranging from 0 to 100. ...
Objective
Patients with end-stage renal disease (ESRD) are at an increased risk for emotional issues, with depression being the most prevalent psychological concern, significantly impacting their quality of life. This study aimed to explore the mediating effect of psychological resilience on the relationship between depression and quality of life in maintenance hemodialysis (MHD) patients.
Methods
This cross-sectional study aimed to explore the mediating effect of psychological resilience on the relationship between depression and quality of life in MHD patients in Baoding, China. Conducted from January 2024 to July 2024, the study involved a questionnaire survey of 215 MHD patients across five hospitals in Baoding. Data were collected using General information questionnaire, Hemodialysis Patient Depression Scale, Psychological Resilience Scale, and Quality of Life Scale, and structural equation modeling using AMOS 21.0 was employed to analyze the mediating effect.
Results
The scores for depression, psychological resilience, and quality of life in these MHD patients were 9.37±4.6, 30.58±6.1, and 59.48±9.3, respectively. Depression had a negative correlation with quality of life, while psychological resilience had a positive correlation with quality of life (with correlation coefficients of −0.453 and 0.578, respectively, all P<0.01). Psychological resilience played a mediating role in the relationship between depression and quality of life (β=−0.13, P<0.05), with the mediating effect analysis showing a significant indirect effect of depression on quality of life. The direct and indirect effects of depression on quality of life were −0.34 and −0.13, respectively, with a total effect of −0.47. The mediating effect accounted for 27.7% of the total effect. Interpretation: PHQ-9 scores range from 0 to 27, with higher scores indicating more severe depressive symptoms. CD-RISC scores range from 0 to 100, with higher scores reflecting greater psychological resilience. SF-12 scores range from 0 to 100, with higher scores indicating a better quality of life.
Conclusion
Depression, psychological resilience, and quality of life in MHD patients were at a moderately low level. Depression in MHD patients can indirectly affect their quality of life through psychological resilience, suggesting that healthcare professionals should take measures to reduce depression levels, enhance psychological resilience, and ultimately improve the quality of life for these patients. Psychological resilience was identified as a significant mediator in this relationship, highlighting its potential as a target for interventions aimed at improving the mental well-being and quality of life of MHD patients. These results underscore the importance of integrating psychological support into the care of MHD patients.
... For example, previous studies have reported a higher incidence of metabolic syndrome [7], increased risk of stroke [8], and a higher likelihood of cardiovascular diseases [9] among compound caregivers. Compound caregivers are also more prone to anxiety, overload, fatigue, and high levels of psychological stress [10,11]. This makes self-care for preventing or managing the onset and progression of diseases and symptoms particularly critical for family caregivers [12]. ...
... The following search terms were used: "family", "caregiver", and "self-care" and the MeSH terms "caregiver, family", and "self-care". These searches yielded nine articles [10,11,[15][16][17][18][24][25][26][27]. The inclusion of an article was based on two criteria: (1) the article was related to the research experiences of family caregivers who care for multiple individuals requiring care, and (2) the article was associated with existing self-care scales. ...
Background: Japan and other nations are experiencing rising demands for care, owing to declining birth rates and aging populations. This particularly affects compound caregivers, people who provide informal care for multiple individuals. Compound caregivers face unique challenges and higher risks of physical and mental health problems. However, existing self-care scales do not cover their needs. This cross-sectional study aimed to develop and validate the Self-Care Scale for Compound Caregivers (SCSCC) to assess specific self-care practices and promote targeted support. Methods: A cross-sectional study was conducted through an online survey of 400 compound caregivers. Reliability was assessed via item analysis, exploratory and confirmatory factor analyses, and Cronbach’s alpha. Criterion validity was evaluated using a self-rated health scale. Results: Overall, 400 compound caregivers participated in the study. After item analysis, we excluded nine items, leaving eight for factor analysis. Exploratory factor analysis revealed a single-factor structure explaining 51.5% of the variance. Confirmatory factor analysis showed a good model fit after modifications (goodness of fit index = 0.964, adjusted goodness of fit index = 0.932, comparative fit index = 0.980, root mean square error of approximation = 0.054). The final version of the SCSCC demonstrated strong internal consistency (Cronbach’s alpha = 0.859) and was positively correlated with self-rated health (r = 0.387, p < 0.001). Conclusions: The SCSCC is a reliable tool for assessing self-care in compound caregivers, supporting health promotion, interventions, and policies to improve their health within the community care system.
