Managing Cancer and Living Meaningfully (CALM) therapy may be a beneficial intervention for addressing death anxiety in caregivers yet has not been formally evaluated in this population. The purpose of this Phase 1a Define trial was to evaluate the suitability of CALM for caregivers of patients diagnosed with malignant glioma using qualitative stakeholder interviews prior to pilot testing.

Twenty-two bereaved caregivers participated in a focus group and completed subsequent caregiver-reported outcome measures. During the focus group, caregivers received information about CALM and provided feedback on the intervention’s relevance and recommendations to improve its content and delivery for the caregiving experience. A team of coders qualitatively analyzed responses using thematic, deductive, latent analysis (kappa = 0.86).

Results suggest that CALM is highly relevant to the caregiving experience and may benefit caregivers emotionally, increase preparedness and self-efficacy in their role, improve their communication with the patient, and provide a unique opportunity to receive specialized care. Potential hurdles for participation included limited time and energy, concerns about burdening the patient by sharing their emotions, and worries that their loved one would not be emotionally or cognitively capable of participating. Participants also recommended additional content areas relevant to caregiving (i.e., burden and bereavement) and provided suggestions to improve CALM’s delivery (timing, initial presentation, session format, and logistics).

Participants’ feedback was largely positive and supports piloting an optimized CALM protocol among malignant glioma caregivers. Further research is needed to determine CALM’s effectiveness in caregivers of patients with malignant gliomas.

End-of-life care for persons living with dementia in home hospice relies heavily on coordination between family care partners (FCPs) and clinicians (e.g., hospice social workers and nurses). FCPs and clinicians have reported support and knowledge gaps in end-of-life dementia care. Interventions are needed to improve FCPs’ support and clinicians’ educational gaps.

A pilot randomized controlled trial was designed to examine implementation outcomes for a dementia-focused end-of-life intervention for FCPs (n = 37) and clinicians (n = 15). Data on survey completion and acceptability were collected at baseline, during 4 follow-up visits, and at the conclusion of the study.

Twenty-eight (75%) caregivers completed the post-study survey, and 10 (27%) reported using the structured worksheet. Thirteen (87%) clinicians completed the post-training survey, 8 (53%) completed the post-study survey, and 8 (100%) used the worksheet. Clinicians (n = 8) were satisfied or highly satisfied with the instructional videos, and half (50%) used the information frequently with patients. Both groups reported the worksheet helpful, easy to use, and satisfactory, though clinicians rated helpfulness slightly higher (mean = 3.88 vs. 3.70 for FCPs). Clinicians liked the worksheet’s structured guidance and the enhanced collaboration.

This study provides preliminary evidence for implementation outcomes of a dementia-focused end-of-life intervention in home hospice. Findings suggest the intervention can be implemented in a hospice setting, with moderate worksheet uptake and perceived value among FCPs and clinicians.

Frontotemporal dementia (FTD) and related disorders are major causes of young-onset dementia (YOD), yet caregivers often face delayed diagnosis and high distress. Data on the Canadian caregiving experience in FTD remain scarce. This study aimed to describe caregivers’ profiles and experiences navigating diagnosis and care and to identify factors associated with diagnostic delay and caregiver burden.

We conducted an online survey (June 2023–May 2024) of adults providing care to individuals with FTD. The survey captured sociodemographic characteristics, diagnostic journey, healthcare access and caregiver burden (Zarit Burden Interview, ZBI). Neuropsychiatric symptoms (NPS) were assessed using the Neuropsychiatric Inventory. Descriptive and multivariable analyses examined factors associated with delayed diagnosis and burden.

Ninety-seven caregivers participated (82.5% women; mean age 61.4 ± 13.1 years). Care recipients (58.8% men; mean age 72.9 ± 9.7 years) most commonly had behavioural-variant FTD (57.7%). Mean time to diagnosis was 3.1 ± 4.5 years and was longer for YOD, those without family history and those initially misdiagnosed. Nearly half were initially misdiagnosed as psychiatric disorders or Alzheimer. Women caregivers reported significantly longer diagnostic delays (+20 months, p = 0.005). Most caregivers reported substantial burden (mean ZBI = 23.1 ± 8.3) and severe distress related to NPS, especially disinhibition and irritability, which independently predicted higher burden.

