Research on the potential for establishing a National Centre for Independent Living in Wales - Methodology

This section sets out the methods and research activity undertaken. This includes:

• research planning and development;
• data collection;
• analysis;
• and the process of prototyping a co-production approach

The research aim was to further explore the DRTF Working Group recommendation to ‘establish a National Centre for Independent Living in Wales’ with stakeholders. 

A co-production team was established to design and deliver the research. The team included disabled people who were members of the Disability Rights Taskforce and Welsh Government Officials. Further information about the co-production process is set out in Background information.

Previous work from the DRTF Working Group highlighted that topics at the centre of this research are complex and cross-cutting, covering a number of different policy areas. As such, the co-production team drew upon the expertise and lived experience of its members to develop an initial Vision for how a National Centre for Independent Living could work in practice, setting out the following elements in order to structure the research, including:

• overall scope of an NCFIL: an idea of the scope of a centre
• core elements of ‘good’ Independent Living: essential services which people need access to
• ‘enablers’ of Independent Living: types of organisation or groups delivering a particular activity which is necessary to support Independent Living
• activities for an NCFIL: suggestions for what an NCFIL could do to support its aims
• organisational considerations for an NCFIL: foundational principles and practical considerations for the potential design of an NCFIL

Work to map the prospective stakeholders of a NCFIL, and understand the relationships between them, gave an indication of likely research participants. Given the range of stakeholders identified, the co-production team opted for a deliberative approach to data collection, engaging with stakeholders collectively rather than through individual discussions.

Such methods aim to explore the informed and considered views of participants and enable mutual understanding, aligning with the Magenta Book guidance on handling complexity (HM Treasury) and topics lacking consensus between stakeholders.  

Representatives from a range of stakeholder organisations were invited to participate in an online workshop to explore the themes outlined above. The co-production team’s Vision formed the basis of discussions throughout the day. This was circulated to participants ahead of the workshop alongside other information. 

Research themes and objectives for the workshop were co-designed to explore how establishing an NCFIL could support Independent Living for disabled people, and the advantages or limitations of various delivery models. Core research objectives were:

• to understand what Independent Living means in practice
• to identify what activities an NCFIL could deliver to enable Independent Living for disabled people in Wales
• to explore the practical considerations for designing an NCFIL

A deliberative workshop was held online to collect primary data from stakeholders, with Chairing and facilitation roles shared between members of the co-production team. 

A purposive sampling approach was taken to identify participants who could represent lived experience of disability and organisations involved in the delivery and oversight of social services. Participants were invited to represent a wealth of experience and knowledge in the areas relating to social care, the issues affecting disabled people, and the right to Independent Living. 

In total, representatives from 35 different organisations, including a range of related Welsh Government policy areas such as transport and housing, were invited to attend. 30 participants contributed to the research, representing 19 organisations. Not all participants were able to attend the full four-hour workshop, and one participant contributed separately in writing only. Participants were from the following groups: 

• DPO and Impairment Group (IG) representatives (11 participants)
• representatives from local authority and other public sector bodies (6 participants)
• individual representatives from academia; trade unions and other stakeholder organisations (5 participants)
• Welsh Government policy and delivery officials (8 participants)

A DPO is ‘an organisation led, directed, and governed by disabled people, with a commitment to the social model of disability and the promotion of human rights for disabled individuals’.

An IG can broadly be defined as ‘an organisation whose purpose is to further the interests of people with a specific impairment, which is not run and governed exclusively, or at all, by disabled people’. 

A list of organisations involved in the research is given at Annex C.

Contacts in stakeholder organisations were either invited to participate by Welsh Government using publicly available email addresses or were approached directly by co-production team members. For DPOs and IGs, a list of participants from DRTF Working Groups was used to identify potential participants. This meant that organisations representing disabled people with a range of impairments were invited to participate.

The workshop was held virtually to ensure that the research was as inclusive and as accessible as possible. This enabled people from across Wales to participate. Participants were asked to indicate any accessibility requirements in advance. They could also participate in the research in writing if unable to attend the workshop. Participants were provided with a list of discussion questions and a short summary of background information, as well as practical information about joining the workshop. 

A workshop is a commonly used deliberative research method used to gather qualitative data. Deliberative sessions are usually longer than standard research discussions and are used to explore in-depth topics. Participants are chosen to represent a range of different viewpoints and are encouraged to discuss the topic with the rest of the group. This method aims to understand participant viewpoints after having the opportunity to hear what others think. As stated in HM Treasury guidance, deliberative research methods are appropriate where participants require a large amount of information to form a judgement and meaningfully engage in a topic. Deliberative methods also give facilitators the flexibility to probe and explore the views of participants to help understand not just ‘what’ works but ‘why’ and ‘how’. This enables researchers to better understand the relevant mechanisms, influences and interactions. 

The first hour of the workshop included presentations on the right to Independent Living and on the UNCRDP, the DRTF recommendation, and the Vision for an NCFIL developed by the co-producer team. The remaining three hours involved breakout group discussions, with varied stakeholder types represented in each group, to explore the research questions. 

The topic guide was developed by the co-production team and included three main question areas aligned to the research objectives.

• What does excellence look like for Independent Living, and what are the common characteristics of good experiences?
• What could a National Centre for Independent Living in Wales do to support overcoming the implementation gap, including an exploration of the suggested activities and thoughts on delivery stakeholders?
• What is needed for a National Centre for Independent Living in Wales to be successful, including discussion on the suggested organisational models and any potential barriers?

For each question, the team developed discussion prompts, see Annex B, for breakout group facilitators to use to guide discussions. These prompts allowed the conversation to flow naturally and cover areas of greatest interest and experience of the participants. Participants were divided into four virtual breakout groups, to enable fuller discussions within smaller groups. One participant from each breakout group then briefly presented the main points of agreement from their group discussion to the full group. In this way, participants could hear the main viewpoints of other breakout groups as well as their own. 

