This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the quality and effectiveness of care provided. Our goals included exploring emotional, social, and practical caregiving dimensions within the PPC context to address gaps and find areas for improvement. The objectives encompassed an exploration of the perceived effects on physical, emotional, social, and spiritual dimensions, an investigation into pre-PPC inclusion experiences, and an identification of limitations and potential areas for enhancement within the program.

Using a qualitative descriptive approach with a phenomenological lens, we engaged 6 primary caregivers through semi-structured interviews, employing theoretical convenience sampling. Analysis involved meticulous transcription, alphanumeric coding, and thematic categorization using Atlas.ti 8.0® software.

Consistently echoed across interviews were the positive impacts on family dynamics, characterized by a sense of tranquility, enhanced patient care, and substantial caregiver support. Emotional well-being improvements were marked by elevated mood, reduced anxiety, and a restored sense of normalcy. Noteworthy challenges identified encompassed communication gaps among health-care professionals, limited-service availability, and perceived constraints in home care.

The study underscores the profound positive influence of the PPC program on the perceived quality of life for families navigating the complexities of caring for children with life-limiting illnesses. The findings underscore the paramount importance of holistic, family-centric care and underscore the imperative to address caregiver needs comprehensively to mitigate the risk of burnout. The identified challenges serve as signposts for refining communication strategies, expanding service provisions, and augmenting support structures within the PPC program. Overall, the study highlights the profound positive impact of the PPC program on family well-being, while also identifying areas for program enhancement, particularly in communication and service availability.

National guidance recommends that relatives of people with dementia receive support to develop coping strategies. STrAtegies for RelaTives (START) is an evidence-based manualised intervention for delivery on a one-to-one basis by trained graduate psychologists to family carers of people with dementia. However, implementation of START in standard National Health Service (NHS) provision has proved difficult. We describe collaboration between a Talking Therapies service and a Memory Service to co-facilitate and run START as a group. We consider implementation outcomes according to RE-AIM domains showing: the collaboration reached higher number of carers than other implementation initiatives (reach); there was significant reduction in caregiver anxiety and a trend towards significant reduction in depression (effectiveness); feedback from service users and clinicians on the service model has been positive (adoption); delivery has been supported by the written and audio materials (implementation); and the initiative has sustained over five years, despite the COVID-19 pandemic and staff turnover (maintenance). Finally, we discuss implications and potential future development.

1. (1) To develop knowledge about the content of the STrAtegies for RelaTives (START) coping intervention for family carers of people with dementia.

2. (2) To understand the similarities between low-intensity cognitive behavioural therapy for anxiety and depression, as provided by Psychological Wellbeing Practitioners (PWPs), and START psychoeducational content and skills exercises.

3. (3) To reflect on the rationale for group delivery of START.

4. (4) To consider the benefits of collaboration between Talking Therapies and Memory Services for implementing START.

Clinicians often rely on caregiver proxy symptom reports to treat cancer-related symptoms in children. Research has described disagreement between children’s and caregivers’ symptom reports. Factors influencing the level of agreement is an understudied area. Thus, this study aimed to examine potential factors contributing to the level of agreement between symptom reports provided by children and their caregivers.

Sixteen child–caregiver dyads participated separately in semi-structured interviews after completing a brief symptom measure independently using an electronic device. Child and caregiver quantitative symptom responses were reviewed in real-time and incorporated into the semi-structured interview. Sample characteristics and the level of agreement between symptom reports were calculated using descriptive statistics. Transcribed participant interviews were analyzed using content analysis.

Nearly half of child–caregiver dyads exhibited a moderate (37.5%, n = 6) or low (18.75%, n = 3) level of agreement on the abbreviated symptom measure. Qualitative analysis identified 5 themes: recognizing symptoms, experiencing symptoms, communicating symptoms, re-assessing and treating symptoms, and influencing individual and relationship factors. Influencing individual, including a child’s tendencies or personality traits, and relationship factors intersected the other themes, partially explained their symptom perceptions, and served to facilitate or hinder symptom communication.

