Exploring the Needs of Parents with a Child with Chronic Pain: A Qualitative Secondary Analysis

Background: Pediatric chronic pain affects 15-39% of children and their families, yet it remains under-recognized and undertreated by clinicians.  Despite increasing numbers of children diagnosed with chronic pain, few qualitative studies have explored the experiences and needs of these families. Methods: A secondary analysis of 13 semi-structured interviews was conducted using a qualitative descriptive approach. These interviews featured parents of children attending a large children’s hospital in a major urban city in western Canada. Data was analyzed in three phases: coding, categorizing, and developing themes. Results: Four distinct parental needs were identified: increased awareness about pediatric chronic pain, faster access to care, validation of their child’s pain, and healthcare supports throughout their journey. These themes interplayed throughout the data and shaped parents’ ability to access appropriate care and support for their child with chronic pain. Conclusion: Unique challenges prevent parents from accessing timely care for their child with chronic pain. Increasing awareness about pediatric chronic pain can help parents gain validation for their child’s pain and result in faster access to care. Our findings highlight how parents with a child with chronic pain would benefit from additional supports to help them navigate the healthcare system

Critical ethnography, cultural safety, and international nursing research

Critical qualitative methodology provides a strategy to examine the human experience and its relationship to power and truth. Cultural safety is a concept that has been applied to nursing education and practice and refers to interactions that acknowledge and respect the unique cultural background of patients. It recognizes power inequities between caregivers who belong to dominant cultures and patients who may belong to oppressed groups. Culture is interpreted from a critical constructivist perspective as a fluid relational process that is enacted contextually. The purpose of this paper is to examine the congruence between and among critical methodology, cultural safety, and the conduct of nursing research in low- and middle-income countries by nurses from high-income countries. It is argued that if cultural safety is important and relevant to education and practice, then it might be appropriate to address it in research endeavors

The Use of Videoconferencing as a Medium for the Qualitative Interview

Qualitative data collection, especially conducting in-person interviews, presents challenges for researchers whose participants are geographically dispersed. Often alternative means of interviewing using communication technology are necessary. This was true for this focused ethnographic research exploring the experiences of participants who were connected to a particular cultural group by virtue of their similar experience but who were not located in the same geographical area. The purpose of this paper is to present the experience of using videoconferencing technology to collect experiential data from undergraduate nursing students and preceptors who were dispersed over a 640,000 square kilometer area in western and northern Canada during a rural hospital-based preceptorship. Recommendations for using videoconferencing as a medium for conducting in-depth qualitative interviews include using a high-bandwidth connection such as SuperNet or Web conferencing, and evaluating whether the type of information sought is likely to be shared in other than in-person face-to-face situations

Verification Strategies for Establishing Reliability and Validity in Qualitative Research

The rejection of reliability and validity in qualitative inquiry in the 1980s has resulted in an interesting shift for “ensuring rigor” from the investigator's actions during the course of the research, to the reader or consumer of qualitative inquiry. The emphasis on strategies that are implemented during the research process has been replaced by strategies for evaluating trustworthiness and utility that are implemented once a study is completed. In this article, we argue that reliability and validity remain appropriate concepts for attaining rigor in qualitative research. We argue that qualitative researchers should reclaim responsibility for reliability and validity by implementing verification strategies integral and self-correcting during the conduct of inquiry itself. This ensures the attainment of rigor using strategies inherent within each qualitative design, and moves the responsibility for incorporating and maintaining reliability and validity from external reviewers' judgements to the investigators themselves. Finally, we make a plea for a return to terminology for ensuring rigor that is used by mainstream science

Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis

Aim. To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods. Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for transplant, transplant wait listed, medical contraindications for transplant, and low socioeconomic status. Review and discussion of local ACP videos, documents, and experiences with ACP occurred in two individual interviews and four focus groups. Data were analyzed using inductive content analysis including iterative processes of open coding, categorization, and abstraction. Results. Three overarching categories emerged: (1) lack of understanding about disease trajectories and ACP processes, (2) roles of alternate decision makers, and (3) preferences for receiving ACP information. Most patients desired advanced care-planning conversations before the onset of decompensation (specifically hepatic encephalopathy) with a care provider with whom they had a trusting, preexisting relationship. Involvement of the alternate decision makers was of critical importance to participants, as was the use of direct, easy to understand patient education tools that address practical issues. Conclusion. Our findings support the need for early advance care planning in the outpatient setting. Outpatient clinicians may play a key role in facilitating these discussions

The cirrhosis care Alberta (CCAB) protocol: implementing an evidence-based best practice order set for the management of liver cirrhosis - a hybrid type I effectiveness-implementation trial

Abstract Background Liver cirrhosis is a leading cause of morbidity, premature mortality and acute care utilization in patients with digestive disease. In the province of Alberta, hospital readmission rates for patients with cirrhosis are estimated at 44% at 90 days. For hospitalized patients, multiple care gaps exist, the most notable stemming from i) the lack of a structured approach to best practice care for cirrhosis complications, ii) the lack of a structured approach to broader health needs and iii) suboptimal preparation for transition of care into the community. Cirrhosis Care Alberta (CCAB) is a 4-year multi-component pragmatic trial which aims to address these gaps. The proposed intervention is initiated at the time of hospitalization through implementation of a clinical information system embedded electronic order set for delivering evidence-based best practices under real-world conditions. The overarching objective of the CCAB trial is to demonstrate effectiveness and implementation feasibility for use of the order set in routine patient care within eight hospital sites in Alberta. Methods A mixed methods hybrid type I effectiveness-implementation design will be used to evaluate the effectiveness of the order set intervention. The primary outcome is a reduction in 90-day cumulative length of stay. Implementation outcomes such as reach, adoption, fidelity and maintenance will also be evaluated alongside other patient and service outcomes such as readmission rates, quality of care and cost-effectiveness. This theory-based trial will be guided by Normalization Process Theory, Consolidated Framework on Implementation Research (CFIR) and the Reach-Effectiveness-Adoption-Implementation-Maintenance (RE-AIM) Framework. Discussion The CCAB project is unique in its breadth, both in the comprehensiveness of the multi-component order set and also for the breadth of its roll-out. Lessons learned will ultimately inform the feasibility and effectiveness of this approach in “real-world” conditions as well as adoption and adaptation of these best practices within the rest of Alberta, other provinces in Canada, and beyond. Trial registration ClinicalTrials.gov: NCT04149223, November 4, 2019