Caregiver Involvement Research Articles

TRANSITIONS IN MEDICATION MANAGEMENT AMONG PATIENTS WITH DEMENTIA: PATIENT-CAREGIVER PERSPECTIVES

Abstract Older adults with Alzheimer’s disease and related dementias (ADRD) have higher rates of multimorbidity and polypharmacy. Medication adherence is critical to maintain health but is difficult with complex regimens. Little is known about how older adults with varying levels of cognitive impairment self-manage medications, and how responsibilities transition to caregivers. We conducted qualitative interviews with patient-caregiver dyads exploring how they managed multidrug regimens. Patients were eligible if they had 1) mild cognitive impairment (MCI), mild ADRD or moderate ADRD, 2) ≥3 chronic conditions, 3) ≥5 medicines and 4) a caregiver. Three coders applied a priori codes to transcripts and analyses followed the framework method. We interviewed 60 participants (Patients: mean age 78 years, 63% female, 50% white, 33% Black; Caregivers: mean age 65 years, 73% female, 60% spouse, 33% child). Patients took 9 medicines on average; cognitively, 36% had MCI, 40% mild ADRD and 23% moderate ADRD. Interviews revealed a tension between preservation of patient independence with early caregiver involvement. Patients and caregivers reported a strong preference towards patient autonomy in medication management, and patients with MCI and mild ADRD managed their medications independently. Among patients with moderate ADRD, caregivers assumed all medication responsibilities except when living separately. In those scenarios, caregivers set up organizers and made reminder calls, but did not observe medication intake. Transitions in medication management followed patient-driven medication errors that resulted in adverse events. These findings have important implications; clinicians should initiate conversations with caregivers and patients about early medication assistance and work to simplify regimens.

Mother-father and parent-grandmother coparenting conflict and caregiver involvement in adolescent parent families

Family systems theory recognizes the complex interconnected subsystems within families, yet little is known about how multigenerational coparenting affects coparenting and caregiving outcomes within adolescent parent families. The current study estimated auto-regressive cross-lag models to evaluate the interrelation between mother-father and parent-grandparent coparenting subsystems and caregiver involvement using reports of coparenting conflict and caregiver involvement from 280 adolescent parents ( Mage = 17.02, SD = 1.42; 83.6% Latine; 69.6% women) at two time-points, collected nine-months apart. Results showed stability in coparenting conflict and caregiver involvement among mother-father and parent-grandparent dyads and one intergenerational cross-lag effect. Grandmother involvement at time 1 (T1) was negatively linked to parent-grandparent coparenting conflict at time 2 (T2). Gender differences also emerged, such that (1) father’s report of mother involvement at T1 was positively associated with mother-father coparenting conflict at T2; (2) father’s report of mother involvement at T1 was negatively associated with father’s report of grandmother involvement at T2; and (3) father’s report of parent-grandparent coparenting conflict at T1 was negatively associated with father’s report of mother involvement at T2. Findings underscore connections between intergenerational coparenting subsystems and suggest gender differences in sensitivity, malleability, and the influence of the coparenting dyad on coparenting conflict and caregiver involvement. Further research on adolescent coparenting and caregiving dynamics across coparenting subsystems is needed to strengthen interventions aimed at serving young mothers and fathers.

Exploring stakeholders’ experiences of comprehensive geriatric assessment in the community and out-patient settings: a qualitative evidence synthesis

