Caregiver Training Research Articles

Families as partners in neonatal neuro-critical care programs.

Parents of neonates with neurologic conditions face a specific breadth of emotional, logistical, and social challenges, including difficulties coping with prognostic uncertainty, the need to make complex medical decisions, and navigating new hopes and fears. These challenges place parents in a vulnerable position and at risk of developing mental health issues, which can interfere with bonding and caring for their neonate, as well as compromise their neonate's long-term neurodevelopment. To optimize neurologic and developmental outcomes, emerging neonatal neuro-critical care (NNCC) programs must concurrently attend to the unique needs of the developing newborn brain and of his/her parents. This can only be accomplished by embracing a family-centered care environment-one which prioritizes effective parent-clinician communication, longitudinal parent support, and parents as equitable partners in clinical care. NNCC programs offer a multifaceted approach to critical care for neonates at-risk for neurodevelopmental impairments, integrating expertise in neonatology and neurology. This review highlights evidence-based strategies to guide NNCC programs in developing a family-partnered approach to care, including primary staffing models; staff communication, implicit bias, and cultural competency trainings; comprehensive and tailored caregiver training; single-family rooms; flexible visitation policies; colocalized neonatal and maternal care; uniform mental health screenings; follow-up care referrals; and connections to peer support. IMPACT: Parents of neonates with neurologic conditions are at high-risk for experiencing mental health issues, which can adversely impact the parent-neonate relationship and long-term neurodevelopmental outcomes of their neonates. While guidelines to promote families as partners in the neonatal intensive care unit (NICU) have been developed, no protocols integrate the unique needs of parents in neonatal neurologic populations. A holistic approach that makes families true partners in the care of their neonate with a neurologic condition in the NICU has the potential to improve mental and physical well-being for both parents and neonates.

On the Move pad – a portable multipurpose pad: User feedback

Context/Objective Hard-shell toilet seats may compromise safety and hinder the participation of individuals at risk for pressure injuries (PIs) when using these facilities away from home in public, hotel, or family/friend restrooms. Moreover, people often add “wash-cloths” for additional padding for comfort, and to reduce the risk of PIs due to pressure or shearing on their wheelchairs surfaces. This study investigated the utilization of portable pads, initially designed for toilet use but adaptable to various places and contexts, while examining pad usability. Design A cross-sectional descriptive survey design. Setting Inpatient care, outpatient care, and community setting. Participants 45 individuals at risk of PIs. Results Participants extended the use of these pads beyond toilets, employing them as wheelchair armrest and leg rest pads in other settings. Feedback from a customized questionnaire indicated high levels of usefulness (8.5/10) and ease of use (9.1/10) attributed to the pads. Among the features, the top three favored were ease of use, comfort/cushioning, and function. Participants expressed a desire for a variety of sizes and colors to enable versatile usage and suggested incorporating a pocket for storing small items. Conclusions and Relevance Individuals at risk of PIs require cushioning not only on hard-shell toilet seats, but also for additional padding, protection and enhancing the use of wheelchairs. Rehabilitation professionals can play a crucial role in educating and training both clients and caregivers to understand PI prevention, enabling them to effectively leverage the pads in appropriate situations, thereby enhancing their comfort in their wheelchairs during social engagement.

Keeping the lamp lit: A program profile of a community-based social-emotional training for caregivers and educators

Developing social-emotional training opportunities for caregivers and professionals can promote higher quality care for children and families in the home and in early years services. Community-based efforts that integrate developmental-relational research into practice using a participatory approach are a growing area of interest and focus. The current paper provides a program profile of RAISE (Research and Practice Partnership: Building Awareness and Increasing Social-Emotional Capacity in the Early Years), a social-emotional training model that uses a bottom-up community-based approach to design and implement a developmental-relational training to strengthen caregivers’ and educators’ capacities to support children’s social-emotional development and mental health. We describe our training development approach, which integrates community engagement efforts with developmental-relational and clinical research, including examples of how participatory approaches may inform curricula development. Finally, we highlight several lessons learned from this training model, with the aim of informing future social-emotional development and practice initiatives.

