Exploring Ideas from Hospitality, Health Management, and Design for Senior Housing and Care: Insights from 2016 CIHF Senior Living Roundtable

The first Cornell Institute for Healthy Futures (CIHF) roundtable, held in April 2016, brought together senior-level executives, educators, and leaders in senior housing and care to share experiences and exchange ideas. CIHF roundtables are purposely limited to approximately 25 to 30 participants “at the table” to foster discussion on a more intimate basis than traditional conferences. In addition to the formal participants, students, faculty, and guests observed and interacted during the event and attended a separate panel discussion, and reception the evening before. Students, faculty, and industry leaders also met together at a working luncheon session to brainstorm ideas for recruiting and training young talent for careers in the senior housing and care industry.

The Lived Experience of People with Mental Health and Substance Misuse Problems: Dimensions of Belonging

Introduction: People with co-occurring mental health and substance misuse problems are among the most excluded in society. A need to feel connected to others has been articulated in the occupational science literature although the concept of belonging itself has not been extensively explored within this paradigm. This paper reports findings from research that explored the meaning and experience of belonging for four people living with dual diagnosis in the United Kingdom. Method: Researchers employed an interpretative phenomenological approach to the study. Four semi-structured interviews were carried out. The interviews were guided by questions around the meaning of belonging, barriers to belonging and how belonging and not belonging impacted on participants’ lives. Data analysis facilitated the identification of themes across individual accounts and enabled comparisons. Findings: Data analysis identified four themes – belonging in family, belonging in place, embodied understandings of belonging and barriers to belonging. Conclusion: The findings add further insights into the mutable nature of belonging. A link between sense of belonging and attachment theory has been proposed, along with a way to understand the changeable and dependent nature of belonging through ‘dimensions of belonging’.

Improving Patients’ Experience and Outcome of Total Joint Replacement: the RESTORE Programme

BACKGROUND: Total hip replacements (THRs) and total knee replacements (TKRs) are common elective procedures. In the REsearch STudies into the ORthopaedic Experience (RESTORE) programme, we explored the care and experiences of patients with osteoarthritis after being listed for THR and TKR up to the time when an optimal outcome should be expected. OBJECTIVE: To undertake a programme of research studies to work towards improving patient outcomes after THR and TKR. METHODS: We used methodologies appropriate to research questions: systematic reviews, qualitative studies, randomised controlled trials (RCTs), feasibility studies, cohort studies and a survey. Research was supported by patient and public involvement. RESULTS: Systematic review of longitudinal studies showed that moderate to severe long-term pain affects about 7–23% of patients after THR and 10–34% after TKR. In our cohort study, 10% of patients with hip replacement and 30% with knee replacement showed no clinically or statistically significant functional improvement. In our review of pain assessment few research studies used measures to capture the incidence, character and impact of long-term pain. Qualitative studies highlighted the importance of support by health and social professionals for patients at different stages of the joint replacement pathway. Our review of longitudinal studies suggested that patients with poorer psychological health, physical function or pain before surgery had poorer long-term outcomes and may benefit from pre-surgical interventions. However, uptake of a pre-operative pain management intervention was low. Although evidence relating to patient outcomes was limited, comorbidities are common and may lead to an increased risk of adverse events, suggesting the possible value of optimising pre-operative management. The evidence base on clinical effectiveness of pre-surgical interventions, occupational therapy and physiotherapy-based rehabilitation relied on small RCTs but suggested short-term benefit. Our feasibility studies showed that definitive trials of occupational therapy before surgery and post-discharge group-based physiotherapy exercise are feasible and acceptable to patients. Randomised trial results and systematic review suggest that patients with THR should receive local anaesthetic infiltration for the management of long-term pain, but in patients receiving TKR it may not provide additional benefit to femoral nerve block. From a NHS and Personal Social Services perspective, local anaesthetic infiltration was a cost-effective treatment in primary THR. In qualitative interviews, patients and health-care professionals recognised the importance of participating in the RCTs. To support future interventions and their evaluation, we conducted a study comparing outcome measures and analysed the RCTs as cohort studies. Analyses highlighted the importance of different methods in treating and assessing hip and knee osteoarthritis. There was an inverse association between radiographic severity of osteoarthritis and pain and function in patients waiting for TKR but no association in THR. Different pain characteristics predicted long-term pain in THR and TKR. Outcomes after joint replacement should be assessed with a patient-reported outcome and a functional test. CONCLUSIONS: The RESTORE programme provides important information to guide the development of interventions to improve long-term outcomes for patients with osteoarthritis receiving THR and TKR. Issues relating to their evaluation and the assessment of patient outcomes are highlighted. Potential interventions at key times in the patient pathway were identified and deserve further study, ultimately in the context of a complex intervention.