BackgroundComprehensive Geriatric Assessment (CGA) is a multidimensional interdisciplinary process that addresses an older adult’s biopsychosocial capabilities to create an integrated and co-ordinated plan of care. While quantitative evidence that demonstrates the positive impacts of CGA on clinical and process outcomes has been synthesised, to date qualitative research reporting how older adults and service providers experience CGA has not been synthesised. This study aimed to systematically review and synthesise qualitative studies reporting community-dwelling older adults’, caregivers’ and healthcare professionals’ (HCP) experiences of CGA in the primary care and out-patient (OPD) setting.MethodWe systematically searched five electronic databases including MEDLINE, CINAHL, PsycINFO, PsycARTICLES and Social Sciences Full Text targeting qualitative or mixed methods studies that reported qualitative findings on older adults’, caregivers’ and HCPs’ experiences of CGA in primary care or out-patient settings. There were no language or date restrictions applied to the search. The protocol was registered with the PROSPERO database (Registration: CRD42021283167). The methodological quality of the included studies was appraised using the Critical Appraisal Skills Programme checklist for qualitative research. Results were synthesised according to Noblit and Hare’s seven-step approach to meta-ethnography, which involves an iterative and inductive process of data synthesis.ResultsFourteen studies were included where CGA was completed in the home, general practice, out-patient setting in acute hospitals and in hybrid models across the community and hospital-based OPD settings. Synthesis generated four key themes: (1) CGA is experienced as a holistic process, (2) The home environment enhances CGA, (3) CGA in the community is enabled by a collaborative approach to care, and (4) Divergent experiences of the meaningful involvement of older adults, caregivers and family in the CGA process.ConclusionFindings demonstrate that CGA in a home-based or OPD setting allows for a holistic and integrated approach to care for community-dwelling older adults while increasing patient satisfaction and accessibility of healthcare. Healthcare professionals in the community should ensure meaningful involvement of older adults and their families or caregivers in the CGA process. Further robustly designed and well reported trials of different models of community-based CGA informed by the findings of this synthesis are warranted.

Multilayer framework for digital multicomponent platform design for colorectal survivors and carers: a qualitative study.

The advent of eHealth services offers the potential to support colorectal cancer (CRC) survivors and their informal caregivers (ICs), yet research into user needs and design requirements remains scant. This exploratory qualitative study addresses this knowledge gap by focusing on the development of a Digital Multicomponent Platform (DMP) designed to provide comprehensive support to these populations. The objective of this research is to use qualitative methodologies to identify key user needs and design requirements for eHealth services. It seeks to propose and apply a multi-tiered framework for creating a DMP that encapsulates the needs of CRC survivors and their ICs. Skype-based focus groups (FGs) were utilized to gather qualitative data from CRC survivors and ICs. This approach served to elicit crucial themes integral to the design of the DMP. A multi-tiered framework was subsequently developed to integrate user-centered design (UCD) principles and requirements with predetermined outcomes, eHealth services, and IT infrastructure. The first stage of the analysis identified five crucial themes: (1) the importance of healthcare system interaction via eHealth, (2) interaction between healthcare providers and peers, (3) lifestyle and wellness considerations, (4) platform content and user interface requirements, (5) caregiver support. The second stage analysis applied the multi-tiered framework, to determine the DMP that was conceptualized from these themes, underscores the significance of personalized content, caregiver involvement, and integration with electronic health records (EHRs). The study offers novel insights into the design and development of digital supportive care interventions for CRC survivors and their caregivers. The results highlight the utility of user-centered design principles, the significance of personalized content and caregiver involvement, and the need for a unified health data platform that promotes communication among patients, healthcare providers, and peers. This multi-tiered framework could serve as a prototype for future eHealth service designs.

Adolescent experiences, perceptions, and preferences for the process of HIV status disclosure in Kenya.

Disclosure of HIV status to adolescents living with HIV has been associated with improved treatment outcomes. However, there are limited data regarding the experiences of, perceptions of, and preferences for the process of disclosure of HIV status among adolescents and young adults living with HIV (AYLH), especially in sub-Saharan Africa. Young adults living with HIV from 20 HIV clinics in Kenya who participated in a clinical trial evaluating the effectiveness of a disclosure and transition package completed an anonymous survey in 2019. We described their experiences and preferences using counts and proportions and assessed factors associated with satisfaction with the disclosure process using linear regression, reporting age-adjusted mean differences (aMD), and 95% confidence intervals (95%CIs). Of the 375 enrolled AYLH, 265 (71%) had perinatally acquired HIV, of whom 162 (61%) were female. The median age of the enrolled AYLH was 16 years (IQR: 14-19 years), and all of them were on antiretroviral therapy (ART). For over half (55%) of the participants, caregivers disclosed their HIV status, and 57% preferred that their caregivers disclose the status to them. Most (78%) of the participants preferred full disclosure by 12 years of age. The majority (69%) believed the disclosure was planned, and 11% suspected being HIV positive before the disclosure. Overall, 198 (75%) AYLH reported that they were ready for disclosure when it happened, and 86% were satisfied with the process. During both pre-disclosure (67 and 70%, respectively) and post-disclosure (>75% for each), AYLH felt supported by the clinic and caregivers. Factors associated with higher satisfaction with the disclosure process were pre-disclosure clinic support (aMD: 0.19 [95%CI: 0.05-0.33]) and pre-disclosure (aMD: 0.19 [0.06-0.31]) and post-disclosure (aMD: 0.17 [0.03-0.31]) caregiver support. AYLH who suspected they were HIV positive before they were disclosed to tended to have lower satisfaction when compared to those who never suspected (aMD: -0.37 [-0.74-(-0.01)]). Overall, they reported that disclosure positively influenced their ART adherence (78%), clinic attendance (45%), and communication with caregivers (20%), and 40% reported being happier after disclosure. Young adults living with HIV advocated for an appropriately timed disclosure process with the involvement of caregivers and healthcare workers (HCWs). Support from caregivers and HCWs before and during disclosure is key to improving their disclosure experience.