Randomized Trial to Evaluate Effects of Peer- and Clinician-Led Interventions for Caregivers of Individuals With Acquired Brain Injury

ObjectiveTo evaluate the effectiveness of 2 interventions for caregivers of patients with acquired brain injury (ABI) transitioning home after inpatient rehabilitation, to prepare them for the role of caregiving and reduce stress and depression. DesignControlled trial with participants randomly assigned to (1) usual care (UC), (2) clinician-delivered Problem-Solving Training (PST), or (3) peer-led Building Better Caregivers (BBC) training; both experimental interventions initiated during the inpatient rehabilitation stay, delivered virtually, of similar intensity (six 60-minute sessions), and focused on managing stress and building skills related to caregiving. SettingNonprofit rehabilitation hospital specializing in care of persons with acquired brain and spinal cord injuries. ParticipantsCaregivers (n=169) of patients with ABI (54 stroke; 115 other ABI) admitted for rehabilitation whose discharge location was home with care provided by family members (caregivers: 83% women, 62% White, age [mean ± SD]: 51±11.5 y). Participants were recruited from February 2021 to November 2022, when COVID-19 restrictions were in place. InterventionsNoted above. Main Outcome MeasuresCaregiver-reported stress, depressive symptoms, and caregiving self-efficacy; patient unplanned hospital readmissions and emergency department visits 30 days post discharge. ResultsOnly 61% of participants in the 2 intervention groups completed 3 or more of 6 intervention sessions and only 53% completed all data collection surveys. Statistically significant improvements between UC and PST groups were noted for caregiver stress (p=.039). Positive differences in caregiver self-efficacy found between UC and the BBC intervention groups approached significance at 30 days after discharge (p=.054). Patient unplanned hospital readmissions and days hospitalized were also higher, albeit not statistically significant, for UC participants than both intervention groups. ConclusionsAlthough positive findings were noted, results were negatively affected by study limitations including low enrollment and limited engagement (intervention completion and follow-up outcomes assessment). These limitations resulted, in part, from restrictions put into place during the COVID-19 pandemic, which limited contact with study participants and required alterations to the BBC intervention likely influencing its effectiveness. Despite limitations noted, the encouraging findings suggest the need for further research.

Use of bispecific antibodies (BsAbs) in community practices: Key attributes to develop logistics and workflow for management of cytokine release syndrome (CRS).

e13575 Background: Establishing workflows to monitor and manage CRS in community practice settings presents unique challenges that may not be encountered in more specialized centers. Real world experience was gathered from OneOncology specialists to understand key steps, common challenges, and best practices to establish CRS workflows in community practices. Methods: Qualitative data were gathered via a 90-minute focus group and follow-up interviews. Participants were MD or PharmD community heme-oncology providers in physician-owned practices with 10-20 physicians. As of January 2024, participants had treated over 30 patients with commercially available BsAbs. Theme matrix techniques facilitated data analysis and presentation. Results: Catalysts for developing CRS workflows were the addition of BsAbs to the practice formulary, identification of practice leaders willing to drive protocol development, and education of clinic and hospital staff who would manage patients treated with BsAbs. Key steps in the workflow included defining lines of communication within the practice during and after office hours, designating leads to oversee staff training, and creating practice-specific management plans. A process for potential inpatient admission for moderate/severe CRS was developed in collaboration with hospital administrators and nursing leaders. Lines of communication between the treating practice, pharmacy, and hospital care staff before, during, and after treatment were established, and methods to ensure availability of necessary medications were identified. Finally, patient support and the logistics of patient/caregiver education on BsAb therapy, symptoms of CRS, and how and when to access care was highlighted. Conclusions: Use of BsAbs in the community requires thoughtful coordination between oncology practices and hospitals. Keys to success include defining flexible, practice-specific workflows for managing CRS, transitioning patients efficiently from clinic to inpatient setting, and careful training of staff, patients, and caregivers. [Table: see text]

LUNAR-2: Pivotal, randomized, open-label study of tumor treating fields (TTFields, 150 kHz) concomitant with pembrolizumab and platinum based chemotherapy for the treatment of metastatic non-small cell lung cancer.

