experience measure
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2022 ◽  
Author(s):  
Emily Banwell ◽  
Terry Hanley ◽  
Santiago De Ossorno Garcia ◽  
Charlotte Mindel ◽  
Thomas Kayll ◽  
...  

BACKGROUND Young people are increasingly going online to seek out web-based support for their mental health and wellbeing. Peer support forums are popular with this age group, with young individuals valuing the fact that they are available 24/7, providing a safe and anonymous space for exploration. Currently, little systematic evaluation of the helpfulness of such groups in providing support has been conducted. OBJECTIVE This study examines the helpfulness of the support offered within web-based peer support forums for young people. It specifically investigates the self-reported user-ratings of helpfulness reported through the completion of a developing experience measure. The ratings are used to consider the further development of the measure and to reflect upon the overall helpfulness of the forums as indicated by the reported scores. METHODS The study makes use of routinely collected practice-based outcome data from online mental health forums for young people. These forums are hosted by the UK based web-based therapy and support service, Kooth.com. A cross-sectional design has been employed to explore the outcomes that have been reported by those accessing the forums using a Peer Online Community Experience Measure (POCEM). To consider the helpfulness in general, a total of 23,443 completed POCEMs from the 2020 calendar year were used. A second dataset of 17,137 completed POCEMs from the same year was used to consider whether other indicators, such as the time of day of the post, had an impact upon the helpfulness rating. RESULTS Female users between the ages of 11 and 16 predominantly completed the POCEM. This is in keeping with the majority of those using the service. 74.6% of the scores on the POCEM indicated the individuals found the posts helpful, and there was some indication that males were more likely to report obtaining intrapersonal support, whilst females obtained interpersonal support. Further, the POCEM scores reflected the internal consistency of the measure and provided an insight into the way that young people made use of the peer support resource. For instance, posts were rated more helpful if individuals spent a longer time reading them, and the topics discussed changed throughout the day with more mental health issues being discussed later at night. CONCLUSIONS The results appear to demonstrate that overall, the young people involved in this study found web-based peer support helpful. They indicate that that peer support can provide an important strand of care within a supportive mental health ecosystem, particularly during time periods when in-person support is typically closed. However, caution is needed when interpreting the results of this study. Whilst such services are incredibly well used, they have received little research attention to date. As such, further investigation into what constitutes helpful and unhelpful peer support is needed.


Author(s):  
Kelly Lambert ◽  
Jordan Stanford

Understanding how patients perceive their health and the experience with the dietitian is fundamental to providing patient-centred care. The types of patient reported measures (PRMs) used by outpatient dietitians is unclear. Guidance about use of PRMs for dietitians is also lacking. The aim of this systematic review was to synthesise evidence regarding the use of PRMs by dietitians in the outpatient setting and evaluate the methodological quality of studies evaluating the psychometric properties of PRMs. Eight databases were searched systematically for studies of dietitians working in the outpatient setting and administering a PRM. Forty-four studies were evaluated and described 58 different PRMs. These included direct nutrition related (n = 12 studies), clinical (n = 21 studies), and health-related quality of life PRMs (n = 24 studies); 1 study documented use of a patient-reported experience measure. A large range of PRMs are used by outpatient dietitians. Of the most common PRMs, the majority are administered in similar populations to the original validation study. Dietitians should use a combination of 3 PRMs: a generic health-related quality of life tool, an experience measure, and at least 1 clinical or direct nutrition-related measure. This will enable dietitians to fully capture the impact of their care on patients.


Author(s):  
Charlotte Mindel ◽  
Lily Mainstone-Cotton ◽  
Santiago de Ossorno Garcia ◽  
Aaron Sefi ◽  
Georgia Sugarman ◽  
...  

Online digital mental health communities can contribute to users’ mental health positively and negatively. Yet the measurement of outcomes and impact relating to digital mental health communities is difficult to capture. In this paper we demonstrate the development of an online experience measure for a specific children and young people’s community inside a digital mental health service. The development is informed by three phases: (i) item reduction through Estimate-Talk-Estimate modified Delphi methods, (ii) user testing with participatory action research and (iii) a pilot within the digital service community to explore its use. Rounds of experts talks help to reduce the items. User experience workshops helped to inform the usability and appearance, wording, and purpose of the measure. Finally, the pilot results highlight completion rates, difference in scores for age and community roles and a preference to ‘relate to others’; as a mechanism of support. Outcomes frequently selected in the measure show the importance of certain aspects of the community, such as safety, connection, and non-judgment previously highlighted in the literature. Self-reported helpfulness scales like this one could be used as indicators of meaningful engagement within the community and its content but further research is required to ascertain its acceptability and validity. Phased approaches involving stakeholders and participatory action research enhances the development of digitally enabled measurement tools.


PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0261865
Author(s):  
Linda J. Resnik ◽  
Mathew L. Borgia ◽  
Melissa A. Clark ◽  
Emily Graczyk ◽  
Jacob Segil ◽  
...  

Recent advances in upper limb prosthetics include sensory restoration techniques and osseointegration technology that introduce additional risks, higher costs, and longer periods of rehabilitation. To inform regulatory and clinical decision making, validated patient reported outcome measures are required to understand the relative benefits of these interventions. The Patient Experience Measure (PEM) was developed to quantify psychosocial outcomes for research studies on sensory-enabled upper limb prostheses. While the PEM was responsive to changes in prosthesis experience in prior studies, its psychometric properties had not been assessed. Here, the PEM was examined for structural validity and reliability across a large sample of people with upper limb loss (n = 677). The PEM was modified and tested in three phases: initial refinement and cognitive testing, pilot testing, and field testing. Exploratory factor analysis (EFA) was used to discover the underlying factor structure of the PEM items and confirmatory factor analysis (CFA) verified the structure. Rasch partial credit modeling evaluated monotonicity, fit, and magnitude of differential item functioning by age, sex, and prosthesis use for all scales. EFA resulted in a seven-factor solution that was reduced to the following six scales after CFA: social interaction, self-efficacy, embodiment, intuitiveness, wellbeing, and self-consciousness. After removal of two items during Rasch analyses, the overall model fit was acceptable (CFI = 0.973, TLI = 0.979, RMSEA = 0.038). The social interaction, self-efficacy and embodiment scales had strong person reliability (0.81, 0.80 and 0.77), Cronbach’s alpha (0.90, 0.80 and 0.71), and intraclass correlation coefficients (0.82, 0.85 and 0.74), respectively. The large sample size and use of contemporary measurement methods enabled identification of unidimensional constructs, differential item functioning by participant characteristics, and the rank ordering of the difficulty of each item in the scales. The PEM enables quantification of critical psychosocial impacts of advanced prosthetic technologies and provides a rigorous foundation for future studies of clinical and prosthetic interventions.


2021 ◽  
Vol 8 (1) ◽  
pp. e000653
Author(s):  
Laura J Neilson ◽  
Linda Sharp ◽  
Joanne M Patterson ◽  
Christian von Wagner ◽  
Paul Hewitson ◽  
...  

ObjectivesMeasuring patient experience of gastrointestinal (GI) procedures is a key component of evaluation of quality of care. Current measures of patient experience within GI endoscopy are largely clinician derived and measured; however, these do not fully represent the experiences of patients themselves. It is important to measure the entirety of experience and not just experience directly during the procedure. We aimed to develop a patient-reported experience measure (PREM) for GI procedures.DesignPhase 1: semi-structured interviews were conducted in patients who had recently undergone GI endoscopy or CT colonography (CTC) (included as a comparator). Thematic analysis identified the aspects of experience important to patients. Phase 2: a question bank was developed from phase 1 findings, and iteratively refined through rounds of cognitive interviews with patients who had undergone GI procedures, resulting in a pilot PREM. Phase 3: patients who had attended for GI endoscopy or CTC were invited to complete the PREM. Psychometric properties were investigated. Phase 4 involved item reduction and refinement.ResultsPhase 1: interviews with 35 patients identified six overarching themes: anxiety, expectations, information & communication, embarrassment & dignity, choice & control and comfort. Phase 2: cognitive interviews refined questionnaire items and response options. Phase 3: the PREM was distributed to 1650 patients with 799 completing (48%). Psychometric properties were found to be robust. Phase 4: final questionnaire refined including 54 questions assessing patient experience across five temporal procedural stages.ConclusionThis manuscript gives an overview of the development and validation of the Newcastle ENDOPREM™, which assesses all aspects of the GI procedure experience from the patient perspective. It may be used to measure patient experience in clinical care and, in research, to compare patients’ experiences of different endoscopic interventions.


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