Neurocognitive study of bodily and traumatic memory in a Moroccan novel on Alzheimer’s disease

AbstractBackgroundPerson‐centered care in dementia focuses on empowering patient’s wellbeing and quality of life. In this context, Ben Jelloun’s novel About My Mother (2016) addresses multiple issues related to social justice, hegemony, ageism, and women’s health conditions by combining literary, fictional autobiography and factual biography in a critical period of Moroccan colonial and post‐colonial history. We will study Lalla Fatma as a prototype carrying a triple burden: early traumatic events of life, weight of tradition, and Alzheimer’s disease (AD).MethodText mining was used for lexical‐semantic analysis and to develop patterns of themes across the novel’s corpora. A neurocognitive approach has been used to describe gendered aesthetics, antero‐retrograde amnesia, traumatic and bodily memory.ResultTheoretical framework from Tulving descriptions of noetic and autonoetic memory disorders have been used to classify Lalla Fatma amnesia. Alzheimer’s disease is an incentive to adopt the narrative of filiation and reconstruction that brings into life distant memories. Ben Jelloun’s novel gives the subjectivity “insight of disease” more time and space in order to express all states of memory in a stream of consciousness until its abolition. Moreover, the question of the genesis of psychogenic‐organic memory disorders through early trauma in the life of Lalla Fatma could favor a triple stress at a physiological level “a declined global health,” a microstructural level “microaggressions from her caregivers,” and macrostructural level “the trauma of the colonial past and successive widowing”.ConclusionThis study characterized AD using a mixture of fictional and factual autobiography. The anguish of successive widowing may reactivate psychic traces and an intrapsychic conflict between the desire of Lalla Fatma to preserve the lost object “body and memory” and the weight of society “culture and tradition”. The person‐centered care was successfully implemented thanks to the involvement of multiple caregivers around the main character.

FC10: Telehealth for Older Adults: Developing telehealth competencies to ensure access, quality and equity across the lifespan

Background:Telehealth has been an important method of health care delivery during the pandemic, particularly for older adults who have been more vulnerable to the physical and psychosocial impacts of the pandemic and associated isolation. Older adults have specific medical and mental health care needs that would benefit from having access to geriatric speciality services, however these services may be difficult to access especially for those living in rural areas. Though the use of technology and telehealth has greatly expanded during the pandemic, many health systems and clinicians lack the necessary knowledge, skills and attitudes to fully integrate technology in the health care of older adults. General telehealth competencies are available to guide educators, however, competencies to address the unique needs of older adults have yet to be developed.Objectives:This literature review was conducted to evaluate what approaches are needed for clinicians to gain skills and knowledge in order to competently deliver telehealth services to older adults.Methods:The review was completed using the six-stage scoping review process in line with the PRISMA checklist in PubMed/Medline and other databases from years 2000 to 2023 based on concept areas of (I) education/competencies, (II) telehealth delivery and (III) older adults.Results:From a total of 813 articles, the authors found 88 eligible for full text review and 16 papers sufficiency relevant to the search criteria. Some evidence exists for telehealth competencies specifically for clinicians caring for older adults. Themes that emerged include the role of interprofessional and experiential learning, telepresence, technology training and support, and adaptations for older adults. Education of clinicians and trainees increased knowledge of its usefulness and improved attitudes related to acceptance and utilization. Training rather than ad hoc exposure to telehealth technology was emphasized. Clinician/student-provided training improved access and acceptance to telehealth in older adults. Suggested adaptations for older patients included the involvement of caregivers in the visit, especially for patients with cognitive impairment.Conclusions:It appears that training – more than ad hoc experience – for clinicians and trainees increases knowledge, skills and attitudes toward telehealth for the care of older adults. Additional research is needed to define training interventions, cross-sectional versus longitudinal approaches and specify competencies (i.e., skills) and optimal learning methods.

