In-Home Respite Care Services Available to Families With Palliative Care Needs in Quebec: Novel Digital Environmental Scan.

BACKGROUND: Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality. OBJECTIVE: This project aimed to (1) compile a list of at-home palliative respite care services in Quebec, Canada; (2) describe key accessibility features for each respite care service; (3) identify accessibility gaps and opportunities; and (4) describe a novel method for conducting environmental scans using internet search engines, internet-based community health databases, and member checking. METHODS: A novel environmental scan methodology using 2 internet-based targeted databases and 1 internet search engine was conducted. Results were screened and data were extracted, descriptively analyzed, and geographically schematized. RESULTS: A total of 401 services were screened, and 52 at-home respite care services specific to palliative populations were identified, compiled, and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility was explored through the lens of service amenability, availability, eligibility, and compatibility. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services. CONCLUSIONS: Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting internet-based environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, internet-based community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted that more easily accessible and centralized information about respite care services is needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces.

Information and Communication Technologies to Support the Provision of Respite Care Services: Scoping Review.

BACKGROUND: Respite care is one of the most frequently requested support services by family caregivers. Yet, too often, respite care services are inaccessible, due in part to families' lack of knowledge regarding available services and a lack of service flexibility. Information and communication technologies (ICTs) may help to improve the flexibility of services available and families' knowledge of such services. However, an understanding of the use of ICTs and research in this area is lacking. OBJECTIVE: The objective of this study was to provide a comprehensive overview of the academic literature on ICTs for supporting the provision of respite care services. METHODS: A scoping review study was conducted. Six library databases were systematically searched for relevant literature. Key data were extracted into a summary chart. Text and quantitative data were coded using descriptive qualitative content analysis techniques, and the results were collated and summarized into a comprehensive narrative. RESULTS: A total of 23 papers describing 15 unique ICT programs exploring the potential of ICTs to support respite care services met the inclusion criteria. ICTs supported the provision of respite care by facilitating information-sharing with families and providers, recruiting and training respite care providers, and coordinating services. Key design considerations for developing respite care ICTs were trustworthiness and participatory design methods. Implementation considerations included designing for complementarity with existing services, assessing the appropriate timing for introducing the ICT-based services, and ensuring adequate promotion strategies to raise awareness about the services. CONCLUSIONS: There is limited but promising research on the potential of ICTs to support the provision of respite care services. Further research should be conducted to advance the results of this review, ultimately aiming to build ICTs that can improve the quality of, and access to, respite care services.

Differences in evidence-based nursing practice competencies of clinical and academic nurses in China and opportunities for complementary collaborations: A cross-sectional study.

AIMS AND OBJECTIVES: To explore the evidence-based nursing practice (EBNP) competencies of clinical and academic nurses and their collaboration needs for supporting EBNP. BACKGROUND: Academic-practice partnerships have strong potential to overcome the key barriers to EBNP. However, there is little known about the collaboration needs of clinical and academic nurses for EBNP. DESIGN: A cross-sectional study. METHODS: We recruited clinical and academic nurses online during November 2021 to January 2022. Using a reliable and validated scale and adapted questionnaires, data were collected relating to demographic information, EBNP-related resources availability, EBNP competencies and EBNP collaboration needs. These data were described using descriptive statistical methods. The t test, χ2 test and Mann-Whitney U test were used to evaluate if the different responses between clinical and academic nurses were statistically significant. This study was reported following the STROBET checklist. RESULTS: Two 240 clinical nurses and 232 academic nurses submitted questionnaires. There was no difference in overall EBNP competence between clinical and academic nurses. However, clinical nurses reported lower levels of competence and stronger intentions to collaborate with academic nurses when searching for, appraising, and synthesising evidence. Academic nurses reported lower levels of competence and stronger intentions to collaborate with clinical nurses for disseminating and implementing evidence. CONCLUSION: Clinical and academic nurses both reported high needs for collaborating to overcome their perceived role limitations. Clinical and academic nurses have different strengths and limitations in EBNP. These role differences and intentions to collaborate for different dimensions of EBNP competence suggest that clinical and academic nursing roles could be complementary to each other, offering opportunities for synergistic collaborations to better support overall EBNP. RELEVANCE TO CLINICAL PRACTICE: Healthcare and academic institutions should promote academic-practice partnerships as opportunities to gain complementary expertise on different dimensions of EBNP, and to improve nurses' competencies and confidence in EBNP overall.

