The interstage period is a critical phase for single ventricle infants due to their fragile cardiovascular state. Infants often experience medical and feeding challenges during this period, resulting in caregiver stress. We completed a quality improvement project at Children’s Healthcare of Atlanta to understand these challenges to inform targeted interventions.

This single-center project included a medical chart review and a cross-sectional caregiver survey. Data were collected on patient and caregiver demographics and clinical variables. Feeding outcomes were assessed using the Pediatric Functional Oral Intake Scale. Caregiver impact was measured using the Feeding/Swallowing Impact Survey.

The project included 15 single ventricle patients with a mean (standard deviation) age of 151.73(25.92) days at the time of the second-stage palliation. Forty percent of patients experienced at least one readmission, primarily due to feeding intolerance (20%) and desaturations (26.7%). Milk protein allergy (26.9%) was the most common medical complication, followed by interstage unplanned reinterventions. Pediatric Functional Oral Intake Scale scores demonstrated that 33% consumed minimal volumes or no oral intake at the time of the bidirectional Glenn, and 93.3% of patients did not receive outpatient feeding services during the interstage. Caregiver stress scores resulted in mean scores (standard deviation) of 2.23(1.54), with the highest impact on daily activities. All caregivers affirmed the need for a dedicated multidisciplinary clinic.

The interstage period for single ventricle patients poses significant medical and feeding challenges, resulting in caregiver stress. Comprehensive, multidisciplinary feeding support during the interstage period may improve patient outcomes and alleviate caregiver burden.

This study aimed to explore situations where caregivers and patients are likely to collude, from the perspective of caregivers of advanced cancer patients in Bangladesh.

This study took place in 2 different tertiary care hospitals in Bangladesh. The study design included both quantitative and qualitative components. In this study, we focused on situations in which caregivers choose not to disclose the truth, regardless of their patients’ desire to know it. This may include instances of mutual withholding or cases of deliberate withholding by caregivers, even when patients express a desire to know the truth. While collusion may occur in some instances, not all situations qualify as collusion; nonetheless, all of these situations were broadly considered as collusion-prone. The intensity of enactment was assessed using the “Caregiver Collusion Questionnaire,” and in-depth exploration of collusion-prone situations was conducted through key person interviews with the caregivers.

The intensity of enactment was medium to high among two-thirds (83.1%) of caregivers. This intensity was significantly associated with the caregivers’ relationship with the patients and their intention to disclose the truth (p < 0.01). Higher intensity of enactment has been observed among the children who are tending to their terminally ill parents. Four major themes regarding collusion-prone situation were generated by the qualitative analysis: (1) Reasons for nondisclosure; (2) Time of disclosure; (3) Selective disclosure; and (4) Discloser of truth.

The nature of collusion-prone situations is shaped by culture and social values. By gradually and indirectly addressing these situations, healthcare professionals can assist families in navigating through difficult conversations and ensure that the patient’s wishes and values are respected.

Glioblastoma multiforme (GBM) is the most common and aggressive form of brain cancer. Family caregivers of individuals with GBM must navigate a wide range of their care recipients’ physical, cognitive, and psychosocial deficits to provide effective care, which is both mentally and physically demanding. This study aimed to investigate the perspectives of family caregivers of GBM patients about the barriers and challenges they encounter when providing care to their care recipients.

Nineteen current and former family caregivers for individuals with GBM participated in semi-structured interviews from October 2023 through January 2024. We conducted interviews virtually and used applied thematic analysis to code transcripts to determine themes among participant responses.

Three themes emerged from the interview analysis: (1) overwhelming caregiver burden, (2) difficulties coping with the caregiver role, and (3) gaps in caregiver support. These themes demonstrated a significant physical and mental toll on caregivers and a lack of time for engaging in coping strategies. The family caregivers described a lack of resources, minimal education, and limited time with their medical providers left them feeling ill-prepared for their role. Most family caregivers indicated their care recipients did not use rehabilitation services and the family caregivers expressed confusion about hospice and palliative care.

Family caregivers for individuals with GBM desire more straightforward and proactive information and education about their care recipients from their medical providers. There is an opportunity for more utilization of hospice, palliative, and rehabilitation services to provide necessary training to GBM patients and their caregivers.

Caregivers of those with neurodegenerative disease (ND) manage complex symptoms which impact their wellbeing. Self-compassion can promote maintenance of wellbeing during challenging experiences, including caregiving. Little guidance exists for observationally studying self-compassion or targeted interventions for this population. Our objective was to complete a scoping review of research describing self-compassion in the context of caregiver wellbeing of caregivers of those living with ND.

Following Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Reviews (PRISMA-ScR) guidelines, 3 online databases identified 350 peer-reviewed articles, 18 of which were included in this study. Eligibility included being written in English, targeting caregivers of those living with ND, and examination of self-compassion. Articles were organized by the incorporation or characterization of self-compassion in the study design.

Alzheimer’s disease predominated study samples of care recipients. Across study types self-compassion appeared as a theoretical concept, emerging theme, variable associated with other outcomes, and main outcome variable. Self-compassion is frequently measured using the Self-Compassion Scale, full or short form .

The study of self-compassion with caregivers of individuals living with ND is growing. Current literature is somewhat unfocussed, leading to gaps in understanding conceptualization to achieve maximum intervention benefits. Clarifying the role of self-compassion in caregiver wellbeing will provide a lens through which non-pharmacologic, psychotherapeutic, and behavioral intervention development may be framed to reduce negative psychological outcomes. The most frequently represented ND is Alzheimer’s disease or other dementia, obscuring other NDs like amyotrophic lateral sclerosis, Parkinson’s disease, and others.

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.