scholarly journals Rare, epilepsy-related disorder including intellectual disability – A scoping review of caregivers’ identified information needs

2021 ◽  
pp. 174462952110023
Author(s):  
Merete Kristin Tschamper ◽  
Silje Systad
Keyword(s):  
Intellectual Disability ◽  
Scoping Review ◽  
Information Exchange ◽  
Information Needs ◽  
Medical Information ◽  
Specific Information ◽  
Term Care ◽  
Related Disorder ◽  
Formal Caregivers

Persons with rare, epilepsy-related disorders often have intellectual disability and need long-term care. Informal and formal caregivers need information in order to care for the persons in a safe way. Aims: The aims of this review were: (1) to obtain an overview of caregiver-reported information needs; and (2) to investigate if there are information needs that are unique for caregivers of persons with rare epilepsies. Method: We followed the scoping review framework outlined by Arksey and O’Malley and the preferred reporting items outlined by PRISMA. Results: Among the 17 articles that met the inclusion criteria, 5 included caregivers of persons with rare epilepsies. Categories of information needs: (1) Medical information; (2) Information on how to cope with emotional distress; (3) Experiential information from peers; and (4) Interdisciplinary information exchange. The need for disorder-specific information seemed particularly important for caregivers of persons with rare epilepsies. Conclusion: There is a need for further studies, particularly on formal caregivers’ information needs.

scholarly journals Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

Children ◽  
2021 ◽  
Vol 8 (7) ◽  
pp. 558
Author(s):  
Beth Skelton ◽  
Kathleen Knafl ◽  
Marcia Van Riper ◽  
Louise Fleming ◽  
Veronica Swallow
Keyword(s):  
Down Syndrome ◽  
Scoping Review ◽  
Care Coordination ◽  
Information Needs ◽  
Personal Health Record ◽  
Specific Information ◽  
Care Providers ◽  
Children With Down Syndrome ◽  
Scoping Reviews ◽  
Mhealth Apps

Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families’ care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families’ recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS.

scholarly journals Mapping Research Conducted on Long-Term Care Facilities for Older People in Brazil: A Scoping Review

2021 ◽  
Vol 18 (4) ◽  
pp. 1522
Author(s):  
Patrick Alexander Wachholz ◽  
Deborah Cristina De Oliveira ◽  
Kathryn Hinsliff-Smith ◽  
Reena Devi ◽  
Paulo José Fortes Villas Boas ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Older People ◽  
Study Design ◽  
Scoping Review ◽  
Long Term Care ◽  
Assessment Tools ◽  
Small Scale ◽  
Term Care ◽  
Care Facilities

This scoping review aimed to explore the characteristics, strengths, and gaps in research conducted in Brazilian long-term care facilities (LTCFs) for older adults. Electronic searches investigating the residents (≥60 years old), their families, and the LTCF workforce in Brazil were conducted in Medline, EMBASE, LILACS, and Google Scholar, within the timescale of 1999 to 2018, limited to English, Portuguese, or Spanish. The reference lists were hand searched for additional papers. The Mixed Methods Appraisal Tool (MMAT) was used for critical appraisal of evidence. Data were reported descriptively considering the study design, using content analysis: 327 studies were included (n = 159 quantitative non-randomized, n = 82 quantitative descriptive, n = 67 qualitative, n = 11 mixed methods, n = 6 randomized controlled trials, and n = 2 translation of assessment tools). Regardless of the study design, most were conducted in a single LTCF (45.8%), in urban locations (84.3%), and in non-profit settings (38.7%). The randomized trials and descriptive studies presented the lowest methodological quality based on the MMAT. This is the first review to provide an overview of research on LTCFs for older people in Brazil. It illustrates an excess of small-scale, predominantly qualitative papers, many of which are reported in ways that do not allow the quality of the work to be assured.

A scoping review to inform care coordination strategies for youth with traumatic brain injuries: Care coordination tools

2021 ◽  
pp. 205343452110706
Author(s):  
Brandy Shook ◽  
Cara Palusak ◽  
Susan C Davies ◽  
Jennifer P Lundine
Keyword(s):  
Scoping Review ◽  
Care Coordination ◽  
Brain Injuries ◽  
Unmet Needs ◽  
Chronic Health Condition ◽  
Service Access ◽  
Care Needs ◽  
Term Care ◽  
Care Plans

Introduction & importance Children with traumatic brain injury (TBI) report unmet needs several years after their injury and may require long-term care. However, this chronic health condition is often only treated and monitored in the short-term. Care for young persons with TBI often relies on parents to manage their child's complex care network. Effective care coordination can close these gaps and facilitate continuity of care for children with TBI. The purpose of this scoping review was to develop a better understanding of tools that improve care coordination for Children with Special Health Care Needs (CSHCN). This, in turn, can inform care for children with TBI. Methods A scoping review was conducted following the PRISMA framework and methodology. OVID/Medline, CINAHL, PsycINFO, EMBASE, and ERIC databases were searched for articles relevant to care coordination tools used with CSHCN. Results 21 articles met the criteria for inclusion in the review, and 6 major categories of care coordination tools were identified: telehealth, online health records and tools, care plans, inpatient discharge protocols, family training, and reminders. Discussion Studies examining telehealth, online tools, care plans, and family training care coordination interventions for CSHCN have shown positive outcomes and would be relevant strategies to improve the care of children with TBI. Future prospective research should investigate these tools to explore whether they might improve communication, reduce unmet needs, increase service access, and improve long-term outcomes for children with TBI.

scholarly journals Hearing Screening for Residents in Long-Term Care Homes Who Live with Dementia: A Scoping Review

