What does good care look like to people living with congenital heart disease in the 21st century? Qualitative online, asynchronous discussion forums.

OBJECTIVES: As part of a wider study, our aim was to elicit perspectives of people with congenital heart disease (CHD) and/or their parents/carers about their experiences of healthcare and what is important to them when receiving care. DESIGN AND SETTING: A qualitative study involving a series of closed, asynchronous, online discussion forums underpinned by an interpretivist framework and set up and moderated by three patient charities via their Facebook pages. PARTICIPANTS: People with CHD and parents/carers of people with CHD from the UK. RESULTS: Five forums were run for 12-24 weeks across the three charities, and 343 participants signed up to the forums. Four linked themes related to processes of care were identified following thematic analysis of the transcripts: relationships and communication; access and coordination; experience of discrete episodes of care and psychological support. These impacted how care was experienced and, for some patients, outcomes of CHD and its treatment as well as broader health outcomes. In addition, context relating to stages of the patient journey was described, together with patient-related factors such as patients' knowledge and expertise in their own condition. CONCLUSIONS: People with CHD and their parents/carers want individualised, person-centred care delivered within an appropriately resourced, multidisciplinary service. Although examples of excellent care were provided it is evident that, from the perspective of patients and parents/carers, some National Health Service Standards for people with CHD were not being met.

Low back pain frequency and the related risk factors in nurses and caregivers.

OBJECTIVES: The objective of this study is to investigate the frequency of low back pain and the relationship between low back pain and personal and occupational risk factors in hospital employees. METHODS: The study sample consisted of 270 nurses and 189 caregivers working in a university hospital. Demographic characteristics, low back pain history, and low back pain risk factors were queried by self-report questionnaires. The Biering-Sorensen Test was used to evaluate the endurance of trunk extensor muscles. Also, the Oswestry Disability Index (ODI) and Hospital Anxiety and Depression Scale (HADS) were used. RESULTS: Of the hospital employees included in the study, 56.5% had low back pain in the last month, and 81.9% had a his-tory of low back pain. The frequency of low back pain was significantly higher among those who work in a stressful working environment, stand for extended periods, lift patients or heavy subjects without using a lifting device, and transfer patients alone. In addition, it was determined that those who exercise regularly and are satisfied with their job had significantly less low back pain (p<0.05). The mean Biering-Sorensen test difference between the two groups was statistically significant (p<0.001). There was a significant difference between the groups with and without low back pain in terms of HADS-Anxiety and HADS-Depression subscale scores. CONCLUSION: The study findings indicated that being a hospital worker is a risk factor for low back pain, and the decrease in the strength and endurance of the lower back muscles increases the risk of low back pain.

Prediction of COVID-19 patients' participation in financing informal care using machine learning methods: willingness to pay and willingness to accept approaches.

BACKGROUND: Informal care plays an essential role in managing the COVID-19 pandemic. Expanding health insurance packages that reimburse caregivers' services through cost-sharing policies could increase financial resources. Predicting payers' willingness to contribute financially accurately is essential for implementing such a policy. This study aimed to identify the key variables related to WTP/WTA of COVID-19 patients for informal care in Sanandaj city, Iran. METHODS: This cross-sectional study involved 425 COVID-19 patients in Sanandaj city, Iran, and 23 potential risk factors. We compared the performance of three classifiers based on total accuracy, specificity, sensitivity, negative likelihood ratio, and positive likelihood ratio. RESULTS: Findings showed that the average total accuracy of all models was over 70%. Random trees had the most incredible total accuracy for both patient WTA and patient WTP(0.95 and 0.92). Also, the most significant specificity (0.93 and 0.94), sensitivity (0.91 and 0.87), and the lowest negative likelihood ratio (0.193 and 0.19) belonged to this model. According to the random tree model, the most critical factor in patient WTA were patient difficulty in personal activities, dependency on the caregiver, number of caregivers, patient employment, and education, caregiver employment and patient hospitalization history. Also, for WTP were history of COVID-19 death of patient's relatives, and patient employment status. CONCLUSION: Implementing of a more flexible work schedule, encouraging employer to support employee to provide informal care, implementing educational programs to increase patients' efficacy, and providing accurate information could lead to increased patients' willingness to contribute and finally promote health outcomes in the population.

