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Better preadmission assessment improves learning disability care

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People with learning disabilities often have difficulty identifying and meeting their health needs and accessing appropriate health services. The Department of Health (1999a), NHS Executive (1998), and Mencap (1998) report that this group has increased needs compared with the general population, yet these needs are often poorly met. Problems people with learning disabilities have regarding access to secondary care include:


VOL: 100, ISSUE: 25, PAGE NO: 44

Lyn Hannon, MSc, CertHealth Ed, RN(LD), DipCounselling, DipChild Psychology, is clinical nurse manager, Blackburn and Darwen community nurse team, Hyndburn and Ribble Valley Primary Care Trust


People with learning disabilities often have difficulty identifying and meeting their health needs and accessing appropriate health services. The Department of Health (1999a), NHS Executive (1998), and Mencap (1998) report that this group has increased needs compared with the general population, yet these needs are often poorly met. Problems people with learning disabilities have regarding access to secondary care include:



- Hospital staff not understanding their health needs;



- Problems with communication and behaviour;



- Under or over-protectiveness;



- Carers having to stay to provide basic care;



- Hospital staff’s negative attitude and lack of confidence.



Hospital admission is a relatively new area of need because people with learning disabilities were previously cared for in long-stay institutions and did not access general health services.



Literature review
The Royal College of Physicians (1998) describes disability in terms of a person’s encounter with daily living, the environment, and society. This acknowledges that while some people may be independent at home, a hospital environment may be disabling. Although research is limited, there is evidence that a problem exists (Brown and MacArthur, 1999; DoH, 1999a; Hart, 1998; NHS Executive, 1998; Barr, 1997; Lindsay, 1993).



After consulting people with learning disabilities and their carers, Mencap (1998) concluded those admitted to hospital often rely on carers to ensure their needs are met.



While early studies identify the problem, they provide only limited evidence regarding interventions that may improve the process. However, research with comparable groups Davis and Marsden (2001) shows evidence of effective interventions through the introduction of preadmission assessment and a specialist nurse.



Some studies have explored attitudes of hospital staff (Fitzsimmons and Barr, 1997; Slevin and Sines, 1996; Shanley and Guest, 1995; Biley, 1994) but there is little information about their experience of working with people with a learning disability. No research has been conducted on the intervention of learning disability nurses or the use of a standard preadmission assessment.



Research question and aims
The study’s research question was: ‘Does the use of a preadmission assessment improve the process of health care for people with learning disabilities accessing secondary health care services?’ Its primary aim was to explore the experience of the health care process from the perspective of four stakeholder groups:



- People with learning disabilities;



- Their family/carers;



- Hospital staff;



- Community learning disability nurses.



The study had three objectives: to identify key factors influencing the health care process; to evaluate the impact of the preadmission assessment tool; and to compare results of this study with the evidence base.



The study involved a process evaluation with multiple stakeholder analysis using semi-structured interviews. A focus group was used to prepare for the study and information leaflets were produced explaining the study, including a version in symbols. The study was approved by the local research ethics committee.



Study sample



A convenience sample of four people with a learning disability with a planned hospital admission between September and December 2002 was identified through contact with community learning disability nurses. Inter- views were held with a number of stakeholders:



- Service users (n=4);



- Family members/carers (n=5);



- Hospital staff (n=6);



- Learning disability nurses (n=5).



One service user was unable to participate, but as it seemed important to include him, the other stakeholders reported his experience from their perspective. An extra member of hospital staff was included because one service user was admitted by one staff member but cared for by another, and both wanted to contribute.



The sample size was limited by the time available. Participant profile forms completed for each stakeholder enabled a comparison of personal characteristics, (for example level of disability, previous experience) with factors highlighted in the evidence base.



Data collection and analysis



Individual interviews were recorded (with permission) and transcribed for analysis. A standard set of questions was used but interviews were allowed to develop according to individuals’ experiences. Community nurses also completed preadmission assessments, followed up identified needs, and supported access to secondary care. Table 1 lists the elements of the assessment. I had no contact with participants until after admission. Interviews were conducted in accordance with guidelines written for the study.



A framework approach (Ritchie and Spencer, 1993) was used for data analysis. This had five stages: familiarisation, identifying a thematic framework, indexing, charting, and mapping and interpretation. Box 1 summarises the key features of this approach.



