Paper 6: Quality of Life of Young People with Intellectual Disability in Ireland

Maureen D’Eath and Maria Walls, National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability

Margaret Hodgins and Mary Cronin, National University of Ireland Galway

Introduction

This project focuses on the quality of life of teenagers with intellectual disability in Ireland. Recently, there has been increased focus on improving the health and quality of life of children and young people (e.g. Best Health for Children, 1999: National Health Promotion Strategy, 2000: Our Children – Their Lives, 2000) and within this, the need to consult with children and young people about services and initiatives intended to improve their health and lives generally. There has been significant development in research exploring factors impacting on children’s well being in the recent longitudinal study on the well being of children. Quality and Fairness (2001) the current national health strategy places considerable emphasis on increased person centered services which include assessing service user perspectives on needs and service provision. Thus, quality of life assessment has become an important element in health services.

Young people with disabilities constitute a significant proportion of the population of young people. Research exploring factors that impact on positive quality of life outcomes for children and young persons with intellectual disability has been minimal in Ireland to date (Lawlor, 1999). Crucial needs remain unmet and may require a consequential shift in resources for this to become a reality (Towards an Independent Future, 1996, Strategy for Equality, 1996).

Quality of Life is increasingly being used to plan, deliver and evaluate services for people with intellectual disabilities. It has its roots in the ‘normalisation’ and ‘inclusion’ movements and its influences can be seen in legislation, policies and programmes that aim to improve the lives, personal satisfaction, success, community membership and participation of individuals with disabilities (Silvana et al., 2002). It is considered a potentially unifying concept for service providers allowing them to assess the value of their programmes by the impact that they have on the quality of the services users’ lives (Felce, 1997). To successfully secure equal citizenship and promote positive quality of life for young people with intellectual disability we need to explore what supports are required for such outcomes and what barriers young persons perceive may exist in their environment in the attainment of that quality of life.

Project Aims

The project aimed to:

Consult directly with children and families in order to develop new approaches towards positive quality of life outcomes.
Identify perceived supports to positive quality of life outcomes for young persons with disability to live full and active lives.
Identify perceived barriers to such outcomes for young persons.
Highlight areas where change is required.

The project was funded by the Heath Research Board, and substantially supported by the Health Services National Partnership Forum. The project represented a partnership between the National Federation of Voluntary Bodies and the National University of Ireland, Galway. It was supported by an Advisory Board made up of academics, experienced researchers and professionals in the field of Intellectual disability.

Methodology

The social model of disability informed the work of the project, the principles of health promotion and by emancipatory research. The social model of disability places the emphasis not on individual impairments as the source of disability but on the way in which physical, cultural and social environments exclude or disadvantage people who are labelled disabled. (Barnes 2001). The social model separates out disabling barriers and impairments. The action required to vindicate a person’s right will differ according to situations (Oliver 1990): “Sometimes it’s about being treated the same as everyone else, sometimes it’s about being treated differently so that we can then achieve the same things as everyone else” (Morris 2000).

The principles of emancipatory and participatory research were realised by providing an opportunity for young people with intellectual disability in Ireland to inform the research process from the early stages of the project. The young people, along with their parents, siblings and key workers, provided the information from which the qualitative interviews were developed. Other adolescents with intellectual disabilities were directly involved in the second phase of the project as they were interviewed individually. Each adolescent had an opportunity to contribute their perspective on an equal basis to all other participants to this study. Notwithstanding the challenges posed by such principles – particularly when dealing with children, young people (Ward 1997) and with persons with intellectual disability, the whole project is fundamentally inclusive of teenagers with an intellectual disability and their families. It is also intended that the research findings will be disseminated in an accessible format and, where possible, by young people themselves. The Project Process was undertaken in the following steps:

Literature Review
Data collection – Phase 1
Decisions on methodology for phase 2
Data collection – Phase 2
Analysis - 3,165 Questions
Preparation of Reports

The final report is due to be issued shortly - this paper provides an overview of the project.

Literature Review

In order to fully inform the conduct of the project an extensive review of the literature was carried out. As the project is concerned with the quality of life of adolescents with intellectual disability in Ireland today, it was necessary to review that literature which relates to the concept of quality of life and that which relates to the relevant issues that arise during the period of adolescence and the related matters of friends, leisure and self development. The research reviewed literature in the following two main sections:

Quality of Life: to establish how this concept has been developed and to consider the debate about the values of subjective and objective indicators of quality of life. The review will also examine the emerging consensus on the conceptualisation, measurement and application of the concept of quality of life of people with intellectual disability.