[Home support for vulnerable older people: from shared decision-making to negotiation : A qualitative pilot study]. / L'accompagnement à domicile de personnes âgées vulnérables : de la prise de décision partagée à la négociation : Une étude qualitative pilote.

Shared decision-making allows older people to discuss and change their care with informal caregivers and healthcare professionals. When opinions differ, an older person's decision-making ability can be compromised by many factors. The objective of this qualitative pilot study was to study the dynamics of shared decision-making in home care support for vulnerable older people. Observations were carried out at the older people's homes during appointments with the network's healthcare professionals. Semi structured interviews were then conducted with older people, caregivers and healthcare professionals observed. When opinions differ, negotiation dynamics then develop between older people, caregivers and healthcare professionals. Using a dedicated negotiation framework, we identified four types of negotiation between the stakeholders in home care decision-making, influenced by various articulations of individual, collective and environmental factors.

Dehumanization and Minimization of Informal Caregivers Suffering: The Legitimizing Role of Justice Perceptions.

Informal caregivers, who provide unpaid care work to individuals with disabilities, are devalued despite their important contributions to society. Identifying the factors contributing to their devaluation is crucial for recognizing and valuing their work. In two experimental studies, we examined (a) whether informal caregivers are dehumanized; (b) the moderating impact of belief in a just world (BJW) on this process; and (c) the predictive impact of BJW and the dehumanization of informal caregivers on the perception of informal caregivers' suffering. In Study 1 (N = 180), a 2 (informal caregiver vs. non-caregiver) X 2 (female vs. male) between-participants design was used; in Study 2 (N = 205), there were two experimental conditions: female informal caregiver vs. male informal caregiver. Participants were randomly assigned to one description of a target and were asked to complete measures assessing the dehumanization of the target (Studies 1 and 2), the perception of the suffering of the target (Study 2), and a measure of BJW referring to themselves (Study 2). Results showed the expected dehumanization effect, such that participants attributed fewer uniquely human emotions to informal caregivers compared to non-caregivers, regardless of their gender (Studies 1 and 2). However, this effect was observed only among participants with higher BJW (Study 2). Furthermore, BJW and the dehumanization of informal caregivers predicted the minimization of the perception of informal caregivers' suffering (Study 2). These results establish a theoretical relationship between these research areas and offer insights for practical implications and future research.

Psychological distress among family caregivers of persons with Alzheimer's disease and related dementias in Uganda.

BACKGROUND: Alzheimer's disease and related dementias (ADRD) present growing global health challenges, especially in aging populations, such as Uganda. In Uganda, familial caregiving, predominantly undertaken by female relatives, is the primary form of support provided to patients with ADRD. Cultural stigma around dementia and limited access to support services amplify caregivers' challenges. This study examined psychological distress, depression, and quality of life (QoL) among family caregivers of patients with ADRD in Wakiso District, Uganda. METHODS: This cross-sectional study involved 90 caregivers from three sub-counties in Wakiso, selected through purposive sampling to capture diverse experiences. Participants included caregivers aged 18 years and older who were knowledgeable and had cared for a person with ADRD for not less than six months, with those providing more than 70% of physical care being prioritised. Data were collected using the Kessler Psychological Distress Scale, the Caregiver Dementia Quality of Life Measurement Scale, and the Center for Epidemiologic Studies Depression Scale, with an 80% response rate achieved through local collaboration. The statistical analyses focused on psychological distress, QoL, and depression. RESULTS: The study included 82.2% females and 17.8% males, with a median age of 52 years for females and 35 years, respectively. Females were more likely to be single or widowed, whereas males were more likely to be married. The study revealed a high prevalence of psychological distress and depression among caregivers (64.4%) regardless of sex. The analysis indicated that having children was a significant predictor of better QoL (OR 3.04, 95% CI 1.79-5.66, p = 0.034) and a lower risk of depression (OR 0.10, 95% CI 0.01-0.86, p = 0.036). No other sociodemographic factors were significantly associated with health outcomes across the models. CONCLUSION: Our findings revealed a heavy burden of psychological distress and depression among Ugandan caregivers of patients with ADRD, highlighting the need for structured support systems, including mental health services and gender-responsive interventions in low-resource settings.