... Alptekin et al.18 Tsai et al.19 Schmaderer et al.20 Kalampokini et al. ...
... We know that highly dependent patients need help with all basic activities of daily living; therefore, the caregiver will not be able to leave the patient alone, meaning that they have to give up maintaining their self-care. This also occurs in caregivers of patients with psychiatric pathologies [54] and dementias such as Alzheimer's [55] and cancer [56]. In conclusion, it is essential for caregivers to take time for self-care and respite, especially for caregivers of highly dependent patients who are growing in population due to the increase in life expectancy. ...
Background: Caring for dependent people is an intense task that leads family caregivers to suffer physical or mental pathologies. Resilience is a protective factor that makes an individual more resistant to adverse events. Some characteristics of the caregiver or the care provided predispose the caregiver to be less resilient. Knowing these characteristics will allow us to detect vulnerable caregivers. Aim: The aim of this study was to explore the factors associated with caregiver resilience and establish a predictive model, including the relationship between preparedness, burden, resilience, and anxiety. Materials and Methods: The study design was descriptive, observational, and cross-sectional, with purposive sampling. The sample included 172 family caregivers of care-dependent patients in Spain. Questionnaires were administered to assess caregiver resilience, anxiety, burden, and the preparedness of care-dependent patients. Correlation, univariate, and multiple linear regression analyses were performed to identify the factors associated with resilience. Results: We found that there is a correlation between resilience, preparation, and burden. Factors related to resilience include age, the caregiver's health status, kinship, childcare, and state aid granted. Caregiver preparedness is the factor that most predicts caregiver resilience in our model. Caregivers with high levels of resilience also demonstrated high levels of preparedness and experienced less burden than those with low levels of resilience. Conclusions: These findings emphasize the relevance of improving the preparation of family caregivers to increase their resilience and, at the same time, the quality of care provided.
... However, caregiving tasks can cause psychological discomfort and have long-term detrimental effects on the caregivers' health. 6 Informal caregivers can be friends, neighbours, partners or family members, and provide a wide range of support to an adult with a chronic illness or an older person with whom they have a close personal relationship with. These caregivers may live either with or apart from the care recipient and can be the primary or the secondary caregiver. ...
Objective
During the period of caregiving, informal caregivers of incurably ill patients experience caregiving burden that is often overlooked since the focus is on the suffering of the care receiver. In Bangladesh, informal caregivers often cannot express their suffering as they are culturally obliged to take responsibility for sick family members. This cross-sectional study was conducted among 156 informal caregivers of patients with advanced cancer attending the Department of Palliative Medicine at Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh.
Methods
The sample was chosen consecutively based on the inclusion and exclusion criteria. Face-to-face interviews were conducted using a well-designed questionnaire. A previously translated and validated Bangla version of the Zarit Burden Interview (ZBI) was used to assess the burden of the informal caregivers.
Results
The mean ZBI score of the informal caregivers was 28±11. The study found that caregiver burden was significantly associated with the relationship between the informal caregiver and the patient, as well as the caregiver’s awareness of the patient’s prognosis.
Conclusion
Currently, no facilities for informal caregivers are available in Bangladesh. As extended members of the patient’s care team, the burden experienced by the caregivers needs to be given more attention and should be taken into account in healthcare.
... This scale is widely used in the assessment of the subjective caregiver burden (30). It has been used in different clinical contexts, such as dementia, severe mental illness, cancer, palliative care or intellectual disabilities (36)(37)(38). The total score is obtained by summing the individual scores of the 22 items. ...
... The palliative care process significantly affects the family's daily, social, cultural and economic life, especially marriage and family life [14,19,22,[36][37][38][39]. In parallel with the literature, it is noteworthy that the findings, especially relationships between spouses, and the roles and functions of the family have been reshaped throughout the palliative care process. ...
