bs_bs_banner

Journal of Intellectual Disability Research doi: 10.1111/jir.12204

1

Operationalisation of quality of life for adults with severe

disabilities
L. E. Gómez,1 B. Arias,2 M. Á. Verdugo,3 M. J. Tassé4 & I. Brown5
1 Department of Psychology, University of Oviedo, Plaza Feijoo, s/n., Oviedo 33003, Spain
2 Department of Psychology, University of Valladolid, Paseo de Belén 1, Campus Miguel Delibes, Valladolid 47011, Spain
3 Institute on Community Integration (INICO), University of Salamanca, Avda. de la Merced, 109-131, Salamanca 37005, Spain
4 Nisonger Center, The Ohio State University, 1581 Dodd Dr, Columbus, OH 43210, USA
5 Faculty of Social Work, University of Toronto, 246 Bloor Street W, Toronto, Ontario M5S 1V4, Canada

Abstract
Background The operationalisation of quality of life
for people with more severe disabilities has been
acknowledged in the published research for more
than two decades. This study aims to contribute to
our knowledge and understanding of the quality of life
of adults with severe disabilities by developing a set of
quality of life indicators appropriate to this population
using a Delphi method and the eight-domain con-
ceptual model proposed by Schalock & Verdugo
(2002).
Method The participating panel in the Delphi
method included 12 experts who evaluated each
proposed item according to four criteria: suitability,
importance, observability and sensitivity. Descriptive
analyses were used to select the best items in each of
the four rounds of this Delphi study, as well as
examining the coefficients of concordance that were
calculated for the final pool of items.
Results The four rounds of the Delphi study resulted
in a final pool of 118 items (91 that were considered
valid in the first round plus 27 items proposed,
reformulated or discussed in the following rounds).
Importance and sensitivity were the criteria that
received the highest and lowest ratings, respectively,
Correspondence: Ms Laura E. Gómez, Faculty of Psychology,
University of Oviedo, Plaza Feijoo, s/n., Oviedo 33003, Spain
(e-mail: gomezlaura@uniovi.es).
but also the ones that had the highest and lowest
mean coefficients of concordance. Experts showed
the strongest agreement for items related to material
well-being, while the weakest was found for items re-
lated to personal development.
Conclusions This study further contributes to our
understanding of how to operationalise and measure
quality of life in adults with severe disabilities. The
item pool generated may prove helpful in the
development of instruments for the measurement of
quality of life-related outcomes in this population.
Keywords behavioural measurement methods,
Delphi, intellectual disability, learning disability,
quality of life
Introduction
The importance and utility of the concept of quality of
life are unquestionable; it is used throughout the
world as a sensitising notion and to inform social
practices and interventions. The concept of quality of
life has become so important in social, health and
educational services that it is currently being used to
(1) guide the development of person-centred
interventions and function as a personal outcome
criterion at the microsystem level (e.g. Schalock et al.
2011; Gómez et al. 2012; Claes et al. 2012a; van Loon
et al. 2013), (2) inform quality improvement strategies

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
2
L. E. Gómez et al. • Quality of life for adults with severe disabilities
at the mesosystem level (e.g. Schalock et al. 2008;
McCabe et al. 2009; Schalock & Verdugo 2012, 2013;
Gómez et al. 2013; Reinders & Schalock 2014) and (3)
guide social policies (e.g. Shogren et al. 2009; Gómez
et al. 2013). Since the publication of the Convention on
the Rights of Persons with Disabilities (United Nations
2006), although not specifically mentioned, the
quality of life construct has been put forward as a
useful link between the social rights and the
personal lives of people with disabilities (Verdugo
et al. 2012; Shippers, Zuna, & Brown, in press), as
well as being a useful construct to drive progress
towards equity, empowerment and self-determination
(Navas et al. 2012).
Definitions of the quality of life construct have
significantly evolved over the past 30 years, especially
in the field of intellectual disability (ID). Today, there
is consensus about its multidimensionality and the
domains it should encompass (e.g. Felce & Perry
1995; Schalock et al. 2002; Cummins 2005). There is
also an international consensus that the concept of
quality of life applies equally to people with and
without disabilities and that its definition and
measurement should be similar for both populations,
although it is recognised that appropriate core
indicators of quality of life may vary according to
culture and to environmental and personal context
(Brown & Brown 2005; Lyons 2005; Verdugo et al.
2005; Schalock et al. 2010; Brown et al. 2013).
Several models of the dimensions of quality of life
are used in ID research (e.g. Felce & Perry 1995;
Schalock & Verdugo 2002; Cummins 2005; Gardner
& Carran 2005; Petry et al. 2005). In this study, we
used the eight-domain model proposed by Schalock &
Verdugo (2002) because (1) it is one of the most
widely cited and frequently used in the scholarly
literature, (2) it has good validity (e.g. Jenaro et al.
2005; Schalock et al. 2005; Gómez et al. 2010; Wang
et al. 2010), (3) it is used extensively by Spanish service
providers (this study was conducted in Spain) and (4)
it has been extended to other types of disabilities
(sensory and physical) and in other areas of social and
health services such as geriatrics, mental health and
substance abuse (De Maeyer et al. 2009; Arias et al.
2010; Gómez 2014).
The eight core domains of this quality of life model
are as follows: material well-being, physical
well-being, emotional well-being, social inclusion,
personal relationships, self-determination, personal
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
development and rights (Schalock & Verdugo 2002).
It has been established in the literature on quality of
life measurement that domains such as these are not
measured directly but rather are operationalised and
measured by key indicators (Brown et al. 2013)
appropriate to the target population and community
quality of life standards (Felce & Perry 1995; Hughes
& Hwang 1996). Each domain of quality of life is
operationalised as a set of indicators (i.e. perceptual,
behavioural and/or conditions). Indicators are
typically selected on the basis of a review of the
scientific literature and the views of expert panels or
stakeholder focus groups. What is important is that
the indicators be person-specific as well as are
culturally sensitive, relevant to current and future
policy issues, useful in quality improvement initiatives
and within the control of individuals with disability,
their significant others, organisations or
government (Schalock et al. 2010). Indicators
measure quality of life-related outcomes at the
individual level. Quality of life-related outcomes
should be evidence based, related to a cross-
culturally valid quality of life measurement model that
can be used for multiple purposes, and valid and
reliable (van Loon et al. 2013).
Significant progress has been made in developing
appropriate quality of life measurement instruments
for people with ID. The psychometric properties of the
instruments have, however, been questioned (Li et al.
2013). In a recent systematic review, Townsend-White
et al. (2012) concluded that there were only six
English-language instruments for assessing the quality
of life of persons with ID that had acceptable
psychometric properties. They also reported that most
instruments for assessing quality of life were only
suitable for those with high levels of intellectual/
adaptive functioning and that none was specifically
designed for use in individuals with challenging
behaviours or significant deficits in intellectual and
adaptive functioning, co-occurring motor
impairments, chronic health issues, sensory
impairments or mental health problems. Most quality
of life measurement methods that have been
developed are applicable to those who are able to
communicate their preferences, opinions, perceptions
and goals. These measurement instruments have been
used for people with more severe disabilities (e.g.
Brown et al. 1997), but no specially developed
instruments are available. The need for specially
 Journal of Intellectual Disability Research
3
L. E. Gómez et al. • Quality of life for adults with severe disabilities

