scholarly journals Understanding Parents’ Experiences Caring for a Child with Functional Constipation: Interpretive Description Study (Preprint)

2020 ◽  
Author(s):  
Alison P Thompson ◽  
Shannon E MacDonald ◽  
Eytan Wine ◽  
Shannon D Scott
Keyword(s):  
Information Needs ◽  
Medical Condition ◽  
Clinical Care ◽  
Functional Constipation ◽  
Evidence Base ◽  
Treatment Programs ◽  
Interpretive Description ◽  
Care Models ◽  
Digital Knowledge ◽  
Parents Experiences

BACKGROUND Pediatric functional constipation (FC) is a common but serious medical condition. Despite significant effects on children, families, and the healthcare system, the condition is typically undertreated. Parents carry primary responsibility for complex treatment programs; therefore, understanding their experiences and needs may offer a critical perspective towards improving clinical care. OBJECTIVE The initial aim of this study was to understand and give voice to parents’ experiences and information needs when caring for a child with FC. The ultimate objective was to build an evidence base suitable for creating a digital Knowledge Translation tool to better support parents caring for a child with FC. METHODS This qualitative design used Interpretive Description methodology to generate findings aimed towards improving clinical care. One-on-one, in-depth interviews were completed either in-person or via online teleconferencing to explore parents’ perspectives. Data collection and analysis occurred concurrently. RESULTS Analysis of sixteen interviews generated four major themes; 1) living in the shadows, 2) not taken seriously - with a subtheme of 2a) persevering and advocating, 3) missing information and misinformation, 4) self-doubt and strained relationships. One minor theme of affirmative influences foster resilience and hope was identified. CONCLUSIONS Parents have significant unmet needs for support and information related to pediatric FC. To address gaps in current care provision, decision-makers may consider interventions for clinicians, resources for parents, and shifting care models to better meet parents’ needs. CLINICALTRIAL

scholarly journals An Evaluation of Parents’ Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study (Preprint)

2020 ◽  
Author(s):  
Alison P Thompson ◽  
Shannon E MacDonald ◽  
Eytan Wine ◽  
Shannon D Scott
Keyword(s):  
Knowledge Translation ◽  
Patient Engagement ◽  
Information Needs ◽  
Research Collaboration ◽  
Research Evaluation ◽  
Functional Constipation ◽  
Patient Questionnaire ◽  
Digital Knowledge ◽  
Patient Engagement In Research ◽  
Parents Experiences

BACKGROUND The last decade has seen increasing calls for patient and public involvement in health-related research due to an ideological shift toward more equitable methods of knowledge development and an effort to increase the usability and relevance of knowledge by improving outcomes in clinical practice. Patient engagement includes simply informing patients to offering complete decision-making autonomy to individuals, groups, communities, caregivers, friends, and families who have personal experience and knowledge of a health issue. Despite the use of patient engagement methods in research, evaluation has lagged, resulting in a knowledge gap that makes it difficult to foster capacity and sustainability for patients and researchers alike since little is known about how effective patient collaborations in research are built, maintained, or improved. This study centers on pediatric functional constipation, a common condition that affects children and families. Since parents play a pivotal role in treatment, they are an optimal group to engage in improving the resources and support available to them. OBJECTIVE This study aims to use patient-engagement methods to establish a research collaboration with parents to cocreate a digital knowledge translation tool for parents caring for a child with functional constipation and formally evaluate the patient engagement processes within this project to build the science of patient engagement in research. METHODS Members of the parent collaborator group will be recruited from previous participants who expressed interest in the development of a digital knowledge translation tool. The group will collaborate with the research team to create a tool to address patients’ support and information needs when caring for a child with functional constipation. The parent collaborator group will then be evaluated in a multimethod study design. Data will be digitally and anonymously collected from all members of the parent collaborator group, using the validated Public and Patient Engagement Evaluation Tool (PPEET) patient questionnaire. Descriptive statistics will be used to report group characteristics and question responses. Qualitative analysis will be used to understand open-ended question responses. Specifically, directed content analysis will be used to assess themes of the Patient Engagement in Research (PEIR) Framework with a combination of deductive and inductive analyses. Findings will be integrated into the discussion if there are sufficient commonalities and inter-relationships. The final manuscript will include reporting of each element as described by the Good Reporting of a Mixed Methods Study criteria. RESULTS Recruitment is planned for June 2020. Data collection for the evaluation of patient engagement processes will occur upon completion of the digital knowledge translation tool. The results of this study are expected to be published by the end of 2020. CONCLUSIONS This study will provide valuable information about parents’ experiences participating in child-health research and is a fundamental step in building the science of patient engagement in research. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/19108

scholarly journals An Evaluation of Parents’ Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study

