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.

Formal support and service needs of family caregivers of adults with intellectual and/or developmental disabilities in India.

BACKGROUND: Despite the enactment of disability laws/policies in India, research shows that caregivers of adults with intellectual and/or developmental disabilities experience inadequate formal supports/services due to dissemination barriers and lack of awareness about them. To address discrepancy between caregivers' support needs and the professionals' understanding of their needs, the study proposed to conduct a caregiver needs assessment so that culturally-tailored programs are developed. METHOD: A strengths-based mixed methods needs assessment was conducted with a convenience sample of 100 caregivers in Hyderabad, India. One hundred caregivers completed the survey and 15 caregivers participated in semi-structured interviews. RESULTS: Caregivers needed more and improved formal supports/services, particularly from the government. Caregivers faced systemic and attitudinal barriers, and personal impediments to accessing them. Needs differed by care recipients' intellectual disability level, gender, and intellectual disability related conditions. CONCLUSIONS: Researchers, service providers and policymakers need to adopt innovative strategies to improve formal supports/services access.

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.

[Care assistants at the international level: a narrative review]. / Gli operatori di supporto a livello internazionale: una revisione narrativa.

. Care assistants at the international level: a narrative review. INTRODUCTION: At the international level, the role of care assistants, their competencies and scope of their professional practice has been debated for many years. Periodically updating the state of the art regarding the different training pathways, expected competencies, and responsibilities of care assistants at the international level is crucial for monitoring the evolution of these professional profiles. OBJECTIVE: To map the available classifications of care assistants at the international level, by describing (a) where these figures receive training, with which pathways, and for which competencies, and (b) where they can work and with what level of professional autonomy/interdependence with respect to other healthcare professions. METHOD: A narrative review of the literature was conducted by examining documents produced by the World Health Organization and the European Union; and that of three reference countries, the United Kingdom, Canada, and the United States of America. RESULTS: Fourteen documents were selected. Numerous care assistant profiles are described in available classifications, totaling 32 different profiles; these individuals may receive training in upper secondary school or colleges to perform a range of competencies. They may be supervised in their practice not only by nurses. In some countries, compulsory registration is required. DISCUSSION: The results show an important heterogeneity in care assistant figures internationally.

The importance of caregivers for patients with advanced basal cell carcinoma treated with hedgehog-pathway inhibitors: an observational prospective study.

Oral targeted therapy with hedgehog pathway inhibitors has revolutionized the standard of care for patients with advanced basal cell carcinoma (BCC). These patients are frail and elderly, have various comorbidities, and receive pharmacological polytherapy. Moreover, adverse events may have a significant impact on therapeutic adherence, which must be managed by the clinician. We evaluated the impact of caregivers on the treatment of patients with advanced BCC in terms of continuation of therapy over time. All patients included in this observational prospective study had histologically confirmed metastatic or locally advanced BCC (LaBCC) and were treated with hedgehog pathway inhibitors from January 2016 to December 2021 at the Department of Dermatology at the University of Florence, Italy. The collected patient data included: age, sex, BCC site and area of spread; number of cycles, dose, duration and tolerability of therapy; marital status (single, divorced, married/living with a partner, widow/widower); and information such as living with someone, and the presence of any caregivers. Of the 34 patients included, 33 had LaBCC and one metastatic BCC. There were 11 females (32.4%) and 23 males (67.6%). Patients who were married or living with a caregiver -tolerated therapy better than single patients who lived alone. Indeed, patients with married/live-in caregivers and/or those with an adequate caregiver experienced greater therapeutic adherence and tolerance of adverse events. Given the greater therapeutic adherence of patients with live-in caregivers as partners, it is essential to consider patients' marital status. It is advisable to involve the caregiver early on, and there should be a training discussion on the various possible adverse events and the best way to mitigate them. Therapeutic success is linked not only to patients being informed but also to training of caregivers.

[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.

Integrating palliative care in patients with advanced multiple sclerosis: a scoping review.

