Intervenciones para adultos con dependencia funcional y sus cuidadores durante la pandemia de COVID-19 / Interventions for functionally dependent adults and their caregivers during the COVID-19 pandemic

La pandemia de COVID-19 ha afectado a la población, perjudicando especialmente a los miembros de aquellos grupos sociales en situación de mayor vulnerabilidad. Estas poblaciones específicas, como aquellas con alguna dependencia funcional, podrían verse más afectadas por los efectos de la pandemia del COVID-19. Por lo tanto, el objetivo de este artículo fue describir las intervenciones para preservar la salud general, mantener la función y la independencia y prevenir la infección por COVID-19 para los adultos con dependencia funcional (ADF). Se realizó una búsqueda sistemática en bases de datos. Se revisaron los títulos y los resúmenes de cada publicación para determinar su relevancia. Dos revisores independientes accedieron a los artículos de texto completo para determinar su elegibilidad después de la selección inicial. Las búsquedas se realizaron en septiembre de 2021 y se actualizaron en enero y julio de 2022. La información encontrada se clasificó en 3 categorías: 1) ADF durante la pandemia de COVID-19; 2) ADF durante la pandemia de COVID-19 según una condición específica (condiciones neurológicas, discapacidades/deficiencias sensoriales y deterioro cognitivo), y 3) Adultos mayores con dependencia funcional. Los adultos con dependencia enfrentaron dificultades y barreras durante la pandemia por COVID-19. Las autoridades de cada país deben garantizar que los ADF tengan acceso a los servicios de rehabilitación en tiempos de crisis sanitaria. Además, es necesario aumentar la capacidad de los servicios de rehabilitación en tiempos de crisis como pandemias. De igual manera, se sugiere el fortalecimiento de estrategias como la telerehabilitación para evitar el deterioro o agravamiento de la funcionalidad de las personas dependientes. (AU)

The COVID-19 pandemic has affected the world population, especially people from social groups in a situation of greater vulnerability among people with some functional dependency. Therefore, the aim of this review was to describe interventions during the pandemic to preserve general health, maintain function and independence, and prevent COVID-19 infection for functionally dependent adults (FDA). A systematic search in databases was carried out. Titles and abstracts of each publication were reviewed for relevance. Full-text articles were accessed by two independent reviewers. The information found was classified into three categories: 1) FDA during the COVID-19 pandemic, 2) FDA during the COVID-19 pandemic according to a specific condition (neurological conditions, sensory disabilities/impairments, and cognitive impairment), and 3) Older adults with functional dependence. The FDAs have faced difficulties and barriers during the COVID-19 pandemic. Strengthening strategies such as telerehabilitation is suggested to avoid deterioration or aggravation of the functionality of dependent people. (AU)

Spouses of patients treated for colon cancer: identification of key caregiver skills using the Delphi method.

PURPOSE: Spouses are often the front-line caregivers for colon cancer patients. Providing this support requires a particular set of coping skills. Our objective was to identify key skills that healthcare and medico-social sector professionals could assess in routine practice that would allow them to propose appropriate support to spouses who are accompanying colon cancer patients in their care pathway. METHODS: An online two-round Delphi study was conducted among French colon cancer patients, spouses and professionals. The content of the Delphi study was developed from a previously published qualitative study. RESULTS: In the first round of the study, 63% of the participants were professionals (n = 40), 19% spouses (n = 12) and 17% patients (n = 11). In the second round, they were respectively 55% (n = 22), 22% (n = 9) and 22% (n = 9). Twenty-seven of the 75 proposed skills were consensually identified as key skills. Nine were related to emotional and psychological well-being, six to social relations, four to organisation, five to health and three to domestic domains. The three most consensual skills (≥ 90% agreement) for spouses were (1) helping the tired patient in everyday life, (2) stimulating the patient to prevent him/her from giving up and (3) limiting one's amount of personal time to care for the patient. CONCLUSION: The study identified the key skills needed by spouses of patients being treated for colon cancer. Better awareness of these skills among professionals would enable them to offer tailored support to help patients and spouses maintain their physical and emotional well-being.

Benefits of Chinese family caregivers of patients with urostomy: a qualitative study.