Trial in Progress: Patient-Reported Outcome Measures in the Prospective Observational Cohort Study of Patients at Risk for Chronic Graft-Versus-Host Disease in the United States (THRIVE)

Background and Significance: Allogeneic hematopoietic cell transplantation (alloHCT) is a curative immunotherapy for patients with hematologic disorders. However, graft-versus-host-disease (GVHD) is a major limitation to the success of alloHCT, with chronic GVHD (cGVHD) as the leading cause of morbidity and mortality. The pleomorphic nature of cGVHD makes the diagnosis and patient management challenging for clinicians; thus, patient-reported symptoms often guide in diagnosing and determining the severity of cGVHD. Our current understanding of cGVHD is largely based on data from registries, single-institution prospective studies, and the cGVHD Consortium with representation from tertiary care academic centers. Prospective studies including patient-reported outcomes and a focus on a more representative and generalizable sample of patients with cGVHD are needed to better understand cGVHD symptoms, disease burden, and practice patterns for management. This trial in progress focuses on broad patient-centered assessment of post-alloHCT medical and psychosocial complications and patient-reported caregiver involvement in a diverse and contemporary patient population. This study uses multiple organ- or system-directed patient-reported outcome measures (PROMs) to help identify cGVHD symptoms, severity, and impact on patient quality of life including financial impact. The primary objective of THRIVE is to assess the clinical course and burden of cGVHD, including diagnosis and severity recorded in electronic case report forms (eCRFs) and PROMs. Secondary objectives include measuring healthcare resource utilization and patient economic and employment impact associated with cGVHD management, as well as patient-reported organ-specific symptoms. Study Design and Methods: THRIVE is a prospective, longitudinal, observational study (NCT05919511) of alloHCT recipients in the United States that uses a hybrid model designed to work with HCT centers and a virtual platform. Eligible patients are ≥18 years old, received alloHCT 90-180 days before enrollment, and are able to complete patient-assessment questionnaires provided in their preferred language either alone or with minimal caregiver assistance. Up to 1500 alloHCT recipients will be recruited at HCT sites (with the expectation that ~500 will have cGVHD symptoms at enrollment; ~500 are estimated to develop cGVHD during the course of the study; ~500 are estimated not to develop cGVHD during the study; Figure). Patients have the option to participate on a virtual platform. Patients will be followed for 36 months from date of enrollment or until the earliest of study termination, withdrawal, or death. Data from 13 PROMs (Table) divided into 3 groups will be collected every 3 months using a decentralized virtual platform. To reduce survey burden, patients will be randomized into 1 of 6 sequence groups to capture 4-5 PROMs per month in year 1 and every 2 months in years 2 and 3. Clinical data, including medications and adverse events, will be collected and abstracted into eCRFs every 3 months. In general, reporting of results will be descriptive for variables of interest. Summary statistics for continuous variables and for categorical variables will be calculated for all patients as well as for subgroups of interest. Whenever applicable, 95% confidence intervals will be calculated for endpoint estimates. Univariate, multivariate, or repeated-measurement analyses will be performed to assess factors associated with evolution of clinical manifestations of and complications from cGVHD. Recruitment for this study is ongoing.

Family caregivers' emotional and communication needs in Canadian pediatric emergency departments.

To describe the extent to which caregivers' emotional and communication needs were met during pediatric emergency department (PED) visits. Secondary objectives included describing the association of caregiver emotional needs, satisfaction with care, and comfort in caring for their child's illness at the time of discharge with demographic characteristics, caregiver experiences, and ED visit details. Electronic surveys with medical record review were deployed at ten Canadian PEDs from October 2018 -March 2020. A convenience sample of families with children <18 years presenting to a PED were enrolled, for one week every three months, for one year per site. Caregivers completed one in-PED survey and a follow-up survey, up to seven days post-visit. This study recruited 2005 caregivers who self-identified as mothers (74.3%, 1462/1969); mean age was 37.8 years (SD 7.7). 71.7% (1081/1507) of caregivers felt their emotional needs were met. 86.4% (1293/1496) identified communication with the doctor as good/very good and 83.4% (1249/1498) with their child's nurse. Caregiver involvement in their child's care was reported as good/very good 85.6% (1271/1485) of the time. 81.8% (1074/1313) of caregivers felt comfortable in caring for their child at home at the time of discharge. Lower caregiver anxiety scores, caregiver involvement in their child's care, satisfactory updates, and having questions adequately addressed positively impacted caregiver emotional needs and increased caregiver comfort in caring for their child's illness at home. Approximately 30% of caregivers presenting to PEDs have unmet emotional needs, over 15% had unmet communication needs, and 15% felt inadequately involved in their child's care. Family caregiver involvement in care and good communication from PED staff are key elements in improving overall patient experience and satisfaction.