BACKGROUND: Multiple sclerosis (MS) often presents a long and uncertain evolution. Treatment decisions in advanced MS are supported by robust evidence, but recent guidelines have suggested a shift to a palliative approach as the disease progresses. This study aims to describe what is known about the integration of palliative care (PC) in patients with severe MS (cost-effectiveness, moment of reference, and perspective of stakeholders). METHODS: A scoping review was developed, and the Scopus, Medline (PubMed), ISI Web of Knowledge, and SAGE databases were consulted, using the key terms: "multiple sclerosis" AND "palliative care". Studies on the perspectives of patients, caregivers, and health professionals regarding the integration of PC in MS were included. No restrictions were applied regarding the subtype of MS, gender, ethnicity, frequency of use of health services, and language. RESULTS: Of 158 articles identified, 19 were included in the review. Key factors were identified, such as the effectiveness of PC intervention in severe MS, the financial impact of providing PC compared to conventional care, the reduction of symptoms and caregiver burden, and the perception of unmet needs by users, health professionals, and caregivers during the PC approach. CONCLUSIONS: Patients with MS should have access to specialized PC when they reach the severe phase of the disease. Providing a multidisciplinary team to provide targeted consultations based on the patient's needs may be most appropriate. These issues have important implications for the future planning and provision of PC services.

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.

Comparative analysis of primary health care attributes between children under and over 3 years of age using the primary care assessment tool.

INTRODUCTION: Child health actions in Brazil have their primary focus on early childhood. A new epidemiological profile is emerging for children after the first one thousand days: an increase in non-communicable chronic diseases. This research aimed to analyze the attributes of Primary Health Care comparatively among different age groups, using three years of age as the cutoff point. METHODS: The study design was cross-sectional and conducted in three Primary Health Care Units and three Ambulatory Medical Assistance facilities in the Western Region of São Paulo. The PCA Tool Brazil was used as the assessment instrument. RESULTS: A total of 311 interviews were conducted with caregivers of children aged 0 to 12 years; 153 children were under three years old, and 158 were three years or older. The attributes that showed statistically significant differences between age groups (< 3 years and > 3 years) were affiliation (4.9 × 3.8), longitudinality (5.7 × 5.2), information system (7.4 × 6.3), and services provided (5.4 × 4.5). Through linear regression analysis, it was observed that there was a trend for better overall and essential scores in the evaluations of the group of children under three years old who attended Primary Health Care Units. CONCLUSION: The comparative analysis of Primary Health Care attributes among pediatric age groups revealed a trend towards higher scores, according to caregivers' perceptions, for children under three years old. This study suggests the need for the implementation of programs that can better address the healthcare needs of children beyond early childhood.

Caring burden and coping with haemodialysis: a qualitative study with family caregivers in Sri Lanka.

OBJECTIVE: The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context. DESIGN: Qualitative study with an exploratory design. SETTING: Family caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021. PARTICIPANTS: A purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis. RESULTS: The results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support. CONCLUSION: The results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained 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.

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.

Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement.

BACKGROUND: Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. METHODS: A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. RESULTS: The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. CONCLUSIONS: Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons' ownership of the research process. TRIAL REGISTRATION: Prospero 2021: CRD42021253736.

Untreated Psychiatric and Substance Use Disorders Among Caregivers With Children Reported to Child Protective Services.