BACKGROUND: Family caregivers, also known as informal caregivers, are critical for the home care of patients with urostomy. The present study aimed to investigate the benefits of family caregivers in China while taking care of patients with urostomy from a positive perspective. METHODS: A qualitative research design was adopted, with a thematic analysis. The qualitative research software NVivo was used for data analysis. Twenty-two family caregivers of urostomy patients participated in an in-depth interview for 60-90 min. A qualitative analysis was performed using a thematic approach in accordance with the six-stage thematic analysis process reported by Braun and Clarke (2006). RESULTS: The following four benefits were identified: mastering knowledge and skills, promoting self-growth, establishing close family ties, and changing the way of life. Among these four themes, 11 sub-themes were constructed by coders. CONCLUSIONS: This study provides new insights into intervention measures for family caregivers of patients with urostomy, which could play an important role in developing the overall model of family-centered nursing.

Social prescribing for people living with dementia (PLWD) and their carers: what works, for whom, under what circumstances and why - protocol for a complex intervention systematic review.

INTRODUCTION: Dementia is a complex medical condition that poses significant challenges to healthcare systems and support services. People living with dementia (PLWD) and their carers experience complex needs often exacerbated by social isolation and challenges in accessing support. Social prescribing (SP) seeks to enable PLWD and their carers to access community and voluntary sector resources to support them address such needs. Existing research, however, does not describe what SP interventions are currently in place in dementia care. Little is known about the needs these interventions are designed to address, the reasons that lead PLWD and their carers to participate in them, their effectiveness and the extent to which they could increase positive health outcomes if adopted and how. METHODS AND ANALYSIS: A complex intervention systematic review of SP for PLWD and/or their carers will be conducted using an iterative logic model approach. Six electronic (MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and Cochrane/CENTRAL) and two grey literature databases (EThOS and CORE) were searched for publications between 1 January 2003 and June 2023, supplemented by handsearching of reference lists of included studies. Study selection, data extraction and risk of bias assessment, using Gough's Weight of Evidence Framework, will be independently performed by two reviewers. A narrative approach will be employed to synthesise and report quantitative and qualitative data. Reporting will be informed by the Preferred Reporting Items for Systematic Review and Meta-Analysis Complex Interventions extension statement and checklist. ETHICS AND DISSEMINATION: No ethical approval is required due to this systematic review operating only with secondary sources. Findings will be disseminated through peer-reviewed publications, conference presentations and meetings with key stakeholders including healthcare professionals, patient and carer groups, community organisations (eg, the Social Prescribing Network and the Evidence Collaborative at the National Academy for Social Prescribing), policymakers and funding bodies. PROSPERO REGISTRATION NUMBER: CRD42023428625.

Caregiving experiences of family caregivers of patients with schizophrenia in a community: a qualitative study in Beijing.

OBJECTIVES: This study aims to understand the caregiving experiences of family caregivers of people with schizophrenia in a community. DESIGN: A qualitative study based on phenomenological analysis was conducted through in-depth interviews. SETTING: This study was carried out from May to June 2023 in two community health service centres in urban Beijing, China. PARTICIPANTS: We selected 16 family caregivers for interviews using purposive sampling method. RESULTS: Four themes and 10 subthemes were identified: (1) psychosocial distress of family caregivers (feeling unprepared and helpless at the beginning, confronting negative emotions in long-term care and straying away from social life); (2) adverse impacts on the whole family (poor cooperation within the family, insufficient family involvement in professional care); (3) coping with family caregiving (accepting the reality of the patients' illness, struggling with family life balance and having realistic expectations); (4) concerns about future care (daily living support, physical health management). CONCLUSION: Family caregivers experienced psychosocial distress and family stress in the process of caregiving. They had to cope with caregiving stress and were concerned about the long-term care of people with schizophrenia. These findings provide implications for intervention programmes to strengthen social support, family involvement, and active coping for caregivers and develop long-term care mechanisms for people with schizophrenia.

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life.