All data was analysed initially, after which a psychology colleague undertook a random secondary analysis and checked the coding framework for reliability and consistency. Robson (1997) suggests secondary analysis is necessary to ensure another person can follow what has happened in research studies and that findings and conclusions can be justified.



Triangulation - the use of different research methods - can enhance the credibility and dependability of research findings. In this study, triangulation of data from different stakeholder perspectives also enabled cross-referencing of variables that influenced the process.



Interpretative cross-case analysis



The service users in the study included children and adults, with a learning disability range from mild to severe. Carers included employed carers and parents, while hospital staff and community nurses were all registered nurses with varying experience.



First-level analysis of the data shows participants’ experiences were more positive than expected, and few areas of concern were raised. All service users received the intervention they were admitted for, and valued the support of their carer and community nurse. They felt they were treated the same as everyone else, and liked the nurses and attention they received. The food was good, and the hospital was clean. People felt it was better to get treatment early in the day rather than waiting.



Carers who stayed were happy with the support they received from hospital staff and learning disability nurses, and positive about multidisciplinary teamwork. They found staff members’ understanding of people with a learning disability improved as they got to know them. Carers worried about other patients being disturbed and found it acceptable to put service users in single rooms.



Hospital staff showed positive regard for service users and were positive about input from community nurses. One thought ‘mentoring’ was a good approach: ‘Working with people who are confident so they can see it is not quite as difficult as they imagined.’



Community nurses described the importance of preparing service users for admission, and of initial contact and preparation with hospital staff. They felt their presence reassured the other stakeholders, particularly one carer who had a learning disability and felt nervous around professionals. Community nurses pointed out that some service users appear more capable than they are, and that hospital staff have difficulty judging levels of functioning.



Having sufficient time was a significant factor, both for explanation and to be with the patient. Some found an introductory visit useful. Community nurses saw this as part of their ‘health facilitator’ role and also felt they should be involved in discharge planning.



Few negative issues emerged. One patient preferred a single room but none was available. Another felt the doctor spoke to other people instead of them and used ‘jargon’. One community nurse described a difficult waiting environment in a busy corridor. Hospital staff did not highlight anything negative.



Evaluation of preadmission assessment



The causal relationship between the use of a preadmission assessment and outcomes for people with a learning disability admitted to hospital was explored. Analysis is in the form of responses received from each stakeholder group to the assessment (names have been changed). Service user responses included:



- When his carer explained the purpose of assessment to Alan, despite limited verbal skills, he said: ‘That’s a good idea’;



- Lucy was pleased staff knew what she needed: ‘Because (the community nurse) told them’;



- Steven felt: ‘It helped, she (the nurse) described to me what it was going to be like in there, so it made me at ease, so I would know what I was putting myself into.’



Family/carer responses included:



- All carers felt it was important to help hospital staff understand how much the person could do for themselves, and what they needed support with;



- David’s mother said: ‘I think it just covered everything and it was in a format that you could read very easily. I just felt relaxed to go in without the added stress of explaining things to people when I am looking after a child at the same time.’



Hospital staff responses included:



- Although Alan was well known to hospital staff, they learnt things they had not previously known, and thought the assessment was particularly useful for new staff;



- Staff working with Mary said: ‘It’s an excellent idea. Very, very good, because a lot of nurses, like in a general hospital, don’t have experience in dealing with patients with learning disabilities, you know’;



- David’s nurses noted: ‘With the children with special needs you tend to find that their notes are very, very thick and it can take a considerable amount of time to actually find out what they are capable or not capable of doing, and their normal responses. I found that all the information that I needed for looking after David was on that sheet. I could not believe the day went so well. It was so well organised, well planned and everybody knew what they were doing. It was all due to the information received beforehand’;



- Staff working with Steven said: ‘I thought it was brilliant, and if everybody had information like that life would be a lot easier and quicker.’



Community learning disability staff responses include:



- The assessment took approximately 30-45 minutes to complete, and was a valuable way of getting information across to hospital staff to enable them to prepare for needs identified. It helped focus the service user on what was going to happen and provided an opportunity to address concerns;



- The way they wrote the assessment could present a positive image of the person, even where problems were identified. Hospital staff were pleased to accept the assessment and health action plan;



- Lucy’s community nurse said: ‘I think it is an excellent thing to actually have available for myself as well as the client. I found it less stressful actually having this to work through. The health action plan made it clear what would make Lucy’s stay in hospital better and more comfortable.’