designed quality of life instruments has been another. In this first study, we focused on the
acknowledged in the published ID literature for more perspective of professionals in Spain as a beginning
than two decades (Borthwick-Duffy 1990; Goode & point to a broader investigation of valid quality of life
Hogg 1994; Ouellette-Kuntz & McCreary 1996). indicators.
There has been some progress in assessing quality
of life in people with severe disabilities. Ouellette-
Kuntz & McCreary (1996) developed a definition and
Method
measure of quality of life for people with profound ID Participants
that focused on quality of care. Lyons (2005) used
A panel of professional participants, consisting of 12
in-depth qualitative analysis to argue that quality of
experts (seven women and five men) from the field of
life can be credibly described for this population.
ID, was developed to contribute an expert
Studies by Petry et al. (2007, 2009) perhaps warrant
professional perspective for this study. The experts
particular mention. Petry et al. (2007) used the Delphi
were selected by incidental sampling on the basis of
method to develop a definition of quality of life for
their professional training, research and/or clinical
persons with significant disabilities and confirmed the
experience in quality of life and disabilities (i.e. they
five-domain quality of life model proposed by Felce &
were actively involved in research on quality of life
Perry (1995). Petry et al. (2009) later developed a tool
and the target population and/or were professionals
for assessing quality of life in this group, which has
with broad experience in providing supports to the
been used in Belgium and the Netherlands; they also
target population). They were selected from a
reported a preliminary analysis of its psychometric
professional network that had been trained on the
properties. In general, however, there is either
eight-domain model – all of them were related to the
insufficient data on the psychometric properties of
Institute on Community Integration, University of
quality of life instruments for this population (Lyons
Salamanca – where there are several programmes to
2005; Vos et al. 2010), or the instruments can only be
train professionals in ID, and especially about quality
considered as psychometrically promising (e.g. Ross
of life. We strove to ensure that there was diversity in
& Oliver 2003; Petry et al. 2009, 2010).
gender, age, years of experience, degrees and job
The goal of this study was to contribute to the
positions. All the experts who were invited to
current knowledge and understanding of quality of
participate in the study were willing to participate and
life in adults with severe disabilities. More specifically,
completed all the elements required of the study.
we sought to develop a set of indicators that would be
The age of the experts ranged from 27 to 53 years
valid for assessing quality of life in persons with severe
(M = 37.9; SD = 7.6). Ten were psychologists, six of
disabilities. What we understand by ‘severe
whom also occupied a managerial position at an
disabilities’ are those conditions that, in addition to a
agency providing supports to people with severe
diagnosis of ID, make the person’s support needs
disabilities. The two remaining panellists were
extensive or pervasive because of the severity of their
occupational therapists with extensive experience
limitations in intellectual functioning and/or adaptive
providing frontline care to the target population. The
behaviour, or other significant conditions related to
professional experience of the 12 experts ranged from
language limitations, significant motor dysfunctions,
3 to 25 years (M = 12.7; SD = 7.3). All the experts
chronic and pain-related medical conditions,
were both theory and practice experts (i.e. they were
challenging behaviours, sensory impairments or
researchers with high academic qualifications as well
mental health problems. The indicators developed are
as professionals with solid clinic experience).
relevant to those who receive supports and services in
any kind of organisation and who are 16 years old or
more (not engaged in the education system). Procedure
We recognised from the outset that such a set of
Overall objectives of the procedure
indicators would differ somewhat from one support
perspective to another (i.e. indicators identified by We used a modified Delphi method to develop a pool
professionals, people with disabilities or family of indicators valid for assessing quality of life in
members might differ), as well as from one culture to persons with severe disabilities. Our organisation of

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
4
L. E. Gómez et al. • Quality of life for adults with severe disabilities
items was guided by the eight-domain quality of life
model proposed by Schalock & Verdugo (2002). We
report evidence on the suitability, importance,
sensitivity and observability of the proposed items;
these criteria were used to select the items best suited
to assessing quality of life-related outcomes in each of
the eight domains at the individual level for people
with severe disabilities.
The Delphi method
The Delphi method is a means of deriving the
consensus opinion of a group of experts in a specific
subject area (Dalkey & Helmer 1963). Variations on
the Delphi method have been increasingly used since
it was first developed, but its main characteristics
include the following (Linstone & Turoff 1975; Adler
& Ziglio 1996): (1) it provides controlled feedback on
individual contributions to information and
knowledge; (2) it gives an assessment of the group
judgement or view (e.g. statistics on group
responses); (3) it offers an opportunity for individuals
to revise their views of the subject matter; and (4) the
anonymity of individual contributions is guaranteed.
The Delphi method involves a panel of experts
responding to a series of research questions in an
iterative process. In the first round, researchers
present the research questions to the expert panel
and analyse individual responses. Following this, the
experts are asked to review their first-round
responses in the light of feedback about responses
from the group as a whole and to respond to
another set of research questions developed by the
research team. The iterative process ends when the
experts reach a satisfactory degree of consensus (i.e.
meet the criteria for consensus set by the
researchers).
There is no consensus on the appropriate size of a
Delphi expert panel (Hsu & Sandford 2007),
although the recommended size usually ranges from 8
to 15. The majority of Delphi studies have used 15–20
respondents (Ludwig 1997), and the number is
almost always under 50. Smaller panels have been
recommended when the topic is fairly narrow and the
professional background of the Delphi experts is
homogeneous (Delbecq et al. 1986; Ziglio 1996). The
suggestion of one paper, which seems to be both
practical and efficient, is that researchers should use
the smallest number sufficient to constitute a
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
representative pool of judgements (Delbecq et al.
1986).
Okoli & Pawlowski (2004) pointed out that the
Delphi method has the following advantages over
traditional surveys: (1) the appropriate Delphi group
size is not a function of statistical power but rather of
the group dynamics; (2) it produces a higher average
response rate, and test–retest reliability is not relevant
because it is assumed that the experts will revise their
responses; (3) it can be used to provide evidence of
construct validity if respondents are asked to consider
the interpretation and categorisation of variables; (4)
responses are reported to the expert group in an
anonymised form; this helps to avoid potential bias in
responding and also provides the researchers with the
opportunity to ask for clarifications and further
qualitative data; (5) non-response and attrition are
typically zero or negligible; and (6) it provides richer
data because it is an iterative process of refinement
based on respondent feedback and consensus.
Our modified Delphi method
Delphi studies usually divide experts into different
panels according to categories related to the research
question. For instance, Petry et al. (2007) recruited
three groups of experts: theory experts (e.g.
researchers and academics), practice experts (e.g.
professionals) and experience experts (e.g. consumers
or patients). We used only one group, as our focus in
this first study was to identify valid quality of life
indicators from a professional perspective. Thus, our
consultation process was a modified Delphi method.
Methods of obtaining the perspective of persons with
severe ID need to be explored in more detail in the
future.
The second main difference between our modified
Delphi method and the traditional Delphi method lies
in the data analysis techniques. It is usual to assess the
concordance among the experts (percentage
agreement); instead, we used descriptive analysis to
select the best items in every round, as well as
examining the coefficients of concordance for the
final pool of items: unweighted agreement coefficient
BN (Bangdiwala 1987), weighted agreement
coefficient BWN (Bangdiwala 1987), reliability index Ir
(Perreault & Leigh 1989) and Bennet’s S index
(Bennett et al. 1954). Percentage agreement is easy to
calculate and is the most commonly used measure of
 Journal of Intellectual Disability Research
5
L. E. Gómez et al. • Quality of life for adults with severe disabilities
inter-respondent reliability; however, it can be
misleading as it may be influenced by the number of
coding categories and does not take into account the
likelihood of chance agreement (Cohen 1960, as cited
in Perreault & Leigh 1989). There are also well-
documented and important problems (Brennan &
Prediger 1981, as cited in Perreault & Leigh 1989) with
Cohen’s kappa (1960, 1968); for instance, it is
influenced by the distribution of responses,
particularly for extreme distributions, and is therefore
considered overly conservative. For these reasons, we
used alternative measures of inter-respondent
reliability, which, although they have not been used
frequently for analysing Delphi method data, may be
considered more appropriate to the data than the more
commonly used indices (Perreault & Leigh 1989).
The Delphi procedure
The Delphi method was implemented in Moodle, a
free e-learning environment for creating dynamic
websites online. The website that we created allowed
the experts to log in while preserving their anonymity.
Experts were invited to participate in the study by
email and were never informed of the identity of the
other experts. The website provided instructions for
each round, materials (e.g. questionnaire for
completion and database of the items to be
evaluated), information about where to send their
evaluations of the item stems and a forum that could
be used to express opinions, ask questions or propose
solutions to problems relating to the consultation.
Ethics procedures as set out by the participating
institutions and organisations were followed, and the
standards governing research involving human
participants in force in Spain were met. The
University of Salamanca research ethics committee
also reviewed and approved the study.
Results
Delphi method results
The first step in the Delphi method consisted of an
exhaustive review of published research on quality of
life and people with severe disabilities, in order to
establish the core indicator categories for each of the
eight quality of life domains. The indicators and
corresponding items intended to index them were
primarily selected from other scales suitable for use
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
with people with ID (e.g. Petry et al. 2007; van Loon
et al. 2008; Verdugo et al. 2010; Gómez et al. 2012;
Verdugo et al. 2013a). The review generated a pool of
276 items grouped according to core indicators; the
core indicators were in turn assigned to one of the
eight quality of life domains. An initial selection of
items from this pool was made by four members of the
research team who are experts on quality of life and
disability; this selection resulted in 152 items, for
which there was unanimous agreement on suitability,
being put forward for the next step. The pool was
further reduced to 120 items (i.e. 15 per domain), and
these were reformulated so that they were (1)
expressed in the third person, (2) suitable for use with
a frequency response scale (i.e. never, sometimes,
often and always) and (3) followed all the accepted
methodological guidelines for item formulation (e.g.
avoidance of ‘no’ and other negative expressions,
accessible language and clarity of expression). See
Appendix A for examples of items.
Round 1
The material for the questionnaire used in the first
Delphi round was the 120 items selected to represent
the core indicators for the eight quality of life
domains. We asked the expert panel to evaluate all
items on a 4-point Likert scale (1 = not at all … to
4 = very …) for people with severe disabilities
according to four criteria: (1) suitability, the degree to
which a specific item was relevant to the domain
under which it had been placed; (2) importance, the
degree to which the item was essential for assessing
that domain for people with severe disabilities; (3)
observability, how amenable the item was to third-
party assessment (i.e. assessment by an external
observer such as a professional, caregiver or family
member); and (4) sensitivity, the degree to which the
score on items could be modified with appropriate
support and intervention.
Two additional criteria were used to select the
items with the highest ratings to go forward to the
next round: (1) mean score ≥ 3 and (2) SD < 1 across
all suitable criteria. Using these criteria, 91 items
(76%) were retained, and 29 items (24%) were
rejected. These 91 items have been marked in
Appendix A with an asterisk.
Table 1 shows the medians, means and SDs of
scores on the four criteria (1 to 4 range) for the 120
 Journal of Intellectual Disability Research
6
L. E. Gómez et al. • Quality of life for adults with severe disabilities

