People with learning disabilities often experience barriers in accessing healthcare. This project aims to educate staff and measure attitudes before and after training
Frank Garvey, MSc, BA, Cert Ed, Cert Health Ed, RNT, RNMH, RGN, is strategic liaison nurse, Hertfordshire Adult Care Services; Tony Wigram, PhD, was head music therapist (retired); Thanusha Balakumar, BSc, is senior research officer; Tim Gale, PhD, is research and development manager; all at Hertfordshire Partnership Foundation Trust.
Garvey F et al (2010) Measuring general hospital staff attitudes towards people with learning disabilities. Nursing Times; 106: 31, early online publication.
People with learning disabilities often experience health inequalities and barriers to healthcare service, as a result of poor communication and discriminatory attitudes.
We developed an educational package for healthcare staff and an attitude questionnaire to measure the impact of this training; the questionnaire is called the Attitudes of Secondary Healthcare Personnel Toward People with Severe Learning Disabilities (ASH-LD).
This article describes the process of designing and piloting the ASH-LD questionnaire, and how it will be used to measure the effect of the planned training.
Keywords Learning disabilities, Attitude, Questionnaire, Training
- This article has been double-blind peer reviewed
- Download a print-friendly PDF file of this article here
- Nurses in all settings should be educated in providing care for patients with learning disabilities.
- Before this questionnaire was drawn up, there was no tool to measure attitudes towards this group specifically in acute care settings.
- We developed a questionnaire that is specific to staff based in general hospitals to measure changes in attitudes after receiving specialist training.
The Department of Health is committed to providing a fair and equitable health service that is responsive to all patients’ needs (DH, 2003). In this context, the specialist needs of people with learning disabilities have been increasingly discussed (Mencap, 2004; Sowney and Barr, 2004; Elliott et al, 2003; DH, 2001), along with systemic and staff failings in the provision of equitable healthcare (DH, 2009; Michael, 2008; Mencap, 2007).
Barriers to an equitable, person centred health service for people with learning disabilities include poor communication, discriminatory attitudes, and a lack of understanding and education in relation to this vulnerable group (DH, 2009; Michael, 2008; Mencap, 2004).
Surveys of nurses’ attitudes, though limited in number, support the view that, without education and training on learning disabilities, their attitudes remain similar to those of the general public (Shanley and Guest, 1995). Mencap’s (2004) report recommended that healthcare professionals should be educated in providing non-discriminatory healthcare for people with learning disabilities.
We aimed to develop a rating tool for measuring the attitudes of acute healthcare staff towards general hospital care of people with learning disabilities.
Previous studies have attempted to measure attitudes towards people with learning disabilities, although none have used tools specifically designed to make such assessments in acute care settings.
For example, Antonak and Harth (1994) described a psychometric analysis of the Revised Mental Retardation Attitude Inventory (Revised-MRAI). The original MRAI scale was derived by Harth (1974), from a scale measuring attitudes towards racial minority groups by replacing the word “negro” with “retarded”.
Henry et al (1996) described the Community Living Attitudes Scale – Mental Retardation and reported that it has good psychometric properties.
Modified versions of the Attitude Toward Disabled Persons scale (Yuker et al, 1966) have been used by researchers examining healthcare professionals’ attitudes towards people with learning disabilities (Slevin and Sines, 1996; Slevin, 1995).
In summary, studies have typically used adapted or amalgamated questionnaires based on items derived from other less specific scales.
The strategic liaison nurse (a member of the learning disability health liaison team) led the development and delivery of a county wide education package for general hospital staff, to address the needs of adults with learning disabilities in acute care settings. The resulting package is designed to increase awareness and empathy when treating and relating to this patient group. In particular, it addressed issues relating to staff fears and anxieties when caring for this group.
Designing the education package
Before the questionnaire was drawn up, the content and aims of the training course were decided. How the course was designed is set out below.
Using focus groups and semistructured interviews, we sought the views of people with learning disabilities, their carers and clinicians in both general and learning disability services about existing acute healthcare provision for this group and how it could be improved.
Seven themes emerged from these discussions (Box 1) and the education programme was built around them. Underpinning these themes were key principles of rights, inclusion, choice and independence, as highlighted in the DH (2001) report Valuing People.
These findings were used as a basis for training courses for Hertfordshire district general hospital staff. As well as examining key professional and legislative requirements in supporting vulnerable people in hospital, the package aims to develop participants’ empathy and reflection about the lived experiences of having a learning disability and being in a general hospital setting.
The training will involve people with learning disabilities and carers (both paid and unpaid), and a learning disability specialist nurse jointly facilitates the session.
Box 1. Themes emerging from interviews and focus groups
- Healthcare staff expectations and knowledge of learning disabilities
- Emotions associated with caring for this group
- Understanding of healthcare procedures and processes
- Choices and rights of people with learning disabilities
- Communication and comprehension
- Competence of healthcare staff in dealing with this group
- Healthcare staff attitudes towards relatives and paid carers
Assessing participants’ attitudes
To establish whether the education package brings about a change, we developed a questionnaire to measure participants’ attitudes.
The themes in Box 1 provided frameworks for both the training session and the attitude questionnaire. Incorporating these themes ensured the questionnaire was designed to measure the attitudes the education was developed to address.