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) comprise < 1% of the pediatric population, but account for nearly one-third of healthcare expenditures. Further, while CMC account for up to 80% of pediatric inpatient hospital costs, only 2% of Medicaid spending is attributed to home healthcare. As a result, the current health system heavily relies on family caregivers to fill existing care gaps. This study aimed to: (1) examine factors associated with hospital admissions among CMC and (2) contextualize the potential for home nursing care to improve outcomes among CMC and their families in South Carolina (SC). METHODS: This mixed-methods study was conducted among CMC, their family caregivers, and physicians in SC. Electronic health records data from a primary care clinic within a large health system (7/1/2022-6/30/2023) was analyzed. Logistic regression examined factors associated with hospitalizations among CMC. In-depth interviews (N = 15) were conducted among physicians and caregivers of CMC statewide. Patient-level quantitative data is triangulated with conceptual findings from interviews. RESULTS: Overall, 39.87% of CMC experienced ≥ 1 hospitalization in the past 12 months. CMC with higher hospitalization risk were dependent on respiratory or neurological/neuromuscular medical devices, not non-Hispanic White, and demonstrated higher healthcare utilization. Interview findings contextualized efforts to reduce hospitalizations, and suggested adaptations related to capacity and willingness to provide complex care for CMC and their families. CONCLUSIONS: Findings may inform multi-level solutions for accessible, high-quality home nursing care among CMC and their families. Providers may learn from caregivers' insight to emphasize family-centered care practices, acknowledging time and financial constraints while optimizing the quality of medical care provided in the home.

Translation to Portuguese and cross-cultural adaptation of the epilepsy transition readiness checklist for use in Brazil.

OBJECTIVES: Planning for the child and adolescent to have a safe handling in the epilepsy transition process is essential. In this work, the authors translated the "Readiness Checklists" and applied them to a group of patients and their respective caregivers in the transition process to assess the possibility of using them as a monitoring and instructional instrument. METHODS: The "Readiness Checklists" were applied to thirty adolescents with epilepsy and their caregivers. The original English version of this instrument underwent a process of translation and cultural adaptation by a translator with knowledge of English and epilepsy. Subsequently, it was carried out the back-translation and the Portuguese version was compared to the original, analyzing discrepancies, thus obtaining the final version for the Brazilian population. RESULTS: Participants were able to answer the questions. In four questions there was an association between the teenagers' educational level and the response pattern to the questionnaires. The authors found a strong positive correlation between the responses of adolescents and caregivers (RhoSpearman = 0.837; p < 0.001). The application of the questionnaire by the health team was feasible for all interviewed patients and their respective caregivers. CONCLUSION: The translation and application of the "Readiness Checklists" is feasible in Portuguese. Patients with lower educational levels felt less prepared for the transition than patients with higher educational levels, independently of age. Adolescents and caregivers showed similar perceptions regarding patients' abilities. The lists can be very useful tools to assess and plan the follow-up of the population of patients with epilepsy in the process of transition.

Motivators for family carers of persons with dementia in Kenya.

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

Experiences of family carers in providing care to children with intellectual disabilities in India: A qualitative evidence synthesis.

BACKGROUND: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. METHODS: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach. RESULTS: The synthesis found five themes representing family carers' experiences and perspectives. These were 'resilience and acceptance', 'parental response', 'care dynamic', 'preparing for transition to adulthood' and 'parental advocacy'. CONCLUSION: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.