Importance: Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences. Objectives: To investigate the patterns of goals of care among patient-caregiver dyads over the last years of the patient's life and the associations of the goals of care with patient-caregiver characteristics. Design, Setting, and Participants: This prospective cohort study of 210 patient-caregiver dyads involved surveys every 3 months from July 8, 2016, until the patient's death or February 28, 2022. Data from the last 2 years of the patients' lives were analyzed. Dyads, which comprised patients with stage IV solid cancer and their caregivers, were recruited from outpatient clinics at 2 major cancer centers in Singapore. Main Outcomes and Measures: Goals of care were examined via the tradeoffs between life extension and symptom management and between life extension and cost containment. The actor-partner interdependence framework was implemented using mixed-effects linear regressions. Results: This study included 210 dyads (patients: mean [SD] age, 62.6 [10.5] years; 108 men [51.4%]; caregivers: mean [SD] age, 49.4 [14.6] years; 132 women [62.9%]). On average, 34% of patients (264 of 780 observations; range, 23%-42%) and 29% of caregivers (225 of 780 observations; range, 20%-43%) prioritized symptom management over life extension, whereas 24% of patients (190 of 780 observations; range, 18%-32%) and 19% of caregivers (148 of 780 observations; range, 8%-26%) prioritized life extension. Between cost containment and life extension, on average, 28% of patients (220 of 777 observations; range, 22%-38%) and 17% of caregivers (137 of 780 observations; range, 10%-25%) prioritized cost containment, whereas 26% of patients (199 of 777 observations; range, 18%-34%) and 35% of caregivers (271 of 780 observations; range, 25%-45%) prioritized life extension. Goals of care did not change as patients approached death. Patients prioritized symptom management if they experienced higher symptom burden (average marginal effect [SE], 0.04 [0.01]), worse spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and accurate (vs inaccurate) prognostic awareness (average marginal effect [SE], 0.40 [0.18]) and if their caregivers reported accurate prognostic awareness (average marginal effect [SE], 0.53 [0.18]), lower impact of caregiving on finances (average marginal effect [SE], -0.28 [0.08]), and poorer caregiving self-esteem (average marginal effect [SE], -0.48 [0.16]). Compared with patients, caregivers expressed lower preferences for cost containment (average marginal effect [SE], -0.63 [0.09]). Patients prioritized cost containment if they were older (average marginal effect [SE], 0.03 [0.01]), had higher symptom burden (average marginal effect [SE], 0.04 [0.01]), had poorer spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and their caregivers reported poorer caregiving self-esteem (average marginal effect [SE], -0.51 [0.16]) and more family support (average marginal effect [SE], -0.30 [0.14]). Conclusions and Relevance: In this cohort study of patient-caregiver dyads, findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments.

Identifying carers in general practice (STATUS QUO): a multicentre, cross-sectional study in England.

OBJECTIVES: To determine General Practice (GP) recording of carer status and the number of patients self-identifying as carers, while self-completing an automated check-in screen prior to a GP consultation. DESIGN: A descriptive cross-sectional study. SETTING: 11 GPs in the West Midlands, England. Recruitment commenced in September 2019 and concluded in January 2020. PARTICIPANTS: All patients aged 10 years and over, self-completing an automated check-in screen, were invited to participate during a 3-week recruitment period. PRIMARY AND SECONDARY OUTCOME MEASURES: The current coding of carers at participating GPs and the number of patients identifying themselves as a carer were primary outcome measures. Secondary outcome measures included the number of responses attained from automated check-in screens as a research data collection tool and whether carers felt supported in their carer role. RESULTS: 80.3% (n=9301) of patients self-completing an automated check-in screen participated in QUantifying the identification Of carers in general practice (STATUS QUO Study) (62.6% (n=5822) female, mean age 52.9 years (10-98 years, SD=20.3)). Prior to recruitment, the clinical code used to denote a carer was identified in 2.7% (n=2739) of medical records across the participating GPs.10.1% (n=936) of participants identified themselves as a carer. They reported feeling supported with their own health and social care needs: always 19.3% (n=150), a lot of the time 13.2% (n=102), some of the time 40.8% (n=317) and never 26.7% (n=207). CONCLUSIONS: Many more participants self-identified as a carer than were recorded on participating GP lists. Improvements in the recording of the population's caring status need to be actioned, to ensure that supportive implementation strategies for carers are effectively received. Using automated check-in facilities for research continues to provide high participation rates.

