IS IT POSSIBLE TO ACCURATELY MEASURE THE QUALITY OF LIFE THAT PEOPLE WITH SEVERE AND PROFOUND INTELLECTUAL DISABILITIES EXPERIENCE?

by Vicky Andrews, Nurse Researcher, School of Nursing and Midwifery

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Introduction

Quality of life (QoL) for individuals with intellectual disabilities has been widely researched over the last two decades. Five researchers have been relatively prolific in writing papers and research articles: Felce, Perry, Hatton, Hensel and Cummins. There has been extensive research into measuring QoL for individuals with intellectual disabilities who are able to communicate, but very little research relating to QoL for people with intellectual disabilities who present with severe communication or comprehension difficulties. This article will explore current research in this area.

There are two major themes evident in the literature—discussions on the content of measurement scales, and appropriate approaches to measuring QoL for individuals with a severe or profound intellectual disability.

Recent policy context: Ireland

In 1995, a Working Group of the Federation of Voluntary Bodies Providing Services to People with Mental Handicap outlined recommendations for intellectual disability services in Ireland. A key recommendation of the working group suggested that the effectiveness of services should be measured alongside efficiency. This group also emphasised the need to constantly measure and evaluate quality through clinical audit and consumer surveys (Department of Health and Children (DoHC) 1995: 36). Another element considered important in making up a good-quality service is that service users’ needs should be met (DoHC 1995: 36).

This kind of thinking regarding the provision of quality services for people with intellectual disabilities in Ireland found its way into the key principles of the national health strategy, Quality and Fairness (DoHC 2001). The principles of the health strategy included people-centredness, effectiveness, service efficiency, quality and accountability. Despite the health strategy’s high ideals for the provision of quality healthcare, it is of note that very little paper within the report receives ink in relation to the provision of quality services for people with intellectual disabilities. In 2003, the National Disability Authority (NDA) published its report ‘Towards best practice in the provision of health services for people with disabilities in Ireland’. The NDA report sets out a range of standards that aim ‘to ensure that disability services in Ireland contribute to a measurable improvement in the quality of life of individuals receiving services.’ (It is important to mention that the proposed NDA standards are still awaiting ministerial approval within the Department of Health and Children.) The NDA suggests that according to Irish legislation, individuals with disabilities should have access to an independent advocacy service. Gates (2003) suggests that advocacy can be best described as the process of upholding the rights and interests of an individual by speaking or acting on behalf of another.

Comhairle currently offer an advocacy service for people with intellectual disabilities in Ireland; this service, however, is only available to persons who are not in receipt of services.

Incidence of people with profound/severe intellectual disabilities in the Republic of Ireland

According to the Intellectual Disabilities Database (Barron and Mulvany 2003), 3977 people in Ireland have severe intellectual disabilities and 1064 have profound intellectual disabilities. The overall number of people with intellectual disabilities as recorded in 2003 is 25,557. It is also important to note that only people currently in receipt of services are accounted for in the database.

What is the purpose of measuring quality of life?

The purpose of measuring individuals’ (QoL) is

  1. To evaluate service delivery;
  2. To enhance services to consumers, relating to satisfaction and needs of individuals; and
  3. To safeguard vulnerable groups in society. (Felce and Perry 1995).

A perception of anyone’s own QoL is built on the subjective experience of objective conditions. To objectively assess QoL, it necessary to consider aspects outside of the mind—i.e. external factors. Such factors may include nutrition, the condition of buildings, and wealth. Subjective assessments describe our personal feelings towards the lived experience of these objective aspects. These subjective experiences are abstract concepts, which are extremely difficult to measure for individuals who have difficulty with comprehension and communication—as is the case for people with severe and profound intellectual disabilities.

Quality of life measures according to Felce (1997) attempt in some way to determine how a number of interrelated factors when computed together affect an individual’s overall wellbeing. Figure 1. Below illustrates the many factors which may require measurement.

Objective aspects of quality of life measurements

Current service models are philosophically based on normalisation and valued social roles (Wolfensberger 1972, 1983) or the ‘five service accomplishments’ (O’Brien 1987). These models of care attempt to expose people with intellectual disabilities to a ‘normal’ pattern of life, which previously had not been considered important. Such an approach to service provision ensures that decent standards of living and service provision are upheld. These service provision philosophies have been paramount for vulnerable groups, particularly individuals with severe cognitive impairments such as dementia, Alzheimer’s disease, brain injury, chronic psychiatric illness or severe/profound intellectual disability (Felce 1997). Many services espouse the concept of inclusivity—where individuals with intellectual disabilities are involved in service planning and evaluation. However, this approach requires some form of communicative ability on the part of the service user and is often absent in service provision for clients who present with severe and profound intellectual disabilities. It might be presumed, then, that if people with severe and profound intellectual disabilities were able to self-report their needs, this might have an impact on their quality of life.