Adolescence within Life Span Development: to consider how adolescence is defined and to examine adolescence as a period of transition. Aspects of the adolescentexperience both generally and as they pertain to adolescents with intellectual disability, are examined, including aspects relating to Friends, Leisure and Self Concept.

Quality of Life

The concept of Quality of Life has been developed over many decades and applied to a wide range of target groups and whole populations. Although widely used, it is often poorly defined (McGee, 1999; Zissi and Barry, 2004), leading to conceptual confusion and limiting practical application. Raphael (2001) identifies two distinct approaches to the study of quality of life. The first, the health-related approach, the second, the social indicators approach. This study is set within the social indicators tradition, focused, as it is on broad environmental determinants of quality of life and individual appraisal of life quality in a general every day living context.

Defining and measuring the quality of life of people with intellectual disability extends through the past 20 years (Schalock et al., 2002). Schalock (1990), one of the key researchers in the field of quality of life for people with disabilities, defines quality of life as: “the outcome of individuals meeting basic needs and fulfilling basic responsibilities in community settings (family recreational, school and work). Individuals who are able to meet needs and fulfil responsibilities in ways satisfactory to themselves and to significant others in community settings experience a high quality of life in those settings”.

As we said earlier, Quality of Life is increasingly being used to plan, deliver and evaluate services for people with intellectual disabilities, and consensus is now emerging about the conceptualisation, measurement and application of the concept to people with intellectual disabilities (Victoria Department of Human Services, 2001). One of the key issues in the Quality of Life debate has been the value of objective and subjective indicators. The major value of the measurement of objective indicators is their value for comparison purposes allowing quality of life or service measurement for persons with developmental disabilities to be anchored to a baseline provided by the general public (Cummins, 1994).

Objective indicators, however, take no account of the value or otherwise that any individual may place on any of the specified indicators. Taylor and Bogdan (1996) unambiguously stated: “Quality of life is a matter of subjective experience. The concept has no meaning apart from what a person feels and experiences”. Accordingly, increasing emphasis has been placed on incorporating individual perspectives - more recently a ‘goodness of fit’ approach has been taken to assessing quality of life. This approach reflects on how well the current environment suits the individual and thus represents an important advance on deficit driven approaches (Victoria Department of Human Services, 2001).

It has been further argued that the satisfaction that an individual ascribes to any aspect of their lives can only be judged alongside an expression of the importance that they attach to that particular aspect. If health status is not perceived as important to an individual, then they will express satisfaction with a level of health intervention that may be unacceptable to other persons. In 1992 Cummins suggested that objective and subjective assessments should be considered alongside personal valuation by the individual of the importance of the factors under consideration. In the same vein, Felce & Perry (1995) proposed a three-element model to reflect the interaction of life conditions, satisfaction and personal values in the determination of quality of life:

Life conditions are the objective description of individuals and their circumstances
Subjective well being refers to personal satisfaction with such life conditions or lifestyle.
Personal values and aspirations are the relative weights or importance which an individual attaches to various aspects of their objective life conditions or subjective well-being

The Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities presented their consensus understanding about the conceptualisation, measurement and application of the concept of quality of life of people with intellectual disabilities (December 2002). They agreed that quality of life:

Is composed of those same factors and relationships for people with intellectual disabilities that are important to those without disabilities;
Is experienced when a person’s needs and wants are met and when one has the opportunity to pursue life enrichment in major life setting;
Has both subjective and objective components, but is primarily the perception of the individual that reflects the quality of life he/she experiences;
Is based on individual needs, choices and control
Is a multidimensional construct influenced by personal and environmental factors, such as intimate relationships, family life, friendships, work, neighbourhood, city or town of residence, housing, education, health, standard of living and the state of one’s nation

This international group stated that any quality of life instrument should measure the degree to which life’s domains contribute to a full and interconnected life, that each domain should encompass a substantial but discrete portion of the quality of life construct. They also argued that the main domains are the same for people with or without disabilities although some may vary to be appropriate to special needs. They identified the eight core domains as being:

Physical well-being
Emotional well-being
Interpersonal relations
Material well-being
Personal development
Self-determination
Social inclusion
Rights

In summary, Quality of Life is a universal concept that is experienced individually by every single person. It is a multidimensional construct influenced by both personal and environmental factors, including intimate relationships, family life, and access to work and educational opportunities, resources and facilities. It has both subjective and objective components, but is primarily the perception of the individual that reflects the quality of life he/she experiences. The concept is as relevant to people with intellectual disabilities as it is to all other persons in a society, although some particular considerations pertain when measuring the quality of life of this sector of the population. Strategies exist to maximise the validity of quality of life data collected from people with intellectual disabilities and for those individuals whose capacity to actively participate is reduced, consideration may be given to the use of proxies.