We decided to ask staff to complete the questionnaire before participating in training and again six weeks after it. We chose a six week period before re-testing to reduce the likelihood of participants recalling their responses from the baseline questionnaire. Hertfordshire Research Ethics Committee gave ethical approval for the study.
Stages of questionnaire development
Since literature searches found no validated tools for measuring acute clinicians’ attitudes towards general hospital care for people with learning disabilities, a self-report questionnaire was designed specifically for this study.
Individual questions from scales identified in the literature search were adapted to this patient group in general hospital settings, and further questions were generated by the research team to form a pool of questions covering the seven themes (Box 1) that had been identified as important.
The first draft of the questionnaire contained 45 items with which respondents were asked to rate their degree of agreement using a five point Likert scale.
This first draft was critiqued by a group of 12 healthcare staff working at an epilepsy centre, who were experienced in supporting people with learning disabilities with additional physical health needs. Items reported to be ambiguous or confusing, or those that uniformly attracted maximum scores (that is, showed a “ceiling” effect) were discarded. For example: “All patients with a severe learning disability can be expected to display behaviours that challenge”.
Participants’ difficulty in answering the questions without knowing the level of learning disability was discussed at length. We therefore decided to frame the questions within the boundaries of “severe learning disabilities”. The research team felt that the principles of the education package and associated attitude measurement, when directed towards the care of those with more severe intellectual disabilities, could be transferred to all people in this group.
The second draft, containing 22 items, was administered to 30 members of nursing staff (healthcare assistants, staff nurses and nurse team managers) at a hospital in a neighbouring county. This was to prevent biasing the hospital staff recruited in Hertfordshire who would be undertaking the training.
Group discussions with respondents identified further anomalies and potential inconsistencies in the questionnaire, which were then amended. A request for demographic information (such as gender, age, occupation and work setting) was also included at this stage.
The final version of the Attitudes of Secondary Healthcare Personnel Toward People with Severe Learning Disabilities (ASH-LD) questionnaire contains 18 items that are short and focused, using uncomplicated, familiar wording to promote uniform understanding (Box 2 shows a section of the questionnaire - see PDF attached above).
Respondents will be asked to indicate their degree of agreement with each item. Half the items are positively phrased and half are negatively phrased to avoid acquiescent response sets – a form of bias where people tend to agree with statements regardless of content. Scoring is reversed for the positively phrased questions, so that a higher total score indicates a more positive attitude.
All seven themes from Box 1 are represented, thereby supporting content validity. A basic description of what is meant by the term “severe learning disability” is included for reference.
All data collected will be anonymous. Participants will be asked to provide their own anonymity code so their questionnaire scores before and after training can be matched up.
Administering the questionnaire
The ASH-LD will be administered to general hospital healthcare staff who attend the training day. A short script will be read out at the start of each training session to ensure consistency in its administration and to stress that responses are confidential to maximise reliability.
The education facilitator will highlight the importance of completing the questionnaire from a truthful “personal” position and not from the “expected professional” perspective. It will also be stressed that it is not designed to examine “correctness” of responses.
On completing the questionnaire, attendees will be offered the opportunity of not handing it in, as consent for participation will be assumed through return of the questionnaire.
At the end of the course, participants will be informed that, as a way of evaluating the education, a postal questionnaire with an enclosed stamped addressed envelope will be sent to them six weeks after the training. They will not be told that the same questionnaire will be used, which will reduce the possibility of responses being remembered for the sake of completing the questionnaire at a later date.
Six weeks after completing the initial questionnaire at the start of the training course, another will be sent to each participant with an explanatory covering letter and stamped addressed envelope.
The reliability of the ASH-LD questionnaire will be supported through running six week interval “test – retest” sessions – without the educational intervention – with comparable convenience samples in a hospital outside Hertfordshire. This will be used to test the correlation of the instrument at two points in time. It is possible that a “context effect” may influence the results – the initial setting for the “test” will be quiet and controlled with a presumed high level of compliance. The “re-test” will take place in possibly an uncontrolled setting that may contain distractions or other stresses such as home environments or workplaces.
Criterion validity will be assessed through comparative analysis of the questionnaire when completed by a number of specialist learning disability nurses.
The final questionnaire consisted of a small number of highly focused items relating to each of the seven themes being identified as important in providing acute care for people with learning disabilities (Box 1).
We made considerable efforts to engage with people with learning disabilities, carers and key stakeholders in learning disability as well as general health services when developing the questionnaire and education package.
The course will offer challenging education, based on the experience of these people and services.
Its content is relevant to all vulnerable people in hospital settings, and its transferability has been central to its gaining so much support from general hospital management teams across Hertfordshire and Bedfordshire.
The aim is to challenge participants by giving them a glimpse of the “lived experience” of having a learning disability and being in the frightening world of a general hospital. The course will guide staff through that experience and the ASH-LD questionnaire will measure whether this influences their attitudes towards people with severe learning disabilities.
The ASH-LD questionnaire and education package have been developed with rigour to exacting standards through the commitment of a dynamic learning disability health liaison team and research team. In the current radically changing healthcare economy, the need to continue to engage with the real experts - people with learning disabilities and their carers and advocates - to measure quality and help foster positive attitudes has never been greater. The health liaison team will be pivotal in this engagement process and look forward to capturing attitudinal change.
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