TPS8665 Background: Tumor Treating Fields (TTFields) are electric fields that disrupt processes critical for cancer cell viability. TTFields are delivered by a noninvasive portable device that has the European CE Mark and FDA approval for glioblastoma and mesothelioma. Preclinical non-small cell lung cancer (NSCLC) studies demonstrated that TTFields enhance the antitumor immune response, through disruption of mitosis and subsequent induction of immunogenic cell death. The pivotal, phase III LUNAR study (NCT02973789) in metastatic NSCLC progressing on/after platinum-based therapy demonstrated that TTFields with an immune checkpoint inhibitor (ICI) or docetaxel provided a statistically significant and clinically meaningful 3.3-month improvement in median overall survival (OS) vs an ICI or docetaxel alone, with no added systemic toxicities and no clinically significant difference on quality of life between groups. Despite advances in the treatment of NSCLC, survival rates for stage IV disease remain poor and there is a need for effective and tolerable treatments. Methods: LUNAR-2 (NCT06216301) is a pivotal, global, randomized, trial investigating the efficacy and safety of TTFields concomitant with pembrolizumab (P) and platinum-based chemotherapy (C) in patients (pts) with metastatic NSCLC, with a planned enrollment of 734 pts at 134 sites. Pts with NSCLC, radiologically evaluable disease in the thorax, ECOG PS of 0–1, and no prior treatment for metastatic disease are eligible. Pts will be stratified by histology, PD-L1 Tumor Proportion Score (TPS) and prior treatment with immunotherapy. Randomization is 1:1 to TTFields/P+C or P+C alone. Standard doses of P+C will be administered to both arms on day 1 of a 21-day cycle for 4 cycles of induction followed by up to 31 cycles of maintenance with TTFields/P or P alone. TTFields generated by the NovoTTF-200T System, will be delivered to the thorax ≥ 18 h/day until local disease progression per iRECIST. The primary endpoints are OS and progression-free survival (PFS) per RECIST v1.1 as assessed by a blinded independent central review (BICR). Secondary endpoints include OS and PFS according to histology or PD-L1 TPS, objective response rate, duration of response, and disease control rate, all per RECIST v1.1 as assessed by BICR and by investigator, comparing TTFields/P+C vs. P+C alone. Other secondary endpoints include PFS rates at 6, 12, 24 and 36 months per RECIST v1.1 as assessed by BICR, 1-, 2-, and 3-year survival rates and safety. Device Support Specialists will provide technical and lifestyle integration training for pts and caregivers throughout TTFields therapy. Pts usage is tracked by the device and is provided to pts and physicians to facilitate discussions to optimize outcomes by maximizing time on therapy. The trial is currently recruiting. Clinical trial information: NCT06216301 .

Caregiver Training via Telehealth to Implement Incidental Teaching to Children with ASD

A intervenção via cuidadores é um elemento importante dentre as ações para o tratamento ao TEA. A busca por treinos mais eficientes e viáveis para cuidadores também é um objetivo que tem sido perseguido. O presente estudo avaliou o efeito de um pacote de treino composto por Videomodelação Instrucional e Interativa (VII), Automonitoramento com Checklist (AC) e Feedback Atrasado, via telessaúde, para ensinar cuidadores de crianças com TEA a implementarem Ensino Incidental (EI) para mando e ouvinte. Participaram do estudo oito adultos e quatro crianças. Foi utilizado um delineamento de sondas múltiplas entre participantes, para avaliar o efeito do pacote de treino sobre o desempenho das cuidadoras. No componente VII, as cuidadoras assistiam a vídeos instrucionais ensinando a implementar o EI. Em AC, assistiam a vídeos da sua própria aplicação e preenchiam um checklist avaliando o seu desempenho. Feedbacks imediatos e/ou atrasados ressaltando pontos positivos e negativos da aplicação foram fornecidos. Ao final da exposição ao pacote, todas as cuidadoras aprenderam a aplicar os programas de ensino selecionados. Pode-se concluir que o treino para cuidadores através de telessaúde, para o ensino do EI, utilizando o pacote do presente estudo, mostra-se promissor para integrar intervenção analítico comportamental eficaz e menos onerosa.