"Informal Caregiver" in Nursing: An Evolutionary Concept Analysis.

The informal caregiver experience has surged as a research topic in health care, including in nursing. However, the "informal" language is controversial, lacking conceptual clarity. Without a common understanding of who an "informal caregiver" may be, nurses may fail to consistently identify informal caregivers requiring support. Therefore, a concept analysis of "informal caregiver" was conducted on the basis of a sample of 20% of relevant nursing literature. The analysis of the attributes, antecedents, consequences, and contexts associated with "informal caregiver" offers a foundational guide for the ongoing development of nurses' understanding of the informal caregiver role.

Psychometric properties of disease-specific health-related quality of life (HRQoL) instruments for food allergy and food intolerance: protocol for a COSMIN-based systematic review.

INTRODUCTION: Food allergies and food intolerances can bring burdens on patients and their caregivers and reduce health-related quality of life (HRQoL). An increasing number of disease-specific HRQoL instruments for food allergies and food intolerances has been developed, and some of them have been adapted for different cultures and languages. This report describes a protocol for a systematic review of the psychometric properties of these instruments. The aims of this systematic review are to: (1) formulate recommendations for the usage of existing validated disease-specific HRQoL instruments for patients with food allergies and/or food intolerances and their caregivers; and (2) identify knowledge gaps to inform future research relating to these instruments. METHODS AND ANALYSIS: This protocol adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol (PRISMA-P) 2015 checklist. The future review will follow the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guideline for systematic reviews of patient-reported outcome measures (PROMs) and PRISMA 2020 statement guideline. Six databases (PubMed, EMBASE, Web of Science, Scopus, CINAHL and ProQuest -Health & Medical Collection) will be searched to retrieve studies focusing on the development and psychometric properties of disease-specific HRQoL instruments for patients with food allergies and/or food intolerances and their caregivers between 1 December 2021 and 31 December 2021. Two researchers will be responsible for literature screening, data extraction and literature evaluation, independently. Disagreements will be addressed by discussion or the involvement of a third researcher. The methodological quality of the included studies and the quality of the identified instruments will be assessed based on the COSMIN guideline for systematic reviews of PROMs. ETHICS AND DISSEMINATION: Ethical approval is not applicable for this study. We will disseminate the findings through publication in peer-reviewed journals and/or academic conferences. PROSPERO REGISTRATION NUMBER: CRD42021252203.

Development of a blended emergent research training program for clinical nurses (part 1).

BACKGROUND: Nursing research training is important for improving the nursing research competencies of clinical nurses. Rigorous development of such training programs is crucial for ensuring the effectiveness of these research training programs. Therefore, the objectives of this study are: (1) to rigorously develop a blended emergent research training program for clinical nurses based on a needs assessment and related theoretical framework; and (2) to describe and discuss the uses and advantages of the ADDIE model (Analysis, Design, Development, Implementation, Evaluation) in the instructional design and potential benefits of the blended emergent teaching method. METHODS: This intervention development study was conducted in 2017, using a mixed-methods design. A theoretical framework of blended emergent teaching was constructed to provide theoretical guidance for the training program development. Nominal group technique was used to identify learners' common needs and priorities. The ADDIE model (Analysis, Design, Development, Implementation, Evaluation) was followed to develop the research training program for clinical nurses based on the limitations of current nursing research training programs, the needs of clinical nurses, and the theoretical foundation of blended emergent teaching. RESULTS: Following the ADDIE model, a blended emergent research training program for clinical nurses to improve nursing research competence was developed based on the needs of clinical nurses and the theoretical framework of blended emergent teaching. CONCLUSIONS: This study indicates that nominal group technique is an effective way to identify learners' common needs and priorities, and that the ADDIE model is a valuable process model to guide the development of a blended emergent training program. Blended emergent teaching is a promising methodology for improving trainees' learning initiative and educational outcomes. More empirical studies are needed to further evaluate blended emergent teaching to promote the development of related theories and practice in nursing education.