The Olera.care Digital Caregiving Assistance Platform for Dementia Caregivers: Preliminary Evaluation Study.

BACKGROUND: The increasing prevalence of Alzheimer disease and Alzheimer disease-related dementia in the United States has amplified the health care burden and caregiving challenges, especially for caregivers of people living with dementia. A web-based care planning tool, Olera.care, was developed to aid caregivers in managing common challenges associated with dementia care. OBJECTIVE: This study aims to preliminarily evaluate the quality and usability of the Olera.care platform and assess the preferences of using the technology and interests in learning about different older adult care services among caregivers. METHODS: For interview 1, we aim to understand caregiving needs and let the participants start engaging with the platform. After they engage with the platform, we schedule the second interview and let the participants complete the Mobile Application Rating Scale. The survey also included sociodemographic characteristics, caregiving experiences, communication preferences in technology adoption, and older adult care service use and interests. Descriptive statistics were used to describe the quality and usability of the platform and characteristics of the participants. We conducted 2-sample 2-tailed t tests to examine the differences in the Mobile Application Rating Scale evaluation scores by caregiver characteristics. RESULTS: Overall, 30 adult caregivers in Texas completed the evaluation. The majority were aged ≥50 years (25/30, 83%), women (23/30, 77%), White (25/30, 83%), and financially stable (20/30, 67%). The Olera.care platform evaluation showed high satisfaction, with an overall mean rating of 4.57 (SD 0.57) of 5, and scored well in engagement (mean 4.10, SD 0.61), functionality (mean 4.46, SD 0.44), aesthetics (mean 4.58, SD 0.53), and information quality (mean 4.76, SD 0.44) consistently across all participants. A statistically significant difference (P=.02) was observed in functionality evaluation scores by duration of caregiving, with caregivers dedicating more hours to care rating it higher than those providing less care (mean 4.6, SD 0.4 vs mean 4.2, SD 0.5). In addition, caregivers with less caregiving experience reported significantly higher evaluation scores for aesthetics (P=.04) and information quality (P=.03) compared to those with longer years of caregiving. All participants expressed a willingness to recommend the app to others, and 90% (27/30) rated the app overall positively. Most of the participants (21/30, 70%) favored anonymous interactions before receiving personalized feedback and preferred computer browsers over mobile apps. Medical home health services were the most used, with a diverse range of services being used. Caregiver support groups, medical providers, memory care, meal services, and adult day care were among the most desired services for future exploration. CONCLUSIONS: The Olera.care web-based platform is a practical, engaging, easy-to-use, visually appealing, and informative tool for dementia caregivers. Future development and research are essential to enhance the platform and comprehensively evaluate it among a broader population.

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.

Clinician and Family Caregiver Perspectives on Deprescribing Chronic Disease Medications in Older Nursing Home Residents Near the End of Life.

INTRODUCTION: Nursing home (NH) residents with limited life expectancy (LLE) who are intensely treated for hyperlipidemia, hypertension, or diabetes may benefit from deprescribing. OBJECTIVE: This study sought to describe NH clinician and family caregiver perspectives on key influences on deprescribing decisions for chronic disease medications in NH residents near the end of life. METHODS: We recruited family caregivers of veterans who recently died in a Veterans Affairs (VA) NH, known as community living centers (CLCs), and CLC healthcare clinicians (physicians, nurse practitioners, physician assistants, pharmacists, registered nurses). Respondents completed semi-structured interviews about their experiences with deprescribing statin, antihypertensive, and antidiabetic medications for residents near end of life. We conducted thematic analysis of interview transcripts to identify key themes regarding influences on deprescribing decisions. RESULTS: Thirteen family caregivers and 13 clinicians completed interviews. Key themes included (1) clinicians and caregivers both prefer to minimize drug burden; (2) clinical factors strongly influence deprescribing of chronic disease medications, with differences in how clinicians and caregivers weigh specific factors; (3) caregivers trust and rely on clinicians to make deprescribing decisions; (4) clinicians perceive caregiver involvement and buy-in as essential to deprescribing decisions, which requires time and effort to obtain; and (5) clinicians perceive conflicting care from other clinicians as a barrier to deprescribing. CONCLUSIONS: Findings suggest a need for efforts to encourage communication with and education for family caregivers of residents with LLE about deprescribing, and to foster better collaboration among clinicians in CLC and non-CLC settings.