The Role of the National Training and Development Curriculum for Foster and Adoptive Parents in Improving Caregiver Perceived Preparation and Confidence to Parent

ABSTRACTBeing a foster, relative or adoptive parent (herein referred to as ‘resource parent’) is a crucial but highly challenging role. Resource parent trainings are designed to build knowledge, skills, preparation and confidence in resource parents prior to beginning their support of children and youth. However, often resource parents go into these roles feeling unconfident and unprepared to fulfil their responsibilities. The National Training and Development Curriculum for Foster and Adoptive Parents (NTDC) is a new curriculum developed with support from the United States Children's Bureau. This study compares the perceived preparation, confidence and willingness to care for a variety of subgroups of children at baseline and 6 months after training of caregivers who participated in NTDC training curriculum versus training as usual to assess whether the NTDC curriculum led to improved caregiver preparation to foster or adopt. NTDC caregivers were found to have more positive differences than control group caregivers from baseline (pretraining) to follow‐up on confidence to care for children considered challenging, confidence to care for children across multiple age ranges and perceived preparation to care for children aged 13 years and older. NTDC is a promising new resource that can help overcome some traditional resource parent training and preparation‐related challenges.

Challenges Experienced by Caregivers in Communicating with Children with Severe to Profound Intellectual Disabilities

<i>Background</i>: Children with severe to profound intellectual disabilities (SPID) may have complex and numerous disabilities, such as intellectual limits and severe deficits in bodily functions. This disorder is typified by issues with speech, language, mobility, agility, and emotional issues providing quality education in appropriate special care centres for children who present with such complex conditions is challenging.<i> Objective</i>: This study explored and described the experiences of caregivers in communicating with children with severe to profound intellectual disabilities in selected special care centres in Gauteng Province.<i> Method</i>: This study followed a qualitative approach and data collection was gathered through in-depth semi-structured interviews, observations in the classroom corroborated children and caregiver`s communication behavior, and document analysis. Eight caregivers were purposively selected to participate in the study. The theory underpinning this study are Ubuntu and Attachment theories. The theories provided the study's foundation and emphasized caring as the central component and influence communication.<i> Result</i>: The thematic analysis revealed the key areas of support needs. The following themes emerged and are as follows: Communication strategies used for children with SPID and, experiences of caregivers in supporting children with SPID. Through these themes the research questions were answered.<i> Conclusion</i>: The study revealed that caregivers' inadequate communication abilities prevent them from responding to the needs of children with SPID. To meet the communication needs of children with SPID, communication requires, relevant communication devices or resources, collaboration with other stakeholders and a qualified trained caregiver.

Partnership to tackle MH crisis for people with disabilities launched

The United Health Foundation, the philanthropic foundation of the UnitedHealth Group has awarded the nonprofit disability rights advocacy organization, The Arc of the United States, a three‐year, $2.5 million grant to improve mental health care for people with intellectual and developmental disabilities (IDD), a news release by The Arc stated. Up to 40% of people with IDD have co‐occurring mental health conditions, and this critical funding will help address their unmet mental health needs. Currently, only 1 in 10 children and adolescents with IDD and mental health disorders receive specialized services. These statistics highlight the need for training and awareness to ensure providers and caregivers are equipped to support the mental health needs of people with disabilities. This includes expanding access to quality mental health care services, improving coordination between disability and health systems, training over 2,000 providers and caregivers to recognize mental health needs in people with IDD, and launching public awareness campaigns to counteract stigma and misconceptions. A key component of the grant is partnering with the National Council for Mental Wellbeing to adapt its evidence‐based Mental Health First Aid program with information on IDD. Over three years, the United Health Foundation grant will help train caregivers, health care professionals, first responders, educators and family members to recognize the mental health needs of people with IDD and decrease the number of mental health crisis incidents experienced by this population.

