Quality of life is easy to understand but difficult to pin down

What makes for a good quality of life?

A simple question leading to a cascade of incomplete answers, more questions, incomplete answers to those questions, and so on.

This presents difficulties for community and voluntary organisations because this question is at the core of many of the services they try to provide.

If there is no perfect, or perfectly-characterised, answer to this question we need to work with what we can – perhaps a good answer.

A report published last week by Department for Communities seeks just this, pondering:

• What constitutes a good, and an exquisite, life?
• Do people share views on what constitutes a good life?
• Are some aspects of life more important than others in determining quality of life?
• Are there aspects of life that can be said to universally contribute to, or detract from, life quality?
• To what degree should people’s own perceptions determine how we consider their quality of life?
• How do social and cultural factors influence quality of life?
• What are the best ways to measure quality of life?

The paper, stemming from the new outcomes-based approach announced following the last Assembly elections, was actually completed in September 2017. Publication normally follows ministerial assent but, in the absence of any ministers, senior officials have now made it public.

The 2016 elections, and the subsequent Programme for Government (PfG), continue to significantly affect Northern Irish departments, the broader civil service and, accordingly, the third sector.

With all that has happened since, it’s easy to forget that this PfG was (supposed to be) transformative, compared with how things were done before, thanks to a new focus on outcomes rather than presumed-to-be-effective processes.

However, while the collapse of government has stalled or slowed much of the change, it has not pulled the plug on everything. In fact, while these comments were made before Stormont sank, the then head of the civil service Sir Malcolm McKibbin went out of his way to say the civil service was fully committed to this new approach.

One of the indicators for the 2016-21 PfG was the aim to ‘Improve the quality of life for people with disabilities and their families’. This week, the Department for Communities published a scoping report, in conjunction with QUB and UU, looking into what this means.

Report

Measuring the Quality of Life of People with Disabilities and Their Families had five objectives, including to:

• review the international literature on quality of life (QoL) measurements for people with disabilities and their families
• develop recommendations for key definitions
• assess existing and emerging data sources for potential use
• develop recommendations for a preferred option
• test the recommended QoL measure

Among its recommendations is to define QoL as ‘Individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and their relations to salient features of their environment’ – which is the World Health Organisation (WHO) definition from 1997.

However, when it comes to measuring this QoL, the researchers found that lifting solutions off a shelf was less suitable.

They looked at existing WHO surveys used to inspect individuals’ QoL (there are separate lists of questions aimed at adults and children) but found they were too focused on health and lacked detail on wider concerns for people with disabilities. This lack of detail appears wider in surveys aimed at children (and also the families of children with disabilities) than those aimed at adults, per the report.

The report says: “Additional questions should include objective indicators of QoL such as: income, housing, education, and employment. It is also recommended that people are asked about their experiences of social inclusion, specifically in political life, and of discrimination. It would also be important to allow people the space to identify or comment on issues which impact on their QoL and to ask them directly what they think should be done to improve their QoL.”

Beyond health

This is a lot like the shift from thinking about health to thinking about wellbeing – but perhaps it goes even further.

Several focus groups took place, speaking with individuals with disabilities and their families, between February and March 2017. A total of 73 people took part – which the report acknowledges is lower than desirable (while being a good number within the timeframe).

Most of the people who took part agreed the government should be measuring QoL and while there was “some support for data that could be compared internationally but there was greater interest in being able to compare the data to people without disabilities in Northern Ireland.”

Advice and recommendations, based on these consultations, for measuring QoL included:

• The two things that people stressed were most important in having a good life were family and friends/social life
• There was agreement from participants that any measurement tool would have to consider all aspects of a person’s life rather than a single focus (such as health or employment)
• Although people agreed with the definitions proposed, some found them too cumbersome and recommended making them simpler
• It was suggested that the monitoring of quality of life of people with disabilities should use the UNCRPD as its framework
• The monitoring should be based on a full population survey so that people with disabilities can be compared with their non-disabled peers
• It was recommended that this data should be captured as regularly as possible (possibly employing a longitudinal study if possible) and should draw upon both subjective and objective data
• People preferred the development of a new tool but were open to the idea of capturing data through a combination of existing sources
• The preferred method was a survey but with a slight advantage to having it administered face-to-face rather than through the post. Most people agreed that it needed to capture qualitative and quantitative data in order to get a better understanding of the quality of life for people with disabilities and their families

Initial measurements

The DfC/QUB/UU publication goes into a lot of detail about why it recommends the indicative measurements it does, and makes its case well. This makes it a good starting point for evaluating this outcome in the future.

While this is a PfG issue for the (now uprooted) 2016-21 mandate of the NI Assembly, the fact is dedicated efforts to improve the quality of life for disabled people in Northern Ireland will continue to be a worthwhile pursuit for the foreseeable future.

The next steps are to begin, in earnest, the measurement process. Outcomes-based accountability is based on regular measurement of improvements (or not) and the management of services or policy to improve these outcomes down the line.

The report states: “Data should be collected on measuring the quality of life of people with disabilities and their families every four years to monitor changes over time.” That seems a reasonable frequency.

Reforming the way the state looks at QoL, and how it goes about what works and what doesn’t in terms of making improvements, is a slow process made slower by political failures. Slow, but still moving.

The ability to measure both the quality of life of people with disabilities, both young and old (and relative to their peers), and how this is changing over time – and to do both of these well - will be a vital resource for relevant statutory bodies, as well as the disability sector.

This piece of work is a reassuring step that may have done unnoticed by some. What comes next – baseline measurements and, from there, comparative measurements – deserve everyone’s attention.