10.2196/19108 ◽  
2020 ◽  
Vol 9 (8) ◽  
pp. e19108
Author(s):  
Alison P Thompson ◽  
Shannon E MacDonald ◽  
Eytan Wine ◽  
Shannon D Scott
Keyword(s):  
Knowledge Translation ◽  
Patient Engagement ◽  
Information Needs ◽  
Research Collaboration ◽  
Research Evaluation ◽  
Functional Constipation ◽  
Patient Questionnaire ◽  
Digital Knowledge ◽  
Patient Engagement In Research ◽  
Parents Experiences

Background The last decade has seen increasing calls for patient and public involvement in health-related research due to an ideological shift toward more equitable methods of knowledge development and an effort to increase the usability and relevance of knowledge by improving outcomes in clinical practice. Patient engagement includes simply informing patients to offering complete decision-making autonomy to individuals, groups, communities, caregivers, friends, and families who have personal experience and knowledge of a health issue. Despite the use of patient engagement methods in research, evaluation has lagged, resulting in a knowledge gap that makes it difficult to foster capacity and sustainability for patients and researchers alike since little is known about how effective patient collaborations in research are built, maintained, or improved. This study centers on pediatric functional constipation, a common condition that affects children and families. Since parents play a pivotal role in treatment, they are an optimal group to engage in improving the resources and support available to them. Objective This study aims to use patient-engagement methods to establish a research collaboration with parents to cocreate a digital knowledge translation tool for parents caring for a child with functional constipation and formally evaluate the patient engagement processes within this project to build the science of patient engagement in research. Methods Members of the parent collaborator group will be recruited from previous participants who expressed interest in the development of a digital knowledge translation tool. The group will collaborate with the research team to create a tool to address patients’ support and information needs when caring for a child with functional constipation. The parent collaborator group will then be evaluated in a multimethod study design. Data will be digitally and anonymously collected from all members of the parent collaborator group, using the validated Public and Patient Engagement Evaluation Tool (PPEET) patient questionnaire. Descriptive statistics will be used to report group characteristics and question responses. Qualitative analysis will be used to understand open-ended question responses. Specifically, directed content analysis will be used to assess themes of the Patient Engagement in Research (PEIR) Framework with a combination of deductive and inductive analyses. Findings will be integrated into the discussion if there are sufficient commonalities and inter-relationships. The final manuscript will include reporting of each element as described by the Good Reporting of a Mixed Methods Study criteria. Results Recruitment is planned for June 2020. Data collection for the evaluation of patient engagement processes will occur upon completion of the digital knowledge translation tool. The results of this study are expected to be published by the end of 2020. Conclusions This study will provide valuable information about parents’ experiences participating in child-health research and is a fundamental step in building the science of patient engagement in research. International Registered Report Identifier (IRRID) PRR1-10.2196/19108

Parents’ Experiences and Information Needs While Caring for a Child With Functional Constipation: A Systematic Review

2020 ◽  
pp. 000992282096445
Author(s):  
Alison P. Thompson ◽  
Eytan Wine ◽  
Shannon E. MacDonald ◽  
Alyson Campbell ◽  
Shannon D. Scott
Keyword(s):  
Health Care Providers ◽  
Information Needs ◽  
A Priori ◽  
Functional Constipation ◽  
Family Education ◽  
Current Evidence ◽  
Care Providers ◽  
Relationship Breakdown ◽  
Published Research ◽  
Parents Experiences