A limitation of using objective measures alone is that of replacing the autonomy of the individual with an imposed external framework of QoL (Felce 1997). Objective assessment imposes a way of life on individuals and takes away the individual’s choice on how they might wish to live (Felce 1997, Vreeke et al. 1997). For example, if an individual wishes to withdraw from the wider community, by their own choice, a framework should not assume that a good QoL means being an active member of that community. In order to understand how individuals want to live their lives, it is necessary to find out their aspirations and needs. For the most part this requires some form of communicative ability, which might not always be evident in this client group. Ideally, alternative creative measurement approaches to overcome such communication difficulties are needed.

Subjective aspects of quality-of-life measurements

In order to delve deeper into quality-of-life issues for individuals with severe and profound intellectual disabilities, researchers must measure subjective experiences of life. Felce (1997) suggests an individual’s own view of their life, rather than an objective framework, will more ‘sensitively’ measure QoL. Individuals can be asked questions about their satisfaction with life. Again this approach requires some level of communication, thus making this measurement strategy, without modification or adaptation, difficult to use with people with severe and profound intellectual disabilities. Frequently measurement tools use Likert scales, which permit the researcher to aggregate scores in life domains. Tools which measure quality of life should contain a range of domains that can be applied to society as a whole, regardless of the different issues presented by individuals. This may reduce the marginalisation of individuals with severe intellectual disabilities.

All the subjective methods for measuring QoL mentioned in existing literature use some form of measurement procedure: questionnaires, tests, surveys, etc. Hewitt (2000) suggests ‘hearing’ life stories, which may be recorded and surveyed for similar strands. This is seen by some as a narrative approach. The use of this qualitative method of gathering data can enhance individuals’ lives because the data generated can be analysed to indicate ways of promoting empowerment and choice in people’s lives.

Methods of gathering QoL information for individuals with severe and profound intellectual disabilities.

Gates (2003: 312) defines a person with profound learning disability as
‘an individual who requires maximum assistance in all aspects of everyday life, in terms of 24-hour care and supervision. For example the person may have difficulty in communication, eating and drinking, continence and mobilization’.

Whittaker (1989) suggested that such individuals have a developmental age of less than three months, as measured on the Griffiths Developmental Scales (1954). Whittaker questioned the relevance of trying to make such individuals as independent as possible, and whether one could meaningfully improve their QoL, given this client group’s inability to communicate their values or needs conventionally, or at all. This type of approach puts into question the inclusivity of using consumer surveys in order to reliably meet the needs of service users who have severe/profound intellectual disabilities.

Much has been written by researchers in their attempts to consider the ‘problem’ of measuring QoL for individuals with severe or profound intellectual disabilities, but few have actually addressed that ‘problem’—and there are fewer answers. Four approaches to evaluating QoL for this group were found, including proxy reports, observation methods, experiential approaches and purely objective methods.

How do we determine if an individual has the ability to communicate and answer for him/herself? Cummins (1997) included a pre-test in his Comprehensive QoL Scale-Intellectual Disability. This evaluates what level of complexity the individual (to whom the test is to be administered) can reliably comprehend. Subsequently that level of complexity is applied throughout delivery of the subjective test.

Proxy approaches to gathering QoL information relating to individuals with severe and profound intellectual disabilities

Proxy reports can provide another way of assessing QoL for an individual. A proxy is defined as ‘one who acts or votes for another’ (Chambers 1998: 452). Petry, Maes and Vlaskamp (2005) have attempted to create a number of domains to measure QoL for people with profound multiple disabilities using proxy reports (i.e; the perspectives of parents and direct support staff.)

Proxies can be extremely useful, especially if he/she is a person who has no stake in the service in which the client lives (Addington-Hall and Kalra, 2001). Some might see this as a service advocacy approach. Such proxies or advocates may be more able to see areas of improvement than staff members who have ‘a constant struggle to see what is under one’s nose’ (George Orwell, as cited by Ritchie 1996: 91). However, caution must be exercised when considering proxy responses. Lefort and Fraser (2002) note that imagining someone’s experience can have little relationship to subjective experience. They also question how similar might the individual’s own answer be to that of the proxy? This has huge implications for reliability and validity. Another issue that needs to be considered regarding this type of approach concerns the legal position of the proxy or advocate?