Coping Factors for Caregivers of Children With Medical Complexity During Hospitalization.

This study aimed to identify coping factors for caregivers of children with medical complexity (CMC) to manage the stressors and experience associated with their child's hospitalization. We conducted semistructured interviews with CMC caregivers over a video-conferencing platform to examine factors that they perceive impact their coping while their children are hospitalized. Interviews were audio-recorded, transcribed, and imported into a qualitative coding software (MAXQDA). Using a modified grounded theory approach, we assigned process and in vivo codes to the transcripts and conducted interpretive analysis to identify themes. Once we reached thematic saturation, we finalized themes by discussing them to achieve group consensus and processed themes through triangulation with our institution's pediatric family advisory council. We interviewed 14 caregivers (11 mothers and 3 fathers) and identified 3 major themes. The factors that contributed to CMC caregiver coping with their child's hospitalizations included caregivers: feeling that they are prioritizing their child's needs over their own, feeling trust in their child's interdisciplinary healthcare team, and feeling their self-care practices are well adjusted to the hospital setting. Our study found 3 coping factors for caregivers of CMC during their child's hospitalization. Development and testing of interventions that enhance these coping practices may better support CMC caregivers during their child's hospitalizations. Potential interventions could include developing structured processes to establish caregiver involvement in their child's hospital care and helping caregivers modify their existing coping mechanisms to the hospital setting.

Do caregivers’ involvement in Type 2 diabetes education affect patients’ health outcomes?: A systematic review and meta-analysis

Introduction: The prevalence of Type 2 diabetes mellitus (T2DM) is rising worldwide. Patients frequently struggle with controlling their diabetes and need the assistance of caregivers for effective self-management because managing diabetes requires a variety of strategies, including diet, glucose monitoring, and exercise. This study aimed to examine the effect of caregiver involvement in T2DM education within a community on patients’ diabetes care outcomes. Methods: Based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, a systematic review of all published studies from the earliest record to May 2022 that reported adult caregivers of T2DM patients who participated in educational interventions concerning diabetes management and that reported one or more outcomes of the interventions were conducted. Four databases were used, including PubMed, Cochrane Library, EMBASE, and CINAHL. The meta-analysis focused on glycated hemoglobin (HbA1c) levels among randomized controlled trials (RCTs), with additional attention to lipid levels. Review Manager 5.4 was used to perform this meta-analysis. Results: A total of 17 out of 683 studies were synthesized. Involvement of caregivers in T2DM education is shown to reduce body mass index and HbA1c. This involvement also improves patients’ knowledge, physical activity, and self-efficacy, but the effect on medication adherence varies. A meta-analysis of six RCT studies shows that caregiver involvement in T2DM education reduced pooled HbA1c levels by 0.83 (95% Confidence interval: −1.27–−0.38) compared to involvement (p = 0.0003). Meta-analysis of three types of lipids (low-density lipoprotein, total cholesterol, and high-density lipoprotein) showed no strong evidence that caregiver participation in diabetes education improved lipid levels. Conclusions: Caregivers play key roles in diabetes management and can contribute to improving patient HbA1c levels. Future research should focus on enhancing caregiver participation in T2DM education.

Perceptions, experiences, and beliefs regarding urinary tract infections in patients with neurogenic bladder: A qualitative study.