A formative cross-sectional study to assess caregiver's health-seeking behaviour and knowledge surrounding malaria, and understand the burden of malaria among children under-five in conflict-affected communities of Cameroon.

BACKGROUND: Malaria remains a major global health problem often worsened by political instability and armed conflict. The purpose of the study was to explore community knowledge, attitudes and practices on malaria prevention, and to understand the burden of malaria and health-seeking behaviours of caregivers of children under-five in conflict-affected communities of the South West and Littoral Regions of Cameroon. METHODS: A cross-sectional survey involving internally displaced persons (IDPS), host population, and their children under-five was conducted across 80 communities. The survey was conducted from May to June 2021. Participants were interviewed using a structured questionnaire. Malaria prevalence for children under-five was determined using rapid diagnostic tests (RDT) on blood samples. Association between variables and displacement status was measured using chi square test and multivariate logistic regression model was fitted to identify factors associated with adequate knowledge on malaria prevention. RESULTS: A total of 2386 adults participated in the study and 1543 RDTs were conducted for children under-five. Adequate levels of knowledge and attitudes on malaria prevention was recorded among 1258 (52.9%) of the participants, with very strong evidence to suggest the level to be higher among the host (59.5%) compared to the IDPs (49.5%) and returnees (39.7%) (p < 0.001). Good practices towards malaria prevention was 43.3%, with very strong evidence indicating lower levels among IDPs (42.8%) and returnees (28.5%) compared to the host (49.4%) (p < 0.001). Malaria prevalence for children under-five was 54.0% and adequate health-seeking for suspected episodes of malaria was 53.0%, without any difference among IDPs (51.78%) and returnees (48.7%) compared to host populations (55.4%) (p = 0.154). Multivariate logistic regression model showed that there was quite strong evidence to suggest primary and secondary levels of education have higher odds of having correct knowledge of malaria prevention (adjusted odds ratio (AOR) 1.71, 95% confidence interval (CI): 1.11-2.64, p = 0.015 and AOR 1.80, 95% CI 1.15-2.82, p = 0.010 respectively). There was very strong evidence to suggest that owning a radio or a television was associated with greater odds of having a higher knowledge on malaria prevention (AOR 1.49, 95% CI 1.233-1.81, p = 0.000 and AOR 1.47, 95% CI 1.18-1.84, p = 0.001). CONCLUSION: Over half of the population have correct knowledge and attitudes towards malaria prevention but gaps in complete knowledge remained. Some of the caregivers know the correct malaria preventive practices coupled with largely unsatisfactory treatment approaches and reflected by the high prevalence of malaria among their children. In order to effectively treat malaria, innovative strategies should target community participation.

Development and validation of the CARE-FCR: A caregiver-specific measure of fear of cancer recurrence and progression.

OBJECTIVES: Fear of cancer recurring or progressing (FCR) is a concern reported by people living with cancer and caregivers alike. Whilst advances in survivor FCR have been made, less is known about caregiver FCR. As a result, measurement of caregiver FCR has relied on instruments developed for survivor populations. Findings from qualitative research indicate caregiver experiences of FCR differ. This study aimed to develop and evaluate the psychometric properties of a caregiver specific measure of FCR (CARE-FCR). METHODS: Four-hundred and thirty-eight caregivers (56% female, Mage = 50.53 years, SD = 17.38) completed the online survey including demographic questions, information about care provided, the person they care for, as well as the CARE-FCR. Convergent validity was assessed using pre-existing measures of fear of recurrence and progression, depression, anxiety, death anxiety and meta-cognitions. The extraversion dimension of the Big Five Personality Trait questionnaire was used to assess divergent validity. The survey was completed 2 weeks later to assess test-retest reliability. Exploratory factor analysis (EFA) was used to determine factor structure, followed by confirmatory factor analysis. RESULTS: EFA indicated a 3-factor structure: progression, recurrence, and communication. Evidence for convergent, divergent, and test-retest reliability was adequate. Internal consistency for the CARE-FCR was strong, overall Cronbach's α = 0.96 (progression = 0.94, recurrence = 0.92 and communication = 0.78). CONCLUSIONS: We present a theoretically informed and psychometrically robust measure of caregiver FCR. The CARE-FCR facilitates quantification of caregiver FCR, capturing unique aspects specific to this population.