“Jag vet faktiskt inte varför ingen vill anställa någon som mig” : En studie om arbetslösas upplevda delaktighet i aktivitet.

Syftet med studien var att beskriva hur arbetslösa personer i tjänsten Stöd och matchning upplever delaktighet i aktivitet. Författaren använde kvalitativ metod med induktiv ansats. Datainsamlingen genomfördes genom intervjuer med bedömningsinstrumentet OCAIRS-S som grund. Fem deltagare rekryterades med bekvämlighetsurval på en mindre ort i Sverige. Författaren spelade in intervjuerna för att sedan transkribera och bearbeta dem genom en kvalitativ innehållsanalys med stöd av komponenter i ICF. Resultatet visade bland annat att deltagarna hade lätt att ge upp och saknade rutiner i sitt vardagsliv. Alla upplevde även att de klarar sig bra på sin inkomst och hade möjlighet att utföra alla aktiviteter de ville och behövde göra. De spenderade mycket tid ensamma och hade några få nära relationer. De flesta trivdes i arbetslösheten och alla såg positivt på framtiden. Ingen av dem letade aktivt efter möjligheter till arbete och de var inte heller initiativtagande. Slutsatserna som gjordes var att deltagarna saknar proaktivitet och motivation till att skaffa arbete. De skulle ha nytta av arbetsterapi för aktivitetsträning och/eller anpassning av aktiviteten ”att söka arbete”. Vidare forskning med större underlag behövs för en djupare förståelse.

Möjlighet till delaktighet i meningsfulla aktiviteter under sjukhusvistelse. : En beskrivning av barns egna upplevelser

Tidigare forskning inom detta område har fokuserat på barns vård, däremot har barns upplevelser utifrån ett aktivitetsperspektiv under sjukhusvistelse inte uppmärksammats. Författarnas uppfattning var att aktiviteter som erbjuds på barn- och ungdomskliniker oftast passar yngre barn och därför ansågs det relevant att tillfråga äldre barn om deras upplevelser av att kunna vara delaktiga i aktiviteter på sjukhus. Syftet var att beskriva barns upplevelser av möjlighet till delaktighet i meningsfulla aktiviteter under sjukhusvistelse. Kvalitativ metod användes med semi-strukturerade intervjuer. Ett bekvämlighetsurval användes och respondenterna var 12 barn i åldrarna 8-15 som befann sig på två barn- och ungdomskliniker i södra Sverige. Datamaterialet bearbetades med en kvalitativ innehållsanalys. Tolkningen av datamaterialet resulterade i det övergripande temat “Upplevelse av möjlighet till delaktighet i meningsfulla aktiviteter”. Resultatet delades in i tre kategorier; delaktighet, meningsfull aktivitet och aktiviteter på sjukhus. Slutsatsen var att barnen upplevde både möjligheter och begränsningar i att kunna vara delaktiga i aktiviteter under sin sjukhusvistelse. Majoriteten av barnen upplevde sig ha goda möjligheter till att kunna vara delaktiga i meningsfulla aktiviteter såsom att vistas på lekterapi, spela tv-spel och umgås med familj och vänner. 

Children with intellectual disabilities’ perceptions of their participation in activities in everyday life – a pilot study : A minor field study conducted in Ethiopia

Background: Children with disabilities living in low and middle income countries’ perceptions of participation are not shown in research. These perceptions are important for providing appropriate interventions. Aim: To describe how children aged 8-12 with an intellectual disability living in Ethiopia perceive their situation regarding participation in activities in everyday life. Method: A descriptive design with a quantitative approach was used. The sample was gathered using consecutive sampling. Fifteen structured interviews were conducted, using “Picture my participation,” an instrument under development. Analyses were made using SPSS Statistics and Microsoft Excel. Results: The children perceived that they participated in activities in everyday life. There was a broad variation in the activities the children prioritized as most important. On a group level, they were very involved in these activities. The majority did not experience any barriers to perform these activities. Conclusions: The perceptions of the majority of the children were that they were involved in daily activities. They did not experience any barriers to participation. The results should be read with caution and generalization is not possible, due to the sample characteristics and that the instrument is under development.