- One community nurse commented: ‘Yes, it formalises things perhaps we have tried to do in the past but it makes it easier and it makes it one system.’



Evaluation of admissions showed consistently high satisfaction rating scores, with good correlation across all stakeholder groups. Key features relating to the use of the preadmission assessment are summarised in Table 1 in a case dynamics matrix (Miles and Huberman, 1994).



Main findings of the study



The study found preadmission assessment improves the experience of hospital admission for people with learning disabilities. All stakeholder groups evaluated the assessment positively, and it was highly rated in terms of content and construct credibility. The assessment:



- Identified specific health needs and increased hospital staff’s awareness and knowledge of the health needs of people with learning disabilities;



- Provided the focus for effective, person-centred care planning to take place;



- Helped overcome problems relating to communication, behaviour, and under/over-protectiveness;



- Gave carers more confidence in hospital staff;



- Gave hospital staff more confidence in working with people with learning disabilities;



- Provided a system for joint working, which reduced anxiety for all stakeholders;



- Enabled community nurses to act as effective health facilitators and support other stakeholders.



The study confirms some difficulties highlighted in previous research yet presents a more positive picture. People with a learning disability have a good understanding of their health needs, while learning disability nurses understand their clients’ health needs. They give good support and their intervention is valued and effective. Hospital staff found person-centred approaches could be effectively developed and implemented.



The study was limited by its small size and the single site. Replication in other areas would enhance credibility.



The results show the experience of the people involved was positive. Carers provided various levels of support, from occasional visits to 24-hour care and felt this was for the service user’s benefit. They felt learning disability nurses were better at communicating with hospital staff than they were, and that hospital staff were more likely to listen to other professionals.



Little environmental change was needed. Most service users could mix with other patients and while single rooms were appropriate for some, people with a learning disability should not be given them as a matter of course.



Hospital staff were more confident with more able people but less so where there were behaviour or communication problems, or other complex needs.



Hospital staff did not demonstrate the lack of knowledge and confidence and negative attitudes highlighted in the evidence base, but rather a lack of experience, training and preparation. They felt they had a lack of information about learning disability, and that it should be included within preregistration education.



Hospital staff gave the highest overall rating scores of all stakeholder groups. They were pleasantly surprised to meet the service users, enjoyed having them on the ward and valued carers’ staying to provide care. Initial fears were allayed by contact with the service users, supporting previous research (Slevin and Sines, 1996).



Hospital staff had a positive attitude towards learning disability nurses. They were complimentary about the nurses’ input, appreciated their support, and found their interventions effective.



The interventions from learning disability nurses correlated with strategies suggested by Barr (1997), designed to increase the quality and effectiveness of general health care services. They also supported results reported by Davis and Marsden (2001).



Impact of preadmission assessment



The assessment identified service users’ needs and enabled person-centred care planning. Consultation and active involvement were key elements of the process.



Carers felt the assessment gave them confidence in hospital staff and reduced their anxiety. They valued involvement and felt it important to highlight what service users could do and what they needed support with.



Hospital staff benefited by being better informed and prepared. They were able to cope with communication and complex behaviour problems because they were supported and knew what to expect. Learning disability nurses thought the assessment provided a standard tool. It was easy to read, comprehensive, straightforward to use, and enabled good liaison.



The most potentially difficult admission, of a person with autism, severe learning disability, no communication, and very difficult behaviour, received the highest overall rating scores. Hospital staff were prepared, flexible, and responsive to his complex needs. The learning disability nurse provided active liaison and support. His mother was relaxed, he was happy, and his health needs were fully met. Everyone involved said the assessment enabled staff to take a completely person-centred approach.



Hospital staff need to understand the health needs of people with learning disabilities, and work with specialist services to develop responsive and effective models of service provision. Active user involvement should be central to this process, and preadmission assessment is an effective way of ensuring this can happen as it facilitates communication between all stakeholders and improves their understanding of each other.



- This article has been double-blind peer-reviewed.

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