Background information

NEL Community Insights Project

DISABLED PEOPLES’ PROJECT

 BACKGROUND

This proposal is based on a series of documents that have begun to explore the experiences during the last nine months of those people who are disabled.  There have, to-date, been a number of themes that have emerged which need greater exploration including the following:

  • Disabled residents appear to be more likely to be digitally excluded.
  • In the Covid-19 pandemic, multiple services offered by GP surgeries and hospital consultants have moved to a remote service (on-line or via telephone) which has raised questions about their accessibility.
  • Disabled patients tended to be less satisfied with their experience of accessing GP services on-line.
  • Many patients tended to experience disruption to their hospital-based/consultant-led care with those depending on treatment or adaptations to stay independent in day-to-day life being the most affected. Many also appeared to have encountered cancellations and what they believed to have been unreasonable waiting times believing communication around disruptions to have been poor.
  • Complaints were heard with respect to poor punctuality, communication and organisation on the part of both professional carers and district nurses, leading to poorer support for disabled people.
  • The level of access and support disabled residents receive for their physical health has been shown to affect their mental health and wellbeing. Disruptions to services during the Covid-19 pandemic have appeared to have the potential to cause stress and worsen pre-existing mental health conditions.
  • Patients receiving care in their own homes reported concerns around carers’ use of PPE in the Covid-19 pandemic and poor communication with care agencies.
  • According to Office for National Statistics figures released in August 2020 disabled women were 4 times more likely to die of the virus, and disabled men were twice as likely to die of the virus.

Previous community networking has also shown that it appears possible to breakdown the general category of those who are disabled into the following subcategories with the accompanying central themes: 

Area Categories Cohorts Sub-categories
Disabled People Learning Ethnicity: BAME groups

 

Carers

 

Young people

Digital inclusion

 

Communication/health messages/vaccine

 

Hospital access/outpatients

 

Social care – assessments,

personalisation, payment system

Physical
Sensory
Mental

PURPOSE

This is a wide-reaching project that is being developed across the whole of NEL to understand more fully the impact of COVID-19 on those people who are considered to be disabled, both physically and in terms of their mental health.  Specifically, its purpose is to explore the following questions:

  • What has been the impact of COVID-19 on disabled people? People with which disabilities?
  • How and in what way has the impact changed over time?
  • What has been the impact of recent service changes on disabled people?
  • What have been and what are the barriers and facilitators to accessing provision over time?
  • Which, if any, changes should be kept post COVID-19?
  • To what extent do opinions and experiences of disabled people vary dependent on whether or not they, themselves, have had COVID-19?
  • Through the experiences and opinions of disabled people, what might improve care for disabled people in the future? For which disabled people?

METHODOLOGY

The project will take the form of a three staged process between February-April 2021 across the areas covered by eight local Healthwatch: Tower Hamlets; City; Hackney; Newham, Waltham Forest, Redbridge; Barking and Dagenham; and Havering.

Stage I – Quantitative

It is proposed that a survey, deploying a brief questionnaire that is consistent across all the boroughs, is carried out.  The main purpose of this questionnaire will be to gather demographic information as well as additional baseline information with respect to the experiences of disabled people during COVID-19. 

Given budgetary and time constraints and the purpose of this stage, there will neither be a defined sample size in each area nor a rigorous sampling procedure. On the other hand, however, it will be critical to ensure that the sample includes:

  • Those with disabilities covering:
    • Learning
    • Physical
    • Sensory
    • Mental
  • Those who were considered disabled previous to March 2020;
  • Those who have had COVID-19 and those who have not;
  • Those who regularly use health and social care services;
  • An age range between 18-65+;
  • A range of those from different ethnic backgrounds within the context of each local area;
  • Those from all wards in each area; and
  • Those who are known as well as those who are not necessarily registered or known to either statutory and/or community organisations.
  1. a) Process:

The sample will emerge from the following sources:

  • Local networks including Whatsapp groups;
  • GP surgeries;
  • Local authorities;
  • Community organisations;
  • Hospital and Foundation Trusts; and/or
  • Alternative routes to be decided by local Healthwatch.

Each organisation above will be sent a letter/email of introduction, explaining the study and inviting them to encourage their clients who are disabled to take part (Appendix II). If people are interested in taking part, details of the on-line link will be provided to the participants. If participants would prefer a telephone interview, their details may be passed on to Healthwatch to administer the questionnaire, they may contact Healthwatch directly in order to participate or, alternatively, community organisations may wish to administer the questionnaire themselves. An Easy Read version will also be available. In all cases, interviewers may need to support some disabled people in answering the survey.  Interpreters may also be necessary.

All participants will be asked whether they would like to take part in Stage II and Stage III parts of the study.