The data collected included:

• examples of what participants felt constituted excellence for Independent Living, and what is needed for this to work in practice
• explorations of what an NCFIL could do to support Independent Living, and how an NCFIL could work with what is already being delivered, and with main stakeholders
• ideas about what should be considered when designing an NCFIL, and how to support engagement of different stakeholder groups
• examples of organisational models which could be considered for an NCFIL, and thoughts on the benefits and limitations of different model options

There are some risks associated with this method. It is important to make sure information given to participants is balanced and not biased towards one viewpoint. It can also result in bias as different groups of stakeholders may be more or less willing to participate in a workshop than others. Workshop discussions need careful facilitation to ensure that all participants have equal opportunity to communicate their views. Some participants had previously attended the DRTF Working Group, so were involved in development of the original recommendation. The co-Chairs were disabled people who were members of the co-production team and had a clear understanding of the issues being discussed. Co-facilitators were Welsh Government officials who were members of the co-production team. The co-Chairs and co-facilitators attended training in deliberative methods facilitation ahead of the workshop. Government Social Researchers quality assured the research plan and materials to ensure that appropriate research standards were adhered to throughout. 

Workshop participants shared a wide range of knowledge and insights including experience of working in roles that support disabled people and Independent Living directly or indirectly, as well as lived experience as a disabled person. As Independent Living underpins many aspects of day-to-day life, the range of policy areas and stakeholders involved in delivering Independent Living is understood to extend beyond those represented in this research. However, every effort was made to identify and engage with main stakeholder groups. 

It is noted that this research uses a qualitative method, with a limited number of participants rather than a representative sample. It aimed to further understand elements of the DRTF recommendation. It is not intended to be interpreted as an exhaustive exploration of everything that is needed to support disabled people’s rights to Independent Living. It is also not intended to be a full feasibility study looking at setting up an NCFIL. However, this research method can produce rich and diverse insights into a particular topic, allowing for collective and diverse views to be explored in detail.

Captions were recorded with the permission of all participants, so a transcript of the workshop including each breakout group discussion could be produced. The data was anonymised by a Welsh Government researcher who also analysed the transcript. Another researcher then independently analysed half of the data, and the researchers compared their results for consistency to check that the analysis had been done correctly. The workshop co-Chairs reviewed the initial findings, and main themes were shared with the rest of the co-production team for discussion and review. 

The researchers undertook systematic thematic analysis, following the six steps as described by Naeem et al (2003) (Sage Journals). This approach was first developed by Braun & Clarke’s technique (2008) (Taylor and Francis Online). The six steps are set out below.

Step 1: Transcription, familiarisation with the data and selection of quotations

Initial phase where researchers dive deep into the data and select quotes that bring the data to life and reflect the research questions and options. 

Step 2: Selection of keywords

Involves examining the quotes and picking out keywords that reflect them. 

Step 3: Coding 

This simplifies the keywords by converting raw data into insightful, manageable units. 

Step 4: Theme development

Organising codes into meaningful groups to identify patterns linking to research questions.

Step 5: Conceptualisation through interpretation of keywords, codes and themes

Involves understanding and defining concepts emerging form the data.

Step 6: Development of conceptual model 

Creating a unique representation of the data, guided often by existing theories or themes, answering the research questions and is the culmination of the analysis.

The research has been delivered in line with the social model of disability and active steps were taken to meet the range of accessibility needs of the co-producers. The co-production team set out to work collaboratively to ensure disabled people’s voices were ‘a golden thread’ throughout each stage of the research. The extent to which co-production was achieved will be reviewed at the end of the project. Co-production is an iterative process, and the research design shifted and changed during the project. There were some elements of the research design that were not completed as tasks had to be prioritised and some were ultimately beyond the research projects resources in the timescale available. This included undertaking a full-scale literature review, and collecting stories from disabled people from different communities during the fieldwork. 

This issue of resource had a further impact on the research team’s ability to fully triangulate the data with additional evidence sources. This is an acknowledged methodological limitation of this research. 

The co-production team were involved at each stage of the research as set out below in more detail.

Scoping stage 

This involved facilitating co-production team workshops to better understand the rationale for the DRTF Working Group recommendation and develop initial research questions to form the topic guide. Evidence reviewing and conversations with Welsh Government Policy Officials were also undertaken during this stage. A workshop was held for the co-production team to further develop the DRTF recommendation into a fuller ‘Vision’ to explore with wider stakeholders. 

Co-planning stage

This involved agreeing a deliberative workshop as the primary research method, co-designing topic guides, pooling contacts and efforts to recruit participants. A workshop was held to co-design the co-facilitation approach in advance, and the workshop co-Chairs and co-facilitators participated in a deliberative methods facilitation training course. 

Fieldwork stage

As noted above, this involved a co-facilitated deliberative workshop with a range of stakeholders including DPO / IG representatives, Welsh Government officials, representatives involved in supporting social care and disabled people, and other interested stakeholders such as academics and activists.

Co-analysis stage 

A Welsh Government researcher transcribed and anonymised the raw data before undertaking thematic analysis. This theming process was also undertaken independently by another Welsh Government researcher before comparing and agreeing themes. The themes were sense checked with workshop co-Chairs and co-facilitators. 

Reporting stage 

The report was drafted by a Welsh Government researcher and quality assured against Government Social Research (GSR) standards. The draft report was shared with the co-production team for comment before final revisions. The co-production team provided advice and steer regarding accessible formats and highlighted the need to quality assure any outputs to check for adherence to Social Model of Disability language. 

Remuneration was offered as in-kind contributions of facilitation training and masterclass events by well-regarded disability rights activists.