This methodological study aimed to establish the validity and reliability of the Turkish version of the Information Concealment Scale for Caregivers of palliative care patients.

The study was conducted between January and June 2023 with 155 caregivers who cared for patients hospitalized in the palliative care units of 2 hospitals in Istanbul, Turkey. Exploratory factor analysis and confirmatory factor analysis were performed for validity analysis. Cronbach’s α, item-total correlation, intraclass correlation coefficient (ICC), and Pearson correlation analysis were used for reliability analysis.

Of the participants, 54.2% were female and 69% were married. The mean age was 37.96 ± 12.25 years. According to the exploratory factor analysis, the scale consisted of 3 subscales and 15 items. The first subscale of the scale was expressed as “misrepresentation of the disease’; the second subscale was defined as “concealment of information”; the third subscale was defined as “misrepresentation of the real situation.” As a result of the modifications made in confirmatory factor analysis, the goodness-of-fit values were as follows: CMIN/DF(X2/Sd) = 175.16/815 = 2.16; GFI = 0.88; CFI = 0.91; RMSEA = 0.079; RMR = .070; NFI = 0.90. The Cronbach’s α values of the subscale were between 0.79 and 0.87. ICC values were between 0.90 and 0.95 at a confidence interval of 95%. A positive correlation was determined between the subscales.

It was determined that the Turkish version of the Information Concealment Scale was a valid and reliable tool for caregivers.

To explore the differences in social norms around parents’ food provision in different provision contexts and by demographics.

Qualitative study using story completion methodology via an online survey in September 2021. Adults 18+ with or without children were randomised to one of three story stems focusing on food provision in different contexts; food provision at home (non-visitor), with visitors present and with the involvement of sport. Stories were coded and themed using thematic analysis. A content analysis was performed to determine count and frequency of codes in stories by participant demographics and story assumptions.

Australia.

Adults (n 196).

Nine themes were identified from the data resulting in four social norms around providing healthy foods and justifying non-adherence to healthy eating guidelines, evolution of family life and mealtime values, the presence of others influencing how we engage with food provision and unhealthy foods used as incentives/rewards in sport. Following content analysis, no differences of themes or norms by participant demographics or story assumptions were found.

We identified pervasive social norms around family food provision and further identified how contextual factors resulted in variations or distinct norms. This highlights the impact context may have on the social norms parents face when providing food to their children and the opportunities and risks of leveraging these social norms to influence food choice in these contexts. Public health interventions and practitioners should understand the influence of context and social environments when promoting behaviour change and providing individualised advice. Future research could explore parents’ experiences of these norms and to what extent they impact food choice.

Emphasizing the pivotal role of caregivers in the cancer care continuum, a program designed to educate caregivers of cancer patients undergoing chemotherapy underscores their significance. The palliative care education initiative strives to cultivate a compassionate and effective care environment, benefiting both patients and caregivers. By imparting education, fostering positive attitudes, offering support, encouraging appropriate behaviors, and providing essential resources, the program aims to enhance the overall caregiving experience and contribute to the well-being of those navigating the challenges of cancer treatment.

To evaluate the effectiveness of a palliative care education program for caregivers of cancer patients receiving chemotherapy.

The research employed a purposive sample comprising 155 caregivers who were actively present with their cancer patients throughout the pre- and post-test phases within a quasi-experimental research design. The study took place at the outpatient oncology center of Al-Shifa Medical Complex in Port Said City, Egypt. To gather comprehensive data, 4 instruments were utilized: a demographic questionnaire, a nurse knowledge questionnaire, a scale measuring attitudes toward palliative care, and an assessment of reported practices in palliative care. This methodological approach allowed for a thorough exploration of caregiver perspectives, knowledge, attitudes, and practices within the context of a palliative care education program.

Before the palliative care education program, only 1.3% of caregivers had a good overall level of knowledge about cancer and palliative care; this increased to 40.6% after the program. Similarly, before the palliative care education program, 32.9% of caregivers had a positive overall attitude, which increased to 72.3% after the program. Similarly, 27.1% of caregivers had an overall appropriate palliative care practice during the pre-test phase, which increased to 93.5% after the palliative care education program.

The palliative care education program significantly improved caregivers’ knowledge, attitudes, and practice scores. It is strongly recommended that caregivers of cancer patients receive continuing education in palliative care. In addition, it is crucial to conduct further research with a larger sample size in different situations in Egypt.

This study aimed to analyze the different factors that intervene in the task of caring for relatives of people with Alzheimer’s and other dementias. A first objective focused on assessing the relation between burden and anticipatory grief, considering the possibility of social support and the risk of psychopathology. A second objective aimed to examine whether caregiver burden modulates the relationships between anticipatory grief and psychopathology. A cross-sectional design was employed.

The sample consists of 129 participants who care for a family member with Alzheimer’s and other dementias. A protocol based on a battery of tests has been applied and a mediation analysis was carried out.