Canadian FTD caregivers face prolonged diagnostic journeys, high neuropsychiatric-related distress and substantial unmet needs. Findings highlight gaps in awareness, access to specialized care and systematic assessment of caregiver burden, underscoring urgent priorities for improving diagnostic pathways and support services.

This study engages with the experiences and challenges reported by Punjabi family carers of older adults from one census metropolitan city in Canada.

Our focus was on understanding carers’ interpretations of family and public responsibilities for supporting older adults.

We interviewed eight Punjabi carers in one Canadian city who provide any form of unpaid help to an older adult living at home, about their experiences and ideas for advocacy. The interviews were analyzed through abductive thematic analysis, using politicization as a sensitizing concept.

While participants identified ideas for changes in public policy, their underlying mistrust of formal care systems often seemed to reinforce familial responsibility for care and restrict advocacy efforts to local family systems.

These truncated networks of support contributed to alienating conditions for carers and limited opportunities for inclusive collective action to improve the current social organization of care for older people at home in Canada.

The aim of this review was to identify, review, and synthesize primary qualitative literature to answer the question “what are the roles and experiences of informal caregivers providing care to a person with non-malignant respiratory disease at end of life from the perspectives of the caregiver and recipient of care?”

This qualitative systematic review was undertaken using thematic synthesis. Electronic databases (British Nursing Database, Cumulative Index to Nursing and Allied Health Literature Plus, Medline, PsycInfo, ProQuest Sociology, Allied and Complementary Medicine Database [AMED]) covering nursing, medicine, and social sciences were systematically searched from inception to October 2024. Studies were included if they reported data on the experiences and roles of caregivers in non-malignant respiratory disease at end of life, from the perspective of the caregiver or the person with non-malignant respiratory disease. Twenty-two papers met the eligibility criteria and were included in the review. Quality assessment was undertaken using the JBI Critical Appraisal Checklist for Qualitative Research.

Thematic synthesis of the data generated five analytical themes: Caregivers experience shifting identity and new roles; Adaptation is necessary to cope with loss and change; Caregivers need more information and coordinated care services; Emotional effects of caregiving; and Future uncertainty and facing death. The findings illustrated the complexity of the caregiving role and highlight unmet needs during the end of life stage.

This evidence synthesis highlights the significant contribution caregivers make in the lives and deaths of those with non-malignant respiratory disease. Challenges of caregiving in this context increase the stress of caregivers, including unpredictable disease progression and difficult symptoms such as breathlessness. There are persistent inequalities between malignant and non-malignant care pathways. Caregivers would welcome more recognition and information from healthcare professionals to support their role.

The aim of this article is to develop and pilot test a new supportive care intervention, Empower GBM, designed for patients with glioblastoma and their family caregivers to reduce psychological distress and improve quality of life.

Qualitative interviews were conducted with patients diagnosed with glioblastoma and their caregivers to obtain information about their experiences and needs in coping with glioblastoma. We also gathered their feedback about the supportive care intervention we were proposing (Phase I). Following Phase I, we conducted a single-arm pilot to evaluate the feasibility and acceptability of the 6-session intervention (Phase II).

During interviews (N = 14), patients and caregivers reported having the most difficulty and distress surrounding disease progression and management, maintaining dignity and autonomy, negotiation of roles and responsibilities, and maintaining connection with one another. Participants endorsed that an intervention like Empower GBM with skills focused on managing symptoms to increase independence, increasing caregiving efficacy and support, and coping with dyadic challenges would be of potential benefit. Preliminary results from the pilot study (N = 11) suggested the intervention is both feasible (e.g., 82% completed all 6 sessions and post-treatment surveys) and acceptable (88.9% reported a mean satisfaction score of 3 or higher; mean score of 3.57/4.0). Improvements in psychological outcomes, functional well-being, and caregiving efficacy from pre- to post-treatment survey results suggested the potential benefits of the intervention.

We developed a novel supportive care intervention informed by the dyadic illness model that is designed to meet the individual and interpersonal needs of patients with glioblastoma and their caregivers. Unique features include its flexibility to be delivered to patients and/or their family caregivers individually or jointly, while providing skills and strategies to meet the needs of both individuals and the dyad as the unit of care in coping with glioblastoma.