AbstractRational, aims, and objectivesUnderstanding of barriers and successes associated with the implementation of electronic patient self‐reported measures (ePSRMs) within clinical settings are limited and have not been pursued utilizing implementation science frameworks. This qualitative study is designed to assess staff perceptions of an ePSRM implementation.MethodsThe study took place in an academic hospital's Consultation Liaison Psychiatry practice. Qualitative interviews were conducted with the staff and clinicians from the practice. Participants were directly involved with the implementation and use of the ePSRM system within the Psychiatry practice. Interviews were structured around the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE‐AIM) framework.ResultsParticipants reported increased patient engagement as well as efficiency and time savings. The intervention was perceived to be more challenging for older patients. Facilitators include communicating the ePSRM to patients prior to the care visit, having enough trained staff or super‐users who can assist with technical problems, and having a shorter questionnaire.ConclusionsOverall, assessment of the ePSRM implementation was positive. Staff and clinicians indicated benefits in time, effectiveness, and improvements in patient treatment. Results indicate that defining how the system would fit within the clinical workflow was key, as was a flexible and user‐friendly technology platform. The ePSRM implementation was dependent upon clinical involvement and interest in adoption, while barriers were associated with technical challenges as well as some patient difficulties, such as cognitive impairment. The use of the RE‐AIM framework is valuable as it allows for systematic assessment of the implementation and identifies areas in that implementation has succeeded or is lacking.
Health Care Professionals' Perspectives on Teleneonatology Through the Lens of Normalization Process Theory
AbstractBackground and aimsLittle research has been done on tele‐intensive care unit (ICU) implementation across different types of ICUs, and there exist few studies that have used qualitative research methods to analyze the human and organizational factors influencing optimization of telemedicine for newborn resuscitation. The objective of this study was to understand health care professionals' acceptance, utilization, and integration of video telemedicine for newborn resuscitation (termed teleneonatology) in community hospital settings.MethodsFocus group and individual interviews were conducted with 49 health care professionals at six affiliated health system hospitals. Data were gathered from physicians (n = 18), nurses (n = 30), and a nurse practitioner. Data were inductively analyzed using a thematic approach, and then constructs from normalization process theory (NPT) were deductively applied. NPT rendered a general framework to describe and assess how care teams perceive the implementation of teleneonatology and how they interact with this telemedicine service in their local setting.ResultsLocal health care professionals accepted teleneonatology as an important, helpful service, yet its implementation was perceived as both valuable and a threat to professional traditions. Utilization may depend on perceived benefit, mutual understanding of the guidelines, and expectations of use, and other relational, human, contextual, and system factors. Participants in this study agreed on the need for collective work to successfully integrate teleneonatology into the local practice.DiscussionsNPT uncovered that successful implementation of a teleneonatology program may be facilitated by strong interpersonal relationships among care teams, continuous programmatic training and education, and communicating the clinical value of teleneonatology, including its opportunities and benefits.
Conceptualising paediatric health disparities: a metanarrative systematic review and unified conceptual framework
Objective There exists a paucity of work in the development and testing of theoretical models specific to childhood health disparities even though they have been linked to the prevalence of adult health disparities including high rates of chronic disease. We conducted a systematic review and thematic analysis of existing models of health disparities specific to children to inform development of a unified conceptual framework. Methods We systematically reviewed articles reporting theoretical or explanatory models of disparities on a range of outcomes related to child health. We searched Ovid Medline In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid Embase, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus (database inception to 9 July 2015). A metanarrative approach guided the analysis process. Results A total of 48 studies presenting 48 models were included. This systematic review found multiple models but no consensus on one approach. However, we did discover a fair amount of overlap, such that the 48 models reviewed converged into the unified conceptual framework. The majority of models included factors in three domains: individual characteristics and behaviours (88%), healthcare providers and systems (63%), and environment/community (56%), . Only 38% of models included factors in the health and public policies domain. Conclusions A disease-agnostic unified conceptual framework may inform integration of existing knowledge of child health disparities and guide future research. This multilevel framework can focus attention among clinical, basic and social science research on the relationships between policy, social factors, health systems and the physical environment that impact children's health outcomes.