The perceived experience of supervision within the PACE trial

This study was set within the UK inter-professional multi-centre randomized controlled PACE trial of manual based therapy (White et al 2007). The aim of supervision within “the trial” was to maintain specificity, sustain retention, manage quality control and assurance, monitor competence in delivering therapy and enhance professional development. The rationale for the ancillary study was that the approach to supervision within the trial appeared to be different from the previous experience of supervision for many of the therapists (Clouder & Sellars 2004, Sellars 2004, Sweeney et al 2001). A review of the literature on supervision and reflective practice highlighted that there are many models, methods, approaches and factors that influence the effectiveness of supervision (Edwards et al 2005, van Ooijen 2000).

A rehabilitation intervention to promote physical recovery following intensive care: a detailed description of construct development, rationale and content together with proposed taxonomy to capture processes in a randomised controlled trial.

Background: increasing numbers of patients are surviving critical illness, but survival may be associated with a constellation of physical and psychological sequelae that can cause on going disability and reduced health-related quality of life. Limited evidence currently exists to guide the optimum structure, timing, and content of rehabilitation programmes. There is a need to both develop and evaluate interventions to support and expedite recovery during the post-ICU discharge period. This paper describes the construct development for a complex rehabilitation intervention intended to promote physical recovery following critical illness. The intervention is currently being evaluated in a randomised trial (ISRCTN09412438; funder Chief Scientists Office, Scotland). Methods: the intervention was developed using the Medical Research Council (MRC) framework for developing complex healthcare interventions. We ensured representation from a wide variety of stakeholders including content experts from multiple specialties, methodologists, and patient representation. The intervention construct was initially based on literature review, local observational and audit work, qualitative studies with ICU survivors, and brainstorming activities. Iterative refinement was aided by the publication of a National Institute for Health and Care Excellence guideline (No. 83), publicly available patient stories (Healthtalkonline), a stakeholder event in collaboration with the James Lind Alliance, and local piloting. Modelling and further work involved a feasibility trial and development of a novel generic rehabilitation assistant (GRA) role. Several rounds of external peer review during successive funding applications also contributed to development. Results: the final construct for the complex intervention involved a dedicated GRA trained to pre-defined competencies across multiple rehabilitation domains (physiotherapy, dietetics, occupational therapy, and speech/language therapy), with specific training in post-critical illness issues. The intervention was from ICU discharge to 3 months post-discharge, including inpatient and post-hospital discharge elements. Clear strategies to provide information to patients/families were included. A detailed taxonomy was developed to define and describe the processes undertaken, and capture them during the trial. The detailed process measure description, together with a range of patient, health service, and economic outcomes were successfully mapped on to the modified CONSORT recommendations for reporting non-pharmacologic trial interventions. Conclusions: the MRC complex intervention framework was an effective guide to developing a novel post-ICU rehabilitation intervention. Combining a clearly defined new healthcare role with a detailed taxonomy of process and activity enabled the intervention to be clearly described for the purpose of trial delivery and reporting. These data will be useful when interpreting the results of the randomised trial, will increase internal and external trial validity, and help others implement the intervention if the intervention proves clinically and cost effective.

The influence of environmental distraction on cognitive abilities in ADL performance after frontal brain injured.

Background: Previous studies have reported errors in Activities of Daily Living (ADL) under the presence of distracting objects in dementia and brain injury patients. However, little is known about which distractor-target objects relation might be more harmful for performance. Method: We compared the ADL execution in frontal brain injured patients and control participants under two conditions: One in which target objects were mixed with distractor objects that constituted an alternative semantically related but non-required task (contextual condition) and another in which target objects were mixed with related but isolated distractors that did not constituted a coherent task (non-contextual condition). We separately analyzed ADL commission errors (repetitions, substitutions, objects manipulations, failures in sequence, extra actions) and omissions. In addition, the participants were evaluated with a neuropsychological protocol including a very specific executive functions task (Selective attention, Stimulus-Stimulus and Stimulus-Response conflict). Results: We found that frontal patients produced more commission errors compared to control participants, but only under the contextual condition. No between groups significant differences were found in omissions in both conditions or commission errors in non-contextual conditions. Scores in the Stimulus-Response conflict was significantly correlated with commission errors in the contextual condition. Conclusion: The presence of different non-target objects in ADL performance could require different cognitive process. Contextual ADL conditions required a higher level of executive functions, especially at the level of response (Stimulus-Response conflict). Application to Practice: Occupational therapists should control the presence of objects related to the target task according to the intervention objectives with the patients.

