"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.

BACKGROUND: Informal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention "Being an informal caregiver - strengthening resources" aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs. METHODS: In this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design. RESULTS: Of 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified. CONCLUSIONS: This pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention "Being an informal caregiver - strengthening resources". Further research is needed to measure the efficacy of this intervention on informal caregivers' outcomes. Therefore, a multicentre randomized prospective study is planned.

The feasibility of an adapted virtual mindfulness intervention for Special Olympics athletes and their caregivers.

BACKGROUND: Virtual mindfulness may be helpful for individuals with intellectual disabilities in the context of COVID-related disruptions of in-person programming, such as Special Olympics (SO). This study examined the feasibility of a virtual mindfulness intervention for SO athletes and their caregivers. METHOD: SO athletes (n = 44) and their caregivers (n = 29) participated in a 6-week adapted virtual mindfulness intervention. Athletes completed mindfulness and well-being questionnaires prior to, immediately following, and 3-months post-intervention. Caregivers completed questionnaires assessing their own stress, mindfulness, and well-being, as well as athlete mental health. Exit interviews were conducted immediately following the intervention. RESULTS: The intervention was feasible in terms of demand, implementation, acceptability, and limited testing efficacy. There were significant improvements in athlete well-being and mental health, and caregiver stress and mindfulness post-intervention. CONCLUSIONS: Adapted virtual mindfulness groups may be an effective intervention in improving the well-being of adults with intellectual disabilities and their caregivers.

Care-receivers with physical disabilities' perceptions on having humanoid assistive robots as assistants: a qualitative study.

BACKGROUND: People with physical disabilities due to disease or injury face barriers to their daily activities and participation in society. Many depend on formal or informal caregivers for assistance to live independently. However, future healthcare challenges due to demographic changes threaten access to home care and assistants. Assistive technologies, such as robots for physical assistance, can support the independence and autonomy of people with physical disabilities. This study explore Norwegian care-receivers' perceptions of using robot assistance in their homes, including preferences for tasks acceptable or unacceptable for robot assistance and the underlying reasons. METHOD: Purposive sampling was employed to recruit 18 participants, aged between 18 and 77 years, with differences in physical function including diagnoses such as stroke, spinal cord injury, amputations, and muscular dystrophy. Qualitative data were gathered through four focus group interviews wherein participants watched videos featuring a humanoid assistive robot, EVEr3. The collected data underwent analysis using reflexive thematic analysis. RESULTS: Three themes with associated sub-themes were constructed: (a) How a robot could assist in daily life, (b) The robot's appearance and functionality, and (c) Concerns about having a robot as an assistant. The participants welcomed the idea of a future robotic assistant in areas that may contribute to an increased feeling of independence and autonomy. CONCLUSION: A robot assisting in activities of daily living would need to be individually customized to meet the needs of each user in terms of which tasks to assist with, how to assist in these defined tasks, and how it is controlled.

Development and validation of a patient reported experience measure for experimental cancer medicines (PREM-ECM) and their carers (PREM-ECM-Carer).

BACKGROUND: Our aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM. METHODS: Mixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility. RESULTS: Initial interview participants suggested the need for three PREMs, two specific to patients: (i) a 'prior' questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) 'on-trial' that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item 'prior' questionnaire was completed by 162 patients and 162 patients completed the draft 35-item 'on-trial' questionnaire. Hierarchical and Rasch analysis produced a 14-item 'prior' list and a 15-item list for 'on-trial'. Both patient PREM's demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings. CONCLUSIONS: The three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients' and their carers' experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.

Effectiveness of a videoconferencing group-based dyad acceptance and commitment therapy on the quality of life of chronic heart failure patients and their family caregivers: A study protocol for a randomized controlled trial.

