Physicians’ perceptions on Quality of Life of persons with profound intellectual and multiple disabilities: A qualitative study

Abstract

Background: Quality of Life (QoL) may be a factor in physicians' decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. Method: We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD, thematically analysed them and identified clusters of related elements of QoL. Results: Emotional, physical and relational clusters of elements were found. Physicians named mainly emotional elements to describe good QoL, physical elements to describe poor QoL and they emphasised the role of relational context on QoL. In addition, they mentioned a balance between good and poor elements as good QoL. Physical decline, bad prognosis and increasing problems in the relational context influenced QoL in a negative way. Conclusions: The influence of the relational context on both good and poor QoL needs more investigation because of its consequences for ethical decision-making.

The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study

“…In describing good and poor QoL, we found the same elements as we found in previous research on the perception of physicians on QoL of persons with PIMD (Nieuwenhuijse et al 2019). Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things.…”

“…In the analysis process, we used both deductive and inductive coding. We used a coding tree that was composed in previous research on QoL of persons with PIMD (deductive coding), and added new codes that were derived from the data (inductive coding) (Nieuwenhuijse et al 2019 ). First, the first author AMN coded all the interviews and constructed a coding tree based on both the deductive and inductive coding.…”

“…has been a subject of academic interest since the beginning of this century (Cummins 2005, Schalock 2004, Schalock et al 2002, 2008. In accordance with Verdugo et al (2005), Petry and Maes (2009) describe that QoL is used as a conceptual framework for assessing quality outcomes, as a social construct that guides quality enhancement strategies and as a criterion for assessing the effectiveness of these strategies Maes 2009, Verdugo et al 2005). In addition, in a previous study was found that QoL of persons with PIMD also affects ethical deliberations on medical decisions (Zaal-Schuller et al 2018).…”

“…The assessors usually were familiar to the persons with PIMD, most often parents and professional caregivers. Some authors argued that triangulation between familiar and unfamiliar assessors was seen as a good assessment practice (Petry and Maes 2009). However, the assessment of QoL of persons with PIMD is difficult because these persons cannot describe their QoL themselves, nor can they confirm or deny the outcome of the assessment of their QoL.…”

Witnesses of hope in times of despair: chaplains in palliative care. A qualitative study

“…The innovation of the current study is that it brings to the fore the concept of witness. A witness is someone who is not a distanced observer but rather someone who is involved in the situation (Olsman, Nieuwenhuijse, & Willems, 2019). This involvement means that chaplains try to be open for patients' stories of hope and despair (Lester, 1995), and it requires their compassion to acknowledge the suffering, including despair, hopelessness, and powerlessness.…”