Table 1 Descriptive analyses for round 1 by criteria

Me M SD N valid items % valid N items non-valid % non-valid

Suitability 3 3.619 0.641 111 92.50 9 7.50

Importance 4 3.738 0.464 116 96.67 4 3.33
Sensitivity 3.5 3.354 0.675 102 85.00 18 15.00
Observability 4 3.574 0.548 115 95.83 5 4.17

items. It also shows the number and percentage of
items retained and rejected according to the two
additional criteria. The criterion that produced the
lowest scores and resulted in the highest number of
rejections was sensitivity; importance attracted the
highest ratings and generated the fewest rejections.
We also asked the experts to propose up to five new
items or core indicators for each quality of life
domain. In total, the experts proposed 7 new core
indicators and 452 new items, ranging from 49 to 61
items per domain, with more new items suggested for
physical well-being and rights than the other domains.
Table 2 shows the number and percentage of the
120 items retained and rejected and the number of
suggested new core indicators and items by domain.
Social inclusion and interpersonal relationships had
the highest proportions of rejected items.
Round 2
This round focused on the new items proposed by the
experts in the previous round (Ni = 452). The
research team eliminated all the proposed items that
were considered to duplicate or overlap existing
items. This produced an initial selection of 11–19 new
items for each of the eight domains (Table 3). Adding
these to the items retained from round 1 resulted in a
pool of 219 items (Table 3).
In round 2, the experts assessed whether or not
each of the 127 new items should be included (yes/no
response format) in the final scale for assessing the
quality of life of people with severe disabilities. In view
of the large number of new items, the selection
criterion adopted was very strict (100% consensus on
a new item’s suitability). Twenty-one (17%) of the
new items met this criterion. It should be noted that
most of the new items attracted positive suitability
scores (M = 0.80; SD = 0.17). Only nine items
(0.07%) attracted a modal score of 0 (i.e. were
considered not adequate by most of the experts).
Round 3
The third round focused on the 29 items that had
been rejected in round 1. Experts were instructed to
use the online forum to discuss each of these items
with respect to the four separate suitability criteria
and were encouraged to provide arguments to
convince the other expert panellists that the items

Table 2 Descriptive analyses for round 1 by domain

N valid % valid N non-valid % non-valid N new items N new indicators

Self-determination 12 13.19 4 13.79 60 0

Emotional well-being 14 15.38 1 03.45 59 1
Physical well-being 11 12.09 4 13.79 61 2
Material well-being 11 12.09 4 13.79 54 0
Rights 13 14.29 2 06.90 56 2
Personal development 13 14.29 2 06.90 56 1
Social inclusion 9 09.89 6 20.69 57 1
Interpersonal relationships 9 09.89 6 20.69 49 0
Total 91 100 29 100 452 7

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
7
L. E. Gómez et al. • Quality of life for adults with severe disabilities

Table 3 Descriptive analyses for round 2 by domain

N valid N new N new N new items N valid + 100% consensus

round 1 items indicators selected items selected about new items

Self-determination 12 60 0 15 27 3
Emotional well-being 14 59 1 11 25 1
Physical well-being 11 61 2 19 30 2
Material well-being 11 54 0 19 30 3
Rights 13 56 2 14 27 2
Personal development 13 56 1 17 30 1
Social inclusion 9 57 1 16 25 3
Interpersonal relationships 9 49 0 16 25 6
Total 91 452 7 127 219 21

were unsuitable. This discussion resulted in
agreement on (1) a reformulation of 18 items (62%) to
clarify item content, (2) reassignment of four items
(14%) to a different domain (all of which had initially
been assigned to the social inclusion domain; one was
reassigned to emotional well-being, one to personal
development and two to interpersonal relationships)
and (3) the unsuitability of seven items (24%).
Round 4
In this round, the experts were instructed to use the
same 4-point scale as before (1 = not at all … to
4 = very …) to rate the 50 items rejected or added
during previous rounds (the 29 items rejected in the
first round but discussed in the third round and the 21
new items rated suitable in the second round) on the
four suitability criteria (suitability, importance,
observability and sensitivity). Retention criteria were
the same in this round as in round 1: (1) mean
score ≥ 3 and (2) SD < 1 across all suitable criteria.
Again, the lowest scores were awarded for sensitivity
and the highest for importance. Descriptive results are
shown in Table 4. Twenty-seven of these 50 items
(54%) met these criteria and were therefore retained
(Table 5).
Items in the new instrument
The four rounds of the Delphi study resulted in a final
pool of 118 items (91 retained from the first round
plus 27 items proposed, reformulated or discussed in
the following rounds; see Appendix A). These items
constituted the pool of items to be included in the
new instrument for the assessment of quality of life of
persons with severe disabilities. As noted, not all the
items might be appropriate for all individuals assessed
because, under the descriptive term ‘severe
disabilities’, many different conditions might be
included. For this reason, a clarification must be
included for the items that might not be applicable
to some individuals (they are in italics in Appendix
A), and we recommend rating them with the
maximum score. For example, the item ‘The
technical aids that he/she needs have been
individually adapted’ should be answered ‘always’ if
the person does not need them.