Effects of a blended emergent research training programme for clinical nurses on nursing research competence and critical thinking (Part 2): A quasi-experimental study.

AIMS AND OBJECTIVES: To evaluate the effects of a blended emergent research training programme for clinical nurses on research competence and critical thinking. BACKGROUND: With the development of the nursing discipline and evidence-based nursing practice, nursing research competence is increasingly important for clinical nurses. Current nursing research training programmes cannot meet the needs of clinical nurses. DESIGN: A quasi-experimental study. METHODS: A total of 104 clinical nurses from two tertiary hospitals participated in this study. The intervention group received a blended emergent research training programme for clinical nurses, and the control group received no intervention. Nursing research competence and critical thinking were measured at baseline, after the intervention and three months after the intervention. The satisfaction with the training of clinical nurses in the intervention group was also measured after the intervention. Generalised linear mixed models were used to evaluate the effects of the intervention on outcome variables. Qualitative data were analysed by two researchers using the content analysis method. Our reporting complies with the TREND checklist. RESULTS: The blended emergent research training programme for clinical nurses finally showed positive effects on nursing research competence and critical thinking. The effects lasted until three months after the training programme. 'Learner-centred Training', 'Skilled Trainers', 'Encouraging Training Environment' and 'Positive Outcomes' are the main categories generated from the qualitative data. CONCLUSION: The blended emergent research training programme for clinical nurses could be used for clinical nurses' research education to improve their nursing research competence and critical thinking. RELEVANCE TO CLINICAL PRACTICE: The blended emergent teaching method could be considered as an effective method to provide an encouraging learning environment and promote learner-centred teaching for clinical nurses. The blended emergent research training programme could be used to improve nursing research competence and critical thinking of clinical nurses which are important for evidence-based nursing practice.

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study.

BACKGROUND: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. OBJECTIVE: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. METHODS: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. RESULTS: We anticipate that preliminary results will be available by Spring 2022. CONCLUSIONS: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/34652.

Instruments for measuring nursing research competence: a protocol for a scoping review.

INTRODUCTION: Nursing research competence of nursing personnel has received much attention in recent years, as nursing has developed as both an independent academic discipline and an evidence-based practiing profession. Instruments for appraising nursing research competence are important, as they can be used to assess nursing research competence of the target population, showing changes of this variable over time and measuring the effectiveness of interventions for improving nursing research competence. There is a need to map the current state of the science of the instruments for nursing research competence, and to identify well validated and reliable instruments. This paper describes a protocol for a scoping review to identify, evaluate, compare and summarise the instruments designed to measure nursing research competence. METHODS AND ANALYSIS: The scoping review will be conducted following Arksey and O'Malley's methodological framework and Levac et al's additional recommendations for applying this framework. The scoping review will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The protocol is registered through the Open Science Framework (https://osf.io/ksh43/). Eight English databases and two Chinese databases will be searched between 1 December 2020 and 31 December 2020 to retrieve manuscripts which include instrument(s) of nursing research competence. The literature screening and data extraction will be conducted by two researchers, independently. A third researcher will be involved when consensus is needed. The COnsensus-based Standards for the selection of health Measurement INstruments methodology will be used to evaluate the methodological quality of the included studies on measurement properties of the instruments, as well as the quality of all the instruments identified. ETHICS AND DISSEMINATION: Ethical approval is not needed. We will disseminate the findings through a conference focusing on nursing research competence and publication of the results in a peer-reviewed journal.

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.

Beware of Discharge: A Case Exploring the Ethics of Societal Expectations Placed on Families at Hospital Discharge.