BACKGROUND: Chronic heart failure (CHF) poses a significant burden on both patients and their family caregivers (FCs), as it is associated with psychological distress and impaired quality of life (QOL). Acceptance and Commitment Therapy (ACT) supports QOL by focusing on value living and facilitates acceptance of psychological difficulties by cultivating psychological flexibility. A protocol is presented that evaluates the effectiveness of a dyad ACT-based intervention delivered via smartphone on QOL and other related health outcomes compared with CHF education only. METHODS: This is a single-center, two-armed, single-blinded (rater), randomized controlled trial (RCT). One hundred and sixty dyads of CHF patients and their primary FCs will be recruited from the Cardiology Department of a hospital in China. The dyads will be stratified block randomized to either the intervention group experiencing the ACT-based intervention or the control group receiving CHF education only. Both groups will meet two hours per week for four consecutive weeks in videoconferencing sessions over smartphone. The primary outcomes are the QOL of patients and their FCs. Secondary outcomes include psychological flexibility, psychological symptoms, self-care behavior, and other related outcomes. All outcomes will be measured by blinded outcome assessors at baseline, immediately post-intervention, and at the three-month follow-up. Multilevel modeling will be conducted to assess the effects of the intervention. DISCUSSION: This study is the first to adopt an ACT-based intervention for CHF patient-caregiver dyads delivered in groups via smartphone. If effective and feasible, the intervention strategy and deliverable approach could be incorporated into clinical policies and guidelines to support families with CHF without geographic and time constraints. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04917159. Registered on 08 June 2021.

Between equilibrium and chaos, with little restitution: a narrative analysis of qualitative interviews with clinicians and parent carers of children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) comprise 1% of the paediatric population, but account for over 30% of health service costs. Lack of healthcare integration and coordination for CMC is well-documented. To address this, a deep understanding of local contextual factors, experiences, and family-identified needs is crucial. The aim of this research was to investigate the lived experiences of CMC, their families, and healthcare staff, focusing on understanding the dynamics of care coordination and the challenges faced in providing integrated care, in order to inform the development of effective, family-centred models of care. METHODS: In April to July 2022, 31 semi-structured interviews were conducted with parents/guardians of CMC and healthcare professionals who care for CMC. Interviews explored complex paediatric care and care coordination barriers. An inductive thematic analysis was undertaken. Themes were then further explored using Frank's narrative approach. RESULTS: Through analysis, we identified that the restitution typology was absent from both staff and parent/guardian narratives. However, we uncovered narratives reflective of the chaos and quest typologies, depicting overwhelming challenges in managing complex medical needs, and proactive efforts to overcome barriers. Importantly, a novel typology termed 'equilibrium' was uncovered. Narratives aligning with this typology described medical complexity as a balance of power and a negotiation of roles. Within the equilibrium typology, illness trajectory was described as a series of negotiations or balancing acts between healthcare stakeholders, before finally reaching equilibrium. Participants described seeking a balance, where their expertise is respected, whilst maintaining the ability to rely on professional guidance and support. These insights provide a nuanced understanding of the multifaceted narratives shaping care experiences for CMC and their families. CONCLUSIONS: Our research delineates multifaceted challenges within the care landscape for CMC, their families, and healthcare staff. Embracing the equilibrium narrative typology highlights the criticality of tailored, integrated care models. This necessitates prioritising clear role delineation and communication among caregivers, implementing support systems addressing the challenges of continuous caregiving, and integrating parents/guardians as essential members of the care team. These insights advocate for pragmatic and sustainable strategies to address the unique needs of CMC and their families within healthcare systems.

Informal carers' experiences in everyday life and the use of digital assistive technology for time management in persons with dementia or mild cognitive impairment.

BACKGROUND: Digital assistive technology (DAT) may support time management in people with dementia or mild cognitive impairment (MCI), but research on DAT for time management is limited. We aimed to explore how everyday could be supported by DAT for time management in persons with dementia or MCI from informal carers' perspectives. This study focused on a DAT device for time management called MEMOplanner (MMP). METHOD: Using a mixed-methods design, we utilized the Time-Proxy© questionnaire and a study-specific interview guide to investigate the perspectives of informal carers (n = 8) regarding the use of MMP by individuals with dementia or MCI. RESULT: The MMP was helpful in keeping track of time and activity. It helped to maintain an active lifestyle and facilitated communication. However, the MMP did not reduce the need for assistance from the informal carers, and it took time to learn the different functions of the device. Further research into employing a more extensive array of DAT for time management or other areas to assist individuals with dementia will yield valuable insights into enhancing and sustaining a higher quality of life despite cognitive decline.

There is 'no cure for caregiving': the experience of women caring for husbands living with Parkinson's disease.