Table 4 Descriptive analyses for round 4 by criteria

Me M SD N valid items % valid N items non-valid % non-valid

Suitability 4 3.602 0.604 43 86 7 14

Importance 4 3.655 0.569 47 94 3 6
Sensitivity 3 3.157 0.764 22 44 28 56
Observability 4 3.522 0.529 43 86 7 14

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
8
L. E. Gómez et al. • Quality of life for adults with severe disabilities

Table 5 Descriptive analyses for round 4 by domain

BWN takes into account partial agreements among
experts by including a weighted contribution from off-
N % N non- % non- diagonal cells. The reliability index Ir (Perreault &
valid valid valid valid Leigh 1989) does not compare observed agreement
with chance agreement; rather, it assumes that there is
Self-determination 1 2 6 12 a real expected agreement level and it takes a
Emotional well-being 2 4 1 2
parametric statistical approach to estimating this
Physical well-being 3 6 3 6
Material well-being 4 8 3 6 (Neuendorf 2002). Bennett’s S provides a measure of
Rights 3 6 1 2 inter-respondent reliability based on expected
Personal development 3 6 1 2 percentage agreement adjusted according to the
Social inclusion 2 4 3 6 number of categories used. All coefficients indicated
Interpersonal relationships 9 18 5 10
from fair to substantial agreement among our experts.
Total 27 54 23 46
As shown in Table 6, the importance and sensitivity
criteria attracted the highest and lowest scores,
respectively; they also produced, respectively, the
Inter-respondent agreement
highest and lowest mean coefficients of concordance.
The final step of the Delphi procedure consisted of BWN most frequently provided the highest estimate of
measuring agreement among the experts on the inter-respondent agreement and Bennett’s S the
suitability of these 118 items. Table 6 presents a set of lowest across criteria and domains. Agreement was
concordance coefficients for the four criteria strongest for items related to material well-being and
(suitability, importance, sensitivity and observability) weakest for items related to personal development.
by domain: unweighted agreement coefficient
(Bangdiwala 1987), weighted concordance coefficient
Discussion
(Bangdiwala 1987), reliability index (Perreault &
Leigh 1989) and Bennet’s S index (Bennett et al. This study endeavoured to develop a set of indicators,
1954). The unweighted agreement coefficient (BN) from the perspective of disability professionals, that
provides a measure of the degree of respondent would be useful for assessing the quality of life of
agreement, taking into account only absolute people with severe disabilities. The eight-domain
agreements, while the weighted agreement coefficient model put forward by Schalock & Verdugo (2002),

Table 6 Coefficients of concordance for agreement among experts

Suitability Importance Sensitivity Observability M

BN BW
N Ir S BN BW
N Ir S BN BW
N Ir S BN BW
N Ir S

SD .455 .649 .614 .377 .594 .820 .723 .522 .199 .415 .453 .205 .500 .736 .685 .469 .526
EW .659 .877 .762 .580 .738 .982 .829 .687 .316 .536 .557 .310 .387 .614 .636 .404 .617
PW .629 .853 .748 .559 .648 .888 .772 .596 .265 .495 .536 .287 .614 .844 .740 .548 .626
MW .655 .871 .758 .574 .749 .984 .833 .693 .312 .549 .569 .324 .648 .891 .785 .616 .676
RI .742 .968 .821 .674 .687 .932 .796 .633 .476 .705 .664 .441 .337 .536 .558 .312 .643
PD .520 .729 .665 .442 .576 .818 .734 .538 .167 .375 .405 .164 .337 .573 .581 .338 .498
SI .467 .656 .626 .392 .647 .879 .768 .589 .178 .386 .420 .176 .580 .824 .742 .551 .555
IR .603 .828 .732 .535 .576 .818 .729 .531 .269 .464 .475 .226 .481 .695 .659 .434 .566
M .591 .804 .716 .517 .652 .890 .773 .599 .273 .491 .510 .267 .486 .714 .673 .459 .526
.656 .728 .385 .583

BN, unweighted agreement coefficient (Bangdiwala 1987); BW N , weighted concordance coefficient; Ir, reliability index (Perreault & Leigh 1989);
S, Bennet’s S index (Bennett et al. 1954); SD, self-determination; EW, emotional well-being; PW, physical well-being; MW, material well-
being; RI, rights; PD, personal development; SI, social inclusion; IR, interpersonal relationships; M, mean.