As the population ages and medical therapies advance, more individuals are living in the community with complex health conditions. These individuals, as well as their clinicians, often assume their family members and friends will be capable of, and willing to, provide the caregiving work necessary to continue living at home. There is an ethical problem in this assumption that unpaid community care will be provided by family or friends. Using the Hunt and Ells Patient-Centered Care Ethics Analysis Model for Rehabilitation (2013), this article explores the ethical considerations involved in the hospital discharge planning of a fictional case involving a middle-aged, male stroke patient who is in a strained marriage. We discuss the ethical merits and concerns of the various discharge options. We conclude with recommendations to avoid assumptions that family or friends will provide unpaid care after a hospital discharge. We share advocacy suggestions for improving community supports for caregivers and those with long-term care needs.

Shifting Priorities for the Survival of My Child: Managing Expenses, Increasing Debt, and Tapping Into Available Resources to Maintain the Financial Stability of the Family.

BACKGROUND: Parents are confronted with a range of direct costs and intense caregiving demands following their child's cancer diagnosis, which may potentially threaten the financial stability of the family. OBJECTIVE: The aims of this study were to explore the financial impact of a new childhood cancer diagnosis on families and understand the strategies families use to manage these financial impacts. METHODS: As part of the mixed-methods Childhood Cancer Cost Study, a descriptive qualitative design was conducted. Parents discussed costs and their impact in a semistructured, audio-taped interview. A qualitative content analysis was used to analyze the transcribed data. RESULTS: Seventy-eight parents participated. Parents used several strategies to maintain financial stability. These strategies consisted of managing expenses, which entailed reducing living expenses and cutting unexpected cancer costs. Efforts to absorb these expenses required families to increase their debt while seeking ways to tap into available resources, including relying on their savings and leveraging their benefits and assets, increasing their paid work hours, relying on their support networks, and seeking help from philanthropy and government agencies for financial help. CONCLUSION: Parents used several strategies to manage the increased out-of-pocket expenses and reduced household income. IMPLICATIONS FOR PRACTICE: Our findings of the financial impact of cancer costs on families provide insight into needed practice and policy changes aimed at lessening the economic impact of a childhood cancer diagnosis on the family and allow healthcare professionals and researchers to pursue more in-depth cost assessments in the future.

Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study.

BACKGROUND: Osteogenesis imperfecta (OI) is a rare genetic condition that can lead to frequent debilitating bone fractures. Family caregivers of children with OI face unique challenges in providing care, which may include limited access to information about the condition, feelings of distress, and experiences of social isolation. Internet-based technologies (IBTs) have been useful for supporting other types of caregivers. However, the views of OI caregivers on IBTs have not been explored. OBJECTIVE: This study aimed to explore the views of OI caregivers on the uses of IBTs to support them in caring for their children with OI. METHODS: A qualitative descriptive study was conducted. Caregivers of children with OI were recruited at a pediatric hospital in Montreal, Canada. Interviews were used to explore each caregiver's views on the applicability of IBTs in supporting their caregiving needs. The interviews were transcribed verbatim and thematically analyzed. RESULTS: A total of 18 caregivers participated. The caregivers shared that IBTs were useful for facilitating the following activities: daily activities of caregiving (such as providing physical care, supporting relationships, supporting self-care and hope, and managing the logistics of caregiving), OI medical information seeking, and OI social networking. However, they also revealed concerns about the health consequences of IBT use and the quality of IBT content. Concerns regarding IBTs varied somewhat with caregivers' geographies. Caregivers offered suggestions and strategies for how IBTs can be optimized for caregiving. CONCLUSIONS: Family caregivers of children with OI face unique challenges in providing care, which may include lacking access to information about the rare condition and feeling socially isolated. OI caregivers use IBTs to overcome some of these challenges and to support their specific caregiving needs. These findings contribute to the paucity of knowledge by offering varied IBT strategies to support caregiving activities, which may be beneficial for other caregivers. Participants' suggestions for IBT services can inform the development of new resources for OI caregivers and potentially for other caregivers of children living with rare conditions.

Research capacity in nursing: a concept analysis based on a scoping review.