Pediatric functional constipation (FC) reportedly affects at least 1 in 10 children worldwide. Parent and family education is a key component for successful treatment, yet there is little research exploring what information families need and how to best support them. The aim of this review is to synthesize current evidence on the experiences and information needs of parents caring for a child with FC. We systematically searched published research and completed screening against a priori inclusion criteria. Thirteen studies (n = 10 quantitative, n = 3 qualitative) were included. We found 2 main themes, precarious footing and profound and pervasive effects. Heavy caregiving burdens fueled doubts, misinformation, relationship breakdown, and treatment deviation. In light of clinical recommendations, our findings reveal a potential mismatch between parents’ needs and care provision for FC. It is likely that both parents and health care providers would benefit from resources and interventions to improve care related to pediatric FC.

scholarly journals Structural vulnerability: migration and health in social context

2021 ◽  
Vol 6 (Suppl 1) ◽  
pp. e005109
Author(s):  
Lauren Carruth ◽  
Carlos Martinez ◽  
Lahra Smith ◽  
Katharine Donato ◽  
Carlos Piñones-Rivera ◽  
...  
Keyword(s):  
Clinical Care ◽  
Professional Associations ◽  
Humanitarian Assistance ◽  
Structural Vulnerability ◽  
Global Migration ◽  
Humanitarian Interventions ◽  
Care Models ◽  
The Usa ◽  
Mexico Border ◽  
Training And Support

Based on the authors’ work in Latin America and Africa, this article describes and applies the concept ‘structural vulnerability’ to the challenges of clinical care and healthcare advocacy for migrants. This concept helps consider how specific social, economic and political hierarchies and policies produce and pattern poor health in two case studies: one at the USA–Mexico border and another in Djibouti. Migrants’ and providers’ various entanglements within inequitable and sometimes violent global migration systems can produce shared structural vulnerabilities that then differentially affect health and other outcomes. In response, we argue providers require specialised training and support; professional associations, healthcare institutions, universities and humanitarian organisations should work to end the criminalisation of medical and humanitarian assistance to migrants; migrants should help lead efforts to reform medical and humanitarian interventions; and alternative care models in Global South to address the structural vulnerabilities inherent to migration and asylum should be supported.

Health information needs, sources, and barriers of primary care patients to achieve patient-centered care: A literature review

2016 ◽  
Vol 22 (4) ◽  
pp. 992-1016 ◽  
Author(s):  
Martina A Clarke ◽  
Joi L Moore ◽  
Linsey M Steege ◽  
Richelle J Koopman ◽  
Jeffery L Belden ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Information ◽  
Information Search ◽  
Information Needs ◽  
Information Sources ◽  
Medical Condition ◽  
Information Access ◽  
The Internet ◽  
Common Information ◽  
Primary Care Patients

To synthesize findings from previous studies assessing information needs of primary care patients on the Internet and other information sources in a primary care setting. A systematic review of studies was conducted with a comprehensive search in multiple databases including OVID MEDLINE, CINAHL, and Scopus. The most common information needs among patients were information about an illness or medical condition and treatment methods, while the most common information sources were the Internet and patients’ physicians. Overall, patients tend to prefer the Internet for the ease of access to information, while they trust their physicians more for their clinical expertise and experience. Barriers to information access via the Internet include the following: socio-demographic variables such as age, ethnicity, income, education, and occupation; information search skills; and reliability of health information. Conclusion: Further research is warranted to assess how to create accurate and reliable health information sources for both Internet and non-Internet users.

scholarly journals Advancing the conversation: next steps for lesbian, gay, bisexual, trans, and queer (LGBTQ) health sciences librarianship

2017 ◽  
Vol 105 (4) ◽  
Author(s):  
Blake W. Hawkins ◽  
Martin Morris ◽  
Tony Nguyen ◽  
John Siegel ◽  
Emily Vardell
Keyword(s):  
Information Seeking ◽  
Information Needs ◽  
Panel Discussion ◽  
Professional Community ◽  
Evidence Base ◽  
Health Sciences ◽  
Medical Library ◽  
Lgbtq Health ◽  
Canadian Health ◽  
Seeking Behavior

