Implementation of guidelines to integrate the caregiver as a coassistant of health-care personnel during the hospital stay of COVID-19 pediatric patients: adaptation in a Mexican public pediatric hospital / Implementación de guías para integrar al cuidador como coauxiliar del equipo de salud durante la estancia hospitalaria del paciente pediátrico con COVID-19: adaptación en un hospital pediátrico público mexicano

Abstract This paper describes the experience in a public pediatric hospital when implementing the Mexican Health Ministry’s recommendations on the inclusion and importance of a chosen caregiver during the hospitalization of a coronavirus disease 2019 (COVID-19) pediatric patient. The implementation includes the adjustments, observations, and limitations made in real practice and process. In conclusion, the value and benefits of the accompaniment of hospitalized children with COVID-19 by a primary or chosen caregiver are evidenced and supported by family-centered care. Furthermore, the recommendations mentioned result in comprehensive bio-psycho-social care for the benefit of pediatric patients.

Resumen Se describe cómo el Hospital Infantil de México Federico Gómez pone en funcionamiento las recomendaciones publicadas por la Secretaría de Salud sobre la inclusión y la importancia del acompañamiento de un cuidador primario durante la hospitalización del paciente pediátrico con COVID-19. Se incluyen las adecuaciones, las observaciones y las limitaciones del proceso. Se concluye acerca de la importancia de la flexibilidad y el buen uso de los recursos en la implementación de la guía. Además, se examinan la atención biopsicosocial integral en beneficio de los menores y la importancia del acompañamiento, que se sustenta en la atención centrada en la familia y la integración del cuidador como auxiliar en el equipo médico.

Receipt of Posthospitalization Care Training Among Medicare Beneficiaries' Family Caregivers.

Importance: Medicare conditions of participation require hospitals to provide training to family and unpaid caregivers when their support is necessary to enact the postdischarge care plan. However, caregivers often report feeling unprepared for this role. Objective: To describe the characteristics of caregivers who assist with posthospitalization care transitions and assess the prevalence of and factors associated with receipt of adequate transitional care training. Design, Setting, and Participants: This cross-sectional study analyzed data from the 2017 National Health and Aging Trends Study and its linked National Study of Caregiving, surveys of Medicare beneficiaries and their family and unpaid caregivers. The present study included family caregivers for community-living Medicare beneficiaries 65 years or older with disabilities. Data analysis was performed from June to September 2020. Main Outcomes and Measures: Characteristics of family caregivers by whether they assisted during a posthospitalization care transition in the year preceding the survey interview. Unweighted frequencies and weighted percentages, as well as the results of weighted Pearson and Wald tests for differences between groups, are reported. Receipt of the training needed to manage the older adult's posthospitalization care transition (hereafter referred to as adequate transitional care training) as a function of individual caregiver characteristics was modeled using multivariable, weighted logistic regression. Results: Of 1905 family caregivers, 618 (58.9%) were 60 years or older, 1288 (63.8%) were female, and 796 (41.7%) assisted with a posthospitalization care transition. Those who assisted with a posthospitalization care transition were more likely to report experiencing financial (154 [18.3%] vs 123 [10.1%]; P < .001), emotional (344 [41.3%] vs 342 [31.1%]; P < .001), and physical (200 [22.2%] vs 170 [14.6%]; P = .001) difficulty associated with caregiving. Among caregivers who assisted during a posthospitalization care transition, 490 (59.1%) reported receiving adequate transitional care training. Caregivers were less likely to report receiving adequate training if they assisted an older adult who was female (316 [62.3%] vs 227 [73.2%]; P = .02), Black (163 [14.0%] vs 121 [19.8%]; P = .02), or enrolled in Medicaid (127 [21.2%] vs 90 [31.9%]; P = .01). After adjusting for older adult characteristics, caregivers were half as likely to report receiving adequate training if they were Black (adjusted odds ratio [aOR], 0.52; 95% CI, 0.31-0.89) or experienced financial difficulty (aOR, 0.50; 95% CI, 0.31-0.81). Caregivers were more than twice as likely to report receiving adequate training if they were female (aOR, 2.44; 95% CI, 1.65-3.61) or spoke with the older adult's clinician about his or her care in the past year sometimes or often vs never (aOR, 1.93; 95% CI, 1.19-3.12). Conclusions and Relevance: In this cross-sectional study, caregivers were less likely to receive adequate transitional care training if they were Black; experienced financial difficulty; or cared for a Black, female, or Medicaid-enrolled older adult. These findings suggest that changes to the discharge process, such as using standardized caregiver assessments, may be necessary to ensure equitable support of family caregivers.