BACKGROUND: Parkinson's disease is a progressive neurodegenerative disorder. The majority of the nearly 9 million people living with Parkinson's disease are men. As such, caregiving is often assumed by wives as the disease progresses. However, there is little research about the lived experience of wives as they transition to caregivers. OBJECTIVE: To describe the lived experience of wife caregivers of male spouses living at home with Parkinson's disease. METHODS: A descriptive phenomenological study. Semi-structured interviews were recorded and transcribed for analysis in Atlas.ti using Colaizzi's method. RESULTS: Thirteen women, aged 50 to 83 years, were interviewed. Five themes emerged from the analysis, (1) caregiver who? (2) taking it day by day, (3) not sure what to do next, (4) just too much, and (5) caring is your soul's growth, to support the central theme "there is no cure for caregiving." CONCLUSION: Transitioning from wife to caregiver was a gradual but difficult process. Although the wife caregivers wanted to be part of the health care team, they remained outsiders. Clinicians need to recognize the wives as care coordinators linking medical management with home care. Policy makers need to develop reimbursement models that provide wife caregivers with support groups, education programs, and telemental health services.

Parenting style and child mental health at preschool age: evidence from rural China.

BACKGROUND: Mental health problems among children at preschool age are a common issue across the world. As shown in literature, a caregiver's parenting style can play a critical role in child development. This study aims to examine the associations between a caregiver's parenting style and the mental health problems (or not) of their child when he/she is at preschool age in rural China. METHODS: Participants were children, aged 49 to 65 months, and their primary caregivers. The primary caregivers of the sample children completed the Parenting Styles and Dimensions Questionnaire, Short Version, the Strengths and Difficulties Questionnaire, and a questionnaire that elicited their socio-demographic characteristics. The level of cognitive development of each sample child was assessed using the Wechsler Preschool and Primary Scale of Intelligence, Fourth Edition. Pearson correlation analysis, linear regression analysis, and multivariable regression analysis were used to analyze the data. RESULTS: The prevalence of mental health problems among sample children at preschool age was high (31.6%). If a caregiver practices an authoritative parenting style, it was found to be negatively associated with the mental health problems of their child. In contrast, a caregiver's authoritarian parenting style was positively associated with the mental health problems of their child. Compared to those in a subgroup of primary caregivers that used a combination of low authoritative and low authoritarian parenting style, primary caregivers that used a combination of high authoritarian and low authoritative or a combination of high authoritative and high authoritarian were found to have positive association with child health problems. A number of demographic characteristics were found to be associated with the adoption of different parenting styles. CONCLUSION: Different parenting styles (including authoritative, authoritarian, and combination of authoritative and authoritarian) of the sample caregivers had different associations with the mental health problems of the sample children. Parenting programs that aim to improve the parenting styles (favoring authoritative parenting styles) should be promoted in an effort to improve the status of child mental health in rural China.

Feasibility and acceptability of NIDUS-professional, a training and support intervention for homecare workers caring for clients living with dementia: a cluster-randomised feasibility trial.

INTRODUCTION: In the first randomised controlled trial of a dementia training and support intervention in UK homecare agencies, we aimed to assess: acceptability of our co-designed, manualised training, delivered by non-clinical facilitators; outcome completion feasibility; and costs for a future trial. METHODS: This cluster-randomised (2:1) single-blind, feasibility trial involved English homecare agencies. Intervention arm agency staff were offered group videocall sessions: 6 over 3 months, then monthly for 3 months (NIDUS-professional). Family carers (henceforth carers) and clients with dementia (dyads) were offered six to eight complementary, individual intervention sessions (NIDUS-Family). We collected potential trial measures as secondary outcomes remotely at baseline and 6 months: HCW (homecare worker) Work-related Strain Inventory (WRSI), Sense of Competence (SoC); proxy-rated Quality of Life (QOL), Disability Assessment for Dementia scale (DAD), Neuropsychiatric Inventory (NPI) and Homecare Satisfaction (HCS). RESULTS: From December 2021 to September 2022, we met agency (4 intervention, 2 control) and HCWs (n = 62) recruitment targets and recruited 16 carers and 16/60 planned clients. We met a priori progression criteria for adherence (≥4/6 sessions: 29/44 [65.9%,95% confidence interval (CI): 50.1,79.5]), HCW or carer proxy-outcome completion (15/16 (93.8% [69.8,99.8]) and proceeding with adaptation for HCWs outcome completion (46/63 (73.0% [CI: 60.3,83.4]). Delivery of NIDUS-Professional costs was £6,423 (£137 per eligible client). WRSI scores decreased and SoC increased at follow-up, with no significant between-group differences. For intervention arm proxy-rated outcomes, carer-rated QOL increased, HCW-rated was unchanged; carer and HCW-rated NPI decreased; DAD decreased (greater disability) and HCS was unchanged. CONCLUSION: A pragmatic trial is warranted; we will consider using aggregated, agency-level client outcomes, including neuropsychiatric symptoms.