2021 ◽  
pp. 1-24
Author(s):  
Fiona Höbler ◽  
Katherine S. McGilton ◽  
Walter Wittich ◽  
Kate Dupuis ◽  
Marilyn Reed ◽  
...  
Keyword(s):  
Older Adults ◽  
Hearing Loss ◽  
Nursing Staff ◽  
Scoping Review ◽  
Pure Tone ◽  
Long Term Care ◽  
Pure Tone Audiometry ◽  
Care Homes ◽  
Term Care

Background: Hearing loss is highly prevalent in older adults, particularly among those living with dementia and residing in long-term care homes (LTCHs). Sensory declines can have deleterious effects on functioning and contribute to frailty, but the hearing needs of residents are often unrecognized or unaddressed. Objective: To identify valid and reliable screening measures that are effective for the identification of hearing loss and are suitable for use by nursing staff providing care to residents with dementia in LTCHs. Methods: Electronic databases (Embase, Medline, PsycINFO, CENTRAL, and CINAHL) were searched using comprehensive search strategies, and a stepwise approach based on Arksey & O’Malley’s scoping review and appraisal process was followed. Results: There were 193 scientific papers included in the review. Pure-tone audiometry was the most frequently reported measure to test hearing in older adults living with dementia. However, measures including self- or other-reports and questionnaires, review of medical records, otoscopy, and the whisper test were found to be most suitable for use by nurses working with older adults living with dementia in LTCHs. Conclusion: Although frequently used, the suitability of pure-tone audiometry for use by nursing staff in LTCHs is limited, as standardized audiometry presents challenges for many residents, and specific training is needed to successfully adapt test administration procedures and interpret results. The whisper test was considered to be more suitable for use by staff in LTCH; however, it yields a limited characterization of hearing loss. There remains an urgent need to develop new approaches to screen hearing in LTCHs.

scholarly journals Correction to: factors affecting residents transition from long term care facilities to the community: a scoping review

2017 ◽  
Vol 17 (1) ◽  
Author(s):  
Shannon Freeman ◽  
Kristen Bishop ◽  
Lina Spirgiene ◽  
Erica Koopmans ◽  
Fernanda C. Botelho ◽  
...  
Keyword(s):  
Scoping Review ◽  
Long Term Care ◽  
Term Care ◽  
Factors Affecting ◽  
Care Facilities

scholarly journals Deciphering the Signal From the Noise: Caregivers’ Information Appraisal and Credibility Assessment of Cancer-Related Information Exchanged on Social Networking Sites

2019 ◽  
Vol 26 (1) ◽  
pp. 107327481984160
Author(s):  
Elizabeth A. Gage-Bouchard ◽  
Susan LaValley ◽  
Julia A. Devonish
Keyword(s):  
Social Networking ◽  
Social Networking Sites ◽  
Information Exchange ◽  
Information Needs ◽  
Cancer Information ◽  
Specific Information ◽  
Credibility Assessment ◽  
Cancer Communication ◽  
Related Information ◽  
Cancer Caregivers

With the rise in the use of the Internet for health-related purposes, social networking sites (SNSs) have become a prominent platform for cancer communication and information exchange. Studies of cancer communication on SNS have mostly focused on understanding the quantity, content, quality, and user engagement (eg, likes and comments) with cancer-related information on SNS. There is less of an understanding of when and why people coping with cancer turn to SNS for cancer-related information, and how users appraise the credibility of cancer-related information obtained on SNS. In this study, we use data from in-depth qualitative interviews with 40 primary caregivers of pediatric patients with cancer to examine how cancer caregivers engage in information appraisal and credibility assessment of cancer-related information obtained on SNS. Findings show that cancer caregivers turned to SNS for cancer-related information because information on SNS was immediate, targeted in response to specific caregiver questions and concerns, and tailored to the specific information needs of cancer caregivers. Cancer caregivers evaluated the credibility of cancer-related information obtained on SNS through assessment of the SNS user who posted the information, frequency the same information was shared, and external corroboration. Findings have important implications for cancer communication and information interventions and point to elements of SNS cancer communication that can be integrated into health professional–facilitated communication and cancer information strategies.

Applying DEMATEL to assess TRIZ’s inventive principles for resolving contradictions in the long-term care cloud system

2017 ◽  
Vol 117 (6) ◽  
pp. 1244-1262 ◽  
Author(s):  
Dong-Shang Chang ◽  
Shu-Ming Liu ◽  
Yi-Chun Chen
Keyword(s):  
Information Exchange ◽  
Long Term Care ◽  
Cloud System ◽  
Mining System ◽  
Term Care ◽  
Content Type ◽  
Medical Institutions ◽  
The Government ◽  
Complex Relationships

Purpose The purpose of this paper is to find the key innovative principles for evaluating the long-term care (LTC) cloud system by exploring contradictory and complex points in its development. Design/methodology/approach The theory of inventive problem solving (TRIZ) and the decision-making trial and evaluation laboratory (DEMATEL) approaches are integrated to resolve complex contradictions in the system. The heuristic reasoning of TRIZ is applied to obtain innovation principles for an LTC cloud mining system. However, the importance and feasibility of these innovative principles require further assessment. In this study, DEMATEL is employed to clarify the complex relationships among the principles and evaluate their key influences. Findings This paper identifies six primary contradictions and derives 25 innovative principles for the resolution of these conflicts. Further analysis confirms three key innovative principles. First, the government should consider the overall planning of the cloud system platform, followed by the participation of other medical and LTC institutions. Second, the information capability of LTC institutions should be unified by recording the pathology data of care recipients to create an information exchange system. Third, LTC institutions should act in cooperation with medical institutions to provide professional medical capabilities. Originality/value The contributions of this paper are two-fold. First, this study provides an integrated methodology integrating the TRIZ and DEMATEL approaches to resolve LTC problems. Second, this research identifies the key innovative principles for developing an LTC cloud system in Taiwan.

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