Implementation of guidelines to integrate the caregiver as a coassistant of health-care personnel during the hospital stay of COVID-19 pediatric patients: adaptation in a Mexican public pediatric hospital.

This paper describes the experience in a public pediatric hospital when implementing the Mexican Health Ministry's recommendations on the inclusion and importance of a chosen caregiver during the hospitalization of a coronavirus disease 2019 (COVID-19) pediatric patient. The implementation includes the adjustments, observations, and limitations made in real practice and process. In conclusion, the value and benefits of the accompaniment of hospitalized children with COVID-19 by a primary or chosen caregiver are evidenced and supported by family-centered care. Furthermore, the recommendations mentioned result in comprehensive bio-psycho-social care for the benefit of pediatric patients.

The Question-prompt list (QPL): Why it is needed in the Indian oncology setting?

BACKGROUND: In India, caregivers are an integral part of the illness experience, especially in cancer, to the extent that they can become proxy decision-makers for the patient. Further, owing to acute resource constraints in the Indian healthcare system, it may be difficult for oncologists to assess and elicit questions from each patient/caregiver. Consequently, there is a need to address these unique aspects of oncology care in India to improve patient outcomes and understanding of their illness and treatment. This can be achieved through a Question Prompt List (QPL), a checklist used by care recipients during medical consultations. RECENT FINDINGS: This narrative review will first introduce research on the development and effectiveness of the QPL, and then it will highlight current gaps in oncology care in India and explore how the QPL may aid in closing these gaps. A literature search of the empirical research focused on the development, feasibility and acceptability of the QPL in oncology settings was conducted. The final review included 40 articles pertaining to QPL research. Additionally, psycho-oncology research in India centered on information needs and experiences was reviewed. Current Indian psycho-oncology research reports patients' want to be actively involved in their cancer care and a need for more illness information. However, a high demand on physicians' resources and the family caregivers' interference can be barriers to meeting patients' information/communication needs. International research demonstrates that a QPL helps structure and decrease consultation time, improves patient satisfaction with care, and improves the quality of communication during medical encounters. CONCLUSION: QPLs for Indian patients and caregivers may focus on the scope of medical consultations to address patient needs while influencing the course and content of the patient-caregiver-physician interactions. Further, it can address the resource constraints in Indian oncology care settings, thus reducing the physician's burden.

Process lessons from evaluating a combined continuity of carer and home birth scheme.

INTRODUCTION: Continuity of midwifery carer improves outcomes, but there is significant variation in how such schemes are implemented and evaluated cross-culturally. The Angus home birth scheme in Scotland incorporates continuity of carer throughout pregnancy, labor, birth, and the postnatal period. METHODS: Manual maternity case note review to evaluate the 80% continuity of carer and 3% planned home birth rate targets. RESULTS: Of 1466 women booking for maternity care, 69 joined the scheme. Forty-four had a planned home birth (3% overall), of whom seven were originally deemed ineligible. Of the 44, eight (18%) also achieved 80% continuity of carer with the primary midwife; by including a home birth team colleague, the continuity rate rose to 73%. Women whose care achieved home birth and continuity targets had lower deprivation scores. Eligibility issues, women's changing circumstances, and data recording lapses were complicating issues. CONCLUSIONS: Targets must be both feasible and meaningful and should be complemented by assessing a broad range of outcomes while viewing the scheme holistically. By expanding eligibility criteria, the home birth rate target was met; including input from a home birth team colleague in the calculation meant the continuity target was nearly met. With dedicated and competent staff, adequate resource and political support, and when considered in the round, the scheme's viability within local services was confirmed. Other generalizable learning points included the need to standardize definitions and data recording methods. Comparability across schemes helps grow the evidence base so that the links between processes and outcomes can be identified.