Booklet and Motivational Interviewing to Promote Self-efficacy in Parents/Caregivers of Children with Asthma: A Clinical Trial.

Background: Asthma is the most common chronic disease in childhood which accounts for numerous annual hospitalizations due to a lack of management and proper management of the disease. Thus, this study aimed to evaluate the effect of using an educational booklet with or without combination with motivational interviewing (MI) on the self-efficacy of parents/caregivers in the control and management of childhood asthma. Methods: A clinical trial was carried out with 86 parents/caregivers of children with asthma aged between 2 and 12 years who were followed up in primary health care units from March 2019 to December 2020. Participants were randomly assigned to two groups: one of the groups read the booklet and the other read the booklet combined with the MI. The Brazilian version of the Self-Efficacy and Their Child's Level of Asthma Control scale was applied before and 30 days after the intervention for assessment of self-efficacy. Data were analyzed using SPSS version 20.0 and R 3.6.3 software. P values<0.05 were considered significant. Results: There were 46 participants in the booklet group and 40 in the booklet and MI group. Both groups were effective in increasing total self-efficacy scores after the intervention (P<0.001). No statistically significant difference was found between the scores of the two groups (P=0.257). Conclusion: The educational booklet with or without combination with MI can increase the self-efficacy of parents/caregivers of children with asthma. The findings could be considered by healthcare providers for the empowerment of caregivers of children with asthma in the control and management of their children's asthma.Trial Registration Number: U1111-1254-7256.

The role of social support among caregivers of people with cancer from Chinese and Arabic communities: a qualitative study.

PURPOSE: Cancer caregivers from culturally and linguistically diverse (CALD) communities have reported significant unmet emotional support needs. This study aimed explore the role of social support to manage emotional wellbeing among cancer caregivers from Arabic and Chinese communities in Australia. METHODS: Semi-structured interviews were conducted with Chinese (n = 12) and Arabic (n = 12) speaking cancer caregivers. Participants' mean age was 40.6 years; majority were female (83%) and providing care to a parent (41.67%). RESULTS: Using thematic analysis to analyse interview data, five overarching themes emerged describing caregivers' perspectives on social support. Themes were related to the following: (1) receiving emotional support from social networks, (2) barriers to accessing emotional support from social networks, (3) isolation and loss of connection following the cancer diagnosis, (4) faith as a source of support, and (5) utility of support groups and caregiver advocates. Several caregivers relied on social networks for emotional support; however, caregivers identified key cultural and generational barriers to seeking support from their social networks which prevented caregivers from disclosing their emotions and caregiving situation. Caregivers also reported being isolated from their support system. CONCLUSION: Empirical testing of culturally appropriate strategies that improve social support seeking among caregivers from CALD communities is recommended.

Preferences for Postacute Care at Home vs Facilities.