School belongingness and mental health functioning across the primary-secondary transition in a mainstream sample: Multi-group cross-lagged analyses

The relationship between school belongingness and mental health functioning before and after the primary-secondary school transition has not been previously investigated in students with and without disabilities. This study used a prospective longitudinal design to test the bi-directional relationships between these constructs, by surveying 266 students with and without disabilities and their parents, 6-months before and after the transition to secondary school. Cross-lagged multi-group analyses found student perception of belongingness in the final year of primary school to contribute to change in their mental health functioning a year later. The beneficial longitudinal effects of school belongingness on subsequent mental health functioning were evident in all student subgroups; even after accounting for prior mental health scores and the cross-time stability in mental health functioning and school belongingness scores. Findings of the current study substantiate the role of school contextual influences on early adolescent mental health functioning. They highlight the importance for primary and secondary schools to assess students' school belongingness and mental health functioning and transfer these records as part of the transition process, so that appropriate scaffolds are in place to support those in need. Longer term longitudinal studies are needed to increase the understanding of the temporal sequencing between school belongingness and mental health functioning of all mainstream students.

The impact of personal background and school contextual factors on academic competence and mental health functioning across the primary-secondary school transition

Students negotiate the transition to secondary school in different ways. While some thrive on the opportunity, others are challenged. A prospective longitudinal design was used to determine the contribution of personal background and school contextual factors on academic competence (AC) and mental health functioning (MHF) of 266 students, 6-months before and after the transition to secondary school. Data from 197 typically developing students and 69 students with a disability were analysed using hierarchical linear regression modelling. Both in primary and secondary school, students with a disability and from socially disadvantaged backgrounds gained poorer scores for AC and MHF than their typically developing and more affluent counterparts. Students who attended independent and mid-range sized primary schools had the highest concurrent AC. Those from independent primary schools had the lowest MHF. The primary school organisational model significantly influenced post-transition AC scores; with students from Kindergarten--Year 7 schools reporting the lowest scores, while those from the Kindergarten--Year 12 structure without middle school having the highest scores. Attending a school which used the Kindergarten--Year 12 with middle school structure was associated with a reduction in AC scores across the transition. Personal background factors accounted for the majority of the variability in post-transition AC and MHF. The contribution of school contextual factors was relatively minor. There is a potential opportunity for schools to provide support to disadvantaged students before the transition to secondary school, as they continue to be at a disadvantage after the transition.

Reflections on using a community-based and multisystem approach to transforming school-based intervention for children with developmental motor disorders

Evidence-based management of Developmental Coordination Disorder (DCD) in school-age children requires putting into practice the best and most current research findings, including evidence that early identification, self-management, prevention of secondary disability, and enhanced participation are the most appropriate foci of school-based occupational therapy. Partnering for Change (P4C) is a new school-based intervention based upon these principles that has been developed and evaluated in Ontario, Canada over an 8-year period. Our experience to date indicates that its implementation in schools is highly complex with involvement of multiple stakeholders across health and education sectors. In this paper, we describe and reflect upon our team’s experience in using community-based participatory action research, knowledge translation, and implementation science to transform evidence-informed practice with children who have DCD.

The Provisional Paediatric Rheumatology International Trials Organisation/American College of Rheumatology/European League Against Rheumatism disease activity core set for the evaluation of response to therapy in juvenile dermatomyositis: A prospective validation study

Objective. To validate a core set of outcome measures for the evaluation of response to treatment in patients with juvenile dermatomyositis (DM). Methods. In 2001, a preliminary consensus-derived core set for evaluating response to therapy in juvenile DM was established. In the present study, the core set was validated through an evidence-based, large-scale data collection that led to the enrollment of 294 patients from 36 countries. Consecutive patients with active disease were assessed at baseline and after 6 months. The validation procedures included assessment of feasibility, responsiveness, discriminant and construct ability, concordce in the evaluation of response to therapy between physicians and parents, redundancy, internal consistency, and ability to predict a therapeutic response. Results. The following clinical measures were found to be feasible, and to have good construct validity, discriminative ability, and internal consistency; furthermore, they were not redundant, proved responsive to clinically important changes in disease activity, and were associated strongly with treatment outcome and thus were included in the final core set: 1) physician`s global assessment of disease activity, 2) muscle strength, 3) global disease activity measure, 4) parent`s global assessment of patient`s well-being, 5) functional ability, and 6) health-related quality of life. Conclusion. The members of the Paediatric Rheumatology International Trials Organisation, with the endorsement of the American College of Rheumatology and the European Leauge Against Rheumatism, propose a core set of criteria for the evaluation of response of therapy that is scientifically and clinically relevant and statistically validated. The core set will help standardize the conduct and reporting of clinical trials and assist practitioners in deciding whether a child with juvenile DM has responded adequately to therapy.