Impact of family and caregiver factors on development and behaviours in maltreated young children.

Introduction: This study aimed to evaluate the prevalence of developmental and emotional/ behavioural concerns in maltreated children and to examine the impact of adverse family/caregiver risk factors on these outcomes. Method: We analysed family demographic and baseline data of 132 maltreated children and their caregivers from a family support programme in Singapore. We examined the associations of 3 main risk factors (i.e., caregiver mental health, educational attainment, and family socio-economic status [SES]) with developmental/behavioural outcomes using multivariable logistic regression, controlling for caregiver relationship to the child. Caregiver mental health was assessed using the Patient Health Questionnaire 9 (PHQ-9) and General Anxiety Disorder 7 (GAD-7) tools. Developmental/behavioural outcomes were assessed using the Ages and Stages Questionnaires (ASQ-3), ASQ-Social-Emotional (ASQ-SE), and the Child Behaviour Checklist (CBCL). Results: The children ranged in age, from 2 months to 3 years 11 months (median age 1.7 years, interquartile range [IQR] 0.9-2.6). Among caregivers, 86 (65.2%) were biological mothers, 11 (8.3%) were biological fathers, and 35 (26.5%) were foster parents or extended family members. Low family SES was associated with communication concerns on the ASQ-3 (adjusted odds ratio [AOR] 3.04, 95% CI 1.08-8.57, P=0.04). Caregiver mental health concerns were associated with increased behavioural concerns on the CBCL (AOR 6.54, 95% CI 1.83-23.33, P=0.004) and higher scores on the ASQ-SE (AOR 7.78, 95% CI 2.38-25.38, P=0.001). Conclusion: Maltreated children with caregivers experiencing mental health issues are more likely to have heightened emotional and behavioural concerns. Those from low SES families are also at increased risk of language delay, affecting their communication.

Comprehensive insights into health services accessibility and quality of life of families with individuals with 22q11.2 deletion syndrome in Brazil.

BACKGROUND: The 22q11.2 Deletion Syndrome (22q11.2 DS) presents unique healthcare challenges for affected individuals, families, and healthcare systems. Despite its rarity, 22q11.2 DS is the most common microdeletion syndrome in humans, emphasizing the need to understand and address the distinctive healthcare requirements of those affected. This paper examines the multifaceted issue of health service access and caregivers' quality of life in the context of 22q11.2 DS in Brazil, a condition with diverse signs and symptoms requiring multidisciplinary care. This study employs a comprehensive approach to evaluate health service accessibility and the quality of life of caregivers of individuals with 22q11.2 DS. It utilizes a structured Survey and the WHOQOL-bref questionnaire for data collection. RESULTS: Individuals with 22q11.2 DS continue to receive incomplete clinical management after obtaining the diagnosis, even in the face of socioeconomic status that enabled an average age of diagnosis that precedes that found in sample groups that are more representative of the Brazilian population (mean of 3.2 years versus 10 years, respectively). In turn, caring for individuals with 22q11.2 DS who face difficulty accessing health services impacts the quality of life associated with the caregivers' environment of residence. CONCLUSIONS: Results obtained help bridge the research gap in understanding how caring for individuals with multisystem clinical conditions such as 22q11.2 DS and difficulties in accessing health are intertwined with aspects of quality of life in Brazil. This research paves the way for more inclusive healthcare policies and interventions to enhance the quality of life for families affected by this syndrome.

'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.