Home enteral nutrition: Use of photo‐elicitation to capture patient and caregiver experiences
AbstractBackgroundDespite the importance of home enteral nutrition (HEN), there is a lack of understanding within the medical and general community of how HEN impacts the lives of patients and caregivers. Using a theoretical orientation that attends to the materiality of both everyday and medical objects, we explored patients' and family caregivers' everyday experiences of administering feeds during HEN.MethodsUsing the photo‐elicitation interviewing method, patients on HEN and their family caregivers were asked to take up to 10 photographs to portray material items and activities that they considered foundational to HEN. They subsequently narrated their experiences and the participant‐generated photographs in an interview. Participant‐generated photographs (126) and accompanying narratives were analyzed using layered analysis, and results were theorized with attention to both social and material significance of HEN.ResultsPatients and caregivers detailed overcoming misconceptions of HEN, and through their use of photographs, they conveyed their expertise in developing their own HEN feeding systems and practices, that used both the material artifacts provided by the hospital (the tube, syringe, and formula) as well as everyday material items found in the patient's home. More than this, photographs and patient narratives depicted intimate involvement of patients' families in tube feeding. This yielded a more comprehensive understanding of the material and experiential realities of HEN.ConclusionHome enteral nutrition was found to be a shared familial experience, that in addition to requiring medical equipment also incorporated ordinary material artifacts within the social setting of the home and family life. To more accurately convey the material, experiential, and social realities of HEN to future patients, our findings underscore the importance of drawing on both visual and textual forms of patient‐produced information in the development of HEN patient educational materials.
“Ultimately, mom has the call”: Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy
AbstractObjectiveThis study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients’ clinical trial (CT) participation. The study also offers unique insights into howFMs view patients’ decision making.MethodsIn‐depth interviews were conducted with 33 patients with ovarian cancer who had been offered aCTand 39FMs. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy (RA).ResultsPatients’ relationships, experiences and social status were significant resources that shaped their decisions. Patients did not give equal weight to all relationships and created boundaries around whom to include in decision making. Doctors’ recommendations and perceived enthusiasm were described as influential inCTdecisions. Both patients with ovarian cancer and theirFMs maintained that patients have the “final say,” indicating an individualistic autonomy. However, maintaining the “final say” in the decision‐making process is constitutive of patients’ relationships, emphasizing a relational approach to autonomy.FMs support patients’ autonomy and they do so particularly when they believe the patient is capable of making the right choices.ConclusionsAlthough ethical principles underlying informed consent forCTparticipation emphasize individual autonomy, greater attention to relational autonomy is warranted for a more comprehensive understanding ofCTdecision making.
A Mixed-Methods Study on the Barriers and Facilitators of Telemedicine for Newborn Resuscitation
Background: Teleneonatology may improve the quality of high-risk newborn resuscitations performed by general providers in community settings. Variables that affect teleneonatology utilization have not been identified. Introduction: The objective of our mixed-methods study was to understand the barriers and facilitators experienced by local care providers who receive teleneonatology services. Materials and Methods: In October 2015, an electronic survey was sent to 349 teleneonatology participants at 6 community hospitals to assess user satisfaction, technology usability and acceptability, and impact on patient care. From December 2015 to June 2016, 49 participants were involved in focus groups and individual interviews to better understand barriers and facilitators of teleneonatology implementation. Qualitative data were analyzed using a thematic approach. Results: Survey response rate was 31.8% ( N = 111). Of 93 survey respondents, 88 (94.6%) agreed that teleneonatology was needed at their hospitals, and of 52 participants, 50 (96.2%) believed that teleneonatology consults were helpful. We identified multiple facilitators and barriers to program implementation in education and training, process and work flow, communication, and technology. Discussion: Local care teams believed that teleneonatology was valuable for connection to a remote neonatologist. Successful program implementation may be facilitated by communicating the value of teleneonatology, engaging local stakeholders in program training and education, maintaining supportive professional relationships, and designing simple, highly reliable clinical work flows. Conclusions: Teleneonatology is viewed as an innovative, valuable service by local care teams. The identified barriers and facilitators to program use should be considered when implementing a teleneonatology program.