A narrative review of community-based dementia care in India: experiences, challenges, and policy initiatives.

India is facing a significant increase in the aging population who are at risk for dementia. This review evaluates recent literature on community-based care, focusing on caregiver experiences, challenges and policy initiatives. Dementia care in India is traditionally provided by family members who take on the role of caregivers. Studies on caregiver experiences have reflected high caregiving burden and related impact on their mental health. During the pandemic, caregivers experienced several unprecedented challenges in providing care, emphasizing the need for more research on community-based dementia care across the country. Telehealth and online caregiver training were identified as viable alternatives to support community dementia care. However, it may not be a feasible mode of delivery suitable across the Indian context, underscoring the need for culturally relevant and acceptable interventions. India is currently undertaking concerted policy efforts for dementia care through multiple initiatives like the National Program for Healthcare of the Elderly, the Mental Healthcare Act, and initiatives like the Atal Vayo Abhyuday Yojna. These initiatives aim to address the healthcare requirements of the elderly; nevertheless, a comprehensive evaluation of their impact is yet to be discerned. There is a need for comprehensive research, to inform evidence-based policy and improve dementia care systems in India. Addressing gaps in existing dementia care capacities and healthcare initiatives, along with tailoring interventions to India's diverse contexts are critical for effective community care for dementia.

Exploring alternative care options for children in China: recent developments and challenges

ABSTRACT In recent years, there has been increasing recognition of the complexities surrounding alternative care arrangements for children, especially within China’s changing childcare landscape. This paper addresses the gap in understanding the nuances of alternative care options in China by conducting a narrative review of existing literature and governmental documents, focusing specifically on kinship care, institutional care, family foster care, and adoption. The review reveals recent developments and current challenges associated with each form of alternative care, providing insights into the evolving childcare system in China. Key findings include significant progress in diversifying childcare options, increased funding investment in the system, and efforts to standardize alternative childcare practices through policies and legislative measures. However, challenges persist in promoting psychosocial development and preparing individuals living in institutions for leaving care, ensuring adequate resources and support for kinship caregivers, and enhancing participation rates in family foster care and adoption practices. Practical implications for policymakers and child welfare agencies are discussed, emphasizing the importance of promoting family-based care options, providing quality caregiver training, considering various aspects of children’s needs, extending support for kinship care, and formulating inclusive adoption policies.

Changing practice to improve quality of life in glioma.

As treatment for glioma advances, with an attendant improvement in length of patient survival, the quality of that survival has rightly become an increasingly important patient-centered metric, and health-related quality of life (HRQOL) an important outcome measure. HRQOL is a self-assessed, multidimensional concept encompassing the physical, emotional, and social components of quality of life associated with illness and its treatment. Neurosurgeons caring for patients with gliomas should be aware of the latest research on HRQOL to understand mechanisms by which it can be improved. Neurosurgical outcomes related to surgical complications and neurological deficits can be important determinants of HRQOL and are well understood by neurosurgeons. However, an understanding of more general or global determinants of HRQOL not commonly addressed in the clinic, and implementation of the attendant evidence-based interventions to address them, would be transformative. The authors explore HRQOL determinants related to patient-, social-, tumor-, and treatment-related factors, with a particular emphasis on the strongest determinants, fatigue, sleep disturbance, anxiety, depression, neurocognitive dysfunction, caregiver distress, and end-of-life concerns. Evidence-based interventions are reviewed, including fatigue management, cognitive rehabilitation, insomnia interventions exercise, caregiver training, palliative care, and an overall multidisciplinary team approach. Lastly, features of a program are outlined that would embed HRQOL in neurosurgical care to the benefit of both patients and staff.

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

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. To evaluate caregiver outcomes (stress, self-efficacy, and positive feeding responses and confidence) after participation in the Engaged Eaters Program. Quasi-experimental pretest-posttest design. In-home via telehealth. Fourteen primary caregivers of an autistic child (ages 2-7 yr) with feeding challenges. 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. 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. 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. 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.