Importance: Two in 5 US hospital stays result in rehabilitative postacute care, typically through skilled nursing facilities (SNFs) or home health agencies (HHAs). However, a lack of clear guidelines and understanding of patient and caregiver preferences make it challenging to promote high-value patient-centered care. Objective: To assess preferences and willingness to pay for facility-based vs home-based postacute care among patients and caregivers, considering demographic variations. Design, Setting, and Participants: In September 2022, a nationally representative survey was conducted with participants 45 years or older. Using a discrete choice experiment, participants acting as patients or caregivers chose between facility-based and home-based postacute care that best met their preferences, needs, and family conditions. Survey weights were applied to generate nationally representative estimates. Main Outcomes and Measures: Preferences and willingness to pay for various attributes of postacute care settings were assessed, examining variation based on demographic factors, socioeconomic status, job security, and previous care experiences. Results: A total of 2077 adults were invited to participate in the survey; 1555 (74.9%) completed the survey. In the weighted sample, 52.9% of participants were women, 6.5% were Asian or Pacific Islander, 1.7% were American Indian or Alaska Native, 11.2% were Black or African American, 78.4% were White; the mean (SD) age was 62.6 (9.6) years; and there was a survey completion rate of 74.9%. Patients and caregivers showed a substantial willingness to pay for home-based and high-quality care. Patients and caregivers were willing to pay an additional $58.08 per day (95% CI, 45.32-70.83) and $45.54 per day (95% CI, 31.09-59.99) for HHA care compared with a shared SNF room, respectively. However, increased demands on caregiver time within an HHA scenario and socioeconomic challenges, such as insecure employment, shifted caregivers' preferences toward facility-based care. There was a strong aversion to below average quality. To avoid below average SNF care, patients and caregivers were willing to pay $75.21 per day (95% CI, 61.68-88.75) and $79.10 per day (95% CI, 63.29-94.91) compared with average-quality care, respectively. Additionally, prior awareness and experience with postacute care was associated with willingness to pay for home-based care. No differences in preferences among patients and caregivers based on race, educational background, urban or rural residence, general health status, or housing type were observed. Conclusions and Relevance: The findings of this survey study underscore a prevailing preference for home-based postacute care, aligning with current policy trends. However, attention is warranted for disadvantaged groups who are potentially overlooked during the shift toward home-based care, particularly those facing caregiver constraints and socioeconomic hardships. Ensuring equitable support and improved quality measure tools are crucial for promoting patient-centric postacute care, with emphasis on addressing the needs of marginalized groups.

Parental Migration Trajectories From Childhood Through Adolescence: Longitudinal Impact on Emotional and Behavioral Problems Among Chinese Adolescents.

It is estimated that there are about 23% of all children in China experiencing parental migration and being left behind at hometown. Existing research indicated a significant association between parental migration and children development but overlooked the dynamic changes in family structure caused by parental migration. In this study, data was derived from a nationally representative longitudinal survey-the China Family Panel Studies. The main analyses employed four waves of data (2012, 2014, 2016, and 2018) and included 1401 adolescents aged 10-15 years (Mean:12.35, SD:1.67; 54.2% female). Six typical trajectories of parental migration capturing both migration status at each timepoint and changes in the status across six years were created. Children's depression and internalizing problems and externalizing problems were concerned outcomes. The mediating roles of the caregiver-child interaction and caregiver's depression were examined. Adolescents in the trajectory group described as experiencing transitions between being left behind by both parents and non had a higher risk of depression and internalizing and externalizing problems. Caregivers' depression was a significant mediator between parental migration and adolescent depression.

A Web-Based Intervention Based on Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Mixed Methods Feasibility Study.

BACKGROUND: Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. OBJECTIVE: The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. METHODS: A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). RESULTS: A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. CONCLUSIONS: Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2022-070499.

Death education interventions for people with advanced diseases and/or their family caregivers: A scoping review.

BACKGROUND: People with life-threatening diseases and their family caregivers confront psychosocial and spiritual issues caused by the persons' impending death. Reviews of death education interventions in the context of life-threatening diseases are scarce and limited to certain intervention types. AIMS: This study aims to ascertain existing evidence on death education interventions for the population of adults with advanced diseases and/or their family caregivers and identify gaps for future research. DESIGN: A scoping review guided by Arksey and O'Malley's framework. DATA SOURCES: Thirteen electronic databases were searched for experimental and qualitative studies on death education interventions for the advanced disease population and/or their family caregivers between 1 January 1960 and 25 October 2023. RESULTS: Nine types of interventions were identified in 47 studies, which included 5 qualitative and 42 experimental designs, half of which were pilot and feasibility trials. Most of the studies focused on people with advanced cancer, and only seven investigated caregivers or families/couples. Death-related outcomes were less likely to be assessed relative to psychological outcomes, spiritual well-being, and quality of life. Life review interventions, cognitive-behavior therapy, narrative therapy, and general psychosocial interventions decreased depression and anxiety, but evidence was limited. Factors contributing to the interventions' success included intervention content, which enabled the disclosure of personal experience and death concerns comfortably, trained professionals, and connection to family caregivers. CONCLUSIONS: This work identified a few potentially effective death education interventions for psychological outcomes for people with advanced cancer or their caregivers. Additional trials are needed to confirm the effectiveness of these interventions.

Unpaid caregiving and mental health during the COVID-19 pandemic-A systematic review of the quantitative literature.