Building a Healthy Body After Cancer: Young Adult Lymphoma Survivors' Perspectives on Exercise After Cancer Treatment
“Like No One Is Listening to Me”: A Qualitative Study of Patient–Provider Discordance Between Global Assessments of Disease Activity in Rheumatoid Arthritis
ObjectiveTo explore the perspectives and experiences of patients with rheumatoid arthritis (RA) whose assessments of their disease differ from those of their rheumatology care provider.MethodsA total of 20 adult RA patients with patient‐provider discordance at their most recent rheumatology appointment (within 4 weeks) were recruited. Discordance was defined by an absolute difference of 25 or more between patient and provider global assessments on a visual analog scale (VAS) of disease activity. For descriptive purposes, participants completed the Health Assessment Questionnaire II, pain VAS, and Patient Health Questionnaire 9 depression scale. Interviews were conducted in person and individually with each patient with a semistructured interview guide. Topics ranged widely, including participants’ perspectives and experiences with living with RA, clinical disease assessments, patient‐provider communication, and psychosocial or other needs. Data from the interviews were analyzed using interpretive phenomenological analysis.ResultsSix major themes emerged from the patient interviews describing patient‐provider discordance and disease assessment: being misunderstood by others, limitations of provider assessments, discrepancy with provider findings, inadequate active listening on the part of health care providers, unmet psychosocial needs, and lack of patient empowerment.ConclusionPatients described discordance in terms of symptom assessment and understanding how RA affects everyday life. Typical clinical assessments did not capture their experience. The resulting conceptual framework should inform future interventional studies seeking to enhance concordance of patient‐physician communication and to optimize satisfaction with care and health‐related quality‐of‐life outcomes for patients with RA.
Building a healthy body after cancer: Results of a focus group with young adult survivors to inform an intervention for exercise after treatment.
164 Background: Adolescent and young adult (AYA) cancer survivors have distinctive and often unmet needs, may lead long lives after treatment, and are a population for whom targeted health supports are limited. Exercise in particular has become increasingly recognized as a vital part of cancer survivors’ health needs, yet, little is known about what interventions would be most appropriate for this population. This ongoing study reports early data on barriers and facilitators to exercise in AYA lymphoma survivors. Methods: We conducted a focus group with five young adult lymphoma survivors. Participants completed questionnaires to assess quality of life, exercise habits, and knowledge about evidence for exercise after cancer treatment. Charts were abstracted for demographic and treatment-related details. The focus group was audio recorded and transcribed. Data is being analyzed thematically to generate applied findings and identify areas for action. Results: Participants were 24-35 years old, 60% male, and an average of 2.97 years from the time of diagnosis. All reported some form of physical activity, with 80% active and 20% moderately active. Preliminary analysis identified fatigue, weight gain, and lack of time as barriers to exercise. Participants identified fatigue particularly in the early survivorship period, and discussed the issue of non-cancer survivor peers not relating with or recognizing fatigue after treatment. 100% of participants reported that someone from their doctor’s office had talked with them about exercise, but indicated during the focus group that this recommendation did not motivate them to exercise. Other themes revolve around the relationship between healthy diet and physical activity. In terms of an intervention, survivors were interested in activity trackers and fitness apps, exercise variety, and fitness groups targeted specifically for AYA survivors. Conclusions: Fatigue, weight gain, and time are barriers to exercise for AYA survivors. Interventions that incorporate fitness tracking technology, provide variety, and/or include other AYA survivors may be successful in this unique population.
Community Stakeholders’ Perceptions of the Role of Family in HIV Prevention in Iringa, Tanzania