An estimated 609,820 child-rearing adults in 2023 died from advanced cancer, affecting 153,675 dependent children. Although children are known to suffer significant distress when a parent is diagnosed with cancer, few studies have described parents’ views of their adolescent’s behavioral response to their advanced cancer or what the parent did to interpret or manage that response.

To describe patient-reported concerns about their adolescent and how they responded to their adolescent’s behavior.

Single occasion interviews were administered to 6 adolescent-rearing parents with Stage IV cancer. Interviews were analyzed using inductive content analysis by trained coders. Trustworthiness of results was protected through peer debriefing, coding to consensus, and maintaining an audit trail.

The core construct that explained study data was Being There without Taking Over, comprised of 4 domains: Struggling to Read My Child, Attempting to Talk with My Child about My Cancer, Trying to Maintain Optimism, and Understanding My Child.

Parents were deeply concerned about the impact of their advanced cancer on their adolescent but were unable to distinguish between cancer-related distress and adolescent angst. They feared initiating cancer-related discussions and struggled with their own feelings of guilt and parental inadequacy but did not turn to professionals for help.

Adolescent-rearing patients with advanced disease need to be triaged into services that offer a framework from which parents can interpret their child’s behavior and learn ways to have adolescent-appropriate conversations about the cancer. Such services should also help parents gain skills to manage feelings of parental inadequacy and guilt. In the absence of services, parents struggle and do not know how to interpret and respond to their adolescent’s cancer-related behavior.

Financial toxicity is of increasing concern in the United States. The Comprehensive Score for Financial Toxicity (COST) is a validated measure; however, it has not been widely utilized among low-income patients and may not fully capture financial toxicity in this population. Furthermore, the relationships between financial toxicity, quality of life (QOL), and patient well-being are poorly understood. We describe the experience of financial toxicity among low-income adults receiving cancer care. We hypothesized that higher financial toxicity would be associated with less income and lower quality of life. Qualitative interviews focused on the financial impact of cancer treatment.

This study was conducted at a cancer clinic in Central Texas. Quantitative and qualitative data were collected in Fall and Spring 2018, respectively. The quantitative sample (N = 115) was dichotomized by annual income (<$15,000 vs. >$15,000). Outcomes included financial toxicity (COST), quality of life (FACT-G), and patient well-being (PROMIS measures: Anxiety, Depression, Fatigue, Pain Interference, and Physical Function). Associations between quality of life, patient well-being, and financial toxicity were evaluated using linear regression. Sequential qualitative interviews were conducted with a subsample of 12 participants.

Patients with <$15k had significantly lower levels of QOL and patient well-being such as depression and anxiety compared to patients with >$15k across multiple measures. A multivariate linear regression found QOL (Β = 0.17, 95% CI = 0.05, 0.29, p = 0.008) and insurance status (Β = −3.79, 95% CI = −7.42, −0.16, p = 0.04), but not income, were significantly associated with financial toxicity. Three qualitative themes regarding patient's access to cancer care were identified: obtaining healthcare coverage, maintaining financial stability, and receiving social support.

Low-income patients with cancer face unique access barriers and are at risk for forgoing treatment or increased symptom burdens. Comprehensive assessment and financial navigation may improve access to care, symptom management, and reduce strain on social support systems.

There is ongoing debate regarding the relationship between clinical symptoms and cognition in schizophrenia spectrum disorders (SSD). The present study aimed to explore the potential relationships between symptoms, with an emphasis on negative symptoms, and social and non-social cognition.

Hierarchical cluster analysis with k-means optimisation was conducted to characterise clinical subgroups using the Scale for the Assessment of Negative Symptoms and Scale for the Assessment of Positive Symptoms in n = 130 SSD participants. Emergent clusters were compared on the MATRICS Consensus Cognitive Battery, which measures non-social cognition and emotion management as well as demographic and clinical variables. Spearman’s correlations were then used to investigate potential relationships between specific negative symptoms and emotion management and non-social cognition.

Four distinct clinical subgroups were identified: 1. high hallucinations, 2. mixed symptoms, 3. high negative symptoms, and 4. relatively asymptomatic. The high negative symptom subgroup was found to have significantly poorer emotion management than the high hallucination and relatively asymptomatic subgroups. No further differences between subgroups were observed. Correlation analyses revealed avolition-apathy and anhedonia-asociality were negatively correlated with emotion management, but not non-social cognition. Affective flattening and alogia were not associated with either emotion management or non-social cognition.

The present study identified associations between negative symptoms and emotion management within social cognition, but no domains of non-social cognition. This relationship may be specific to motivation, anhedonia and apathy, but not expressive deficits. This suggests that targeted interventions for social cognition may also result in parallel improvement in some specific negative symptoms.

