There is an urgent need to improve early accessibility to psychoeducational interventions for informal caregivers of individuals with eating disorders (EDs). We adapted the BREF programme, a short, single-family, psycho-educational intervention originally developed for caregivers in severe mental disorders, to EDs (BREF-ED) and assessed at diagnosis announcement. We hypothesised that it has a good acceptability and effectiveness in reducing short-term caregivers’ self-reported levels of burden and depressive symptoms.

Data of caregivers who participated in the BREF-ED programme were analysed. Adherence, satisfaction, and perceived usefulness were evaluated. Changes in self-reported burden and depression symptoms were measured pre-, post-, and 3 months after the intervention using the Zarit Burden Interview (ZBI) and Center for Epidemiological Studies – Depression scale (CES-D).

Of the 53 caregivers included in the study, 52 participants completed the BREF-ED programme. As compared to baseline, ZBI scores showed a significant reduction after the intervention (Cohen’s d = 0.61, p < 0.001), and at the 3-month assessment (Cohen’s d = 0.62, p < 0.001). The CES-D scores also significantly decreased by the end of the third session (Cohen’s d = 0.83, p < 0.001) and at the 3-month follow-up (Cohen’s d = 0.77, p < 0.001). Satisfaction scores were high, with 90.1% of participants reporting being “very satisfied” and 9.9% “satisfied.”

Preliminary findings demonstrated high adherence rates, caregiver satisfaction, and a positive impact on burden and related depressive symptoms immediately after the programme and at short-term follow-up. This time- and resource-efficient programme has the potential for easy dissemination.

Caregivers play a significant role in the process of Voluntary Assisted Dying (VAD), reporting stances of support, opposition, or ambivalence. Though caregiver vulnerability is recognized, little is understood about how caregivers adjust when patients seek VAD. We sought to appreciate how bereaved caregivers of patients in organizations that did not participate in VAD processed and adapted to the challenges faced.

We purposefully recruited caregivers from cases reviewed in a retrospective study exploring how VAD impacted the quality of palliative care. We further expanded sampling to maximize diverse views. We used qualitative interpretative phenomenological analysis to explore unique caregiver perspectives.

Twenty-three caregivers completed interviews. Most were female, Australian-born, retired, identified with no religion, bereaved for 1–3 years, and in a caregiving role for 1–5 years. Caregivers sought accompaniment and non-abandonment across all stages of VAD. Coping was enhanced through framing and reframing thought processes and reconciling values. Caregivers bore responsibility through heightened emotions and experienced isolation and anticipatory grief as they reconciled perceived societal attitudes. Caregivers additionally failed to understand the rationale behind organizational stances and were unable to articulate the moral conflicts that arose. Impartiality from professionals was valued for caregivers to sustain care for the patient.

Despite feelings of vulnerability and isolation, caregivers demonstrated benevolence, courage, and self-compassion, reframing and accommodating their concerns. Professional accompaniment and non-abandonment necessitate solidarity and empowerment, without necessarily enabling VAD. Findings demonstrated the need for individuals and organizations to clearly articulate their willingness to continue to accompany patients, regardless of their position on VAD.

Acknowledging the impact of chronic kidney disease on caregivers’ quality of life (QoL) and psychological well-being has become a global priority, highlighting the need for supportive interventions specifically aimed at caregivers.

This study aimed to assess the prevalence of stress, anxiety and depression among family caregivers of Omani patients undergoing haemodialysis and to explore its association with QoL.

The study employed a cross-sectional design. A sample of 326 participants completed the study’s surveys, including the Depression Anxiety Stress Scale, WHOQOL-BREF scale and a demographic scale.

The survey indicated that 68.4% of the participant caregivers experienced varying degrees of depression. In addition, 48.4% of caregivers reported experiencing stress levels ranging from mild to extremely severe. For anxiety, 65.6% (n = 214) of caregivers noted varying levels, from mild to extremely severe anxiety. Significant negative associations were found among caregiver age, number of chronic illnesses, number of medications, daily hours spent on caregiving, physical health, stress, anxiety and depression, on the one hand, and the physical domain of QoL, on the other hand. Regarding the psychological domain of QoL, significant negative associations were observed with daily caregiving hours, physical health, stress, anxiety and depression.

This study highlights the significant psychological burden faced by caregivers of patients undergoing haemodialysis. Systematic screening and practical interventions, such as support groups and mental health programmes, are essential to improve caregiver well-being. Future research should explore the effectiveness of these interventions and the long-term impact of caregiving.

