What is important to patients in palliative care? A scoping review of the patient’s perspective

Background: The research conducted in palliative care is often medically oriented. There are few studies clarifying the patient’s preferences, priorities and desires in palliative care. The occupational therapy research conducted mostly concerns occupational therapy interventions based on the profession’s experiences. Further knowledge is needed regarding what patients in palliative care want to prioritize.

Aim: The aim was to describe what patients in palliative care describe as important at the end of life.

Methods: A scoping review was conducted using the inclusion criteria: articles published in 2004-August 2015; written in English; participants?>18 years with life-threatening illness without possible cure; focusing on the patient’s experience.

Results: Seventeen articles were included in the review and they were based on interviews. The theme ‘Continuing occupational participation is important for people at the end of life’ was identified. This included five sub-themes: maintaining previous occupational patterns; feeling needed; being involved in the social environment; leaving a legacy; and living as long as you live.

Conclusions: The results show that continued occupational participation is important for people in palliative care. Occupational therapists can contribute to this by taking a highly person-centered approach and gaining information about what matters most for their clients.     

Evaluación participativa del territorio con enfoque de equidad: adaptación y validación de la Place Standard al contexto español

ObjectiveTranslation and cross-cultural adaptation to the Spanish context of the Place Standard tool to undertake participatory evaluations in place-based communities.MethodA back-translation method was used to obtain an adapted version of the original Place Standard tool. The translated version was reviewed by a multidisciplinary committee of experts and validated using the Delphi method.ResultsThe final version of the adapted Place Standards tool (Entornos de Vida in Spanish) consists of 14 dimensions and 99 items. 21% of the items presented semantic difficulties during the translation. Total consensus through the Delphi panel was reached on 72% of the items. The analysis resulted in changes to the wording, and organization of the items, and the inclusion of new or modified questions to reflect the characteristics of the Spanish context.ConclusionsThe validation of the Entornos de Vida tool will enable the evaluation of place-based communities characteristics/physical and socio-economic contexts in a participatory and equitable manner that focuses on social determinants of health. Its application in scenarios that take into account processes of local health action will support the practice of health promotion and equity, and centre the attention and action on the physical and socio-economic contexts with the aim to learn how places and municipal policies can affect health and well-being.     

Measurement challenges in shared decision making: putting the ‘patient’ in patient‐reported measures

Measuring clinicians' shared decision‐making (SDM) performance is a key requirement given the intensity of policy interest in many developed countries – yet it remains one of the most difficult methodological challenges, which is a concern for many stakeholders. In this Viewpoint Article, we investigate the development of existing patient‐reported measures (PRMs) of SDM identified in a recent review. We find that patients were involved in the development of only four of the 13 measures. This lack of patient involvement in PRM development is associated with two major threats to content validity, common to all 13 PRMs of SDM: (i) an assumption of patient awareness of ‘decision points’ and (ii) an assumption that there is only one decision point in each healthcare consultation. We provide detailed examples of these threats and their impact on accurate assessment of SDM processes and outcomes, which may hamper efforts to introduce incentives for SDM implementation. We propose cognitive interviewing as a recommended method of involving patients in the design of PRMs in the field of SDM and provide a practical example of this approach.     

Accessibilité, politiques inclusives et droit à l’éducation : considérations conceptuelles et méthodologiques

The right to education promoted by the United Nations’ Convention on the Rights of Disabled Persons aims at fighting against discriminations persons with disabilities face in this matter. Identifying existing discriminations require however reliable data allowing for analyzing education systems’ ability to provide Special Educational Needs students with equal opportunities in terms of access, success, prospects and affiliation. This article describes the conceptual framework developed to identify indicators required to monitor the implementation of right to education in the European Union building upon an OECD research made on the transition to higher education and to employment of SEN students.     

Retirement and health: Evidence from England

This paper utilizes census records, inpatient records, comprehensive surveys, and mortality records from England to trace out the effect of reaching retirement age on retirement status and health outcomes. Applying a regression discontinuity design leveraging the pension age, I find that retirement substantially improves well-being and reported health. I find no immediate effect of retirement on behavioral outcomes and no evidence of changes to cognitive ability, utilization, or mortality. While prior literature has considered the effects of retirement on specific outcomes, this paper systematically examines the full range of health-related outcomes with administrative and survey data in a unified context.     

How clerks understand the requests of people living with aphasia in service encounters

ABSTRACT

Aphasia often restricts participation. People living with aphasia (PLWA) engage in fewer activities, which leads to fewer interactions than before aphasia. Analyses of interactions with non-familiar people in activities of daily life could provide knowledge about how to integrate these situations in rehabilitation and facilitate ongoing PLWA participation post-rehabilitation. This qualitative study is the first to examine how PLWA make their requests understood in service encounters despite aphasia. Six people living with moderate or severe aphasia were video-recorded in situations of service encounters, e.g., pharmacies, specialised shops, restaurants, and others. We identified fifty-nine occurrences with one or several difficulties in the formulation of the request. They were examined, including the clerks’ responses and ensuing interaction using multimodal conversation analysis. Results showed that PLWA used nonverbal communication within the physical environment and the context of the interaction to support verbal production. In the majority of situations, the clerks understood the request promptly. In other situations, they both collaborated to achieve a clear understanding of the request. Moreover, the findings attest to the competence of people living with moderate or severe aphasia in engaging in service encounters and add to the knowledge base about interaction and social participation in aphasia.