Although urinary tract infections (UTIs) are common in patients with neurogenic bladder (NB), limited data exist on UTI perceptions, experiences, and beliefs in these patients. We recruited adults with NB due to spinal cord injury/disorder (SCI/D) or multiple sclerosis (MS) at three Veterans Affairs (VA) medical centers to participate in 11 virtual focus groups. Audio transcripts were coded using a mixed approach with primary deductive codes linked to the Health Belief Model, and secondary inductive codes informed by grounded theory. Twenty-three Veterans (SCI/D, 78%; MS, 18.5%) participated between May 2021 and May 2022. Participants' perspectives, experiences, and beliefs about UTI were reflected in three major themes: 1) influence of caregivers; 2) influence of the healthcare environment and provider characteristics; and 3) barriers and facilitators to care. Caregivers promoted care-seeking behavior, enabled in-home care, and enhanced participants' self-efficacy to understand educational material. Participants had poor perceptions of providers who were not knowledgeable about NB or ineffectively communicated. Good relationships with providers who knew the participant well improved self-efficacy to follow provider recommendations. These results suggest that patient-centered interventions to improve UTI management in this population should expand caregiver involvement, enhance patient-provider communication, and target provider types and care settings that lack familiarity with NB.

Developing a home-based pulmonary rehabilitation programme for patients with chronic respiratory diseases in Malaysia: A mixed-method feasibility study.

The COVID-19 pandemic has underscored the importance of remote healthcare and home-based interventions, including pulmonary rehabilitation, for patients with chronic respiratory diseases (CRDs). It has also heightened the vulnerability of individuals with underlying respiratory conditions to severe illness from COVID-19, necessitating exploration and assessment of the feasibility of delivering home - pulmonary rehabilitation (home-PR) programmes for CRD management in Malaysia and other countries. Home-based programmes offer a safer alternative to in-person rehabilitation during outbreaks like COVID-19 and can serve as a valuable resource for patients who may be hesitant to visit healthcare facilities during such times. We aimed to assess the feasibility of delivering a home-PR programme for patients with CRDs in Malaysia. We recruited patients with CRDs from two hospitals in Klang Valley, Malaysia to a home-PR programme. Following centre-based assessment, patients performed the exercises at home (five sessions/week for eight weeks (total 40 sessions)). We monitored the patients via weekly telephone calls and asked about adherence to the programme. We measured functional exercise capacity (6-Minutes Walking Test (6MWT) and Health-Related Quality-of-Life (HRQoL) (COPD Assessment Test (CAT)) at baseline and post-PR at nine weeks. We conducted semi-structured interviews with 12 purposively sampled participants to explore views and feedback on the home-PR programme. The interviews were audio recorded, transcribed verbatim, and analysed thematically. We included 30 participants; two withdrew due to hospitalisation. Although 28 (93%) adhered to the full programme, only 11 (37%) attended the post-PR assessment because COVID-19 movement restrictions in Malaysia at that time prevented attendance at the centre. Four themes emerged from the qualitative analysis: involvement of family and caregivers, barriers to home-PR programme, interactions with peers and health care professionals, and programme enhancement. Despite the COVID-19 pandemic, the home-PR programme proved feasible for remote delivery, although centre-based post-PR assessments were not possible. Family involvement played an important role in the home-PR programme. The delivery of this programme can be further improved to maximise the benefit for patients.

Comparison of palliative care education for family caregivers in high-and-low-income countries: An integrative review.

In most resource-limited countries, palliative care is still under development. Despite the differences, the involvement of family caregivers is fundamental in both High-Income Countries (HICs) and Low-Income Countries (LICs). The lack of formal support in LICs implies that educational interventions to support family caregivers in this region could be more complex and urgently needed than in HICs. To comprehend the existing situation and identify the gaps in LICs, using HICs as a benchmark standard and conducting a review comparing educational interventions in both regions is essential. To identify and compare the existing implementation of education for family caregivers of patients with advanced cancer in LICs and HICs. An integrative review guideline by Whittemore and Knafl was followed. Interventional studies related to education for family caregivers providing care for adult patients with cancer were included, and review articles were excluded. Data were obtained from PubMed, EBSCO, ProQuest, and ClinicalKey. The search was conducted on 18 November 2021 and updated on 9 August 2023. Data reduction, data comparison, conclusion drawing, and data verification were conducted. Out of the 11 studies included, nine were randomized controlled trials, and two were quasi-experimental studies. Among them, seven (63%) were conducted in HICs, and four (37%) were carried out in LICs. In both regions, the psychological aspect was the most commonly addressed subject in palliative care education for family caregivers. However, in LICs, no articles specifically addressed the social and spiritual aspects of family caregivers' education. Research conducted in LICs mostly involved nurses, while studies in HICs included a more diverse range of healthcare professionals. Typically, these programs required two to three sessions, with 30-60 minutes duration for 3-12 weeks. The social and spiritual aspects can be integrated into family caregivers' training programs in LICs in the near future. Nurses, as an integral part of the multidisciplinary team, are capable of contributing to the development of educational programs for family caregivers, especially in resource-limited countries where patients rely heavily on their caregivers and relatives. Support from nurses is fundamental in such contexts.