Importance: Mental and substance use disorders can interfere with parents' ability to care for their children and are associated with a greater likelihood of child protective services involvement to address child maltreatment. Parent engagement in psychiatric and substance use disorder treatment can prevent child maltreatment and family separations. Objective: To determine whether caregivers with psychiatric or substance use disorders whose children were referred to child protective services received Medicaid-funded psychiatric or substance use disorder treatment. Design, Setting, and Participants: Caregivers listed on child welfare records were linked with their Medicaid records using 2017 to 2020 Medicaid and child welfare data from Florida and Kentucky. Medicaid claims were analyzed to determine if caregivers had a psychiatric or substance use disorder diagnosis and whether those caregivers received counseling or medications. The analysis was conducted in 2023. Exposure: Diagnosis of a psychiatric or substance use disorder in 2020. Main Outcome and Measure: Receipt of psychiatric or substance use disorder counseling or medications. Results: Of the 58 551 caregivers, 65% were aged between 26 and 40 years; 69% were female and 31% were male. Overall, 78% identified as White, 20% identified as Black/African American, and less than 1% identified as American Indian/Alaska Native, Asian, or Native Hawaiian/Other Pacific Islander. In 2020, 59% of caregivers with Medicaid and children referred to child protective services had a mental health or substance use disorder diagnosis, compared with 33% of age- and sex-matched Medicaid beneficiaries without children referred to child protective services (P < .001). Among caregivers with a psychiatric disorder, 38% received counseling and 67% received psychiatric medication. Among those with a substance use disorder, 40% received counseling and 38% received a substance use disorder medication. Conclusions and Relevance: In this case-control study, despite Medicaid coverage of an array of effective behavioral health treatments, large portions of caregivers with Medicaid coverage, who need treatment and whose children were referred to child protective services, were not receiving treatment. Medicaid and child welfare agencies should make a greater effort to connect caregivers to behavioral health services.

Acceptance of a Digital Assistant (Anne4Care) for Older Adult Immigrants Living With Dementia: Qualitative Descriptive Study.

BACKGROUND: There is a need to develop and coordinate dementia care plans that use assistive technology for vulnerable groups such as immigrant populations. However, immigrant populations are seldom included in various stages of the development and implementation of assistive technology, which does not optimize technology acceptance. OBJECTIVE: This study aims to gain an in-depth understanding of the acceptance of a digital personal assistant, called Anne4Care, by older adult immigrants living with dementia in their own homes. METHODS: This study used a qualitative descriptive research design with naturalistic inquiry. A total of 13 older adults participated in this study. The participants were invited for 2 interviews. After an introduction of Anne4Care, the first interview examined the lives and needs of participants, their expectations, and previous experiences with assistive technology in daily life. Four months later, the second interview sought to understand facilitators and barriers, suggestions for modifications, and the role of health care professionals. Three semistructured interviews were conducted with health care professionals to examine the roles and challenges they experienced in the use and implementation of Anne4Care. Content analysis, using NVivo11, was performed on all transcripts. RESULTS: All 13 participants had an immigration background. There were 10 male and 3 female participants, with ages ranging from 52 to 83 years. Participants were diagnosed with an early-stage form of dementia or acquired brain injury. None of the older adult participants knew or used digital assistive technology at the beginning. They obtained assistance from health care professionals and family caregivers who explained and set up the technology. Four themes were found to be critical aspects of the acceptance of the digital personal assistant Anne4Care: (1) use of Anne4Care, (2) positive aspects of Anne4Care, (3) challenges with Anne4Care, and (4) expectations. Assistance at first increased the burden on health care professionals and families. After the initial effort, most health care professionals and families experienced that Anne4Care reduced their tasks and stress. Contributions of Anne4Care included companionship, help with daily tasks, and opportunities to communicate in multiple languages. On the other hand, some participants expressed anxiety toward the use of Anne4Care. Furthermore, the platform required an internet connection at home and Anne4Care could not be used outside the home. CONCLUSIONS: Although older adult immigrants living with dementia had no previous experience with digital assistive technology specifically, the acceptance of the digital personal assistant, called Anne4Care, by older adult immigrants living with dementia was rather high. The digital assistant can be further developed to allow for interactive conversations and for use outside of one's home. Participation of end users during various stages of the development, refinement, and implementation of health technology innovations is of utmost importance to maximize technology acceptance.

Difficulties Fulfilling Self-Care Needs Among Family Caregivers: An Observational Study.