[Decreased family caregiver satisfaction with diabetes treatment of elderly patients is associated with patient depressive symptoms].

OBJECTIVE: To examine the relationship between the dissatisfaction of family caregivers with diabetes treatment and depressive symptoms among the elderly. METHODS: The subjects were diabetic patients of 65 years of age or older and their family caregivers, who were outpatients at Ise Red Cross Hospital. The Japanese version of the Patient Health Questionnaire 9, which consists of nine items, was used to measure depressive symptoms. The Japanese version of the Treatment Satisfaction Scale for Caregivers of Dependent Diabetic Patients (STCD2-J) was used to measure the satisfaction of family caregivers with diabetes treatment. A logistic regression analysis was performed using depressive symptoms as dependent variable, satisfaction of the family caregiver with diabetes treatment as an explanatory variable, and adjustment variables. RESULTS: In total, 272 patients were included in the analysis. Taking the quintiles of STCD2-J scores, the adjusted odds ratios for patient depressive symptoms in Q2 (27-29), Q3 (24-26), Q4 (22-23) and Q5 (14-21) based on Q1 (30-36) (the group with the highest STCD2-J scores) were 2.44 (95% confidence interval (CI), 0.69-8.61; P=0.163), 3.08 (95% CI, 0.93-10.12; P=0.063), 2.69 (95% CI, 0.68-10.65; P=0.156), and 4.54 (95% CI, 1.44-14.32; P=0.010), respectively. CONCLUSION: We found that family caregivers' decreased satisfaction with diabetes treatment was associated with depressive symptoms. It is important to alert primary care physicians about depressive symptoms when they see family caregivers who show decreased satisfaction with diabetes treatment.

Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies.

Background: Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. Method: This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. Results: The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). Conclusion: The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

Validity and Reliability Study of the Prolonged Grief Disorder- Caregiver Turkish Form. / Uzamis Yas Bozuklugu Ölçegi-Bakim Veren Türkçe Formu'nun Geçerlik ve Güvenirlik Çalismasi.

OBJECTIVE: The aim of this study was to adapt the Prolonged Grief Disorder - Caregiver Form (PG-12), which is used to measure grief symptoms of caregivers providing care to their relatives with a chronic diseases that cause functional disability to Turkish and to investigate its psychometric properties. We also aimed to investigate the prevalence of prolonged grief disorder in the caregiver sample. METHOD: The sample consisted of 120 adult participants (70.8% female) who acted as caregivers. The participants were administered Prolonged Grief Disorder-Caregiver Form, Zarit Caregiver Burden Scale, Beck Depression Inventory and Life Satisfaction Scale. RESULTS: The results of confirmatory factor analysis showed that the single-factor structure of PG-12, consistent with the original form, was supported. PG-12 scores showed a positive correlation with depression and caregiver burden scores and a negative correlation with life satisfaction scores. The internal consistency coefficient of the scale was 0.85. The prevalence of prolonged grief disorder calculated using PG-12 was found to be 31.66%. CONCLUSION: The results showed that PG-12 is a valid and reliable tool for assessing the grief symptoms of people who provides care for a relative. In addition, the prevalence of prolonged grief disorder in our study population was high. Additional studies are needed in Turkey to confirm this rate and develop new strategies for caregivers.

Comparison of Self and Caregiver Reports of Antiretroviral Treatment Adherence among Children and Adolescents Living with HIV in Western Kenya.