Effective communication during specialist palliative care (PC) referral is linked to improved health outcomes. Initiating a conversation about PC is difficult and poor communication can lead to stigma. The aim of this descriptive phenomenological study was to explore the communication experiences of persons referred to specialist PC services and their carers and explore strategies to improve such experiences.

Purposive sampling was used to recruit 17 participants who were either receiving specialist PC and/or caring for someone who was receiving specialist PC. Participants were recruited from a hospice. Inductive thematic analysis was conducted.

Four themes were identified: (i) The why, who, what, when, where, and how of PC referral; (ii) initial thoughts and feelings about referral to PC; (iii) enhancing the communication of PC referral; and (iv) addressing practical needs during PC referral. Participants were referred either through their general practitioner or oncologist. Initially, participants linked PC referral to death. This perception changed when participants started availing of the services. Compassion, empathy, hope, privacy, in-person communication, individualized referral, and information dosing were identified as building blocks for effective communication. Participants stressed the importance of raising public awareness of PC and addressing the practical needs of individuals being referred.

The communication of PC referral should be tailored to meet the individual needs of patients and carers. Delivering clear and simple information is important to help patients and carers understand and accept the referral.

This study aimed to examine the impact of perceived caregiver burden and associated factors on the anger levels and anger expression styles of family caregivers for patients receiving palliative care at home.

This cross-sectional and exploratory correlational type study was conducted with 343 family caregivers. Data were collected face-to-face between March and September 2022 using a Caregiver and Care Recipient Information Form, the Burden Interview, and the Trait Anger and Anger Expression Scale.

There was a significant from very weak to weak correlation between the caregiver burden scores and trait anger, anger-in, anger-out, and anger control scores. The caregiver burden increased trait anger, anger-in, and anger-out while decreasing anger control. The caregiver burden, daily caregiving hours, presence of another dependent at home, presence of a separate room for the care recipient, income level, chronic illness of caregiver, duration of caregiving per month, and care recipient gender explained 17.2% of the total variation in anger control scores.

The caregiver burden levels and anger expression styles of family caregivers vary depending on the characteristics of both the caregiver and the care recipient. Family members may experience an increase in perceived caregiver burden, which can lead to elevated levels of trait anger, suppression of anger, and reduced anger control. Healthcare professionals should monitor the family caregivers’ caregiver burden and anger levels. Family caregivers should be encouraged and given opportunities to express their feelings and thoughts about caregiving. Strategies aimed at reducing the caregiver burden and coping with feelings of anger should be planned for the family members of patients receiving palliative care at home.

Research on grief among family caregivers of individuals with dementia has seen a notable increase. Our objective was to synthesize the relationship between coping factors and pre-death grief (PDG).

(Prospero protocol: CRD42024560208) We conducted a systematic review of literature from PubMed, Web of Science, Scopus, PsycInfo, and Medline up to July 2024. Included studies encompassed quantitative, qualitative, and mixed methods approaches. During the study selection process, we excluded data on intervention effectiveness and studies not published in English. The quality of the studies was evaluated using the Mixed Methods Appraisal Tool. Evidence was summarized narratively.

Participants in this study are family caregivers who take care of dementia patients.

We included data from 12 studies in our analysis. The majority of these investigations were carried out in Western countries. The research primarily involved spousal or adult child caregivers and centered on PDG. We included validated measures of PDG in each study.

Among the reviewed studies, five reported on coping strategies, while seven addressed coping resources. Overall, the findings indicated that the application of coping strategies, specifically positive coping strategies, is effective in alleviating PDG and mitigating the effects of caregiving burden on PDG. Coping resources – including self-efficacy, sense of coherence, and support from friends and family – appear to have a beneficial impact in reducing PDG. Additionally, the quality of relationships with friends and family members was found to be a significant factor. Moreover, spiritual and religious beliefs, along with community faith, have been identified as crucial elements in alleviating grief experienced by caregivers.

Knowing what coping strategies and resources are beneficial to decrease PDG experiences among dementia caregivers.

Motor neurone disease (MND) results in complex and disabling symptoms that give rise to significant and challenging care needs. While much of the care required is typically provided by the partner of the individual who has been diagnosed with MND, there are few studies that have investigated the impact of MND on the couple’s relationship.

To establish the current state of the research literature examining the impact of MND on the couple’s relationship.

A scoping review was undertaken with thematic analysis used to synthesize the data.