Adolescence

This study, although reviewing a wide scope of adolescent theory, focuses particularly on psychosocial aspects of development in adolescence, in the context of family, school and community. Adolescence is viewed as a transition from childhood to adulthood, and a means of preparation for the tasks of adulthood, such as employment and parenthood. Generally, identity formation, increasing independence and individuation from the family, and expanding peer relations are widely agreed to be the key issues in adolescent psychosocial development.

Steinberg (2001) identifies five sets of psychosocial concerns that, while they are important throughout the entire life cycle, assume special significance during adolescence. He classifies the five issues as:

identity: an adolescent discovering and understanding him/herself as individual;
autonomy: the adolescent establishing a healthy sense of independence;
intimacy: the adolescent forming close and caring relationships with other people;
sexuality: enjoying physical contact with others and expressing sexual feelings;
achievement: the adolescent becoming a successful and competent member of society.

Young people with intellectual disability may experience the need for independence in the same way as their peers without disability. Yet their desire for increased autonomy may be thwarted by their continued reliance on parental support. The high level of parental involvement in the lives of children with intellectual disability, which continues into adulthood, may render individuation from parents particularly difficult.

Friendship and Peer Relationships

In exploring the development of autonomy and individuation from family during adolescence, both friendship and peer relations merit particular attention. Peer groups usually form during early adolescence consisting of a clique of about six teenagers of the same sex who share common interests and activities. Brown (2000) finds that peer groups perform special roles in the transition to adulthood, which are:

Assisting in the negotiation of relationships with the opposite sex, for example, establishing the ‘rules’ or norms of behaviour and interaction.
Providing support in the task of adjusting to new environments, for example to secondary school or pre-third level.
Functioning as a sort of mirror, helping adolescents gauge how others will see and interpret their behaviours, assisting with the process of self-definition
Providing a sounding board for exploring and defining values and aspirations

The principles that underpin friendship are equality, mutual caring, mutual respect, mutual trust and, most importantly, symmetrical reciprocity. Thus, through friendships, adolescents are able to experience themselves as individuals outside their families. People with intellectual disabilities have the same capacity to be friends. However, while many people with intellectual disabilities have fulfilled and satisfying social lives, studies have consistently highlighted substantial loneliness and isolation. Guralnick(1999) estimates that over 50% of children with mild developmental delays have ‘substantially poorer peer-related social competence than would be expected given their individual developmental levels’. With limited social experience, the effect of social skill deficits can carry through into adolescence.

The barriers that hamper people with disabilities from making and maintaining meaningful friendships have been established and are identified consistently throughout the relevant studies. Limited opportunities for contact lack of transport lack of autonomy, and lack of access to or ability to use telecommunications all conspire to give young people with disability little experience of friendships.

Leisure activities: a context for expanding friendships and peer relations

Leisure activities provide an important context for making and maintaining friendships and providing opportunities for more general peer group interaction. Positive outcomes of leisure and recreation are identified as including opportunities to enhance or develop social relationships, to be creative, to enhance social communication, to promote personal development and to aid self-actualisation. Apart from family and school, leisure is a central feature in the lives of most adolescents and it is generally reported as the most enjoyable activity in their lives. It has been calculated that 40% of adolescents’ waking hours are spent at leisure (Steinberg 1996).

Talking with friends has long been recognised as one of the most popular ways for adolescents to spend their leisure time and much of it may take place in informal settings such as shopping centres or street corners (Fine et al, (1990). Passmore (2001) used responses from teenagers to develop a three-factor classification of adolescent leisure. Leisure was classified as:

achievement leisure which incorporates activities that provide a sense of personal challenge including sports, playing music, dance and creative arts
time-out leisure which is characterised as relaxing, with undemanding pursuits that were usually undertaken alone such as listening to music, watching television and lying in bed
social leisure which was rated as the most enjoyable form of leisure and includes talking and talking on the telephone, visiting, eating with friends, going out with friends and just ‘hanging out’.