BACKGROUND: To explore carers' experiences of behavioural symptoms in Motor Neurone Disease (MND), before and after using the MiNDToolkit, a novel internet-based psychoeducational intervention to support management of behavioural symptoms (BehSymp) in MND. The study also investigated carers' views and acceptability of MiNDToolkit. METHODS: A qualitative process evaluation of carers engagement with, and acceptability of, the MiNDToolkit conducted using semi-structured interviews with carers (n = 11). All interviews were audio-recorded, professionally transcribed verbatim and analysed thematically. RESULTS: Five themes were identified: (1) In the dark: carers' experiences and reactions to BehSymp; (2) Others can see: the role of HCPs in identifying symptoms - and perceived opportunities for carers to receive support; (3) Shedding light: carers implementation and perceived impact of the MiNDToolkit content; (4) Acceptability and carers' engagement with MiNDToolkit; (5) Future implementation. Carers' experience of BehSymp was particularly distressing when symptoms were apparently out of context. MiNDToolkit appeared to support learning that BehSymp were part of MND. Content resonated with carers, who reported learning about the full picture of MND, which led to acceptance and use of newly learned strategies. Engagement with the platform was good, with varied input from HCPs. Greater and nuanced involvement from HCPs seem important to support management of BehSymp. Recommendations for a full-scale trial emerged, including adding a paper booklet to accompany the intervention and creation of new modules on emotional lability, changes in relationships, and transitioning to a care home. CONCLUSIONS: MiNDToolkit was acceptable to carers overall. Recommended improvements should be actioned in a full-scale trial.

Death anxiety among caregivers of patients with advanced cancer: a cross-sectional survey.

PURPOSE: This study aimed to investigate death anxiety (DA) in caregivers of patients with advanced cancer and identify associated factors in the context of Chinese culture. METHODS: Caregivers (N = 588) of advanced cancer patients in a tertiary cancer hospital completed anonymous questionnaire surveys. Measures included the Chinese version of the Templer Death Anxiety Scale (C-T-DAS), the Quality-of-Life Scale, the State-Trait Anxiety Scale, and the Social Support Rating Scale. Data were analyzed in SPSS (IBM Corp, Armonk, NY, USA) using descriptive statistics, Pearson's correlation test, and linear regression. RESULTS: Respondents returned 588 (93.03%) of the 632 questionnaires. The total C-T-DAS score was 7.92 ± 2.68 points. The top-scoring dimension was "Stress and pain" (3.19 ± 1.29 points), followed by "Emotion" (2.28 ± 1.31 points) and "Cognition" (1.40 ± 0.94 points). In contrast, the lowest-scoring dimension was "Time" (1.06 ± 0.77 points). Factors associated with DA (R2 = 0.274, F = 13.348, p < 0.001) included quality of life (QoL), trait anxious personality, social support, caregiver length of care, caregiver gender, and patients' level of activities of daily living (ADL). CONCLUSIONS: Our results demonstrated high levels of DA in caregivers of patients with advanced cancer. Generally, female caregivers and those with low social support had high DA. Caregivers caring for patients with low ADL levels or with a low QoL and trait anxious personality reported high DA. Certain associated factors help to reduce caregivers DA. Social interventions are recommended to improve the end-of-life transition and trait anxious personality as well as quality of life for caregivers.

Improving Parental Health Literacy in Primary Caregivers of 0- to 3-Year-Old Children Through a WeChat Official Account: Cluster Randomized Controlled Trial.