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
9
L. E. Gómez et al. • Quality of life for adults with severe disabilities
which is widely recognised in the literature on quality
of life and ID, was used as a conceptual framework for
the indicators.
We implemented a four-round modified Delphi
method that generated a final pool of 118 items
representing each of the eight domains. This method,
which included qualitative and quantitative expert
ratings of suitability, importance, sensitivity and
observability of the items selected – along with our
analysis of inter-respondent agreement – provides a
strong rationale for the credibility of the indicators.
This is particularly important for assessing social
constructs such as quality of life that cannot be
measured directly but need to be measured indirectly
by indicators (Brown et al. 2013).
The pool of items developed by this modified
Delphi method allows us to operationalise quality of
life specifically for an adult population that has often
been overlooked, perhaps because of the
measurement challenge that it presents. These
challenges have sometimes been met by assuming that
indicators can be responded to variously in ways that
are appropriate to the developmental level of the
respondent, by using qualitative as well as quantitative
methods (Lyons 2005) or by focusing on quality of
care rather than on aspects of a person’s life
(Ouellette-Kuntz & McCreary 1996). Each of these
approaches has its advantages and disadvantages, and
the set of indicators developed here provides an
additional option to the challenge of accurately
assessing the quality of life for this population.
In developing this pool of items, we have not
addressed the additional challenge of who should
respond to them when collecting data. Proxies –
people who know those with severe disabilities well –
have been used in past research, but the degree to
which proxies rate quality of life indicator scales
accurately has been strongly questioned in the quality
of life and ID literature (see Lyons 2005, for a
summary). Some studies have found agreement
between the person with disability and proxies in
quality of life assessments, and low correlations have
been suggested to result from differences in the
knowledge of the assessor (Schmidt et al. 2010; Claes
et al. 2012b); however, others have found no
agreement or very low agreement between the
person and proxies (e.g. Lyons 2005; Zimmermann
& Endermann 2008; Balboni et al. 2013). In one
large-sample study in Canada (Brown et al. 1997),
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
ratings of quality of life indicators by people with
disabilities and ratings on the same indicators by
proxies did not correlate to a statiscally significant
degree. The question, then, of how to obtain the
most valid data using the indicators developed in this
study is one that will need to be explored further in
the future.
The validity of this pool of items, using proxies, has
already been field tested in a sample of 1770 adults
with ID and extensive or pervasive support needs in
various Spanish counties (Verdugo et al. 2014). The
reliability of the items in this sample was calculated in
terms of the corrected homogeneity index (CHI)
among other measures. Only five items had a CHI
score below .200: i20 and i22 (emotional well-being),
i61 and i71 (rights) and i54 (material well-being);
these items were deleted from the final version of the
instrument: San Martín Scale (Verdugo et al. 2013b).
Only five items in the pool of 120 had negative
valence, and four of these had CHI scores of less than
.200 and were already considered for deletion (i20,
i22, i61 and i71). From this, we concluded that those
with a negative valence were harder for respondents to
understand. With regard to the remaining negative
valence item, i54: ‘his/her housing is adapted to
persons with limited mobility and to wheelchair user’,
the main problem seemed to be that most of the
participants neither needed nor had such adaptations
and thus there was very little variability in scores on
this item. Also, the fit of data obtained using this
instrument to the eight-domain model was assessed
with confirmatory factor analysis; this indicated that
the items tapped the intended domains and that eight
domains of quality of life could be distinguished.
Verdugo et al. (2014) provided more evidence of
the suitability and importance of the pool of items
than we have presented here, but further evidence
on the sensitivity and observability of the items is
needed; this is particularly important in view of the
fact that in our pool of items, these criteria
generated the lowest scores and weakest
concordance. Further research should first check
the observability of the items by assessing inter-rater
reliability (i.e. compare the responses of two
independent observers) and then evaluate the
sensitivity of the items to significant changes arising
from interventions and provision of support designed
to improve quality of life-related outcomes through
longitudinal studies.
 Journal of Intellectual Disability Research
10
L. E. Gómez et al. • Quality of life for adults with severe disabilities
Our modified Delphi consultation deliberately
focused on the professional perspective, and our
panel did not seek in this study to include individuals
with disabilities, their family members or other
perspectives. Obtaining the perspective of people with
severe disabilities involves significant challenges: their
limited ability to comprehend and express abstract
and complex concepts means that it would have been
extremely difficult to include them in the Delphi
procedure; other methods would in all probability
have to be used. Still, it is recognised that other
perspectives might differ from the one generated by
the participants in this study, and thus, it would be a
useful next step to compare this pool of items with the
responses of a sample of parents, siblings or other
family members of persons with severe disabilities, as
well as with the observed quality of life priorities of
people with severe disabilities. Future studies might
further examine the validity of this pool of items using
such input, as well as developing additional reliable,
user-friendly strategies for evaluating quality of life
core indicators that are important for those
individuals with significant disabilities who have
limited ability to express themselves.
This study contributes to our understanding of
quality of life for adults with severe disabilities and
provides a further method for assessing it. The item
pool generated may prove helpful in the development
of instruments for the measurement of quality of life-
related outcomes in this population. A similar method
could be used to generate other potential quality of
life indicators that might be important in other
cultures because, although quality of life domains
seems to be universal, indicators have a tendency to
be culture bound (Schalock et al. 2005).
We believe that this research represents a necessary
first step in the assessment of quality of life-related
outcomes at the individual level, something that is
vital to the development of person-centred support
programmes and evidence-based interventions to
improve quality of life for people with severe
disabilities.
Acknowledgements
This study was supported in part with funding from
Fundación Obra San Martín (Santander, Spain) and
the Spanish Ministry of Economy and Competitiveness
(R&D Projects, 2012) (PSI2012-33139 and PSI2012-
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
36278). The authors would like to thank the
organisations, people with intellectual disability,
professionals and families for completing the
questionnaires and FEAPS for its support on this
project.
Conflict of interest
The manuscript has not been published elsewhere, is
not currently submitted elsewhere and is significantly
different from other manuscripts that have been
submitted elsewhere. Ethics procedures have been
followed, and the standards governing research
involving human participants in force in Spain have
been met. There is not any financial or any other kind
of conflicts of interest for the authors of this
manuscript. Neither the funding bodies of this
research have imposed any restrictions on free access
to or publication of these research data. Its
publication is approved by all authors and by the
responsible authorities where the work was carried
out. If accepted, it will not be published elsewhere
including electronically in the same form, in English
or in any other language, without the written consent
of the copyright holder.
References
Adler M., & Ziglio E. (1996) Gazing into the Oracle: The
Delphi Method and Its Application to Social Policy and Public
Health. Jessica Kingsley Publishers, London.
Arias B., Gómez L. E., Verdugo M. A., & Navas P. (2010)
Evaluación de la calidad de vida en drogodependencias
mediante el modelo de Rasch [Assessment of quality of life
in people with drug dependences with Rasch model].
Revista Española de Drogodependencias 35, 206–19.
Balboni G., Coscarelli A., Giunti G., & Schalock R. L.
(2013) The assessment of the quality of life of adults with
intellectual disability: the use of self-report and report of
others assessment strategies. Research in Developmental
Disabilities 34, 4248–54.
Bangdiwala K. (1987) Using SAS software graphical
procedures for the observer agreement chart. Proceedings
of the SAS User’s Group International Conference, 12,
1083–8.
Bennett E. M., Alpert R., & Goldstein A. C. (1954)
Communications through limited response questioning.
Public Opinion Quarterly 18, 303–8.
Borthwick-Duffy S. (1990) Quality of life of persons with
severe and profound mental retardation. In: Quality of Life:
Perspectives and Issues (ed. R. Schalock), pp. 177–92.
 Journal of Intellectual Disability Research
11
L. E. Gómez et al. • Quality of life for adults with severe disabilities
American Association on Mental Retardation,
Washington, DC.
Brennan R. L., & Prediger D. J. (1981) Coefficient kappa:
some uses, misuses, and alternatives. Educational and
Psuchological Measurement 41, 687–99.
Brown I., Hatton C., & Emerson E. (2013) Quality of life
indicators for individuals with intellectual disabilities:
extending current practice. Intellectual and Developmental
Disabilities 51, 316–32.
Brown I., Raphael D., & Renwick R. (1997) Quality of
life-dream or reality? Life for people with developmental
disabilities in Ontario. Centre for Health Promotion,
University of Toronto, Toronto, Canada.
Brown R. I., & Brown I. (2005) The application of quality of
life. Journal of Intellectual Disability Research 49, 718–27.
Claes C., van Hove G., Vandevelde S., van Loon J., &
Schalock R. L. (2012a) The influence of supports
strategies, environmental factors, and client characteristics
on quality of life-related personal outcomes. Research in
Developmental Disabilities 33, 96–103.
Claes C., Vandevelde S., van Hove G., van Loon J.,
Verschelden G., & Schalock R. L. (2012b) Relationship
between self-report and proxy ratings on assessed personal
quality of life-related personal outcomes. Journal of Policy
and Practice in Intellectual Disabilities 9, 159–65.
Cohen J. (1960) A coefficient of agreement for nominal scales.
Educational and Psychological Measurement 20, 37–46.
Cohen J. (1968) Weighed kappa: Nominal scale agreement
with provision for scaled disagreement or partial credit.
Psychological Bulletin 70, 213–20.
Cummins R. A. (2005) Moving from the quality of life
concept to a theory. Journal of Intellectual Disability
Research 49, 699–706.
Dalkey N., & Helmer O. (1963) An experimental application
of the Delphi method to the use of experts. Management
Science 9, 458–67.
Delbecq A. L., Van de Ven A. H., & Gustafson D. H.