Improving reading abilities, attitudes and practices: A home-based intervention of supplementary texts for young readers in Cambodia

Through a Social Cognitive Theory framework, this experimental study examined the impact of high-quality, low-cost reading materials on young Cambodian students' literacy development. The intervention involved age-appropriate storybooks and reading supports for children and caregivers. Results demonstrated that a combination of books and support effectively improved reading outcomes. Caregivers observed increased reading confidence, while children exhibited higher reading frequency, duration, and increased proficiency. The study emphasizes the importance of accessible reading materials for literacy, particularly in low-resource settings. Findings suggest that policymakers and educators should consider prioritizing appropriate reading resources, local content creation, and caregiver involvement to foster a supportive learning environment.

Caring for Dementia Caregivers: Psychosocial Factors Related to Engagement in Self-Care Activities.

Caregivers often prioritize the needs of the care recipient and neglect their own health needs. It is imperative to understand the factors related to their self-care practices and engagement in self-care activities. The present study examined the extent to which dementia caregivers engaged in self-care activities, how this varied depending on caregiver characteristics, and whether self-care engagement mediated the relationship between social support and caregiver outcomes. The study utilized baseline data from a diverse sample of dementia caregivers (N = 243) who participated in a randomized trial evaluating a psychosocial technology-based caregiver intervention. Results showed that the dementia caregivers engaged in low levels of self-care activities and that their engagement varied based on the caregivers' background characteristics (age, gender, race/ethnicity, relationship to the care recipient, and employment status). Less caregiver involvement (e.g., less ADL/IADL help provided and more caregiver preparedness) and more social support predicted higher self-care activity engagement. Self-care activity engagement served as a mediator, such that more social support predicted more self-care activities, which, in turn, were associated with more positive perceptions of caregiving and less caregiver burden and depression. The findings suggest a need for interventions that promote self-care engagement among dementia caregivers and underscore the importance of social support and caregiver preparedness to caregivers' well-being.

Healthcare professional and manager perceptions on drivers, benefits, and challenges of telemedicine: results from a cross-sectional survey in the Italian NHS

BackgroundThe Covid-19 pandemic provided new challenges and opportunities for patients and healthcare providers while accelerating the trend of digital healthcare transformation. This study explores the perspectives of healthcare professionals and managers on (i) drivers to the implementation of telemedicine services and (ii) perceived benefits and challenges related to the use of telemedicine across the Italian National Health Service.MethodsAn online cross-sectional survey was distributed to professionals working within 308 healthcare organisations in different Italian regions. Quantitative and qualitative data were collected through a self-administered questionnaire (June-September 2021). Responses were analysed using summary statistics and thematic analysis.ResultsKey factors driving the adoption of telemedicine have been grouped into (i) organisational drivers (reduce the virus spread-80%; enhance care quality and efficiency-61%), (ii) technological drivers (ease of use-82%; efficacy and reliability-64%; compliance with data governance regulations-64%) and (iii) regulatory drivers (regulations’ semplification-84%). Nearly all respondents perceive telemedicine as useful in improving patient care (96%). The main benefits reported by respondents are shorter waiting lists, reduced Emergency Department attendance, decreased patient and clinician travel, and more frequent patient-doctor interactions. However, only 7% of respondents believe that telemedicine services are more effective than traditional care and 66% of the healthcare professionals believe that telemedicine can’t completely substitute in-person visits due to challenges with physical examination and patient-doctor relationships. Other reported challenges include poor quality and interoperability of telemedicine platforms and scarce integration of telemedicine with traditional care services. Moreover, healthcare professionals believe that some groups of patients experience difficulties in accessing and using the technologies due to socio-cultural factors, technological and linguistic challenges and the absence of caregivers.ConclusionsRespondents believe that telemedicine can be useful to complement and augment traditional care. However, many challenges still need to be overcome to fully consider telemedicine a standard of care. Strategies that could help address these challenges include additional regulations on data governance and reimbursements, evidence-based guidelines for the use of telemedicine, greater integration of tools and processes, patient-centred training for clinicians, patient-facing material to assist patients in navigating virtual sessions, different language options, and greater involvement of caregivers in the care process.