OBJECTIVE: As the discipline of nursing has advanced, research capacity in nursing has become increasingly important to the discipline's development. However, research capacity in nursing is still commonly used as a buzzword, without a consistent and clear definition. The purpose of this study is to clarify the concept of research capacity in nursing by identifying its conceptual components in the relevant nursing literature using the Pragmatic Utility method. DESIGN: A Pragmatic Utility concept analysis based on a scoping review. DATA SOURCES: Academic literature retrieved from PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Scopus, Web of Science and ProQuest Dissertations and Theses (PQDT). ELIGIBILITY CRITERIA: Qualitative studies, quantitative studies, mixed method studies or literature reviews focusing on research capacity in nursing published in English between 2009 and 2019. RESULTS: Competence, motivation, infrastructure and collaboration for nursing research are the antecedents of research capacity in nursing. The attributes of research capacity in nursing are 'non-individual level', 'context-embeddedness' and 'sustainability'. The direct outcome of research capacity in nursing is nursing research. The allied concepts identified are nursing research competency, nursing research capability and evidence-based practice capacity in nursing. CONCLUSIONS: Research capacity in nursing is the ability to conduct nursing research activities in a sustainable manner in a specific context, and it is normally used at a non-individual level. Research capacity in nursing is critical for the development of the nursing discipline, and for positive nurse, patient and healthcare system outcomes. More studies are needed to further explore the allied concepts of research capacity in nursing, and to better understand relationships among these allied concepts.

Nursing lives in the blogosphere: A thematic analysis of anonymous online nursing narratives.

AIM: The aim of this study was to explore the work-life narratives of nurses through a thematic analysis of the nursing accounts they post in their publicly accessible, anonymous blogs. BACKGROUND: Many nurses participate on social media. Blogs have been advocated as a self-reflective tool in nursing practice, yet as far as the authors are aware, no previous studies have explored nurses' individual blogs for their potential to reveal nurses' perceptions of nursing work. DESIGN: The research design was qualitative description. METHODS: Between May-August 2015, Internet search engines were used to discover lists of nursing blogs recommended by organizations representing nurses' interests. Recommended blogs were purposively sampled. Four anonymous blogs written by nurses from different nursing specialties met the sampling criteria. All 520 of their entries from 2014 were read and copied into NVivo 10, where an inductive coding process was followed. FINDINGS: Three major themes arose in these nurses' online discussions of their work lives: they truly care about and value their nursing work, but they are feeling stressed and burnt out and they are using their anonymous blogs to share factors that frustrate them in their nursing work. Three main areas of frustration were revealed: teamwork problems, challenging patients and families, and management issues. CONCLUSION: Anonymous nursing blogs offer valuable, longitudinal insights into nurses' perceptions of their work lives. Nursing blogs should be further explored for ongoing insights into nurses' experiences of nursing work, as well as nurses' recommendations for addressing issues causing them to feel frustrated in their work environments.

Clinical Performance of Pedo Jacket Crowns in Maxillary Anterior Primary Teeth.

PURPOSES: To assess the clinical performance of Pedo Jacket crowns for restoration of carious primary anterior teeth. METHODS: A total of 129 carious primary incisors and canines of 48 children younger than 71 months of age- were restored with Pedo Jacket crowns and resin-modified glass ionomer cementation. They were assessed for: ease of use; presence of recurrent decay; wear; partial or complete loss of the crown; color stability; gingival health; and overall clinical success over a 12-month follow-up. The patient's behavior at the restorative appointment during crown placement was also assessed. RESULTS: An overall clinical success of 89.5 percent of the teeth in 87.3 percent of the children was seen one year later. The crowns were easy to use, even in uncooperative children. The color stability, wear, plaque accumulation, and gingival health were acceptable. Discoloration, wear, or complete loss of the crown were found in 13.1 percent, 5.4 percent, and 7.6 percent of children, respectively. Although not statistically significant, failures were associated with poor patient cooperation at the time of crown placement, poor oral hygiene, or operator error. CONCLUSION: Pedo Jacket crowns are a viable treatment alternative for carious maxillary primary anterior teeth.