Leisure is not just about ‘structured activity’ for adolescents - it is more about "mutually enjoyable relationships". Adolescents with intellectual disabilities have the same amount of leisure time as adolescents without disability, however they may spend it very differently. Their leisure activities are certainly more organised than are their peers.

In summary, adolescence may be characterised as a period of transition from childhood to adulthood. A young person with intellectual disabilities may experience adolescence in much the same way as their peers without disability experience it. Many of the issues of concern are common to both groups including those of identity, friendship and leisure activities. While these issues may be considered separately, their interconnectedness is apparent. An adolescent’s sense of self may be developed by reference to how they are perceived by others and, in particular, their peers. Adolescent friends and peers provide each other with the security to individuate from families and establish adult identities. Friends are central to the satisfying enjoyment of leisure and leisure, in turn, facilitates the expansion of an adolescent’s social circle. Specific issues may also arise for adolescents with disabilities during this period and it is, therefore, particularly relevant to consider their quality of life at this particular life stage.

Phase 1 – Focus Groups

The project was conducted in two phases. Phase One comprised a series of focus groups with teenagers and their parents to inform the development of a questionnaire for Phase 2 and an evaluation of standardized questionnaires on Quality of Life to assist the selection of an appropriate quantitative instrument to administer in conjunction with the questionnaires in Phase 2.

During the first phase of the project, interviews and focus groups were conducted with:

teenagers with intellectual disabilities (3)
teenagers without disabilities (1)
teenagers with and teenagers without intellectual disabilities (1)
parents of teenagers with intellectual disabilities (2) and
support workers of teenagers with a very significant level of intellectual disabilities

The participants were identified by member organisations of the National Federation of Voluntary Bodies. The interviews were conducted in various locations throughout the country. The participants were from both rural and urban areas and reflected the relevant age range (13-18) and a wide range of level of disability. The key issues to emerge during the analysis of the focus group data were:

Friends
The Future
Family
Leisure and Independence

A key aim of the focus groups was both to identify those issues that are important to the quality of life of the adolescents and also to determine the barriers and supports that they perceived as having an impact on the enjoyment of a good quality of life. However, the analysis of this data showed that while the teenagers clearly identified those issues that were important to them, they did not identify barriers and supports. It was only through the discussions between the parents that the existence and extent of the barriers was revealed and that some of the existing or required supports were identified. This lead to a reconfiguration of the methodology to be deployed.

Initially, the proposed second phase of the project was to involve the administration of a standardised Quality of Life instrument and a Quality of Life questionnaire to 1,000 young people, their parents and carers and a series of in-depth interviews. It was intended that the Quality of Life questionnaire would be developed from the focus group data. Concern that barriers and supports may not emerge from interviews with the teenagers led the Advisory Board to strongly recommend a reorienting of the second phase of the project to a more in-depth qualitative approach. As few Quality of Life studies have been carried out to date with adolescents with intellectual disabilities in Ireland, it was considered that qualitative research methodology is the most appropriate for the essentially exploratory nature of this project. It was agreed to concentrate on a three priority topics: friends, leisure/social activities and self. The redirection of the project allowed for a more exhaustive exploration of a number of prioritised themes and the opportunity to explore the barriers and supports in more depth.

Standardised Questionnaire

Parallel to the collection and analysis of the qualitative data, an evaluation was carried out on the standardised questionnaires designed to measure Quality of Life. In 2000, Cummins listed 550 instruments designed to measure Quality of Life and Cognate Areas. A Review Group for the State of Victoria reviewed 35 of these in detail to identify any existing instrument that would be appropriate for a large-scale assessment of the quality of life of individuals with a disability and the resource implications of carrying out such a measurement. This Australian study found that: “very few (if any) published methodologies were found to be suitable for universal use without modification in the Victorian State-funded disability context.”

