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

10.2196/24851 ◽  
2020 ◽  
Author(s):  
Alison P Thompson ◽  
Shannon E MacDonald ◽  
Eytan Wine ◽  
Shannon D Scott
Keyword(s):  
Functional Constipation ◽  
Interpretive Description ◽  
Parents Experiences

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.

Correction of functional constipation in patients with limited mobility after stroke

2019 ◽  
Vol 1 (6) ◽  
pp. 53-55
Author(s):  
M. S. Turchina ◽  
M. V. Bukreeva ◽  
L. Yu. Korolyova ◽  
Zh. E. Annenkova ◽  
L. G. Polyakov
Keyword(s):  
Quality Of Life ◽  
Chronic Constipation ◽  
Functional Constipation ◽  
Cerebrovascular Diseases ◽  
Medical Rehabilitation ◽  
Stroke Patients ◽  
Limited Mobility ◽  
Complete Restoration ◽  
The World

Currently, the problem of early rehabilitation of stroke patients is important, since in terms of the prevalence of cerebrovascular diseases and disability after suffering a stroke, Russia is one of the first places in the world. The complex of medical rehabilitation of such patients should provide for the early and most complete restoration of all body functions, patient education for lost skills, re-socialization of the patient and improvement of the quality of life. One of the factors contributing to a significant reduction in the quality of life after a stroke is the development of chronic constipation. The article reflects the modern methods of correction of chronic constipation in patients with limited mobility.

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