In recent years, librarians in various sectors have been moving forward a conversation on the distinct information needs and information-seeking behavior of our lesbian, gay, bisexual, trans, and queer (LGBTQ) patrons and how well the profession recognizes and meets those needs. Health sciences librarianship has been slower than other areas of the profession in creating an evidence base covering the needs of its LGBTQ patrons, with, until recently, only very limited literature on this subject. LGBTQ health sciences librarianship is now starting to attract new interest, with librarians working together to bring this emerging specialization to the attention of the broader professional community. In this paper, the authors report on a dedicated panel discussion that took place at the 2016 joint annual meeting of the Medical Library Association and Canadian Health Libraries Association/Association des bibliothèques de la santé du Canada in Toronto, Ontario, Canada; discuss subsequent reflections; and highlight the emerging role for health sciences librarians in providing culturally competent services to the LGBTQ population. Recommendations are also provided for establishing a tool kit for LGBTQ health sciences librarianship from which librarians can draw. We conclude by highlighting the importance of critically reflective practice in health sciences librarianship in the context of LGBTQ health information.

scholarly journals How to design and set up a clinical trial part 1: the research question

2019 ◽  
Vol 12 (3) ◽  
pp. 111-116
Author(s):  
Amarpreet Atwal ◽  
Philip E Benson
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Clinical Relevance ◽  
Clinical Care ◽  
Research Question ◽  
Relevant Information ◽  
Evidence Base ◽  
Human Participants ◽  
Set Up

Data from clinical trials involving human participants are essential in establishing an evidence base about the safety and effectiveness of our treatments. This first article describes the steps involved in designing and setting up a clinical trial, from establishing the research question(s) to searching the literature. Acquiring some knowledge about how to set up a clinical trial will allow the conscientious clinician to use the most relevant information to provide the highest possible standards of clinical care for his/her patients. CPD/Clinical Relevance: Even if a clinician is not, has never been, nor is ever planning to be involved in research, he/she should understand and be able to interpret the data from clinical trials.

Anaesthesia in the elderly

2017 ◽  
Author(s):  
Bernadette Veering ◽  
Chris Dodds
Keyword(s):  
Elderly Patients ◽  
Postoperative Morbidity ◽  
Medical Condition ◽  
Clinical Care ◽  
The Elderly ◽  
Individual Variability ◽  
Morbidity And Mortality ◽  
Clear Understanding ◽  
Organ Systems ◽  
Specific Organ

The elderly population continues to grow. As surgical intervention in disease processes becomes more aggressive, the anaesthetist is faced with an increasing number of elderly patients. Elderly patients should be approached with a clear understanding of ageing, how it occurs, how it affects specific organ systems, and how it may influence clinical care, when a patient is subjected to an operation. The ageing process is a multifactorial process, resulting in a decreased capacity for adaptation and producing a gradual decrease in functional reserve of many organ systems. This has significant effects on the physiological responses to surgical and pharmacological trespass faced during anaesthesia. Increasing age is associated with changes in the response to a wide variety of drugs. Changes in dose–response relationships may be as a result of changes in pharmacokinetics, pharmacodynamics, or a combination of both. One should realize that increasing age is associated with a large inter-individual variability in dose requirements. As such, it is important to carefully titrate the dose against the desired clinical effect in an older patient. Preoperative physical and mental state are the most important determinants of per- and postoperative morbidity and mortality. The number of co-morbidities increases with advanced age and as such, optimization of the medical condition is essential to reduce the morbidity and mortality.

Generalist psychiatric treatments for borderline personality disorder: the evidence base and common factors

2015 ◽  
Author(s):  
Anthony W. Bateman ◽  
Roy Krawitz
Keyword(s):  
Borderline Personality Disorder ◽  
Personality Disorder ◽  
Clinical Management ◽  
Clinical Care ◽  
Relevant Literature ◽  
Common Factors ◽  
Evidence Base ◽  
Borderline Personality ◽  
Outcome Studies ◽  
Supportive Psychotherapy

Chapter 2 discusses generalist psychiatric treatments for borderline personality disorder (BPD). It introduces the rationale for seeking common factors in treatment and provide a brief overview of some relevant literature, outlines the four generalist treatments that have been shown to be effective (structured clinical management (SCM), general psychiatric management (GPM), good clinical care (GCC), and supportive psychotherapy (SP)), describes the outcome studies of the four treatments, and reviews commonalities of the treatments.

Sign in / Sign up

Export Citation Format

Share Document