BACKGROUND: Youth living with HIV with perinatal infection spend a lifetime taking antiretroviral treatment (ART) to suppress the virus, and face significant challenges to successfully maintaining ART adherence. Tools to measure adherence include self-report, medication event monitoring system (MEMS) pill bottle caps, pill counts, and plasma or hair drug levels; however, the inter-rater agreement between child and caregiver self-report has not been validated in an African setting. This study aims to assess inter-rater agreement between child and caregiver self-reports, compared to reporting from MEMS pill bottle caps. METHODS: This was a secondary analysis of a cluster-randomized trial to evaluate an intervention for children living with HIV, conducted at the Academic Model Providing Access to Healthcare in western Kenya. We analyzed data from 285 child-caregiver dyads to compare adherence self-reported by children and their caregivers, and subsequently compared all self-reports to adherence reported by MEMS pill bottle caps to determine whether child or caregiver self-reports aligned more closely with adherence measured by MEMS. RESULTS: Children and their caregivers reported similar levels of adherence and numbers of missed doses in the past month, and both reports were similarly associated with adherence reported by MEMS pill bottle caps. Children with a caregiver that was not a biological parent were significantly more likely to report more missed doses than their caregiver. The correlation coefficient for the relationship between the child and caregiver self-reports was 0.71; for the relationship between child report and MEMS was 0.23; and for the relationship between caregiver report and MEMS was 0.20. Both children and caregivers under-reported non-adherence compared to MEMS data. CONCLUSION: Children and caregiver self-reports were generally similar in reporting adherence and were not highly correlated with MEMS reports of adherence, with children and caregivers reporting higher level of adherence than the MEMS data. This may indicate that children and caregiver reports are similarly inaccurate or biased; however, further research with larger sample sizes is required to further understand the differences in these reports.

Comparison of self-reported ART adherence rates among children and adolescents living with HIV in western Kenya The study aims to compare adherence between children and caregivers of Youth Living with HIV (YLWH) with perinatal infection, comparing data from 285 child-caregiver dyads and MEMS pill bottle caps. Results showed similar levels of adherence and missed doses in the past month, with a correlation coefficient of 0.71. However, children and caregivers reported higher levels of adherence than MEMS data. The study highlights the importance of understanding the reliability between self-reports and MEMS data in promoting adherence among YLWH.

Reconstitution of oral antibiotic suspensions for paediatric use in households: a cross-sectional study among caregivers of 3-5-year-old children from a selected district, Sri Lanka.

INTRODUCTION: Reconstitution of oral pediatric antibiotic suspension by primary caregivers plays an essential role in determining the overall health outcome of the child. Incorrect reconstitution techniques could lead to underdosing, overdosing, or introduction of infection. Underdosing could lead to non-resolving infection and antimicrobial resistance. OBJECTIVES: To assess the practice and associated factors on reconstitution of oral pediatric antibiotic suspensions (OPAS) among primary caregivers of 3-5-year-old children in a selected district in Sri Lanka. METHODS: A cross-sectional study was carried out among 835 primary caregivers selected using two-stage cluster sampling at field clinics to assess practices for the reconstitution of OPAS. A live demonstration of the reconstitution of the OPAS was assessed by a checklist. Associated factors with caregiver practices on reconstitution were assessed using Chi-square with the statistical significance level set at 0.05. RESULTS: A total of 820 respondents were recruited and completed the study (response rate = 98.2%). Overall, 56.0% displayed good performance in the demonstration of reconstitution of oral pediatric antibiotic suspension. Poorest performances were observed in shaking the bottle to loosen the powder (Correct: 53.7%), topping up the bottle with water up to the marked line (Correct: 58.0%), and filling the water below the marked line in the bottle (Correct: 59.0%). Caregivers in urban areas compared to rural and estate regions (45.6% vs. 22.7% and 26.5% respectively) and caregivers aged 35 years or above compared to less than 35 years age group (31.5% vs. 22.5%) performed the reconstitution of OPAS poorly. Parental factors, namely age, gender, level of education, and geographical region (urban/rural/estate) were significantly associated with the performance in reconstituting the oral paediatric antibiotic suspension (p = 0.002, p < 0.001, p < 0.001, and p < 0.001 respectively). Factors related to the child, specifically whether they attend preschool and whether they have an older sibling, were found to have a significant association with the correct execution of the reconstitution of OPAS (p = 0.017, and p = 0.030 respectively). CONCLUSIONS AND RECOMMENDATIONS: A significant number of primary caregivers displayed poor practice in key steps during the reconstitution of OPAS, which could have a negative impact on the health of the child. Targeted place-based behavioural change health programs with the use of infographic leaflets/ posters may correct the practices of caregivers.

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.