Background: Parental health literacy is important to children's health and development, especially in the first 3 years. However, few studies have explored effective intervention strategies to improve parental literacy. Objective: This study aimed to determine the effects of a WeChat official account (WOA)-based intervention on parental health literacy of primary caregivers of children aged 0-3 years. Methods: This cluster randomized controlled trial enrolled 1332 caregiver-child dyads from all 13 community health centers (CHCs) in Minhang District, Shanghai, China, between April 2020 and April 2021. Participants in intervention CHCs received purposefully designed videos via a WOA, which automatically recorded the times of watching for each participant, supplemented with reading materials from other trusted web-based sources. The contents of the videos were constructed in accordance with the comprehensive parental health literacy model of WHO (World Health Organization)/Europe (WHO/Europe). Participants in control CHCs received printed materials similar to the intervention group. All the participants were followed up for 9 months. Both groups could access routine child health services as usual during follow-up. The primary outcome was parental health literacy measured by a validated instrument, the Chinese Parental Health Literacy Questionnaire (CPHLQ) of children aged 0-3 years. Secondary outcomes included parenting behaviors and children's health outcomes. We used the generalized linear mixed model (GLMM) for data analyses and performed different subgroup analyses. The ß coefficient, risk ratio (RR), and their 95% CI were used to assess the intervention's effect. Results: After the 9-month intervention, 69.4% (518/746) of caregivers had watched at least 1 video. Participants in the intervention group had higher CPHLQ total scores (ß=2.51, 95% CI 0.12-4.91) and higher psychological scores (ß=1.63, 95% CI 0.16-3.10) than those in the control group. The intervention group also reported a higher rate of exclusive breastfeeding (EBF) at 6 months (38.9% vs 23.44%; RR 1.90, 95% CI 1.07-3.38) and a higher awareness rate of vitamin D supplementation for infants younger than 6 months (76.7% vs 70.5%; RR 1.39, 95% CI 1.06-1.82). No significant effects were detected for the physical score on the CPHLQ, breastfeeding rate, routine checkup rate, and children's health outcomes. Furthermore, despite slight subgroup differences in the intervention's effects on the total CPHLQ score and EBF rate, no interaction effect was observed between these subgroup factors and intervention factors. Conclusions: Using a WHO literacy model-based health intervention through a WOA has the potential of improving parental health literacy and EBF rates at 6 months. However, innovative strategies and evidence-based content are required to engage more participants and achieve better intervention outcomes.

Assessment of perceived patient comfort and ease of bedpan handling by caregivers, a cross-sectional survey.

INTRODUCTION: Since its creation in the 18th century, bedpan has remained more or less the same. Its unique material composition varies from one model to another, but its shape remains relatively similar. The environment is one of the four pillars of the nursing paradigm. It is therefore essential to question this device in the nursing discipline. AIM: To assess perceived patient comfort and ease of bedpan handling by nurses and their assistants. METHOD: A cross-sectional survey via an online questionnaire was conducted among nurses and nursing assistants, nursing students, and health executives using the bedpan for their patients to assess their feelings and their level of satisfaction. The questionnaire asks professionals about the ease of handling the bedpan and the patient's perceived comfort. RESULTS: 431 responses were obtained out of 3007 persons interviewed (14.3%). 83.0% believe that the cause of poor elimination by the patient is often or very often due to physical discomfort on the bedpan. 62.6% find the installation of the bedpan rather tough or very difficult. 59.2% find the removal of the bedpan rather tough or very difficult. DISCUSSION: Our study confirms our hypothesis and highlights a lack of comfort in the bedpan as perceived by professionals. This analysis is the first step in enabling the nurse researcher to support change in the transformation paradigm.

Outcomes of prognostication in people living with advanced cancer: A qualitative study to inform a Core Outcome Set.

BACKGROUND: Studies of prognostication in advanced cancer use a wide range of outcomes and outcome measures, making it difficult to compare these studies and their findings. Core Outcome Sets facilitate comparability and standardisation between studies and would benefit future prognostic research. This qualitative study, the second step in a wider study developing such a Core Outcome Set, aimed to explore the perceptions and experiences of patients with advanced cancer, informal caregivers, and clinicians regarding the potential outcomes to assess the impact of prognostication. METHODS: We conducted semi-structured interviews with patients living with advanced cancer (n = 8), informal caregivers (n = 10), and clinicians (n = 10) recruited from palliative care services across three sites in London, United Kingdom. Interviews were conducted in-person, via telephone, or video conferencing, and were audio-recorded. Data were analysed using framework analysis. Findings were compared with outcomes identified in a previously published systematic review. RESULTS: We identified 33 outcomes, 16 of which were not previously reported in the literature. We grouped these outcomes into 10 domains, nine from the COMET taxonomy, plus a tenth domain (spiritual/religious/existential functioning/wellbeing) which we added further to the previous systematic review. These findings highlighted discrepancies between the priorities of existing research and those of stakeholders. Novel outcomes highlight the more personal and emotional impacts of prognostication, whilst other outcomes confirm the relevance of survival length, depression, anxiety, pain, hope dynamics, emotional distress, and the quality of patient-clinician relationships for assessing the impact of prognostication. CONCLUSIONS: This study offers valuable insights into outcomes which matter to key stakeholders, particularly patients and informal caregivers, highlights discrepancies between their priorities and those identified in previous studies, and underscores the need for a patient-centred approach in research and clinical practice in prognostication in advanced cancer. This work will contribute to developing a Core Outcome Set for assessing the impact of prognostication in advanced cancer.