Cellphones can be used to support treatment and disseminate health information. Literature has shown an unmet need for information for people living with human immunodeficiency virus (PLHIV) and others affected by the epidemic. The World Health Organization (WHO) emphasizes the incorporation of cellphones as a tool to support HIV adherence and information dissemination. We sought to assess rates of utilization of health information provided through the Call for Life Uganda (CFLU) platform among HIV-positive individuals.

CFLU uses the Mobile Technology for Community Health (MoTeCH) software Call for Life™ developed by Janssen and adapted to the Uganda setting in collaboration with Infectious Diseases Institute (IDI). It offers daily pill reminder calls/sms, health info tips; symptom reporting and clinic appointment reminders. CFLU was used in a randomized control trial (RCT) undertaken to improve outcomes in HIV patients providing information categorized into Antiretroviral therapy (ART) and adherence, positive living, general health, pregnancy, breast-feeding, and sexuality. We used data from the RCT between August 2016 to June 2018 to generate frequency distributions and gender differences regarding utilization of health information.

From a total of 300 respondents receiving the CFLU intervention, a majority were: females (70%), aged 16 to 35 years (62%), married (74.7%), had attained secondary and higher education (57.3%); and employed (67.7%). Overall, 255/300 (85%) utilized at least one of the health-tips categories. Participants utilized mostly general health information 211/300 (70%); followed ARTs and adherence 173/300 (57.7%); pregnancy and breast-feeding 137/300 (45.7%), sexuality 113/300 (37.7%), and positive living 98/300 (32.7%). Gender differences were noted regarding ARTs and adherence utilization with higher percentage of females to males (61% vs 50%) and for sexuality, a higher percentage of males to females (41.6% vs 33.3%, p < 0.05).

The findings indicate that when availed with platforms for health-related information, PLHIV populations will utilize them mostly for adherence. We recommend increased incorporation of such technologies to disseminate information in this key population.

The Comprehensive Assessment of Neurodegeneration and Dementia (COMPASS-ND) cohort study of the Canadian Consortium on Neurodegeneration in Aging (CCNA) is a national initiative to catalyze research on dementia, set up to support the research agendas of CCNA teams. This cross-country longitudinal cohort of 2310 deeply phenotyped subjects with various forms of dementia and mild memory loss or concerns, along with cognitively intact elderly subjects, will test hypotheses generated by these teams.

The COMPASS-ND protocol, initial grant proposal for funding, fifth semi-annual CCNA Progress Report submitted to the Canadian Institutes of Health Research December 2017, and other documents supplemented by modifications made and lessons learned after implementation were used by the authors to create the description of the study provided here.

The CCNA COMPASS-ND cohort includes participants from across Canada with various cognitive conditions associated with or at risk of neurodegenerative diseases. They will undergo a wide range of experimental, clinical, imaging, and genetic investigation to specifically address the causes, diagnosis, treatment, and prevention of these conditions in the aging population. Data derived from clinical and cognitive assessments, biospecimens, brain imaging, genetics, and brain donations will be used to test hypotheses generated by CCNA research teams and other Canadian researchers. The study is the most comprehensive and ambitious Canadian study of dementia. Initial data posting occurred in 2018, with the full cohort to be accrued by 2020.

Availability of data from the COMPASS-ND study will provide a major stimulus for dementia research in Canada in the coming years.

Little is known about potential harmful effects as a consequence of self-guided internet-based cognitive behaviour therapy (iCBT), such as symptom deterioration rates. Thus, safety concerns remain and hamper the implementation of self-guided iCBT into clinical practice. We aimed to conduct an individual participant data (IPD) meta-analysis to determine the prevalence of clinically significant deterioration (symptom worsening) in adults with depressive symptoms who received self-guided iCBT compared with control conditions. Several socio-demographic, clinical and study-level variables were tested as potential moderators of deterioration.

Randomised controlled trials that reported results of self-guided iCBT compared with control conditions in adults with symptoms of depression were selected. Mixed effects models with participants nested within studies were used to examine possible clinically significant deterioration rates.

Thirteen out of 16 eligible trials were included in the present IPD meta-analysis. Of the 3805 participants analysed, 7.2% showed clinically significant deterioration (5.8% and 9.1% of participants in the intervention and control groups, respectively). Participants in self-guided iCBT were less likely to deteriorate (OR 0.62, p < 0.001) compared with control conditions. None of the examined participant- and study-level moderators were significantly associated with deterioration rates.

Self-guided iCBT has a lower rate of negative outcomes on symptoms than control conditions and could be a first step treatment approach for adult depression as well as an alternative to watchful waiting in general practice.

Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation.

Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach.

Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time; support from management, staff and physicians; and positive family feedback.

The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.

Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer.

An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: “sleep,” “insomnia,” “sleep disturbance,” “circadian rhythm,” “caregiver,” “carer,” “advanced cancer,” “palliative cancer,” and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded.

Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours.

Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep.