This is a brief outline of a new staff training course
The course seeks to improve the quality of life and happiness of service-users
The course is for staff who work with people with high support needs
The course is based on the most widely accepted and up-to-date understanding of quality of life and happiness. It is for organisations who strive to provide high quality Person Centred Plans (PCPs) and effective Positive Behaviour Support Plans (PBSPs) as required by statutory regulations and HIQA. The course is aimed at service users with high dependency needs, such as people with a significant intellectual disability, severe autism, enduring mental health difficulties and older adults. Often these people lack the capacity to advocate for themselves and they rely on the judgement and goodwill of others. Below is a brief description of the concepts of quality of life and happiness, the outline of the course, and a case study that shows how life for a teenage girl with significant behavioural problems was significantly improved.
Since the 1990s, there has been considerable interest in the concept of quality of life for people with substantial support needs, and in how this concept can be used to improve people’s lives and evaluate service quality. While there is no universally-accepted definition of quality of life, most writers accept that it is multidimensional and encompasses not only subjective and objective elements of a person’s life, but also personal values and aspirations (see Keith, 2016). By the 2000s, a broad international consensus had emerged as to the various domains that make up quality of life (Schalock et al. 2002). These are: emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion and rights. Today, the concept of quality of life underpins our national regulations and HIQA Standards used to monitor service quality.
At around the same time, Martin Seligman, a pioneer in the field of positive psychology, was studying the concept of happiness and what could be done to enhance the life satisfaction of those who are depressed or miserable. He conceptualised happiness as consisting of important building blocks, i.e., positive emotions, engagement, relationships, meaning and accomplishment. Positive emotions can be enhanced by spending time with friends and family, engaging in hobbies, exercising, getting out in nature and eating good foods. Engagement in activities that absorb us will lead to a state of ‘flow’ or a state of blissful immersion in the present moment. This is best achieved by engaging in activities that utilise our personal strengths, virtues and talents. Building strong relationships with family, friends, neighbours and co-workers is very important for our happiness. Meaningfulness and accomplishment are achieved when we pursue goals that are worthwhile and give us a sense of success. These concepts that are regarded as the building blocks of quality of life and happiness are often in marked contrast to the empty and lonely lives many people who are dependent on services experience.
Framework for Quality of Life builds on the earlier works of: Wolf Wolfenbenberger on Normalization; John O’Brien and Connie Lyle O’Brien on Framework for Accomplishment; and in Ireland, on Bob McCormack, Mary Rafferty and Christy Lynch’s staff training course, Values to Practice. The training course uses the building blocks of quality of life and happiness to enhance the lifestyles of people with high support needs.
The course consists of four modules, run over six months and lasting five days in total. Training is provided in small groups of 8 to 16 people. From the onset of the course, participants select and work with one person with high support needs who requires assistance to enhance their quality of life. By working with one person, participants learn to apply the strategies and knowledge they acquire on the course to enhance the quality of life of that chosen person.
In Module 1, participants consider the common experiences of service users, the domains of quality of life and happiness (see Table 1 above), the role organisations have in supporting service users to have a life worth living, developing a person-centred poster (see Figure 1 below) and how the quality of life domains can be used to improve the life of service users. Between Modules 1 and 2, participants are asked to spend time getting to know the person with whom they have chosen to work, the service user’s local community and to actively explore areas of possible interests. These assignments are reviewed in Module 2 and the service user’s strengths, interests and talents are identified. Participants are asked to rate the person on the 9 domains and to identify specific areas of quality of life that need to be addressed to enhance the services user’s lifestyle. Participants are introduced to the ideas of writing the Best Possible Vision for the person’s future and Constructive Actions. This requires them to use their imagination, knowledge and resourcefulness.
Following Module 2, participants are asked to host a Shared Action Meeting to which important people in the service users’ life are invited. The focus of this meeting is to reach a consensus on a positive future for the service user and how this can be achieved. The Shared Action Meeting is reviewed in Module 3 and consideration is given to ways of achieving the vision and constructive actions. These actions are reviewed and evaluated in Module 4. Participants also consider how they can use the Framework for Quality of Life approach when devising PCPs and PBSPs.
The following is a brief case history that describes the use of Framework for Quality of Life for one service user. Jean was born in 1999 and is the youngest of four siblings. She developed normally until the age of 13 months, at which time her mother noticed that she became clumsy and stopped interacting with others. At the 3-year stage she was diagnosed with autism and referred to an autism pre-school class in a mainstream school. Soon afterwards Jean moved to a special school for children with autism.
Initially, she was happy and made good progress. Jean commenced adolescence at 10 years old, and her mother noticed a change in her behaviour. She frequently became upset and would have ‘violent meltdowns’, strip off her clothes and wet herself. Jean was placed in a class with pupils with behavioural problems, but her problems became more frequent and intense. Jean was then moved to a class on her own. This appeared to work for a while but when positive strategies proved ineffective, aversive techniques were used. Jean’s behaviour became very violent. She was taken home one day in the school minibus accompanied by four staff and remained there for the next 8 months. During this time Jean had frequent outbursts and refused to leave her house. Her mother became ill and was hospitalised. Jean was assessed again. Results indicated that she had a severe intellectual disability and autism. It was recommended that she attend a special autism residential school supported by 2 SNAs. When Jean arrived in her new school she displayed several behaviours of concern. These included grabbing, hitting and kicking staff, screaming loudly, crying, throwing objects, slapping her face, wetting herself, rubbing her chin until it bled and throwing herself on the floor. These behaviours occurred in clusters and incidents typically lasted from 40 minutes to over an hour.
Observations showed that with peers of same age, especially those whose behaviour could be unpredictable, loud noises, and sudden physical movements, often preceded an incident. Jean often appeared hyper-vigilant, anxious and frightened and often complained of a pain in her stomach and frequently asked to go to the toilet. This typically resulted in Jean leaving her class. The Framework for Quality of Life approach was adopted and a Positive Behaviour Support Plan was devised. Emphasis was placed on helping Jean to cope with anxiety by preparing her for transitions and using a low arousal approach. Also, emphasis was placed on developing Jean’s strengths, interests and abilities, devising a positive vision for her future, and identifying a set of constructive actions. For Jean, these actions included attending a dance class with another girl in her class, learning to play the drums, being encouraged to use a karaoke machine to sing her favourite songs, getting a small job in a hairdressers/beauty salon, using an emotion keyring to let others know how she felt, joining a local choir, and going on holidays with her parents. Jean’s behaviour gradually improved. The constructive actions were revised monthly with her parents and staff. Jean has not had a major incident for over two years. Last year Jean was a bridesmaid at her sister’s wedding.
Initial research findings show that the course is effective, at building stronger relationships among staff, service users and their families; shifting staff focus from one of problem orientation to quality of life; and helping to build stronger staff teams that have a common vision. The course has teamed up with the School of Psychology at Trinity College, Dublin to further evaluate the effectiveness of Framework for Quality of Life.
Fleming, M., Martin, A., Dunphy, T. and O’Doherty, A. (Unpublished). Framework for Quality of Life. Draft Staff Training Manual. Dublin: St. Paul’s.
Keith, K.D. (2016). Quality of life: the journey is the reward. In A. Carr, C. Linehan, G. O’Reilly, P. Noonan Walsh and J. McEvoy. (2nd Eds.). The Handbook of Intellectual Disability and Clinical Psychology Practice. London: Routledge.
Schalock, R.L., Brown, I., Brown, R., Cummins, R.A., Felce, D., Matikka, L., Keith, K.D. & Parmenter, T (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of the international panel of experts. Mental Retardation, 40, 457-470.