IMPORTANCE: Assuming the care of a family member with a disability or chronic illness constitutes a health risk factor for caregivers, who frequently overlook their own self-care. OBJECTIVE: To analyze the self-care activities (SCAs) among caregivers of a family member with a disability or chronic illness and assess the impact on their satisfaction and quality of life (QoL). DESIGN: Descriptive, cross-sectional, analytic study. SETTING: Community. PARTICIPANTS: Five hundred caregivers of family members with a disability or chronic illness in the city of Zaragoza, Spain. OUTCOMES AND MEASURES: The family caregivers' occupational performance and satisfaction were assessed with the Canadian Occupational Performance Measure, and their QoL was assessed with the World Health Organization-Quality of Life. RESULTS: In total, 32.8% of family caregivers had difficulty in all activities related to self-care, 46.6% had difficulty sleeping and resting, 31.6% had difficulty receiving health-related treatments, and 31.2% had difficulty with physical exercise. Women and younger family caregivers showed greater impairment in self-care. Occupational performance, satisfaction, and QoL worsened as the number of affected activities increased. CONCLUSIONS AND RELEVANCE: Caring for a family member with a disability or chronic illness has a negative impact on the SCAs of caregivers, especially among female caregivers and those of younger age. Caregiving is also associated with lower occupational performance, satisfaction, and QoL. Plain-Language Summary: Caring for a family member with a disability or chronic illness can become a health risk for caregivers, who frequently ignore their own self-care. The study results found that women and younger family caregivers showed a greater decline in self-care. This study provides information to help occupational therapists to work with family caregivers to prevent a decline in their self-care and improve their quality of life.

Changes in Caregiver Outcomes After Participation in the Engaged Eaters Program: A Caregiver-Mediated Feeding Intervention for Autistic Children and Their Families.

IMPORTANCE: Caregivers are essential partners in caregiver-mediated interventions that build on family routines and practices. Research identifying how participation as an intervention partner influences caregivers' outcomes, including stress and self-efficacy, is scarce. OBJECTIVE: To evaluate caregiver outcomes (stress, self-efficacy, and positive feeding responses and confidence) after participation in the Engaged Eaters Program. DESIGN: Quasi-experimental pretest-posttest design. SETTING: In-home via telehealth. PARTICIPANTS: Fourteen primary caregivers of an autistic child (ages 2-7 yr) with feeding challenges. INTERVENTION: The Engaged Eaters Program-Telehealth, a caregiver-mediated 6-mo in-home telehealth feeding intervention for autistic children ages 2 to 7 yr that included 24 intervention visits, eight caregiver training modules, and consultation with a dietician. OUTCOMES AND MEASURES: Relationships between child feeding challenge severity and caregiver outcomes and individual differences in caregivers' intervention responses were evaluated. We assessed caregivers' stress (Parenting Stress Index, Fourth Edition Short Form), self-efficacy (Parent Sense of Competence Scale), Positive Feeding Responses and Confidence (PFRC; composite score of items from other assessments), and individual intervention response using pre- to postintervention change in scores. RESULTS: Exploration of individual differences revealed that only caregivers with intake PFRC scores below the mean made significant improvements by the end of the intervention. No significant group-level changes were identified for stress, self-efficacy, or PFRC. Feeding challenge severity was not significantly related to caregiver outcomes. CONCLUSIONS AND RELEVANCE: The results emphasize the importance of considering baseline practices, efficacy, and caregiver confidence when engaging caregivers in intervention. Future research should explore the nuanced relationship between caregiver outcomes and child characteristics. Plain-Language Summary: Caregivers are essential partners with feeding interventions that build on family routines and practices. When working with caregivers, occupational therapists should consider caregivers' readiness for and responses to an intervention because intervention practices may differentially affect caregivers' parenting practices, confidence, and self-efficacy. Caregivers' responses may also affect the overall effectiveness of a caregiver-mediated intervention. Positionality Statement: The term caregiver-mediated in used throughout this article in place of parent-mediated to be inclusive of all types of caregivers.