Analysis of the data will be carried out by the NEL Local Healthwatch.  Central to this process will be to explore the data for further questions or themes, either new areas of interest that emerge or further exploration of those detailed above. 

A report will be written detailing the analysis including cross tabulations which will cover all eight local Healthwatch.

STAGE II – Qualitative

While quantitative studies provide measurements and numerical data, qualitative approaches addresses the how’s and whys of phenomena using the experiences, opinions and perspectives of those involved.  In qualitative research, the main interest lies in identifying and describing the range of issues, themes, views or experiences and the relationships between them, rather than counting or estimating their prevalence.  The work is small-scale, flexible, in-depth and detailed as opposed to standardised and large-scale.  Sample units tend to be selected purposively because of the greater control this lends to ensuring that the sample has examples of all the important types of sample member. Such  approaches are often used to precede quantitative work or even in tandem but, in this case, qualitative methodologies will be used as a follow-up to the analysis of the data because of the scope they provides to engage in direct dialogue with respondents and to unpack their views.  It will enable:

  • Findings to be explored in greater depth;
  • A deeper understanding of the views of any particular cohort where the numbers are too small for statistical analysis but which may have been particularly affected by COVID-19;
  • A fuller analysis of groups who may appear to have a view or perspective that has not been fully explored or explained in the quantitative data. This analysis may, for example, cut across or within disability groups and may further be explored by demographic characteristics or by particular experiences.
  1. a) Methodology

In the case of this study, a qualitative methodology will:

  • Provide an opportunity for those who consider themselves to be disabled to tell their stories and experiences over the last nine months;
  • Provide a mechanism through which aspects of service provision can be explored through the perspectives of people who are disabled;
  • Enable an understanding from their perspective of how and in what service provision may have changed and how it has affected them either negatively or positively;
  • Explore the differences, if any, between people with varying disabilities or within cohorts of people with the same disabilities in terms of their experiences and opinions;
  • Explore the differences in experiences of those who are disabled who contracted COVID-19 and those who did not;
  • Allow an exploration and ‘unpicking’ of the different factors that have created either previous positive or negative experiences and how they might interact and be inter-dependent; and
  • Enable the development of recommendations for future service provision for people who are disabled.

As has previously been noted, there is a range of qualitative methodologies that may be possibly suitable although different methodologies have different foci, producing different data. Thus, this project may include:

Group discussions/Focus groups:  These bring together small numbers of people to discuss topics loosely identified in advance. They have the advantage of being cost effective (more people for your money) but also have a theoretical rationale.  In focus groups people’s views are often stimulated and brought into sharper focus by the opinions and experiences of others and there is an opportunity to hear and see how people interact on a given subject. Data from focus groups may be shaped by group interaction in which views are refined and redefined.  They also allow for debate and creative thinking, often tackling abstract and conceptual subjects, teasing out differences and similarities and what lies behind them within a group context.

Individual in-depth discussions:  Group-based methods however, give fairly limited scope to explore in-depth the ‘stories’ of individual respondents – their experiences and behaviour, views and perspectives and the links between these.  This usually calls for individual interviews in which topics are pursued in-depth with single respondents. 

In-depth individual interviews will provide rich and focused data, detailing the lives and experiences of disabled people during COVID-19 through their own eyes. As in focus groups, interviews will be open-ended, flexible and responsive to what respondents have to say, thus allowing for spontaneity and full exploration of the issues. 

Case studies from each of the four categories could also be collected on the basis of these interviews.

Video Diaries:  These invite participants to capture and record their experiences of services.  This could either be carried out on the telephone or filmed.  Despite the popularity of video diaries, they are time consuming for the participant and the data may not be as accurate or consistent as planned.  Nonetheless, they may be an important addition to the study and could be seen alongside a series of case studies.

Mystery Shopping/Patient X:  It is anticipated that some participants may be asked if they would take part in a mystery shopping exercise.  This would provide detailed feedback on elements of their journey and, thus, on specific service provision.  This methodology can provide not simply detailed information about a particular service but also where the gaps in provision are and/or where service users are encountering problems.

  1. b) Sample and Recruitment

Purposive sampling is recommended for Stage II, that is, where sample units are chosen because they have particular features or characteristics which will enable detailed exploration and understanding of the central themes and questions which have merged from the findings in the data in Stage 1. At present, it is hard to predict what these will be but it may not simply be socio-demographic characteristics and, instead, they may relate to specific experiences, behaviours, activities, particular services and so on and this will be revealed in the analysis of Stage I.  

Using purposive sampling has two main aims. Firstly to ensure that all the key constituencies of relevance to the subject matter are covered and, secondly, to ensure that within each of the key criteria, enough diversity is included so that the impact of the characteristic concerned can be explored fully.   