For the purposes of this study, three instruments were agreed by the Advisory Board as the most suitable to be administered alongside the questionnaire developed from the focus group data. These were:

The Comprehensive Quality of Life Scale (Cummins, 1997)
The University of Toronto Quality of Life Profile for People with Developmental Disabilities (Raphael et al 1997) and the
Quality of Life Questionnaire (Schalock & Keith 1993)

The option of devising a new questionnaire was considered but not proceeded with, as time constraints would not allow for the adequate testing of the psychometrics of the instrument. Each of the above instruments was examined in considerable detail and it was disappointing that none proved to be ideal for the purposes of the project. The Cummins scale met the requirements of the project but was subject to caveats issued by its author in 2002 (Cummins 2002). Despite this, the instrument has many positive features: it has a very useful pre-testing protocol for use with persons with intellectual disabilities, it is quickly and easily administered, it’s psychometrics are established and it has norms for persons without disability. The Advisory Board decided that, in the context of it being used alongside a well-devised interview schedule from the focus groups, that the Comprehensive Quality of Life Scale – Intellectual/Cognitive Disability (Cummins 1997) should be included as a component of Phase Two of the project.

In this way, the scales relevance and usefulness as a measure in this context can be assessed for future research. The Intellectual/Cognitive Disability version of the COMQOL contained some questions that were not appropriate to an adolescent sample. Therefore, it was decided that those questions would be replaced by the corresponding questions on the parallel adolescent version of the COMQOL.

Phase Two - Sampling

It was intended that this comprehensive insight would provide clear indicators about what is important to these young people and what is currently blocking or supporting their ability to lead full and active lives. This multi-faceted approach consisted of semi-structured interviews with:

Each teenager using a schedule developed from the focus group data
A parent who will discuss the issues from the perspective of their son or daughter
A sibling who will discuss the issues from both the teenager’s perspective and their ownperspective
A key worker
Each teenager or his or her advocate also worked with the interviewer to complete the Comprehensive Quality of Life Scale – Intellectual/ Cognitive Disability.

Member organisations of the National Federation of Voluntary Bodies were contacted and asked to become involved in the Project. Eleven organisations participated in Phase two of the Project and their locations represented a wide geographical spread. The organisations were asked to nominate an experienced psychologist or social worker who would identify the families to be interviewed and who would also carry out the interviews. In each case the interview was carried out by an experienced psychologist who knew the adolescent; this meant that issues of verbal skills and / or unfamiliarity were minimised. The researcher requested the psychologist or social worker to select the participants according to the project requirements of a broad sample incorporating the spectrum of disability, both genders and an urban/rural mix. Each interviewer was supported and briefed by the study’s full-time researcher, to maximise consistency across the interviews. The participating psychologists were provided with a comprehensive range of materials prior to their initial contact with the families, and a protocol for the procedures of the project was agreed.

Eighteen teenagers participated in the second phase of the project. The age range of the teenagers was between twelve and nineteen. Twelve of the teenagers were male and six were female. Two teenagers attend mainstream schools and the others are in special schools. One teenager was classified as having a ‘severe’ degree of intellectual disability, two were classed ‘mild-to-moderate’, and eight were classed as ‘moderate’ and seven as ‘mild’. Two of the teenagers were interviewed through a proxy who was asked to respond from the perspective of the teenager; one proxy was a key worker and one was a parent of the teenager. In addition eighteen parents were interviewed, comprising fifteen mothers and three fathers. Fifteen siblings participated, nine of whom were sisters and three of whom were brothers. Seventeen key workers were interviewed. Eleven of the key workers were involved with the teenagers in an educational situation and seven were involved within a respite or supported living situation.

Findings

The analysis of the data was grounded in the concept of Quality of Life in adolescence and the key features of these concepts were used to create a framework for analysis. The data from the Comprehensive Quality of Life Scale (COMQOL) interviews was scored and analysed in accordance with analysis procedures specified by the author. The qualitative interviews sought to gather detailed information in relation to a range of factors influencing the quality of life of adolescents with an intellectual disability in Ireland.

The questions were also designed to focus on factors pertinent to the period of adolescence. In the final report, the findings are presented under the following four themes, whish are closely related to the interview structure:

Sense of Well-being and Sense of Self
Friends, Peers and Community
Leisure and Recreation
Choice, Responsibility and Skills for Independence

However it is not possible to review these here so we will briefly describe the overall emergent themes.

Emergent Themes

Three major themes emerged from the qualitative data; these were ‘Social Isolation’, ‘Reliance on Family’ and ‘Progress towards Adulthood and Independence’.