Objective: This study was conducted to examine in detail the experiences regarding the care process of family members providing pediatric palliative care. Method: A qualitative research method was adopted for the study. The reason for choosing this method was to understand the phenomenon of the reflections of the experiences of family members who care for children (0-18 years old) in the palliative care process in family life. Data were collected using a semi-structured interview form from the primary caregivers of 10 pediatric patients hospitalized in the pediatric palliative care unit of a children's hospital in Ankara. The data obtained was subjected to descriptive analysis through the "Maxqda 2020 Analytics Pro" analysis software. Results: Themes created regarding the reflections of the palliative care process on family life are examined and grouped under four headings. These are: "Perception of Palliative Care", "Difficulties in the Palliative Care Process", "Coping Mechanisms of Families" and "Effects of the Palliative Care Process on Family Life". Regarding their socio-demographic characteristics, the caregivers' education levels were low and their income levels were moderate. In terms of the characteristics of the caregiving process, the families were primarily aware of what palliative care is, spent much time during the day for care, and experienced various difficulties (psychological, social, economic) with the care process, causing changes in family ties. Conclusion: Multidisciplinary teamwork is needed to manage the many difficulties that the palliative care process brings to the lives of caregivers and to increase the coping capacity of caregivers and their quality of life by taking into account all psychosocial and economic contexts of their lives.
... The Zarit Burden Interview (ZBI) [15]: This scale is used to evaluate the burden of caregivers. It has a total score of 0-88 points, and a higher score indicates heavier burden. ...
Background and objective
Alzheimer’s disease is a progressive neurodegenerative disorder characterized by cognitive decline, behavioral changes, and functional impairments. Apathy, a common symptom in Alzheimer’s disease, refers to a lack of motivation, interest, and emotional responsiveness. It can significantly impact patients’ quality of life and increase caregiver burden. This study aimed to determine the effects of a diversified rehabilitation program combined with donepezil on apathy, cognitive function, and family caregiver burden of Alzheimer’s disease patients.
Methods
A total of 105 Alzheimer’s disease patients treated at our hospital between January 2020 and January 2023 were selected and analyzed retrospectively. They were assigned to the control group (n = 50) or the observation group (n = 55). The two groups did not differ in terms of general data such as age and sex. All patients were treated with donepezil orally. The control group was given routine nursing, whereas the observation group was given a diversified rehabilitation program intervention, including cognitive training and emotional support. The Hasegawa’s dementia scale, mini-mental state examination, and Montreal cognitive assessment scale were adopted to evaluate the cognitive function of the two groups before and after treatment. A caregiver burden scale, the Zarit Burden Interview (ZBI) and the Apathy Evaluation Scale Informant version (AES-I) were used to evaluate the caregiver burden and apathy of the two groups.
Results
A significantly higher overall response rate to treatment was found in the observation group (94.55%) than in the control group (80.00%) (p = 0.024). After treatment, scores on the Hasegawa’s dementia scale, mini-mental state examination, and Montreal cognitive assessment scale of the two groups increased to varying degrees, with greater increases in the observation group than in the control group (p < 0.05). The ZBI and AES-I scores of the two groups decreased to different degrees after treatment, with greater decreases in the observation group than in the control group (p < 0.05).
Conclusion
A diversified rehabilitation program combined with donepezil can substantially alleviate the apathy of Alzheimer’s disease patients, improve their cognitive function, and reduce the burden on their families.
... Even after losing consciousness, they remain subject to a variety of life-sustaining medical equipment and continue to receive traumatic treatment until the last moment of life, which makes the dying process painful [17,18]. At the same time, the family members also experience substantial burdens, including poor quality of life, heavy burdens of care, and psychological impact [19,20]. With the development of society, the requirement for the quality of life and the understanding of death continues to improve. ...
... Higher sum scores indicate heavier psychological burden from patients and diseases. HAMA score was divided into no anxiety (≤ 7), possible anxiety (7)(8)(9)(10)(11)(12)(13)(14), definitely anxiety (14)(15)(16)(17)(18)(19)(20)(21), obvious anxiety (21)(22)(23)(24)(25)(26)(27)(28)(29), and severe anxiety levels (≥ 29) [40,41]. Additionally, in DT, a cut-off value of ≥ 5 is considered clinically relevant distress with a need of professional psychological support [42,43]. ...
Background
Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly.
Aims
To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care.
Methods
This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions.
Results
In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family’s burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable.
Conclusion
The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.