Disabled People:   Hence, it is proposed that the sample should cover, in the first instance:

Disabled people covering:

  • Learning
  • Physical
  • Sensory
  • Mental
  • Those who have had COVID-19 and those who have not
  • Those who were considered disabled previous to March 2020;
  • Those who regularly use health and social care services

Once the findings from Stage I are clarified than, at this point, further criteria can be detailed.  The findings will also dictate which of the above methodologies should be used for exploration of each of the findings.

Dependent on the criteria, it may be possible to select interviewees to participate in Stage II from those interviewed in Stage I, if they meet the criteria.  Otherwise, participants will need to be freshly selected from the relevant sources. This may involve either statutory or community organisations or even through networking. 

Access to the contact details of disabled people will follow all current GDPR ethical protocols. In the first place, letters will be sent to all potential participants. Thus, in order to recruit 30 patients, for example, letters will be written to approximately 60 disabled people.  The letter will be agreed and signed by local Healthwatch. . It will explain the purpose of the study but importantly, it will include an ‘opt-out’ slip to be sent back in the stamped addressed envelope provided if they do not wish to participate.   Once people have received the letter, the research team will allow approximately ten days ensuring that patients have enough time to ‘opt-out’. Once those who have ‘opted-out’ are removed from the list, the remaining names and contact details can be passed to the researcher. 

Although this is the usual process for selection of participants who are known to the statutory sector such as patients or those who receive social care, it may be that community organisations will be able to invite people directly, without the need for a letter, and obtain agreement for their contact details to be passed over to the community insights team.  This is also likely to be the case for those accessed through networking.

The community insights team/s will subsequently select disabled people from this list to ensure the sample criteria are met and will then contact them directly to arrange an interview but on initial contact will again offer the potential interviewee a chance to ‘opt-out’. Those taking part in the evaluation will be anonymous at all times and their names will not be revealed by the community insights gatherers at any time. 

It is not anticipated that more than 25-30 disabled people will be selected for Stage II in each local Healthwatch area.

User Organisations/Groups: It is also suggested that interviews during Stage II will take place with user organisations if it is felt likely that the data will be further enriched.

  1. c) Interviews:

 Qualitative data collection is flexible, open-ended and responsive to what respondents have to say.  Questions are not formulated in advance and coverage of an issue will often vary a great deal between people because of the differing perspectives and experiences they bring to bear.  Nonetheless, it is usual to sketch out a rough ground plan to be covered. It should be stressed that this guide will only be a framework for discussion and should be used as an aide-memoire.

A topic guide will thus be developed and will provide a framework for each session and for subsequent analysis of the data.   This guide will consist of a number of key themes and drafts of the suggested discussion guides for each qualitative methodology are attached in Appendix IV  (this is just a draft/example, it will be designed based on the first phase questionnaire).

A further adapted guide will be developed of user organisations if need be.

All interviews with disabled people will be entirely confidential. This is of the utmost importance in ensuring that interviewees are able to discuss their views, opinions and experiences with total ease.  All interviews however, will be recorded with permission but only the study team will have access to the recordings.  Participants will be provided with a Participant Information Sheet and Consent Form at the time of interview.

All disabled people involved in this Stage will be invited to take part in Stage III.

In qualitative social research it is usual to offer respondents who are interviewed as a member of the public an incentive as a token of thanks for their time. In this study it is suggested that participants are offered £25 cash.  It is not usual to pay participants who are interviewed in the capacity of their profession. Thus, user organisations would not receive a similar sum.

  1. d) Analysis

Qualitative analysis, in the sense of identifying key themes and piecing together their relationships, will be ongoing throughout the project, including data collection. Thus, the study will be analysed iteratively and will build on the findings of Stage I.

Stage III – Recommendations

The final Stage of this Project will be to develop recommendations.  Again, at this point, it is hard to determine the format of this development until the findings of Stage I and Stage II are detailed. Nonetheless, it is likely that it will involve:

Participatory Action Research:  This aims to break down the barriers between policy makers and those subject to the policy. Hence it may provide a unique opportunity for disabled people to work with service designers and policy makers within the context of the study findings and ensure that the outcomes are effective.  Those interviewed from the two previous Stages will be asked if they would like to take part in this phase.

User Groups:  It will also be important to work with user groups at this stage to explore how the recommendations from the study might be best implemented. This would feed into the above discussions.

Finally, all participants will be asked at each stage if they would like further involvement, including that of a Citizen’s Panel. 

Outputs

STAGE 1: QUESTIONNAIRE (50-100 per LHW aim for 500)

STAGE 2: INDEPTH INTERVIEWS (15-30 per LHW aim for 150)

STAGE 3: FOCUS GROUPS RECOMMENDATIONS