Women’s preferences for and experiences with prenatal genetic testing decision making: Sociodemographic disparities in preference-concordant decision making

Objective

To investigate women’s preferred approach to prenatal genetic testing decision making and assess concordance between preference and experience.

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.     

Supporting community participation in a pandemic

The invariable governmental approach to the impact of the COVID-19 pandemic has been to effect the White Knight stance of Don Quixote, defending the population from the “Virus Dragon” and dedicating its knight-errantry to the damsel Dulcinea. Though essential, new therapeutics, vaccines, physical distancing, rigorous hygiene standards and efficient health systems are not sufficient to counter the effects of the virus. Individual compliance to public health guidelines also matters, while remaining similarly insufficient to diminish the threat. Earthier, citizen-led, community participation strategies, however, lead to innovative, tailored solutions that better fulfil the needs of diverse neighbourhoods and assures greater virus resistance and increase in population health compared to a top-down, knightly approach or isolated individual efforts. The challenge of COVID-19 offers communities a moment to build more resilient, antifragile communities that not only survive the current crisis, but that thrive after it, and that are better equipped for the next challenge. This is not the time for the singular heroics of the White Knight, or the antics of Don Quixote, tilting at windmills. It is the time of Sancho Panza, which is to say of regular non-credentialed citizens, and their collective efforts, who up to now have largely been considered pawns in this contest. Asset-based community development (ABCD) rejects both the individual as an island and the institutional, knightly emphasis on assessing needs and deficits within communities. It favours identifying and mobilising available and latent assets within a community to forge closer connections among all people, the better to collectivise problem-solving efforts. Community-driven initiatives are assisted in this by localised not-for-profit agencies that practice subsidiarity.     

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.