Social Isolation

The study found that a small number of adolescents with an intellectual disability have a high level of community involvement and they, and their significant others, consider them to be well known and popular members of their community, deriving pleasure from community contact. Where ‘community’ appeared in responses it appears to refer to a local, geographical community. However the majority of adolescents in this study experience a significant degree of social isolation, which is influenced by a range of factors. The theme of social isolation is among the most dominant theme in the data.

All of the teenagers said that they had friends and most said friendship was important to them. Many described their friends in terms of enjoyment and reciprocity and clearly valued their friendships highly. Most of the other respondents agreed that the teenagers had friends. All teenagers said they had friends in school and also in respite care or supported living, if they availed of these. Despite the acknowledged importance of their friends, teenagers have very few opportunities to meet their school friends outside school hours and many never see their friends except at school or in respite. Parents repeatedly called for more activities to be organised by the school or service providers and one asserted that parents would be very willing to assist with these activities once they had been organised. Distance was identified as a major barrier, as was transport.

Reliance on Family

Adolescence is a period when teenagers begin to develop new relationships with peers, which have an impact on their relationship with their parents and siblings. Significant others, particularly friends and peers, become increasingly important as sources of friendship, social contact, new knowledge, and new experiences. Yet this study has found that adolescents with an intellectual disability do not follow the typical norms of adolescence outlined in international literature; they maintain very strong relationships with their family, particularly to parents but also to siblings. In fact there is some evidence of an increasing rather than decreasing dependence on family.

Outside of school and / or respite care the teenagers socialise exclusively or predominantly with family members and friends of family members. Some teenagers expressed a desire to spend more time with their friends. A few of the teenage boys appeared to have particularly close relationships with their fathers sharing their hobbies and their friends. Teenage boys tended to spend more time with siblings and friends of siblings than did teenage girls even when the friends of the siblings were said to just ‘tolerate’ or ‘humour’ the teenager.

A few of the teenagers in the study discussed or alluded to episodes of bullying and these usually referred to name calling or ‘mocking’. One girl spoke at length about the way in which her friends sometimes excluded her and the hurt, which this caused her. However, bullying was an issue that was more commonly raised by the other respondents. Some of the bullying took place within the schools and one key worker discussed how well the ‘system’ had dealt with the problem when it had been identified. No teenager referred to bullying outside the school situation even where family members confirmed that such incidents had happened. Some parents curbed their teenager’s independence because of worries about how the teenager would be treated. Family members were seen as offering protection to the teenagers and some teenagers benefited from the reflected respect that others felt towards the family of the teenager.

Progress towards Adulthood and Independence

The findings reinforce the inextricable connections between friendships and leisure and in particular the importance of leisure activities during adolescence. The themes of reliance on family and lack of accessto friends predominate the participants’ considerations about leisure. Some of the teenagers were considered to have a satisfying leisure life. One young man’s life is so full that he does not have the space to take on more activities: “he has a very busy life – out andabout a lot of the time, his brothers and sisters bring him out a lot”. Most of the others who were portrayed as having a fulfilled social life either enjoyed a high level of casual local contact or were involved in mainstream clubs or social activities. These were the teenagers who had the most frequent contact with other young people of their own age group in their own localities with whom they shared mutual interests.

The overwhelming majority of the participants considered that it was important for the young people to have things to do and places to go. Such high levels of satisfaction may be a product of low expectations or may represent a resignation to a perceived reality of the teenager’s lives: “he needs somewhere to go but there is nowhere”. Most of the teenagers participated in age appropriate leisure activities such as swimming, bowling and the cinema. The teenagers who avail of respite services had access to a wide range of community facilities.

With important exceptions, many of the teenagers were portrayed as passive participants in their own leisure lives. Most teenagers did not have opportunities to make positive choices with respect to their leisure experiences and only had the possibility to opt out of activities rather than the opportunity to become involved in pursuits of their choosing. Many parents called on service providers to organise events and activities but most responses suggested a sense of inertia concerning the whole area of leisure and recreation. No teenager was involved in a strategy to use leisure as an opportunity for personal development or as an opportunity to expand social interaction.

Sexuality and Intimate Relationships

Adolescence is a period of awakening and discovery in relation to sexuality. While the interview did not contain any questions specifically related to sexuality some replies alluded directly and indirectly to this topic. Overall however, the level of mention of sexuality was low considering the age group under consideration. Within the interviews, one of the most commonly cited differences that having an intellectual disability makes to a persons life focused on relationships and marriage. Many parents, siblings and key workers stated that without an intellectual disability, the teenagers would by now have had a girlfriend or a boyfriend and several parents suggested that their teenager would like to be involved in such a relationship. No respondent suggested that the teenagers would marry in future years.