The COVID-19 pandemic imposed additional and specific challenges on the lives and wellbeing of informal unpaid carers. Addressing an important gap in the existing literature, this systematic review (prospectively registered with PROSPERO CRD42022376012) synthesises and evaluates the quantitative evidence examining the association between unpaid caregiving and mental health (compared to non-caring), during the pandemic. Five databases were searched (Medline, PsycInfo, EMBASE, Scopus, Web of Science) from Jan 1, 2020, to March 1, 2023. Population-based, peer-reviewed quantitative studies using any observational design were included, with screening, data extraction and quality assessment (amended NOS) independently conducted by two reviewers. Of the 3,073 records screened, 20 eligible studies (113,151 participants) were included. Overall quality of evidence was moderate. Narrative synthesis was complemented by Effect-direction and Albatross plots (given significant between-study heterogeneity precluded meta-analysis). Results indicate that the mental health of informal carers, already poorer pre-COVID compared to non-caregivers, was disproportionally impacted as a result of the pandemic and its associated public health containment measures. This review highlights the vulnerability of this group and should motivate political will and commensurate policies to ensure unpaid caregivers are better supported now, in the medium term, and crucially if, and when, another global public health emergency emerges.

Caregiver and parent-child relationship during COVID-19: The mediator role of anxiety and life satisfaction.

AIM: This research was conducted to evaluate the mediation effect of anxiety and life satisfaction on the relationship between Care burden and Parent Child Relationship in Turkish parents during the COVID-19 epidemic. METHODS: The research was carried out with parents (221 women and 219 men) who have children between the ages of 6-18 living in Turkey. Data were collected in June-July 2021 using the demographic data form, "Care Burden Scale," "Pervasive Anxiety Disorder-7 Test," "Satisfaction with Life Scale," and "Parent Child Relationship Scale." Path analysis was used to analyse the relationships. In this study, structural equation modelling (SEM) was used to examine the path analysis. RESULTS: It was found that the burden of care and anxiety of the parents and the parent-child conflict relationship were positively correlated and negatively correlated with the life satisfaction and parent-child closeness relationship (p < 0.05). Path model analyses revealed that the burden of care had a direct effect on anxiety and life satisfaction, and an indirect effect on the parent-child relationship, respectively. CONCLUSIONS: It shows that parents' perceptions of how the COVID-19 pandemic is affecting their mental health have implications for parent and child well-being, with stronger relationships for low-income families. Anxiety and life satisfaction had a mediating effect between care burden and parent-child relationship. Given the demonstrable impact of COVID-19 on the parent-child relationship, this study may guide the planning of coping strategies and programmes focused on mental health.

Cognition and health-related quality of life in long-term survivors of high-grade glioma: an interactive perspective from patient and caregiver.

BACKGROUND: The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden. METHODS: 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers. RESULTS: Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients' general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits. CONCLUSIONS: In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.

Effect of play-based intervention on children's mental status and caregiver involvement during hospitalization: findings from Pakistan.

BACKGROUND: The nurturing care framework (NCF) encompasses responsive caregiving, health, nutrition, safety and security by parents and other caregivers. It improves health, development and wellbeing of children. A hospital environment can be detrimental to the developmental and emotional needs of children hence NCF can be applied to hospitalized children. OBJECTIVE: The objective was to determine if (i) play stimulation intervention mediated by non-specialist providers (caregivers) improves mental status of children who are hospitalized; (ii) to examine if difference varies between different providers and iii) if there is variation based on child age and criticalness of illness. METHOD: A one-group pretest-posttest research was carried out using purposive sampling in a pediatric unit in Karachi, Pakistan, from November 2017 to December 2019. Children aged 3 months to 6 years were offered play stimulation by trainee psychologists. The outcome was measured through an observation tool, the Mental Status Examination Scale (MSE-S) developed for the study. RESULTS: A total of 524 sessions were delivered to 351 children. Significant mean difference was observed on MSE-S before and after the intervention when it was provided by trainees (9.95, CI = 8.11, 11.7), mothers (mean difference = 5.86, CI = 5.30, 6.42), fathers (mean difference = 5.86, CI = 4.48, 7.24) and non-specialist providers [caregivers (mean difference = 5.40, CI = 3.91, 6.89). Significant differences in mean was observed on MSE-S across different age groups and criticalness of illness. CONCLUSION: It was concluded that play stimulation not only affects the behaviour of children but also varies when delivered by caregivers and trainees. Hence, interventions that involve parents are feasible.