'Tausi Feagaiga: A Project to Train Caregivers and Empower the American Samoan Community.

The 'Tausi Feagaiga (Covenant Keeper) project was a partnership to support the traditional values of tausi matua (caring for one's elders). The partners included a non-governmental organization (Pacific Youth and Community Development), a faith-based organization (Roman Catholic Diocese of Samoa-Pago Pago), and an institute of higher education (University of Hawai'i John A. Burns School of Medicine). The project was created to address the lack of community-based health care such as home health or hospice, and families needing to work outside the home. A culturally based caregiving curriculum was developed to educate caregivers and improve their knowledge and skills. Using a train-the-trainer model, 125 caregivers were trained in family caregiving from 2016-2020. Training was conducted through an intensive workshop followed by practicum at Hope House, the Catholic Diocese home for the aged. Participants who expressed a willingness and competency were mentored to be trainers to continue the 'Tausi Feagaiga project. The mean self-rated confidence in caregiving improved significantly from 3.17 ± 1.02 (mean SD) pre workshop to 3.53 ± 0.71 post workshop (P = .001). Competence in geriatric syndromes was improved from 18.04 ± 4.27 to 21.31 ± 4.30 after attending the workshop (P < .001) and the feedback was extremely positive. Technical assistance was provided to obtain funding through American Samoa Medicaid State Agency to improve the existing infrastructure of Hope House, obtain much needed supplies, and increase ability to hire the participants. 'Tausi Feagaiga positively impacted the lives of the residents of Hope House, the course participants, the elders in the community, and those who care for them.

Evaluating the knowledge of diarrhoea disease prevention measures among caregivers in Nyalenda, Kisumu County

This study sought to evaluate knowledge of diarrhoea disease prevention measures among caregivers. Diarrhoea disease is a prominent public health concern, with children aged 6-24 months more at risk. Caregiver education is crucial for eliminating child diarrhoea. The study employed a quasi-experimental design using mixed-method analysis. The study included a sample size of 302 households of caregivers of children aged 6-24 months living in Nyalenda informal settlements. The study used an open-source web-based statistical tool. Data was collected, entered into SPSS, and analysed. Descriptive analysis determined the mean and proportions. Multivariate logistic regression analysis assessed the connection between independent and dependent variables. This study found that the mean knowledge score for diarrhoea disease prevention from the 12 items calculated was 6.3 ± 2.6 at baseline for all the recruited caregivers. It was also established that the caregivers from Nyalenda A (intervention group) had a higher mean knowledge score of 7.9 ± 2.7 than those from Nyalenda B (control group), which had a mean knowledge score of 6.4 ± 2.6. In conclusion, the study proved that training caregivers using visual charts played a role in enhancing the knowledge of the caregivers. This study recommends focusing on implementing visual charts to increase caregivers’ knowledge of diarrhoea prevention measures.

Do Cultural Adaptations Matter? Comparing Caregiver Training in Different Language for Latino Caregivers of Autistic Children: A Telehealth-Based Evaluation

Do Cultural Adaptations Matter? Comparing Caregiver Training in Different Language for Latino Caregivers of Autistic Children: A Telehealth-Based Evaluation

Exploring the knowledge and skills for effective family caregiving in elderly home care: a qualitative study.