Digital Technology, Health and Well-Being and the Covid-19 Pandemic: It's Time to Call Forward Informal Carers from the Back of the Queue.

OBJECTIVE: To describe the current challenges of family caregivers during and beyond the COVID-19 pandemic, the need for future digital innovations including involvement from professional nursing roles. DATA SOURCES: Review of recent literature from PubMed and relevant health and care reports. CONCLUSION: The COVID-19 pandemic has caused monumental disruption to health care delivery and care. Caregivers face unprecedented levels of uncertainty: both for the people they care for and for their own health and well-being. Given that many carers face poor health and well-being, there is a significant risk that health inequalities will be increased by this pandemic, particularly for high-risk groups. Innovations including those supported and delivered by digital health could make a significant difference but careful planning and implementation is a necessity for widespread implementation. IMPLICATIONS FOR NURSING PRACTICE: Carers need to be championed in the years ahead to ensure they do not become left at the "back of the queue" for health and well-being equity. This situation has been exacerbated by the COVID-19 pandemic. Disruptive change to health and social care is now required where digital health solutions hold considerable promise, yet to be fully realized.

Co-creating a process of user involvement and shared decision-making in coordinated care planning with users and caregivers in social services.

PURPOSE: Although user participation and shared decision-making in formal statutory coordinated care planning are described as central, they remain to be implemented. The aim of this study is to explore how collaboration and shared decision-making in the social services can be realized in formal care planning activities with people with mental disabilities. METHODS: We conducted eight workshops with 12 users and 17 caregivers to investigate existing barriers to and possible solutions for participation in coordinated care planning. RESULTS: Workshop formats and techniques from participatory design generated rich research materials illustrating challenges currently experienced by users and caregivers in care planning work, as well as a large variety of solutions to these challenges. They also illustrated differences in how participation is understood and the conditions required to realize shared decision-making between users and caregivers. CONCLUSIONS: An improved coordinated individual plan (CIP) process emerged, based on the active participation of users and caregivers. This process is a familiar and transparent process for users and caregivers, reflecting the needs and preferences of users at all stages. It requires careful preparation and collaboration with the users, as well as caregiver flexibility.

Informal carers and peer support in pulmonary rehabilitation: an underutilized resource?

PURPOSE OF REVIEW: The aim of this review is to discuss the recent literature relating to the involvement of informal carers and peer support in pulmonary rehabilitation. RECENT FINDINGS: Informal carers and peer support have been identified by both patients and healthcare workers as a crucial component in the care of those with chronic respiratory disease at home. Pulmonary rehabilitation, a cornerstone in the management of patients with breathlessness, is limited in its clinical effectiveness by poor referral, uptake and completion rates. Engagement of informal carers and support from peers may help maximize the utilization of pulmonary rehabilitation. SUMMARY: This review highlights the need for more good-quality randomized controlled trials in identifying suitable interventions that may increase uptake and completion of pulmonary rehabilitation programmes. Qualitative studies have highlighted the potential for informal carers and peer support to play a key role in the design of research programmes, and in the delivery of pulmonary rehabilitation. This needs to be addressed in future research.

Intergenerational Relationships, Family Caregiving Policy, and COVID-19 in the United States.

Families and intergenerational relationships are important sources of risk for COVID-19 infection, especially for older adults who are at high risk of complications from the disease. If one family member is exposed to the virus they could serve as a source of transmission or, if they fall ill, the resources they provide to others could be severed. These risks may be especially heightened for family members who work outside the home and provide care, or for those family members who care for multiple generations. Policies have the potential to help families bear the burden of these decisions. This essay argues that policies that address health, employment, and other social issues have implications for families, and that policies aimed at families and caregivers can affect the health, employment, and the general well-being of the nation.