Preparation for Adulthood

In some of the accounts of the lives of the teenagers, the evidence of their personal development was apparent. Some teenagers have recently started to travel or shop independently and others are encouraged to take up part time employment or assist with household chores. A few teenagers were perceived to be pushing boundaries. The interview schedule did not include any direct questions that projected into the teenager’s life as adults. However, issues concerning the future arose implicitly and explicitly across the range of responses to the extent that the future emerged as a theme of the data including employment, future living arrangements and support in the future.

ComQol Analysis

The Comprehensive Quality of Life Scale (ComQol), devised in 1997, is a scale, which ‘contains features of construction which reflect contemporary understanding of the QoL construct,’ (Cummins, 1997). As such it is multidimensional, operationalising quality of life as the aggregate of the seven domains; material well being, emotional well being, health, productivity, intimacy, safety and place in the community; and it is multi-axial, containing separate sub-scales for objective and subjective quality of life. The objective scale is comprised of the aggregate of 3 items for each of the seven domains. The subjective scale is comprised of a single item assessment (How satisfied are you with….?) for each of the seven domains. Importance ratings for domains, contained in the testing protocol, were not utilised in the analysis. The ComQol-I is a form of the scale specifically developed for those with intellectual disability or cognitive impairment.

ComQoL-I – Group

The aggregate scores for each domain and in total for objective and subjective assessments are presented below in Table 3.1. Aggregates were calculated both including and excluding proxy responses. In each case the effect of exclusion of proxy scores was negligible, in one case altering scores by 2% and in all other domains by less than 1%. Thus only aggregates including proxies are reported.

**Table 3.1: Mean objective and subjective ratings**
Domain	Mean Objective Score	Mean Satisfaction Score
Intimacy	74	84
Material well-being	58	95
Emotional Well-being	68	85
Place in Community	28	80
Safety	81	91
Productivity	63	82
Health	75	84
Total	63.8	85.8

The overall average subjectively assessed life quality for the group is 85.8. Bearing in mind that average life satisfaction or quality of life is 75% (+/- 2.5) of maximal scale values (Cummins, 1995; Felce, 1997) this indicates that these teenagers have an above average, subjectively assessed quality of life as measured by the ComQoL-I. Muldoon (2000) reported an aggregate score of 89 for a group of adults in group homes in the south of Ireland. Both compare favourably to aggregate scores of Australian groups, for example; 65.8 and 69.8 (Cummins, 1997) and 71.4 and 74.6 (Cummins, 1995). No other comparisons are available. The overall objectively assessed life quality for the group is 63.8. Since objective assessment is more sensitive than subjective (Cummins, 2001) the disparity between this score and the subjective score is not surprising. Again, the score for Muldoon’s group was a little higher at 69.4, both groups comparing favourably to two groups assessed by Cummins, with total objective scores of 57.1% and 59.3%.

Material well being and safety were the domains displaying highest levels of satisfaction. While this is consistent with the high objective score in the case of safety, it is curious that the objective score for material well being is quite low. The same pattern emerged in two of the Australian studies, although in each case the domain means were lower at 79.5 and 77.9 for safety and 36.8 and 35.5 for material well being (Cummins, 1997). Material well-being and safety were less satisfying to Muldoon’s participants, being ranked third and sixth most satisfying respectively (Muldoon, 2000). Material well-being was also rated low objectively, at 32. ‘Place in the Community’ (PCm) receives the lowest satisfaction rating and consistent with this a very low objective score. In Muldoon’s study PCm receives the second lowest subjective and objective rating, (88.2 and 37.5 respectively) a pattern which is mirrored in the Cummins’ studies although the satisfaction domain aggregates were substantially lower, at 65% and 37% in the Australian studies.

Critique of ComQol

The ComQol is one the two most frequently used scales in quality of life measurement in the intellectual disability field. It has a proven utility as a quality of life measure (Cummins, 2002), it has been used to evaluate a number of relocation interventions in Australia, and is deemed an acceptable instrument to benchmark client QoL to whole population norms (State of Victoria, 2000). Although chiefly used at group level, it can be utilised by service providers and practitioners as a diagnostic tool for individuals (Cummins, 1997).