The results show a positive relationship between burden and anticipatory grief. Social support could have an indirect relationship with anticipatory grief, based on its effect on the level of psychopathology and caregiver burden. Finally, a modulation model reflects that the relationship between anticipatory grief and psychopathology is strong, the latter having a greater effect as a result variable than as a risk variable. However, it seems that the relationship between grief and psychopathology is better explained directly than not through the modulating effect of the caregiver burden.

The results obtained encourage us to think that an approach focused on intervening in the anticipatory grief may be an opportunity to reduce or buffer other caregiving outcomes, especially those related to the perception of caregiver burden and psychopathology.

Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient–caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers.

Patients with advanced cancer and their caregivers (n = 22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP.

TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives.

TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.

Family members of people with mental illness (MI) may experience a host of psychological adversities such as increased stress, burden, and reduced wellbeing. However, relatively little is known about siblings. This study aimed to characterise the experience of distress (viz. depressive and anxiety symptoms), burden, and wellbeing in siblings of people with MI.

Studies reporting on quantitative measures of depression, anxiety, burden, or wellbeing in siblings; and/or qualitative findings on siblings’ experience were eligible. The literature search was conducted up until 20th October 2022.

Sixty-two studies comprising data from 3744 siblings were included. The pooled mean percentage of depressive symptoms fell in the mild range at 15.71 (k = 28, N = 2187, 95% CI 12.99–18.43) and anxiety symptoms fell in the minimal range at 22.45 (k = 16, N = 1122, 95% CI 17.09–27.80). Moderator analyses indicate that siblings of people with a schizophrenia spectrum disorder experience greater depressive symptoms than siblings of people with other types of MI (β = −16.38, p < 0.001). Qualitative findings suggest that individuals may be particularly vulnerable during their siblings’ illness onset and times of relapse. Limited communication, confusion about MI, and the need to compensate may contribute to siblings’ distress and/or burden. Siblings’ experience of wellbeing and caregiving were closely related.

This review highlights the complex psychological experience of siblings and the need for greater research and clinical support for this important yet often overlooked cohort.

Chaplains provide spiritual care in a variety of settings and are an important part of palliative and supportive care teams. This study aims to describe chaplain interactions from the perspective of the recipients of care.

The study draws on data from a nationally representative survey conducted by the Gallup Organization in March 2022.

Two main groups of recipients were identified: primary recipients and visitors/caregivers. Current typologies of chaplain activities focus on primary recipients of care, but a similar proportion of chaplain interactions takes place with visitors/caregivers. Bivariate analysis was used to compare the experiences of the chaplains’ primary recipients of care to other recipients of care and the experiences of visitors/caregivers to other recipients of care. Primary recipients of care were significantly more likely to have religious interactions with the chaplain and to experience the interactions as valuable and helpful.

This study is the first to show the groups of people – primary recipients and visitors/caregivers – who receive care from chaplains. It demonstrates how care recipients experience care differently from chaplains based on their position, which has important implications for spiritual care practice.

This study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping.

Three cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019–2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with ≥18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping.

The 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001).

Caregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver’s health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden.

Research and clinical expertise have emphasized the mental health needs of parents and caregivers of medically complex children. Evidence-based interventions are available for adult mental health, including those designed specifically for caregivers caring for children with a variety of health-care needs. This paper describes practical and legal considerations of 3 possible pathways for psychologists to address the needs of caregivers within pediatric hospital settings.

Literature regarding the mental health needs of caregivers of children with medical conditions, evidence-based interventions, and pediatric subspecialty psychosocial guidelines was reviewed. Relevant legal and ethical obligations for psychologists were also summarized.

The mental health needs of caregivers of medically complex children are often high, yet programmatic, institutional, legal, and ethical barriers can limit access to appropriate care.

Integration of screening and treatment of caregivers’ mental health within the pediatric hospital setting is one pathway to addressing caregivers’ needs. The development of programs for caregiver mental health screening and treatment within pediatric hospital settings will enhance the well-being of children and families and reduce legal and ethical risks for pediatric psychologists. Consultation with institutional compliance, legal/risk, and medical records departments and the creation of electronic medical records for the caregiver may be useful and practical opportunities for integration.

To determine sociodemographics and caregiver burdens associated with overnight hospitalization, hospice utilization, and hospitalization frequency among persons with dementia (PWD).

Cross-sectional analysis of PWD (n = 899) of the National Health and Aging Trends Study linked to the National Study of Caregiving. Logistic and proportional odds regression determined the effects of caregiver burdens on overnight hospitalization, hospice use, and hospitalization frequency. Differences between PWD alive not-alive groups were compared on overnight hospitalization and frequency.