(1986) Group Techniques for Program Planning: A Guide to
Nominal Group and Delphi Processes. Green Briar Press,
Middleton, WI.
De Maeyer J., Vanderplasschen W., & Broekaert E. (2009)
Exploratory study on drug users’ perspectives on quality of
life: more than health-related quality of life? Social
Indicators Research 90, 107–26.
Felce D., & Perry J. (1995) Quality of life: its definition and
measurement. Research in Developmental Disabilities 16, 51–74.
Gardner J. F., & Carran D. (2005) Attainment of personal
outcomes by people with developmental disabilities.
Mental Retardation 43, 157–74.
Gómez L. E. (2014) Spanish social service recipients. In
Encyclopedia of Quality of Life Research. Springer (ed. A.
Michalos), Dordrecht, The Netherlands.
Gómez L. E., Arias B., Verdugo M. A., & Navas P. (2012)
Application of the Rasch Rating Scale model to the
assessment of quality of life of persons with intellectual
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
disability. Journal of Intellectual & Developmental Disability
37, 141–50.
Gómez L. E., Verdugo M. A., Arias B., & Arias V. (2010) A
comparison of alternative models of individual quality of
life for social service recipients. Social Indicators Research
101, 109–26.
Gómez L. E., Verdugo M. A., Arias B., Navas P., &
Schalock R. L. (2013) The development and use of
provider profiles at the organization and systems level.
Evaluation and Program Planning 40, 17–26.
Goode D. A., & Hogg J. (1994) Towards an understanding
of holistic quality of life in people with profound
intellectual and multiple disabilities. In Quality of Life for
People with Disabilities: International Perspectives and Issues
(ed. D. Goode), pp. 197–207. Brookline Books,
Cambridge, MA.
Hsu C. C., & Sandford B. A. (2007) The Delphi technique:
making sense of consensus. Practical Assessment, Research
and Evaluation 12, 1–8.
Hughes C., & Hwang B. (1996) Attempts to conceptualize
and measure quality of life. In: Quality of Life.
Conceptualization and measurement (ed. R. L. Schalock),
1, pp. 51–61. American Association on Intellectual and
Developmental Disabilities, Washington, DC.
Jenaro C., Verdugo M. A., Caballo C., Balboni G.,
Lachapelle Y., Otrebski W., & et al. (2005) Cross-cultural
study of person-centered quality of life domains and
indicators: a replication. Journal of Intellectual Disability
Research 49, 734–39.
Li C., Tsoi E. W. S., Zhang A. L., Chen S., & Wang C. K. J.
(2013) Psychometric properties of self-reported quality of
life measures for people with intellectual disabilities: a
systematic review. Journal of Developmental and Physical
Disabilities 25, 253–70.
Linstone A., & Turoff M. (1975) The Delphi Method:
Technique and Applications. Addison Wesley Publishing,
Reading, MA.
Ludwig B. (1997) Predicting the future: have you
considered using the Delphi methodology? Journal of
Extension 35, 1–4.
Lyons G. (2005) The life satisfaction matrix: an instrument
and procedure for assessing the subjective quality of life of
individuals with profound multiple disabilities. Journal of
Intellectual Disability Research 49, 766–69.
McCabe M. P., Firth L., & O’Connor E. (2009) Mood and
quality of life among people with progressive neurological
illnesses. International Journal of Clinical and Health
Psychology 9, 21–35.
Navas P., Gómez L. E., Verdugo M. A., & Schalock R. L.
(2012) Derechos de las personas con discapacidad
intelectual: implicaciones de la Convención de Naciones
Unidas [Rights of persons with intellectual disabilities:
implications of the United Nations Convention]. Siglo
Cero 43, 7–28.
Neuendorf K. A. (2002). The content analysis guidebook.
Sage, Thousand Oaks, CA.
 Journal of Intellectual Disability Research
12
L. E. Gómez et al. • Quality of life for adults with severe disabilities
Perreault W. D., & Leigh L. E. (1989) Reliability of nominal
data based on qualitative judgments. Journal of Marketing
Research 26, 135–48.
Okoli C., & Pawlowski S. D. (2004) The Delphi method as a
research tool: an example, design considerations and
applications. Information and Management 42, 15–29.
Ouellette-Kuntz H., & McCreary B. (1996) Quality of life
assessment for people with severe developmental
disabilities. In: Quality of Life in Health Promotion and
Rehabilitation. Conceptual Approaches, Issues and
Applications (eds. R. Renwick, I. Brown, & M. Nagler),
pp. 268–78. Sage Publications, Thousand Oaks, CA.
Petry K., Kuppens S., Vos P., & Maes B. (2010)
Psychometric evaluation of the Dutch version of the
mood, interest and pleasure questionnaire (MIPQ).
Research in Developmental Disabilities 31, 1652–58.
Petry K., Maes B., & Vlaskamp C. (2005) Domains of
quality of life of people with profound multiple disabilities:
the perspective of parents and direct support staff. Journal
of Applied Research in Intellectual Disabilities 18, 35–46.
Petry K., Maes B., & Vlaskamp C. (2007) Operationalizing
quality of life for people with profound multiple
disabilities: a Delphi study. Journal on Intellectual Disability
Research 52, 334–49.
Petry K., Maes B., & Vlaskamp C. (2009) Psychometric
evaluation of a questionnaire to measure the quality of
life of people with profound multiple disabilities
(QOL-PMD). Research in Developmental Disabilities 30,
1326–36.
Reinders H., & Schalock R. L. (2014) How organizations
can enhance the quality of life of their clients and assess
their results: the concept of QOL enhancement American.
Journal of Intellectual and Developmental Disabilities 119,
291–302.
Ross E., & Oliver C. (2003) The assessment of mood in
adults who have severe or profound mental retardation.
Clinical Psychology Review 23, 225–45.
Schalock R. L., Bonham G. S., & Verdugo M. A. (2008)
Quality of life conceptual and measurement
frameworks: from concept to application in the field of
intellectual disabilities. Evaluation and Program Planning
31, 181–90.
Schalock R. L., Brown I., Brown R., Cummins R. A., Felce
D., Matikka L., & et al. (2002) Conceptualization,
measurement, and application of quality of life for persons
with intellectual disabilities: report of an international
panel of experts. Mental Retardation 40, 457–70.
Schalock R. L., Keith K. D., Verdugo M. A., & Gómez L. E.
(2010) Quality of life model development in the field of
intellectual disability. In: Enhancing Quality of Life for
People with Intellectual Disability: From Theory to Practice
(ed. R. Kober), pp. 17–32. Springer, Dordrecht, The
Netherlands.
Schalock R. L., & Verdugo M. A. (2002) Handbook on
Quality of Life for Human Service Practitioners. American
Association on Mental Retardation, Washington, DC.
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Schalock R. L., & Verdugo M. A. (2012) A conceptual and
measurement framework to guide policy development and
systems change. Journal of Policy & Practice in Intellectual
Disabilities 7, 71–81.
Schalock R. L., & Verdugo M. A. (2013) The transformation
of disabilities organizations. Journal of Intellectual &
Developmental Disabilities 51, 273–86.
Schalock R. L., Verdugo M. A., & Gómez L. E. (2011)
Evidence-based practices in the field of intellectual
and developmental disabilities: an international
consensus approach. Evaluation and Program Planning
34, 273–82.
Schalock R. L., Verdugo M. A., Jenaro C., Wang M.,
Wehmeyer M., Xu J., & et al. (2005) Cross-cultural study
of quality of life indicators. American Journal on Mental
Retardation 110, 298–311.
Schmidt S., Power M., Green A., Lucas-Carrasco R., Eser E.,
Dragomirecka E., & et al. (2010) Self and proxy rating of
quality of life in adults with intellectual disabilities: results
from the DISQOL study. Research in Developmental
Disabilities 31, 1015–26.
Shippers A., Zuna N., & Brown I. (in press) A framework for
an integrated process for improving quality of life. Journal
of Policy and Practice in Intellectual Disability.
Shogren K. A., Bradley V. J., Gomez S. C., Yeager M. H.,
Schalock R. L., Borthwick-Duffy S., & et al. (2009) Public
policy and the enhancement of desired outcomes for
persons with intellectual disability. Intellectual and
Developmental Disabilities 47, 307–19.
Townsend-White C., Pham A. N. T., & Vassos M. V. (2012)
A systematic review of quality of life measures for people
with intellectual disabilities and challenging behaviours.
Journal of Intellectual Disability Research 56, 270–84.
United Nations. (2006) Convention on the rights of persons
with disabilities. Available at http://www.un.org/
disabilities/convention/conventionfull.shtml
van Loon J. H. M., Bonham G. S., Peterson D. D., Schalock
R. L., Claes C., & Decramer A. E. M. (2013) The use of
evidence-based outcomes in systems and organizations
providing services and supports to persons with
intellectual disability. Evaluation and Program Planning
36, 80–87.
van Loon J., van Hove G., Schalock R. L., & Claes C. (2008)
POS. Persoonlijke ondersteuningsuitkomsten schaal.
Individuele kwaliteit van bestaan [Personal Outcome Scale.
Administration Manual]. Garant, Antwerpen, Apeldoorn.
Verdugo M. A., Arias B., Gómez L. E., & Schalock R. L.
(2010) Development of an objective instrument to assess
quality of life in social services: reliability and validity in
Spain. International Journal of Clinical and Health
Psychology 10, 105–23.
Verdugo M. A., Gómez L. E., Arias B., Navas P., &
Schalock R. L. (2014) Measuring quality of life in persons
with intellectual and multiple disabilities: validation of the
San Martín Scale. Research in Developmental Disabilities 35,
75–86.
 Journal of Intellectual Disability Research
13
L. E. Gómez et al. • Quality of life for adults with severe disabilities
Verdugo M. A., Gómez L. E., Arias B., Santamaría M.,
Clavero D., & Tamarit J. (2013a) Evaluación de la calidad
de vida en personas con intelectual: la Escala INICO-
FEAPS [Assessment of quality of life in persons with
intellectual disability: INICO-FEAPS Scale]. Siglo Cero
44, 6–20.
Verdugo M. A., Gómez L. E., Arias B., Santamaría M.,
Navallas E., Fernández S., & et al. (2013b) Evaluación de
la calidad de vida en personas con discapacidades
significativas: la escala San Martín [Assessment of quality
of life in people with significant disabilities: San Martin
Scale]. Siglo Cero 44, 6–20.
Verdugo M. A., Navas P., Gómez L. E., & Schalock R. L.
(2012) The concept of quality of life and its role in
enhancing human rights in the field of intellectual
disability. Journal of Intellectual Disability Research 56,
1036–45.
Verdugo M. A., Schalock R. L., Keith K. D., & Stancliffe R.
J. (2005) Quality of life and its measurement: important
principles and guidelines. Journal of Intellectual Disability
Research 49, 707–17.
Vos P., De Cock P., Petry K., Van den Noortgate W., &
Maes B. (2010) Do you know what I feel? A first step
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
towards a non-interpretative measurement of the
subjective well-being of persons with profound intellectual
and multiple disabilities. Journal of Applied Research in
Intellectual Disabilities 23, 366–78.
Wang M., Schalock R. L., Verdugo M. A., & Jenaro C.
(2010) Examining the factor structure and hierarchical
nature of the quality of life construct. American
Journal on Intellectual and Developmental Disabilities
115, 218–33.
Ziglio E. (1996) The Delphi-method and its contribution to
decision-making. In: Gazing into the Oracle. The Delphi-
Method and Its Application to Social Policy and Public Health
(eds. M. Adler & E. Ziglio), pp. 3–33. Jessica Kingsley
Publishers, London.
Zimmermann F., & Endermann M. (2008) Self-proxy
agreement and correlates of health-related quality of life in
young adults with epilepsy and mild intellectual
disabilities. Epilepsy and Behavior 13, 202–11.
Accepted 22 April 2015
 Journal of Intellectual Disability Research
14
L. E. Gómez et al. • Quality of life for adults with severe disabilities

