Quality of life of persons with profound intellectual and multiple disabilities: A narrative literature review of concepts, assessment methods and assessors

Abstract

Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the included studies were then analysed thematically. Results: Twenty-one articles were included in the analysis. Multidimensional concepts of QoL consisting of both subjective and objective components were found, although the articles used different distinctions for each. QoL was assessed by behavioural observations or interviews/ questionnaires. Family members, primary caregivers and more distant observers (or a combination of these three) determined QoL. Triangulation of assessors and methodological pluralism were used. Conclusions: This review highlighted several components of QoL in persons with PIMD, as well as challenges in researching the QoL of persons who are not able to express themselves verbally. The distinction between objective and subjective QoL was difficult to clarify, with interpretation being both inevitable and necessary. Although triangulation is seen to be good practice in QoL assessment, the role of proxies in assessing the QoL of persons with PIMD needs further investigation.

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

“…On the contrary, other domains were not mentioned by our interviewees, for example: self-determination, social inclusion and rights (Schalock et al, 2008). The physical cluster with elements of physical state and health is described in all combinations of domains that we found in the literature (Nieuwenhuijse et al, 2017). Our findings are also in line with the findings described by Zaal-Schuller, et al, (2018).…”

“…In the literature, QoL is frequently described in domains. In a literature review, we found several combinations of domains (Nieuwenhuijse et al, 2017). In our present study, the clustering of elements was an inductive process, based on interviews with seven physicians.…”

“…Our respondents emphasised the effect of the relational context (particularly the parents) on QoL of persons with PIMD, which included their comments on the death of the parents. The literature also revealed that the parents are often one of the assessors of QoL of persons with PIMD (Nieuwenhuijse et al, 2017). This can complicate matters, particularly in situations where the QoL of the person with PIMD plays a role in decisions regarding medical treatment (Zaal-Schuller et al, 2018).…”

“…A recent study explored the attitude of physicians to life-threatening events in children with severe neurological disabilities in Switzerland (Wosinski & Newman, 2019). However, in our literature review we found that knowledge on the role of QoL of persons with PIMD in ethical deliberations was scant (Nieuwenhuijse et al, 2017) and some authors say that the use of the concept of QoL in ethical issues is precarious (Petry & Maes, 2009). In clinical practice, however, ethical deliberations to make decisions on major surgery, tube feeding, and withholding or sustaining life-supporting treatment do occur and in the Netherlands, physicians bear the final responsibility for these decisions.…”

“…In research, QoL is mostly used as an outcome measure for interventions or quality of care. In a narrative literature review (Nieuwenhuijse, Willems, van Goudoever, Echteld, & Olsman, 2017) we found that questionnaires, for example the QoL-PMD (Petry, Maes, & Vlaskamp, 2009a, 2009b and San Martin scale (Verdugo, Gomez, Arias, Navas, & Schalock, 2014), and behavioural observations (Petry & Maes, 2006;Vos, De Cock, Petry, Van Den Noortgate, & Maes, 2013) were frequently used as methods to assess QoL. Parents, family, primary caregivers and researchers were the assessors of QoL.…”