Observational approaches to gathering QoL information relating to individuals with severe and profound intellectual disabilities

Observational methods of measuring QoL are similar to a proxy response, in that they also rely on a third party to make judgments regarding subjective aspects. Most often this method involves a researcher observing the behaviours of an individual. Behaviours are classified into categories which can be related to expressions of satisfaction or dissatisfaction. Information is gathered about perceived interest in activities, using methods such as levels of challenging behaviour; self-injurious or stereotyped behaviour; carer perceptions of satisfaction; and concentration levels. Analysis can then show the percentage of time that an individual is satisfied/dissatisfied. The results of this method may lead to modifications of the individual’s activities. It may be presumed that such modifications will have some effect on the individual’s QoL.

Experiential approaches to gathering QoL information for individuals with severe and profound intellectual disabilities

Experiential approaches to measuring QoL attempt to qualitatively examine aspects of an individual’s life. The method presents an alternative approach that examines identities of people with intellectual disabilities. Vreeke et al (1997) explain this approach as a means of balancing life between positive experiences that give pleasure/happiness and negative experiences that give pain or sorrow. This method can encompass all levels of intellectual disability. One method used in this approach is that of life-story books (Hewitt 2000). Relatives or carers, by way of interview, tell the stories and this information is recorded or written down. This becomes a shared experience between the carer/relative and the individual with an intellectual disability. This method is highly individualised and looks closely at the importance of social roles (Hewitt 2000; Lefort and Fraser 2002).

Evidence pertaining to QoL for individuals with severe or profound intellectual disability

Of the research articles examined pertaining to QoL in relation to people with intellectual disabilities, seven specifically measured QoL for individuals who had the ability to comprehend and communicate, where interview techniques were used to gather information. This clearly does not fully represent QoL for the population of people with an intellectual disability. Such methods of gathering data do not allow individuals who cannot communicate and comprehend to participate.

Felce et al (1999) conducted a comprehensive and valuable quantitative study on the objective quality of 15 residential homes and 17 day centres for people with intellectual disabilities. The study found that the quality of observed aspects of life was linked directly to ability. The results of this study show that the more severe the intellectual disability of the individual, the more they were segregated and under-occupied in residential and day-service settings. This contention is also supported by an earlier study conducted by Perry and Felce (1995), which found that in fifteen community houses those with more severe disabilities were given substantially fewer activities.

In another study carried out by Longley and Collins (1994) individualised behavioural observations were used as a means to assess satisfaction. The subjects of the study were individuals who were unable to express themselves verbally and had severe or profound intellectual disabilities. The research measured individuals’ behavioural reactions to activities. The data was then correlated with behaviours which staff believed expressed happiness, unhappiness or boredom. The results were found to be significant in assessing individuals’ preferred activities and areas of particular dissatisfaction. A limitation of Longley and Collins’ study could be that staff may have been more inclined to indicate happy behaviours, as they may gain more satisfaction from positive responses, and they also may notice these more readily.

Conclusion

This article examines current research literature relating to the methodologies used to measure QoL experiences for people with intellectual disabilities. There have been very few studies relating to QoL issues for people with severe or profound intellectual disabilities, many areas of research remain to be investigated. Future research should focus on the need for empirical evidence. QoL theory needs to develop a consensus on the core dimensions of quality of life (Felce and Perry 1995, Lefort and Fraser 2002). Further research is vital to develop more reliable methodologies for assessing the quality of life for people with severe disabilities (Campo et al 1997). Felce and Perry (1995) have pointed out the need to investigate the validity of proxy responses in this client group. Petry, Maes and Vlaskamp’s (2005) recent work would appear to have commenced an exploration of proxy reporting which will inform the debate on these issues. Hatton (1998) suggests moving away from the concept of QoL altogether. However, Ritchie (1996) contends that it is of paramount importance to measure the QoL of individuals with severe or profound intellectual disabilities, as they are often most in need of improved services.

Staff working in residential/day centres already know whether they are meeting the basic human-rights standards of individual clients—such as respect, privacy and dignity. When developing methods to evaluate services and QoL issues, individuals with intellectual disabilities should be involved. If the people to whom services are provided are not involved in the development of meaningful QoL measures, then it must be said that we are only paying lip service to the concept of inclusivity.