Symptom communication is an important part of the symptom cycle, comprised of symptom recognition, experience, and management. Individual and relational factors may influence discrepancies in symptom perceptions between the child and caregiver. Clinicians and researchers should consider developing interventions to enhance symptom communication and promote collaboration between children and their caregivers to address symptom suffering during cancer treatment.

People with severe mental illness (SMI) are highly vulnerable and more affected by epidemics than the general population. They encounter limited access to care, miss out on infection prevention measures and are more prone to relapses.

This study explored the experiences of individuals with SMI and their caregivers in Uganda during the COVID-19 pandemic. Its focus was on the impact of COVID-19 and its response measures on their mental health.

The study was conducted at three sites; a national referral mental hospital, a regional referral hospital and a district hospital. Participants included persons with SMI, their caregivers and mental health professionals. Data collection involved in-depth interviews, key informant interviews and focus group discussions. Phenomenological thematic analysis was employed.

The key themes identified encompassed challenges in accessing mental health services, disrupted routine care, the impact of lockdown measures and discrimination.

The findings highlight the unique challenges faced by individuals with SMI and their caregivers during the COVID-19 pandemic in Uganda. There is need for interventions focusing on continued access to care, improving information dissemination and addressing the psychological impact of containment measures on people with SMI.

To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program.

Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison.

Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient’s treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a “one stop shop” containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate.

This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.

The main objective was to pilot the culturally adapted “Educate, Nurture, Advise, Before Life Ends” for Singapore (ENABLE-SG) model to evaluate its feasibility and potential effectiveness.

A single-arm pilot trial of ENABLE-SG among patients with advanced solid tumors and caregivers of these patients was conducted in the outpatient oncology clinic setting. Enrolled participants participated in individual ENABLE-SG psychoeducational sessions weekly. Patients had 6 sessions on the topics of maintaining positivity, self-care, coping with stress, managing symptoms, exploring what matters most and life review. Caregivers had 4 sessions on the topics of maintaining positivity, self-care, coping with stress and managing symptoms. At baseline, 4, 8, and 12 months after enrolment, patient’s quality of life was measured using the Functional Assessment of Chronic Illness Therapy – Palliative Care, patient’s mood was measured using the Center for Epidemiologic Studies – Depression scale, and caregiver quality of life was measured using the Singapore Caregiver Quality of Life Scale.

We enrolled 43 patients and 15 caregivers over a 10-month period from August 2021 to June 2022. Although there was a low approach-to-participation rate, most of those who enrolled completed all ENABLE-SG sessions – 72% for patients and 94% for caregivers. Caregivers had better quality of life over time, specifically in the subscales of mental well-being and experience-meaning.

Based on findings from this study, we are planning a randomized waitlist-controlled trial of ENABLE-SG for patients with advanced cancer and their caregivers.

Although some research suggests that caregivers from culturally and linguistically diverse (CALD) communities have higher unmet information needs compared to their English-speaking counterparts, few studies have examined determinants of information needs among CALD cancer caregivers and their satisfaction with received information. This study aimed to explore experiences with cancer-related information among caregivers of people with cancer from CALD communities.

Semi-structured interviews were conducted with 24 caregivers from Arabic and Chinese backgrounds (12 in each group). Thematic analysis was used to analyze data.

Participants’ mean age was 40.6 years, and most were female (83%). Six themes were identified: (a) lack of information to meet their needs; (b) challenges understanding cancer- and care-related information; (c) proactivity to make sense of, and understand information; (d) interpreting information: the role formal and informal services; and (e) engaging with health providers to access information.

Caregivers identified significant language and communication barriers impacting their capacity to understand cancer-related information given by providers and they invested personal effort clarifying information. The importance of access to formal interpreter services, even when caregivers and care recipients seem proficient in English, was highlighted. Cultural sensitivity of providers when discussing a cancer diagnosis and treatment was also identified as an important consideration.

Culturally tailored outreach programs designed to provide key cancer-related information which are accessible to CALD caregivers have the potential to improve the health outcomes of both caregivers and care recipients.

This study aimed to evaluate the evidence of validity and accuracy for the Mindful Self-Care Scale-Brief (B-MSCS) in Brazil among family caregivers of people with cancer.