Family caregivers play a crucial role in providing physical, emotional, and social support to the elderly, allowing them to maintain their independence and stay in their preferred living environment. However, family caregivers face numerous challenges and require specific knowledge and skills to provide effective care. Therefore, understanding the knowledge and skills required for effective family caregiving in elderly home care is vital to support both the caregivers and the elderly recipients. The research was carried out in Mekelle City, Ethiopia, utilizing the phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted. Individuals with experience in providing care for elderly people in their homes were targeted. Data was gathered through the use of an open-ended guide, transcribed word-for-word, inputted into ATLAS.ti8 software, and translated. Codes and themes were then extracted from the transcribed data, and a thematic analysis was performed. To minimize personal biases, the collected data were coded independently by the data collection assistants and the PI. The analysis was carried out by authors who were not involved in the data collection process. The interviews were conducted in a quiet place. A total of 22 in-depth interviews were conducted as part of this research. The results indicated that although the participants had knowledge about common health problems experienced by older people, they were uninformed about how to manage these conditions at home and were unaware of specialized healthcare resources for the elderly. Furthermore, they had limited knowledge about suitable exercise routines, strategies to prevent falls, and home healthcare practices for older individuals. On the other hand, they exhibited a solid comprehension and awareness of abusive behaviors specifically directed at older adults. The results emphasized the importance of enhancing education and training for family caregivers in handling elderly health issues, raising awareness about specialized healthcare services catered to the elderly, improving understanding of activities of daily living (ADLs) and fall prevention, and offering inclusive training in healthcare tasks related to elder care. Participants should receive comprehensive education and training programs to enhance their knowledge and skills in managing these conditions. Efforts should also be made to raise awareness about the availability of geriatric hospitals or specialized nurses for the elderly. Participants need to be educated about suitable exercise routines for the elderly and fall prevention strategies. Healthcare skills training is also necessary for participants, focusing on activities such as wound dressing, vital sign monitoring, and establishing a specific schedule for changing positions.

Cultural adaptation of an intervention for caregivers of young autistic children: Community members' perspectives.

Caregivers of autistic children in low-to-middle-income countries experience many barriers to access resources to support their child's development. Caregiver training is considered an evidence-based practice and may be a cost-effective way to support caregivers of autistic children in such settings. This study focuses on the cultural adaptation of Parents Taking Action (PTA; Magaña etal., Family Process, 56, 57-74, 2017) to support caregivers of autistic children in Paraguay. We conducted focus groups and individual interviews with 28 caregivers, autistic individuals, and professionals in Paraguay to understand caregivers' needs and to explore needed cultural adaptations of PTA to achieve contextual fit. Participants identified caregivers' need for accurate and reliable information, strategies to support children's growth, and emotional support and strategies to manage stress. Additionally, participants provided recommendations for adapting PTA considering the dimensions within the Cultural Adaptation Checklist (Lee etal., International Journal of Developmental Disabilities, 2023). This study is the first step in the iterative process of culturally adapting an intervention and the process described in this study may be appropriate for culturally adapting other interventions.

RISEinFAMILY project: the integration of families at neonatal intensive care units (NICUs) to empower them as primary caregivers: study protocol for a stepped wedge cluster controlled trial

BackgroundFamily Integrated Care (FICare) has demonstrated positive outcomes for sick neonates and has alleviated the psychological burden faced by families. FICare involves structured training for professionals and caregivers along with the provision of resources to offer physical and psychological support to parents. However, FICare implementation has been primarily limited to developed countries. It remains crucial to assess the scalability of this model in overcoming social-cultural barriers and conduct a cost-effectiveness analysis. The RISEinFAMILY project aims to develop an adapted FICare model that can serve as the international standard for neonatal care, accommodating various cultural, architectural, and socio-economic contexts.MethodsRISEinFAMILY is a pluri-cultural, stepped wedge cluster controlled trial conducted in Spain, Netherlands, the UK, Romania, Turkey, and Zambia. Eligible participants include infant-family dyads admitted to the Neonatal Intensive Care Unit (NICU) requiring specialised neonatal care for a minimum expected duration of 7 days, provided there are no comprehension barriers. Notably, this study will incorporate a value of implementation analysis on FICare, which can inform policy decisions regarding investment in implementation activities, even in situations with diverse data.DiscussionThis study aims to evaluate the scalability and adaptation of FICare across a broader range of geographical and sociocultural contexts and address its sustainability. Furthermore, it seeks to compare the RISEinFAMILY model with standard care, examining differences in short-term newborn outcomes, family mental health, and professional satisfaction.Trial registrationClinicalTrials.gov NCT06087666. Registered on 17 October 2023. Protocol version: 19 December 2022; version 2.2.