The scoping review identified 15 studies that were thematically analyzed to identify prominent themes. The following 5 themes were identified: adjusting to new roles; changes in communication and values; spouse well-being and health; and changes to social relationships and intimacy changes.

This scoping review highlighted the impact of the MND trajectory on the couple’s relationship overall and on key areas of couple communication and functioning. These areas can be used to guide the development of interventions and services that are tailored to the needs of couple relationships. Further understanding of the factors impacting the couple’s relationship on the MND journey and how to navigate these factors is critically warranted.

Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT’s efficacy in reducing dignity-related distress and alleviating psychosocial symptoms like depression and anxiety in terminally ill patients. Its application has been extended to nonterminal patients with chronic conditions, mental health challenges, and children nearing the end of life, with promising results. DT also benefits families and caregivers, promoting emotional resilience and facilitating grieving. However, the potential for proxy applications, such as posthumous DT (p-DT) – conducted by relatives after a patient’s death or on behalf of individuals unable to participate – remains underexplored.

A case series report.

This case series examines 3 relatives who engaged in p-DT, highlighting its feasibility and potential benefits.

Findings suggest p-DT may serve as a valuable tool for bereavement support, warranting further research to expand its scope and accessibility.

The link between opioids and peripheral edema has been discussed in the literature, though scarcely, especially in case reports involving patients using transdermal fentanyl for pain management.

We present a case of a 51-year-old man with advanced head and neck cancer who developed severe, asymmetrical left-sided hemifacial edema following the initiation of transdermal fentanyl for pain management, which subsequently subsided after switching to transdermal buprenorphine.

We reduced the fentanyl patch from 75 to 62.5 mcg/h. At a follow-up visit within 48 hours there was some improvement in the swelling of the eyelids and tongue, but no significant change was noted in the lips, chin, and cheek region; and the patient experienced facial pain and discomfort due to swelling. It was then decided to rotate the opioid to buprenorphine transdermal patch 52.5mcg/h every 3 days; and a rapid improvement in the patient’s face, particularly in the eyelids and cheek region was observed. The remaining edema with the buprenorphine patch could be due to cancer progression.

The final diagnosis of edema as a side effect of transdermal fentanyl was reached through careful knowledge of the frequent and non-frequent side effects of opioid drugs, clinical observation and, importantly, by listening to the patient and his wife, whose insights and observations were integrated with the medical team’s knowledge and assessments. Our report enhances the benefit of paying close attention to the input and observations of patients and caregivers, as they are the ones most familiar with the disease’s impact on daily life and the subtle changes and details that may go unnoticed in the clinical setting.‡

Coping-Together is a self-directed, self-management intervention initially developed for patients in early-stages of cancer and their caregivers. This study evaluated its acceptability among patients with advanced cancer and their caregivers.

Twenty-six participants (patients with advanced cancer n = 15 and their caregivers n = 11) were given the Coping-Together materials (6 booklets and a workbook) for 7 weeks. Participants were interviewed twice during this time to solicit feedback on the intervention’s content, design, and recommended changes. Audio-recorded interviews were transcribed verbatim, and thematic analysis was conducted.

Participants found Coping-Together was mostly relevant. All (n = 26, 100%) participants expressed interest and a desire to improve their self-management skills. Perceived benefits included learning to develop SMARTTER (specific, measurable, attainable, relevant, timely, and done together) self-management plans, normalizing challenges, and enhancing communication within the dyad and with their healthcare team. Most (n = 25, 96%) identified strategies from the booklets that benefited them. Top strategies learned were skills to manage physical health (n = 20, 77%) (e.g., monitoring symptoms), emotional well-being (n = 21, 81%) (e.g., reducing stress by reframing thoughts), as well as social well-being (n = 24, 92%) (e.g., communicating with their healthcare team). Barriers included illness severity and time constraints. The unique advanced cancer needs that are to be integrated include support related to fear of death, uncertainty, palliative care and advanced care planning. Suggested modifications involved enhancing accessibility and including more advanced cancer information (e.g., end-of-life planning, comfort care, resources).

Participants reported several benefits from using Coping-Together, with minimal adaptations needed. Creating SMARTTER self-management plans helped them implement self-management strategies. Specific areas for improvement addressed the need for improved accessibility and more content related to advanced cancer. Findings demonstrate how Coping-Together is acceptable for those living with advanced cancer and their caregivers, offering much of the support needed to enhance day-to-day quality of life.