This was a cross-sectional study with a sample of 203 family caregivers of people with cancer. The instruments used in this study were the following: B-MSCS, Brief Resilience Scale, and Brief Scale for Spiritual/Religious Coping. Exploratory factor analysis was carried out using the principal axis factoring method and direct oblimin oblique rotation, and confirmatory factor analysis using the robust weighted least squares means and variance adjusted estimation method and GEOMIM oblique rotation. The internal consistency of the latent factors was measured using Cronbach’s alpha coefficients.

The 6-factor model showed good fit to the data, with satisfactory reliability indices and adequate representation of the scale’s internal structure. The results that can support arguments in favor of validity evidence based on internal structure for the B-MSCS-Brazilian version (BR) relate to a 19-item version which, grouped into 6 latent factors, explained 46.47% of the variance. The factor solution reproduced 79.2% of the theoretically expected structure and 5 items were excluded. The Cronbach’s alpha coefficient of the factors in the B-MSCS-BR ranged from 0.58 to 0.84. Positive religious/spiritual coping had a direct association with the B-MSCS-BR factors, with the exception of the Physical Care factor (r = 0.033, p = 0.635). Negative spiritual/religious coping was inversely associated with the Mindful Relaxation (r = −0.160, p = 0.023), Supportive Relationships (r = −0.142, p = 0.043), and Mindful Awareness factors (r = −0.140, p = 0.045). There were no associations between the B-MSCS-BR factors and resilience.

The findings reveal that the B-MSCS (19-item) is a valid, reliable, and culturally-appropriate instrument to examine the practice of mindful self-care by family caregivers of people with cancer in Brazil.

The COVID-19 pandemic has created long-lasting changes in caregiving responsibilities, including but not limited to increased demands, loss of support, worsening mental and physical health, and increased financial worries. There is currently limited evidence regarding factors associated with perceived changes in caregiving responsibilities.

This observational study aimed to investigate factors (sociodemographic characteristics of caregivers and mental health and/or addiction concerns of the caregiver and their youth) that predict perceived negative changes in caregiving responsibilities among adult caregivers (aged 18+ years) of children and youth (aged 0–25 years) in Ontario, Canada, during the COVID-19 pandemic.

Data were collected from 1381 caregivers of children and youth between January and March of 2022 through a representative cross-sectional survey completed online. Logistic regression was conducted to determine predictors contributing to perceived negative changes in caregiving responsibilities.

Among the sociodemographic characteristics, only ethnicity significantly predicted outcome. Higher caregiver strain (odds ratio [OR] = 10.567, 95% CI = 6.614–16.882, P < 0.001), worsened personal mental health (OR = 1.945, 95% CI = 1.474–2.567, P < 0.001), a greater number of children/youth cared for per caregiver (OR = 1.368, 95% CI = 1.180–1.587, P < 0.001), dissatisfaction with the availability of social supports (OR = 1.768, 95% CI = 1.297–2.409, P < 0.001) and negative changes in mental well-being in at least one child/youth (OR = 2.277, 95% CI = 1.660–3.123, P < 0.001) predicted negative changes in caregiving responsibilities.

These results support further exploration of the implications of negative perceptions of caregiving responsibilities and what processes might be implemented to improve these perceptions and the outcomes.

Evidence suggests that cognitive behavioural therapy (CBT) can be a helpful approach for older adults experiencing anxiety and depression. Some research has suggested this is also the case for those caring for a family member with dementia. Little research has been conducted into the impact of CBT for older adults juggling the demands of caring for multiple family members with dementia.

This case study aimed to evaluate the application of CBT to ‘Mrs P’, a 68-year-old client experiencing anxiety and depression whilst caring for two family members with dementia.

A single case experimental design study was conducted to assess the effectiveness of CBT formulation and intervention, including cognitive restructuring of unhelpful thoughts about caregiving and increasing engagement in pleasurable activities.

Mrs P’s depression and anxiety scores improved significantly throughout treatment, and she met her goal of being able to manage when caregiving activities go wrong during daily life.

CBT may be a helpful approach to reducing anxiety and depression in dementia family caregivers.