Appendix A: 18 Persons providing him or her supports know

Self-determination
1 Persons providing him or her supports take into
account his or her preferences and choices.*
2 He or she participates in the development of his
or her individual support plan.*
3 The staff respects his or her decisions.*
4 He or she chooses how to spend his or her free time.
5 Specific measures are taken to allow him or her to
influence his or her environment (i.e. physical,
material and social environment).*
6 Specific measures are taken to allow him or her
to make choices.*
7 He or she has opportunities to refuse to do
things that are irrelevant to his or her health
(e.g. to participate in a leisure activity, to go to
bed to a specific time and to wear clothes that
other people choose for him or her).*
8 He or she chooses the meal or part of the meal
when there is variety in all courses.*
9 He or she decorates his or her bedroom to his or
her liking.
10 Provided supports take into account his or her
needs, wishes and preferences (e.g. persons
providing supports, being alone or with other
people, time and daily routines).*
11 The decision to carry out an action is considered
carefully when he or she experiences it as unpleasant
(e.g. during personal care, meals and activities).*
12 He or she has a daily programme with activities
that reflect his or her preferences.*
Emotional well-being
13 Persons providing him or her supports have a list of
observable behaviours expressing his or her
emotional states (e.g. maps and records).
14 He or she is informed in advance about changes
in the staff that provides supports to him or her
(e.g. due to shifts, sick leaves and holidays).
15 The staff talks negatively about the person in his
or her presence.*
16 Persons providing him or her supports know his
or her individual expressions of emotional
well-being. *
17 Persons providing him or her supports know his
or her individual expressions of distress.*
how he or she expresses wishes.*
19 Persons providing him or her supports pay
attention to his or her facial expressions, look,
direction of eye gaze, tone/volume of voice,
muscular tension, body position, movements
and physiological reactions. *
20 He or she is nervous or restless.*
21 He or she has a personal record that indicates what
he or she likes, what calms him or her down, what
he or she dislikes and how he or she can react, that
all the staff knows and must follow.*
22 He or she has challenging behaviours (e.g. self-
injurious behaviours and aggression to others).*
23 Specific guidelines and advice are provided to
him or her in order to help him or her to control
his or her behaviours.
24 Persons providing him or her supports have
training on positive behaviour support skills.*
25 Specific measures are taken to prevent or treat
mental health-related problems.*
26 Adequate affection and physical contact are
provided when he or she needs them.*
27 Specific measures are taken to optimise the
group environment where he or she lives in.*
28 Specific measures are taken to make his or her
environment recognisable and predictable (e.g.
spaces, timings, people providing supports and
activities).*
Physical well-being
29 He or she has a diet that is adapted to his or her
characteristics and needs.
30 He or she engages in physical activities and
exercises that are adequate to his or her
characteristics and needs.
31 He or she receives supports that guarantee an
adequate posture comfort.
32 He or she has the recommended quantity of food
and liquids to maintain a good state of health.*
33 In the service that he or she attends, they take
care in the preparation and presentation of meals
(e.g. balanced, taste, variety and temperature).*
34 The use of medication is reviewed periodically (e.g.
dosage, frequency, effectiveness and side effects).*
35 Persons providing him or her supports have specific
training on his or her specific health-related issues.*