Acceptability and preliminary effects of the volunteer-supported Meaningful Moments program to engage older adults with advanced dementia on a hospital-based specialized dementia care unit: a mixed methods study.

BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.

A qualitative study of maternal and paternal parenting knowledge and practices in rural Mozambique.

BACKGROUND: Providing nurturing care for young children is essential for promoting early child development (ECD). However, there is limited knowledge about how mothers and fathers across diverse contexts in sub-Saharan Africa care for their children and from whom they receive guidance and support in their caregiving roles. We aimed to examine caregivers' nurturing care practices and sources of parenting knowledge in rural Mozambique. METHODS: This is a secondary analysis using data from a qualitative evaluation of a pilot intervention to improve nurturing care for early child health and development within existing health systems. The evaluation was conducted across three primary care health facilities and their catchment areas in Nampula province, Mozambique. For this study, we analyzed data from in-depth interviews conducted with 36 caregivers (32 mothers and 4 fathers) to investigate mothers' and fathers' daily caregiving experiences. Data were analyzed using thematic content analysis. RESULTS: Caregivers described various caregiving roles relating to general caregiving of young children (e.g., feeding, bathing, caring for child's health) and stimulation (e.g., play and communication) activities. Mothers more commonly engaged in general caregiving activities than fathers, whereas both mothers and fathers engaged in stimulation activities. Other family members, including siblings, grandparents, and aunts/uncles, were also actively engaged in general caregiving activities. With respect to sources of parenting knowledge, caregivers received parenting guidance and support primarily from their own mothers/parents and facility-based health providers. CONCLUSIONS: These findings highlight the importance of adopting a holistic approach involving caregivers and their context and reveal potential strategies to promote caregiving and ECD in rural Mozambique and similar contexts.

Validation of a German version of the caregiver strain questionnaire-short form 11 (CGSQ-SF11).

OBJECTIVE: Caring for a child, particularly one with special healthcare needs, is a demanding task that can lead to the experience of caregiver strain. This in turn has an effect on the caregiver's mental health, as well as on the child and his or her treatment. To enable the identification of afflicted parents, this study aims to provide a German version of the Caregiver Strain Questionnaire-Short Form 11 (CGSQ-SF11) and to examine its factor structure and psychometric properties. METHODS: Data from 698 caregivers were included in the analyses. Caregivers completed the CGSQ-SF11 along with measures of parenting stress (PSI-SF), stress (PSS-10), anxiety (GAD-7), depression (PHQ-8), family-related quality of life (FLQ), and social desirability (SES-17) as additional instruments for validation. A two-week follow-up questionnaire included only the CGSQ-SF11. Exploratory factor analysis followed by a confirmatory factor analysis was conducted for parents of children with and without special healthcare needs, separately. Further analyses examined the validity and reliability of the instrument. RESULTS: For parents of children with special healthcare needs, a three-factor structure (objective, internalized subjective, externalized subjective strain) with a second-order factor (caregiver strain) was supported. For parents of children without special healthcare needs, a similar three-factor structure was found, although the second-order factor was not supported. Measurement invariance between the two groups was not confirmed. Internal consistency, test-retest reliability, and validity were largely supported in both groups. CONCLUSIONS: The results indicate that the German version of the CGSQ SF-11 is a valid and reliable questionnaire for measuring caregiver strain.