In this study the ComQol-I performed reasonably well at the level of the group. The aggregated data for the group compared favourably to those of other groups reported in the literature. Further, Muldoon (2000) reported similar levels of subjective life satisfaction in an Irish residential sample. It is worth noting that the aggregate subjective score for the present group, and for the group in the MWHB (Muldoon, 2000) was beyond the range for ‘normal’ levels of life satisfaction (70-80% of maximal scale values), implying that this group has particularly high subjective life quality. The overall objectively assessed life quality for the group is 63.8, again comparing favourably to other groups (e.g. 57.1, 59.3 Cummins, 1997).

More serious limitations emerge when we explored the data at the individual level in tandem with the transcripts from the interviews. The measure does not appear to accurately reflect quality of life of the individual and specific questions yield inaccurate and misleading information. Specific questions were raised in relation to the comparative interview and COMQOL data in intimacy, emotional well being, place in the community and health. Accepting that the ComQol-I is only intended, with 21 questions in total, to give a broad indication of life quality, the interview data revealed that there are significant omissions. For example in intimacy, in every interview the need for more opportunities for contact with and socialising with friends outside of school was identified. Despite this very obvious unmet need, many of our respondents scored well in the intimacy and emotional well-being domains. One of the 3 questions to assess quality of life in relation to intimacy is how frequently the respondent talks to his or her friends. We had instances of respondents stating “every day”, presumably in school or in the training centre. Yet what these teenagers lacked and yearned for was to see their friends at weekends, in the evenings and during summer holidays. Issues that emerged in the interviews related to transport, sleepovers, and opportunities just to ‘hang-out’ with friends. Just talking to friends at school was clearly inadequate for good life quality.

In summary, while the ComQol rendered an indication of quality of life that appeared reasonably accurate for the group, this was only in the broadest sense. The ComQol-I it did not yield accurate or informative data at the individual level and, if used to develop individual plans or programmes could be at best unhelpful, and at worst damaging, to service users.

Discussion

This study was unique in its approach to investigating the Quality of Life of Adolescents. The study designed a questionnaire for the teenagers, their siblings, parents and key workers from focus group data provided by other teenagers, parents and key workers. The multi-perspective qualitative method ensured a panoramic insight into the lives of the teenagers. The inclusion of a Standardised Quality of Life Questionnaire allowed for a comparison of the data collected by the two methodologies and also permitted an evaluation of the usefulness of the tool in the context in which it was used. In order to develop new approaches towards positive quality of life outcomes, the project:

Consulted directly with eighteen teenagers, their families and key workers
Explored how the quality of life of the teenagers is experienced and perceived by the teenagers themselves and by other people who are significant in their lives
Identified barriers that are perceived to affect the teenager’s quality of life
Identified perceived supports to positive quality of life outcomes for young people with intellectual disability to live full and active lives.

The multi-perspective approach to data collection used in this project proved to be both useful and instructive. Each aspect of the data collection produced its own distinctive features as they combined to produce a multi-dimensional snapshot picture of the quality of life of the adolescents who were involved in the study. The multiple perspectives often lend clarity to the primary interview (with the teenager) explaining important details, for example, about bullying. It is only through the multiple perspectives that we get a sense of tensions in some of the teenager’s lives and the struggle for independence. There were also a few cases in which there were strong contrasts between the accounts of the various parties.

The lives of teenagers with intellectual disability need not, and in some cases cannot, be identical to the lives of teenagers without intellectual disability but they can and should be of an equal quality. Greater consideration must be given to the lives of teenagers with intellectual disabilities in Ireland today, greater planning must go into the transitional purpose of the period of adolescence and families must be supported by holistic services to overcome the barriers that face the teenagers as they move towards adulthood. To this end, the following recommendations were made:

Recommendations

Some important recommendations and actions were identified to improve the quality of life of the teenagers:

We need to develop a greater understanding of the purpose and tasks of adolescence in the bridge to adulthood
We need to develop the necessary supports for leisure activities to remove the reliance on families, which will include,
Practical support e.g. support workers / leisure coaches
Support development of community of interests
Developing community inclusion and community responsiveness
We need to build and develop a model of transition to adulthood with adolescents to address threefold need
Supports for friendship
Leisure and recreational activities
Develop community of interests

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