Medications for Opioid Use Disorder for Youth: Patient, Caregiver, and Clinician Perspectives

PurposeClinical trial data support use of medications for opioid use disorder (MOUD) in adolescents and young adults (“youth”), but qualitative data are lacking on the acceptability and importance of MOUD to youth, caregivers, and clinicians. We assessed how these stakeholders viewed the role of MOUD in treatment and recovery. MethodsWe recruited youth aged from 15 to 25 years with opioid use disorder who had received buprenorphine, naltrexone, or methadone and caregivers from a primary care-based youth addiction treatment program. We also recruited clinicians with addiction expertise from social work, nursing, pediatrics, internal medicine, and psychiatry. We conducted semistructured interviews assessing special considerations for MOUD use in youth. Three coders performed inductive and deductive thematic analysis of transcripts. ResultsAmong 37 participants, including 15 youth (age range, 17–25 years), nine caregivers, and 13 clinicians, we identified three themes. (1) Medications support recovery in the short term: Youth described MOUD as beneficial in managing withdrawal symptoms. Notably, some youth and caregivers preferred to limit MOUD duration. (2) Medication adherence is affected by type of medication, dosing regimen, and route of administration. Participants endorsed long-acting, injectable MOUD for ease of use and youth's ability to continue engagement in “normal activities” without daily medication. (3) Caregiver involvement can support medication decisions and adherence. Youth and some clinicians described the need to assess caregiver involvement before incorporating them into treatment; caregivers and other clinicians described caregivers as critical in supporting accountability. DiscussionMOUD is evidence-based, and its provision should be developmentally responsive and youth- and family-centered, incorporating caregivers when appropriate.

Provider Perspectives on Addressing Firearm Safety with Older Adults in Primary Care

ABSTRACT Objectives Chronic conditions, including mild cognitive impairment and depression, place older adults at high risk of firearm suicide. Approximately 40% of older adults have access to a firearm, and many do not store their firearms safely. However, firearm counseling occurs infrequently in clinical settings. Using by the Ottawa Decision Support Framework (ODSF) to conceptualize the decisional support needed by patients and their providers to facilitate firearm counseling, we explore provider perspectives on desired resources for addressing firearm safety with older adult patients. Methods From March – August 2022, we conducted 21 semi-structured interviews with primary care providers caring for older adults. We report deductive concepts as well as emergent themes. Results Major themes were identified from the three components of the ODSF; decisional needs, decision support and decisional outcomes. Themes included: provider self-efficacy to conduct firearm counseling, clinical workflow considerations, stories for change, patient diagnosis implications, and caregiver involvement. Conclusions There is a need for decision aids in the clinical setting that facilitate firearm counseling and promotes shared decision-making about firearm storage. Clinical Implications Implementing a decision aid in the clinical setting can improve provider self-efficacy to conduct firearm counseling and help reduce risk factors associated with firearm-related harm among older adults.

Exploring the Support and Involvement of Family Caregivers for Reablement Programs: A Qualitative Study.

Reablement is a person-centered, holistic approach promoting older adults' participation through social, leisure, and physical activities. Family caregivers are seldom involved in reablement services despite their wish to be an active member of the care team and expressing a need for more support and recognition. The voice of family caregivers is often forgotten when evaluating services such as reablement. Little is known how family caregivers can be involved and supported more effectively in reablement services, therefore the aim of our research is to investigate the perceived support and involvement of family caregivers. As part of the TRANS-SENIOR project, we studied perceived support and involvement of family caregivers during and after geriatric rehabilitation, a setting in which principles of reablement, like goal setting and training of daily activities, are applied. In total, fourteen semi-structured interviews were conducted with family caregivers of people admitted to a geriatric rehabilitation facility. Thematic analysis was used. Results reflected four themes: (1) support for family caregivers, (2) involvement in care, (3) trusting care professionals, and (4) asking for and accepting support. Family caregivers' experiences with support from care professionals were mainly ambivalent. While caregivers expressing a lack of support and information whilst also indicating that they do not expect to be supported by care professionals. Regarding involvement, caregivers wanted to be involved; ie express their opinion and be involved in decision-making. However, more involvement could also lead to a higher burden. There is a discrepancy between the perceived support and involvement of family caregivers, their expressed needs, and their expectations of care professionals. A personalized approach is needed to create room for the family caregiver to be an active participant in the care process while also providing the right amount of support, when preferred by the caregiver.