Self-Direction of Home and Community-Based Services in the Time of COVID-19.

During the COVID-19 pandemic, nursing homes and assisted living facilities have accounted for over 20% of all infections, adult day care and other congregate sites have closed, and traditional home care agencies are facing staff shortages. In this environment, self-direction of home and community-based services, where the participant can hire their own staff and manage a budget that can be used for a broad range of goods and services including home modifications and assistive devices, is seen as a promising intervention. Using self-direction participants can minimize the number of people who enter their homes and pay close family and friends who were already providing many hours of informal care, and now may be unemployed. The Center for Medicare and Medicaid Services is encouraging this approach. This commentary presents information on how states have responded using the new CMS Toolkit by expanding who can be a paid caregiver, increasing budgets and broadening the kinds of items that can be purchased with budgets to include items like personal protective equipment and supports for telehealth. This Commentary concludes with policy and research questions regarding how the delivery of long-term services and supports (LTSS) may change as the world returns to"normal".

Safety and placement stability for the Children's Home Network kinship navigator program.

BACKGROUND: With the passage of the Families First Prevention Act, kinship navigator programs have growing support as an intervention to connect kinship families to needed resources. Growing evidence has helped to showcase the outcomes, but no study has shared follow up outcomes past twelve months. OBJECTIVE: This study examined the 12, 24 and 36 month follow up child safety (substantiated abuse record) and placement stability (disruption in placement) outcomes from state administered secondary data for children whose caregivers participated in the Children's Home Network-Kinship Navigator Program (CHN-KN). SETTING: Study participants were 240 (60 in each group) randomly selected kinship caregivers who were enrolled in four treatment groups in CHN-KN (Standard Kinship Navigator, Kinship Navigator with Innovations, Kinship Navigator with Peer-to-Peer only, and Usual Child Welfare). METHODS: Repeated measures anovas were used to show between group differences for each study group. RESULTS: Results show that children living with caregivers who received Kinship Navigator Programs (Kinship Navigator Peer to Peer and Kinship Navigator with Innovations) were the least likely to be involved in a substantiation of child abuse or neglect and most likely to remain in the home of a relative at 12, 24 and 36 month follow up. CONCLUSIONS: Results suggest that the kinship navigator programs could improve child safety and placement stability. This study can help to inform the replication of the CHN-KN model and provide additional supported evidence to inform practice.

The day-to-day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study.

AIMS AND OBJECTIVES: To explore the day-to-day experiences of family caregivers who are caring for children with Osteogenesis Imperfecta (OI). BACKGROUND: Osteogenesis Imperfecta is a rare genetic condition known to cause bone fragility. Family caregivers of children with OI play an important role in helping these children live well at home. DESIGN: A qualitative descriptive design was used. METHODS: A qualitative descriptive study was conducted in accordance with the COREQ guidelines. Adult family caregivers (n = 18) of children with OI were recruited from a university-affiliated, paediatric orthopaedic hospital in Montreal, Canada. Individual interviews were conducted, transcribed verbatim and inductively thematically analysed. RESULTS: Osteogenesis Imperfecta family caregiving entailed: (a) managing regular day-to-day caregiving activities, including morning routines, evening routines and the facilitation of their child's mobilisation; (b) coping with periods that made the caregiving routine more challenging, such as fractures, surgeries and pain; and (c) devising long-term strategies to support day-to-day care, such as managing the environment, accessing medical and school resources, and coordinating care and respite. CONCLUSIONS: The day-to-day routine of caring for a child with OI may be disrupted by challenging periods and improved by long-term strategies developed to ease day-to-day care. These strategies suggest future directions for clinicians and policymakers to improve health services and caregiver well-being. RELEVANCE TO CLINICAL PRACTICE: Clinical, policy and research endeavours need to incorporate new interventions to support the needs of family caregivers. These recommendations may be relevant to other clinicians and policymakers working with families living with rare and chronic physical conditions.

Caregiving in Times of Uncertainty: Helping Adult Children of Aging Parents Find Support during the COVID-19 Outbreak.