Alive PWD (n = 804) were 2.36 times more likely to have an overnight hospital stay (p = 0.004) and 1.96 times more likely to have multiple hospitalizations when caregivers found it physically difficult to provide care (p = 0.011). Decedents aged 65–74 (n = 95) were 4.55 times more likely to experience overnight hospitalizations than 85+, hospitalizations were more frequent (odds ratio [OR] = 4.84), and there was a significant difference between PWD alive/not alive groups (p = 0.035). Decedents were 5.60 times more likely to experience an overnight hospitalization when their caregivers had financial difficulty, hospitalizations were more frequent when caregivers had too much to handle (OR = 8.44) and/or no time for themselves (OR = 10.67). When caregivers had no time for themselves, a significant difference between alive/not alive groups (p = 0.018) was detected in hospitalization frequency. PWD whose caregivers had emotional difficulty helping were 5.89 times more likely to utilize hospice than caregivers who did not report emotional difficulty.

Care transitions among PWD at the end of life are impacted by the circumstances and experiences of their caregivers. Subjective caregiver burdens represent potentially modifiable risks for undesired care transitions and opportunities for promoting hospice use. Future work is warranted to identify and address these issues as they occur.

Pediatric epilepsy is a debilitating disease that impacts not only children with epilpsy but also persons arround them. It is often considered as a source of anxiety for family caregivers.

Assess the level of anxiety in caregivers of children with epilepsy and to identify factors related to it.

We conducted a cross-sectional, descriptive and analytical study between July and October 2020. It included caregivers of children with epilepsy hospitalized in the pediatric neurology department of Sfax. We used the STAI-Y scale to assess the level of state anxiety (STAI-AE).

Forty four womens participated in our study. Low socio-economic level was found in 31.8% of cases. The average age of children was 4.9 years. The mean duration of epilepsy was 2.2 years. It was comorbid with an autism spectrum disorder or an intellectual disability in 15.9% of cases. In 70.5% of the cases, the children were dependent on their caregivers in their daily lives. The level of anxiety was moderate in 27.3% and high to very high in 13.6% of them. A higher state-anxiety score was correlated with a longer duration of epilepsy (p=0.033), a lower familial socioeconomic level (p=0.013) and a higher number of children in family (p=0.048).

Pediatric epilepsy is associated with significant level of anxiety in family caregivers. This anxiety increases with the duration of the disease and with the presence of socioeconomic and family difficulties. Thus, psychosocial support for caregivers should be integrated into a global approach of the disease.

No significant relationships.

Caregivers of patients with primary brain tumor (PBT) describe feeling preoccupied with the inevitability of their loved one's death. However, there are currently no validated instruments to assess death anxiety in caregivers. This study sought to examine (1) the psychometric properties of the Death and Dying Distress Scale (DADDS), adapted for caregivers (DADDS-CG), and (2) the prevalence and correlates of death anxiety in caregivers of patients with PBT.

Caregivers (N = 67) of patients with PBT completed the DADDS-CG, Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder (GAD-7), Fear of Cancer Recurrence (FCR-7), and God Locus of Health Control (GLHC). Caregivers’ sociodemographic information and patients’ medical characteristics were also collected. Preliminary examination of the psychometric properties of the DADDS-CG was conducted using exploratory factor analysis, Cronbach's alpha, and correlations. The prevalence and risk factors of death anxiety were assessed using frequencies, pair-wise comparisons, and correlations.

Factor analysis of the DADDS-CG revealed a two-factor structure consistent with the original DADDS. The DADDS-CG demonstrated excellent internal consistency, convergent validity with the PHQ-9, GAD-7, and FCR-7, and discriminant validity with the GLHC. Over two-thirds of caregivers reported moderate-to-severe symptoms of death anxiety. Death anxiety was highest in women and caregivers of patients with high-grade PBT.

The DADDS-CG demonstrates sound psychometric properties in caregivers of patients with PBT, who report high levels of death anxiety. Further research is needed to support the measure's value in clinical care and research — both in this population and other caregivers — in order to address this unmet, psychosocial need.

This report describes a case of concurrent engagement in Meaning-Centered Psychotherapy (MCP) and Meaning-Centered Psychotherapy for Caregivers (MCP-C), brief, structured interventions designed to address existential distress in patients with cancer and cancer caregivers.

Descriptions of the independent courses of MCP/MCP-C treatment for a patient with Glioblastoma Multiforme and his caregiver are provided with both unique and shared themes around sources of meaning highlighted.

The patient and caregiver each experienced enhanced well-being as a result of receiving MCP and MCP-C, as well as shared benefits of deepened connectedness. Engagement in MCP/MCP-C had important implications for their experience of the patient's end-of-life and the caregiver's bereavement.

MCP and MCP-C are interventions typically delivered independently to patients and caregivers. The individual and shared benefits derived from MCP/MCP-C by this patient and caregiver point to the potential benefits of concurrent engagement and the need for future dyadic research on MCP/MCP-C.