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

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 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

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 Content and analysis of a knowledge translation activity for an elder abuse detection tool: a descriptive study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mark J. Yaffe
Keyword(s):  
Public Health ◽  
Knowledge Translation ◽  
Information Needs ◽  
Elder Abuse ◽  
Descriptive Study ◽  
Public Health Research ◽  
Descriptive Data ◽  
Detection Tool ◽  
Suspicion Index ◽  
Structured Questionnaire

Abstract Background Knowledge translation (KT) is challenging to carry out and assess. The content of a program developed to foster KT activities pertaining to the Elder Abuse Suspicion Index (EASI)©, a tool to help identify elder abuse, is described, along with reporting and analysis of some of its outcomes. Methods Enquiries about the use of the EASI were encouraged through completion of a structured questionnaire available on an EASI website. These were submitted by email and guided individualized responses. Descriptive data collated anonymously from the questionnaires described in aggregate corresponders’ occupations, countries of work, information needs about the tool, and intent of use. The processes that generated this data were evaluated as to whether they conformed to established elements of KT. Results One hundred thirty-eight queries were received over 6 years coming from enquirers with 12 different professional backgrounds, working in 25 countries. The information sought aimed to facilitate EASI use in clinical, quality improvement, public health, research, teaching, KT, and commercial ventures. Conclusions This activity, incorporating recognized elements of a KT undertaking, documents specific global interests in elder abuse detection. It suggests a model for researchers to gauge interest in their findings and to promote exchange around them.

scholarly journals Parent engagement in co-design of clinical trials: the PARENT trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Leigh M. Vanderloo ◽  
Shelley M. Vanderhout ◽  
Erika Tavares ◽  
Jonathon Maguire ◽  
Sharon Straus ◽  
...  
Keyword(s):  
Focus Group ◽  
Patient Engagement ◽  
Parent Engagement ◽  
Nominal Group Technique ◽  
Nominal Group ◽  
Future Research ◽  
Potential Barriers ◽  
Patient Engagement In Research ◽  
Diverse Individual ◽  
Parent Trial

AbstractEvidence generated from partnering with parents to design and conduct research together may be used to refine, adjust, and modify future research approaches. This study aimed to describe the initial approaches to parent engagement in the design of the PARENT trial as well as understand parent perspectives on the acceptability and relevance of the PARENT trial and potential barriers and facilitators to participation.Parents participating in the TARGet Kids! cohort were invited to participate in a focus group, called the PARENT panel, to co-design the PARENT trial. This focus group was conducted to capture diverse individual and collective parents’ experiences. Overall methodological approaches for the PARENT panel were informed by the CIHR Strategy for Patient Oriented Research (SPOR) guiding principles (mutual respect, co-building, inclusiveness, and support) for patient engagement in research, and facilitated through the Knowledge Translation Program in the Li Ka Shing Knowledge Institute at Unity Health Toronto. Using a Nominal Group Technique, the PARENT panel provided feedback on the feasibility, relevance, and acceptability of the proposed intervention. Findings from this work will be used to further refine, adjust, and modify the next iteration of the PARENT trial, which will also serve as an opportunity to discuss the efforts made by researchers to incorporate parent suggestions and what additional steps are required for improved patient engagement.

scholarly journals Approaching patient engagement in research: what do patients with cardiovascular disease think?

2015 ◽  
pp. 1061 ◽  
Author(s):  
Lila J. Finney Rutten ◽  
Megan Morris ◽  
Lisa Schrader ◽  
Sheila Manemann ◽  
Jyotishman Pathak ◽  
...  
Keyword(s):  
Cardiovascular Disease ◽  
Patient Engagement ◽  
Patient Engagement In Research

scholarly journals “Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

2018 ◽  
Vol 14 (1) ◽  
pp. 3-14 ◽  
Author(s):  
Zainab Afshan Sheikh ◽  
Klaus Hoeyer
Keyword(s):  
Qualitative Study ◽  
Information Exchange ◽  
Information Needs ◽  
Research Collaboration ◽  
Genetic Research ◽  
Research Participation ◽  
Research Participants ◽  
Mutual Engagement ◽  
Information Practices ◽  
Types Of Information

This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan). Policies aimed at harmonizing ethics standards for international research do not encapsulate some of the most important aspects of information practices for the research participants involved. We suggest shifting the focus from standards of one-way information delivery to a more process-oriented form of research ethics, where the contextual exploration of local needs through a mutual engagement with participants gains more ground.

VP165 Landscape Assessment: Patient Engagement In Health Technology Assessment

2017 ◽  
Vol 33 (S1) ◽  
pp. 224-225
Author(s):  
Elisabeth Oehrlein ◽  
Jason Harris ◽  
Nicole Labkoff ◽  
Eleanor Perfetto ◽  
Manal Ziadeh ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Engagement ◽  
Public Involvement ◽  
Web Search ◽  
Health Technology ◽  
Public Consultation ◽  
Patient Questionnaire ◽  
Draft Guidance ◽  
Stakeholder Consultation

INTRODUCTION:Understanding the current landscape of patient engagement across value decision-making bodies internationally is a critical first step toward improving the patient centricity of Health Technology Assessment (HTA). This study assessed: (i) Terms and definitions used; (ii) Patient engagement opportunities; (iii) Evidence of patient engagement.METHODS:A sample of country-specific HTA's (HTA; n = 6), professional organizations (PO; n = 4), and collaborations/independent organizations (CO; n = 3) was selected for representativeness. Information was gathered through: (i) targeted web search and (ii) emailing organizations directly. Definitions, HTA methods documents, and the three most recent evaluations were identified, abstracted, and compared. Data were collected between September-October 2016.RESULTS:Numerous terms are used to describe patient engagement: patient input (HTA = 1, PO = 1), patient-group submitted information (HTA = 1), cooperation with patients/users (HTA = 1), public consultation (HTA = 1), patient perspectives (HTA = 1, PO = 1), involvement of people affected (HTA = 1), patient involvement (HTA = 2), patient and public involvement (HTA = 1), lay involvement (HTA = 1), inclusion of patient representative (PO = 3), patient reports (PO = 1), patient preference (PO = 2), public consultation (CO = 1), stakeholder consultation (CO = 1), open input (CO = 1), stakeholder engagement (CO = 1), and patient participation (CO = 1). Opportunities for patient engagement were described as: patient questionnaire (HTA = 2); comment period (HTA = 1; CO = 1); committee participation (HTA = 3; PO = 3); propose topics (HTA = 1); draft guidance (HTA = 1); general stakeholder forum (CO = 1). While organizations outline opportunities for patient engagement, not all organizations have clear evidence the practices are used or have impact. Recent evaluations demonstrate clear evidence of engagement (HTA = 2); Unclear or mixed evidence (HTA = 1; PO = 1; CO = 2); No evidence (HTA = 3; PO = 3; CO = 1).CONCLUSIONS:There is substantial heterogeneity in the terms used to describe patient engagement activities across organizations. While a variety of opportunities for patient engagement are described, lack of clear evidence to how patient engagement practices are consistently used may contribute to the perception that engagement by HTAs.

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