The COVID-19 pandemic, which is especially dangerous to older people, has disrupted the lives of older people and their family caregivers. This commentary outlines the adaptive and emerging practices in formal supportive services for family caregivers, the changing types of support that family caregivers are providing to their older relatives, and the ways family caregivers are seeking informal caregiving support during the COVID-19 outbreak.

Implementing an evidence-based dementia care program in the Australian health context: A cost-benefit analysis.

The World Health Organisation has called for the implementation of evidence-based interventions that enhance function and capability in people with dementia. In response, the Boosting Dementia Research Initiative in Australia has funded a number of projects aimed at improving such outcomes for people with dementia and their caregivers. What is not known is the economic and societal outcomes of these projects and of program implementation to the Australian healthcare system. The purpose of this study was to identify the costs and benefits of implementing an evidence-based reablement program within Australian health context. A well-used methodology familiar to governments and decision-makers was used to calculate the costs and benefits of implementing the program in Australia. Four different perspectives: market, private, efficiency (social) and referent group (key stakeholders) were considered in the cost-benefit evaluation. Almost A$6.2 million societal gain is presented through a social cost-benefit analysis. The referent (stakeholder) group analysis is used to demonstrate that people with dementia and their caregivers are the bearers of the costs and the Australian health and social care system gains the most from the program implementation. The results of this cost-benefit analysis suggest that there is a need to plan and provide subsidies or other financial incentives to assist people with dementia and their caregivers to engage in reablement programs in Australia; thus the whole society can be advantaged. Funding bodies and decision-makers are urged to recognise the potential societal benefits that can be achieved from participating in such reablement programs.

Effectiveness of palliative care consultation service on caregiver burden over time between terminally ill cancer and non-cancer family caregivers.

PURPOSE: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time. METHODS: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC. RESULTS: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (ß = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (ß = 1.14, p = 0.013). CONCLUSIONS: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.

A Systematic Review and Jurisdictional Scan of the Evidence Characterizing and Evaluating Assisted Peritoneal Dialysis Models.

BACKGROUND AND OBJECTIVES: Compared with hemodialysis, home peritoneal dialysis alleviates the burden of travel, facilitates independence, and is less costly. Physical, cognitive, or psychosocial factors may preclude peritoneal dialysis in otherwise eligible patients. Assisted peritoneal dialysis, where trained personnel assist with home peritoneal dialysis, may be an option, but the optimal model is unknown. The objective of this work is to characterize existing assisted peritoneal dialysis models and synthesize clinical outcomes. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: A systematic review of MEDLINE, Cochrane Central Register of Controlled Trails, Cochrane Database of Systematic Reviews, Embase, PsycINFO, and CINAHL was conducted (search dates: January 1995-September 2018). A focused gray literature search was also completed, limited to developed nations. Included studies focused on home-based assisted peritoneal dialysis; studies with the assist provided exclusively by unpaid family caregivers were excluded. All outcomes were narratively synthesized; quantitative outcomes were graphically depicted. RESULTS: We included 34 studies, totaling 46,597 patients, with assisted peritoneal dialysis programs identified in 20 jurisdictions. Two categories emerged for models of assisted peritoneal dialysis on the basis of type of assistance: health care and non-health care professional assistance. Reported outcomes were heterogeneous, ranging from patient-level outcomes of survival, to resource use and transfer to hemodialysis; however, the comparative effect of assisted peritoneal dialysis was unclear. In two qualitative studies examining the patient experience, the maintenance of independence was identified as an important theme. CONCLUSIONS: Reported outcomes and quality were heterogeneous, and relative efficacy of assisted peritoneal dialysis could not be determined from included studies. Although the patient voice was under-represented, suggestions to improve assisted peritoneal dialysis included using a person-centered model of care, ensuring continuity of nurses providing the peritoneal dialysis assist, and measures to support patient independence. Although attractive elements of assisted peritoneal dialysis are identified, further evidence is needed to connect assisted peritoneal dialysis outcomes with programmatic features and their associated funding models.