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
15
L. E. Gómez et al. • Quality of life for adults with severe disabilities
36 He or she has adequate hygiene (e.g. teeth, hair,
nails and body) and personal image (e.g.
age-adequate clothing style and situation-
adequate clothing).*
37 He or she is active in different spaces (i.e.
indoors and outdoors).*
38 Specific measures are taken to prevent or treat
problems derived from physical disabilities (e.g.
spasticity, stiffness and limitations).*
39 Specific measures related to his or her mobility are
followed to enhance his or her independence.*
40 Specific measures are taken to prevent or treat pain.*
41 Special attention is provided to the diagnosis and
treatment of sensory disabilities that he or she might
have.*
42 Persons providing him or her supports give advice
and support regarding his or her sexuality.*
Material well-being
43 He or she receives all the financial benefits that
he or she is entitled to.
44 His or her personal stuff is replaced or fixed
when it deteriorates or gets damaged.
45 His or her housing has furnishings adequately
suited to his or her physical characteristics (e.g.
special armchairs, rocking chairs and mats).
46 He or she has a physical space where his or her
personal belongings are within reach.
47 The technical aids that he or she needs have been
individually adapted.*
48 The effect of technical aids in the functioning and
behaviour of the persons is assessed.*
49 He or she has the technical aids that he or she
needs.*
50 Persons providing him or her supports understand
the alternative communication systems that he or
she needs.*
51 He or she has his or her own things to entertain
himself or herself (e.g. games, magazines,
music and TV).*
52 He or she has the material goods that he or she
needs.*
53 He or she has the key or free access to his or
her bedroom, wardrobe and personal
belongings.*
54 His or her housing is adapted to persons with
limited mobility and to wheelchair users.*
55 Specific measures are taken to adapt the
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
environment where he or she lives to his or her
abilities and limitations (i.e. sensory, cognitive,
behavioural and physical).*
56 Specific measures are taken to adapt the
environment where he or she lives to his or her
wishes and preferences.*
57 Specific measures are taken in his or her housing
to avoid risks such as blows, falls and escapes.*
Rights
58 Persons providing him or her supports have
specific training on ethics and respect for
persons with disabilities rights.
59 In the service that he or she attends, the person
and his or her legal guardian are informed about
the application of physical and mechanical
restraint measures if needed.
60 Persons providing him or her supports treat him
or her with respect (e.g. talk to him or her in a
respectful tone, do not infantilise him or her,
use positive terms, avoid negative comments in
public and avoid talking about the person as if
he or she were not present).*
61 He or she is exposed to exploitation, violence,
abuse or neglect.*
62 In the service that he or she attends, his or her
rights are respected (e.g. confidentiality and
information on his or her rights as service
consumers).*
63 The service that he or she attends has the legal
authorisation to use physical restraints if needed.*
64 He or she knows and understands his or her
individually adapted book of rights.*
65 The service that he or she attends respects his or her
privacy (e.g. knock before entering, close the door
when he or she is having a shower, when he or she
goes to the toilet or when change his or her diapers).*
66 The service that he or she attends has a room where
he or she can be alone if he or she wants.*
67 All his or her required personal documentation,
benefits and assessments are in order.*
68 Specific measures are taken to respect his or her
privacy (e.g. during personal care and hygiene and
in relation to confidential information).*
69 He or she is treated with respect in his or her
environment.
70 In the service that he or she attends, his or her
belongings and right to property are respected.*
 Journal of Intellectual Disability Research
16
L. E. Gómez et al. • Quality of life for adults with severe disabilities

71 Other persons take or touch his or her things without emotional and motor).*
permission.* 88 In the service that he or she attends, when trying
72 In the service that he or she attends, his or her rights to improve his or her development, respect for
are respected.* his or her personal needs and preferences is
73 The service that he or she attends keeps his or her shown (e.g. avoiding understimulation and
personal information private (e.g. photos and life overstimulation).*
stories).* 89 He or she acquires new skills or experiences
through his or her involvement in activities.*

Personal development
Social inclusion
90 He or she has opportunities to go to other
74 Persons providing him or her supports have
environments, different from the place where he
data about his or her developmental potential in
or she lives (i.e. travelling, making trips and
different areas (e.g. social, emotional, motor
tourist routes).
and cognitive).
91 He or she enjoys holidays in inclusive
75 He or she has a plan of activities that he or she
environments (e.g. hotel, park, country house,
likes and that contributes to his or her personal
beach, mountain, spa and theme park).
enrichment.
92 He or she has a plan of individualised supports
76 He or she receives individualised supports and
that all the staff knows and must carry out.*
attention (e.g. during the personal care, meals,
93 He or she participates in activities outside the
activities, therapies, stimulation, breaks and
service with persons outside his or her support
outside the service).*
context.*
77 The activities that he or she does enable him or
94 He or she participates in inclusive activities that
her to learn new skills.*
are suited to his or her physical and cognitive
78 He or she is taught things that are interesting to
conditions.*
him or her.*
95 He or she participates in inclusive activities that
79 He or she learns things that help him or her to
are interesting to him or her.*
be more independent.*
96 The activities in which he or she participates
80 In the service that he or she attends,
take into account the leisure and cultural
instructions and modelling are provided so that
facilities in the area.*
he or she learns new things.*
97 Specific measures are taken to offer as much
81 In the service that he or she attends, opportunities
variety in activities as possible (e.g. new activities
to demonstrate his or her skills are provided.*
depending on person’s preferences).*
82 He or she has developed new skills in the last
98 He or she participates in social activities outside the
2 years (e.g. related to motor, sensory, social,
place where he or she receives services or supports.*
emotional, intellectual, communicative or
99 Specific measures are taken to engage him or her in
personality development).*
community activities.*
83 He or she has opportunities to develop activities
100 He or she uses community environments (e.g.
independently.*
restaurants, cafes, libraries, swimming pools,
84 Specific measures are taken to maintain his or
theatres, cinemas, parks and beaches).*
her capabilities and skills.*
85 Specific measures are taken to teach him or her
new skills.
Interpersonal relations
86 He or she shows motivation while carrying out
some of his or her activities (e.g. by going to the
door, staff or group when they start).* 101 Persons providing him or her supports know
87 His or her development in different areas is the communication system that he or she
stimulated (e.g. cognitive, social, sensory, uses.

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
 Journal of Intellectual Disability Research
17
L. E. Gómez et al. • Quality of life for adults with severe disabilities
102 In the service that he or she attends, the best
ways to communicate information to him or
her (i.e. visual, tactile, auditory, olfactory
and taste) are identified.
103 He or she uses alternative communicative systems
if needed.
104 In the service that he or she attends,
activities to facilitate personal interactions
with other people with intellectual disability
are planned.
105 In the service that he or she attends, information
about his or her interactive style when he or she
meets someone new is provided.
106 He or she celebrates events that are important
to him or her and his or her significant
persons (e.g. birthdays and anniversaries).
107 In the service that he or she attends, activities
or supports that enable him or her to maintain
social interactions are planned.
108 He or she has social interactions with other
persons beyond his or her supporting
context (e.g. friends, acquaintances and
neighbours).
109 He or she maintains good relationships with
© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
other people with intellectual disability (i.e.
interpersonal exchanges that are pleasant to
him or her).
110 In the service that he or she attends, time
enough for him or her to answer is provided
during interactions.*
111 When he or she exhibits a specific behaviour,
its meaning is carefully analysed.*
112 Persons providing him or her supports check to
make sure if he or she understands them
correctly by analysing his or her reactions.*
113 Specific measures are taken to improve his or
her communication skills.*
114 He or she has opportunities to be alone with
his or her friends and acquaintances.*
115 He or she has opportunities to meet persons
outside his or her supporting context.*
116 Specific measures are taken to maintain and
extend his or her social networks.*
117 Opportunities for his or her family to
participate in his or her daily activities are
provided when both parties wish to do so.*
118 He or she can keep contact with his or her
family to the extent that he or she wants to.*