Assessing health needs in people with severe learning disabilities: a qualitative approach

Summary

• ? The nursing assessment, and the contribution it makes to the identification of an individual's health needs, is often a complex and multidimensional process. This is always true when the individual concerned has a severe learning disability.
• ? The nurse should develop the assessment in partnership with individuals who may experience major communication difficulties, or have unappreciated levels of perceptual or cognitive dysfunction. They may also live with the ongoing possibility that their affective or behavioural responses may be misinterpreted as ‘challenging behaviour’.
• ? This case study focuses upon one particular young man with a severe learning disability living in a community home. Drawing upon the principles of qualitative research methods, especially those of ‘grounded theory’, this study aims to demonstrate how these can be used to develop a uniquely person-centred assessment.
• ? A systematic process of observation, analysis and reflection produces a detailed picture of the individual and his or her particular health states.
• ? The strength of this approach is threefold. Firstly, the person is considered as an active participant and remains the central focus. Secondly, in contrast to many other forms of assessment, the person is viewed as dynamic with ever changing needs. Thirdly, the process of nursing judgement is made explicit and integrated into the assessment process.

     

Health screening for people with learning disabilities by a community learning disability nursing service in Northern Ireland

Over the last 30 years there has been a considerable increase in the life expectancy of people with learning disabilities. This has resulted in changing patterns of morbidity and mortality and an increasing recognition of the health needs of people with learning disabilities. Major strides forward have been made in the reduction of preventable illnesses among the general population. However, among people with learning disabilities such illnesses have received only limited health promotion attention until recently. In the last decade major gaps have been identified in the ability of current primary health services to respond to the needs of people with learning disabilities. The need to respond effectively to this situation has been identified as a priority by the current United Kingdom Government. Following an overview of the literature in relation to the changing health profile of people with learning disabilities and the need for health screening, consideration is given to some of the key difficulties which may be encountered when attempting to utilize current primary health services. The analysis of data derived from the health screening of 373 people with learning disabilities by a community nursing service in Down and Lisburn Health and Social Services Trust reveals the need for further action in relation to cardiovascular status, sensory deficits, mobility and aspects of sexual health.     

Emergency care for people with learning disabilities: what all nurses and midwives need to know

People with learning disabilities have high health needs and as a result will require access to all aspects of healthcare systems, including the emergency services. The evidence of the health needs experienced by this group is evolving and developing and they have a range of issues that will bring them into contact with general hospital and the emergency services. It is now apparent that they experience risks to their health when accessing general hospital care and action is required to identify and address their distinct health needs. Emergency services are often the first point of entry into the healthcare system and as a result they need to develop their knowledge and skills in meeting the health needs of this group. Partnership working with specialists in learning disability health and emergency care can help to improve care.     

Effective health care for people with learning disabilities: a formal carers' perspective

This paper explores the perceptions and experiences of formal carers, working in three different geographical locations in the south of England, in accessing primary health care for people with learning disabilities. The sample included six multidisciplinary, community learning disability teams and 11 managers of small homes for residents who had learning disabilities. Data were collected through focus group and individual semistructured interviews. Levels of collaboration between primary health care groups and the community learning disability teams and the managers of small homes were assessed. Questions were focused upon the importance of primary health care and the key care provider within the community setting. Although some good experiences were recorded, the overall levels of collaboration were poor. Health care was perceived as very important by all of the respondents. The general practitioner (GP) as the coordinator of health care was perceived as the normal model within our health care system but the majority of respondents questioned the effectiveness in relation to their own experiences of accessing health care for people with learning disabilities. The relocation of this role to the learning disability nurse was perceived as a possible solution.     

The evolving role of community nurses for people with learning disabilities: changes over an 11-year period

Aims and objectives. To provide an overview of the changes in the caseload and working practices of community nurses for people with learning disabilities (CNLDs) over an 11‐year period within one region of the UK. Background. Recent reviews of government policy within the UK and internationally have highlighted the need to promote inclusion and health facilitation for people with learning disabilities (intellectual disabilities). The CNLDs have been highlighted as having an integral role in achieving these objectives. However, little is known about the current role of community nurses and how this has evolved over the past decade. Designs and methods. A survey design was used in which the total population of CNLDs within one region of the UK were asked to complete a postal questionnaire. Results. Forty community nurses in Northern Ireland completed questionnaires. This provided information about 1559 people with learning disabilities on their current caseloads. Results showed less involvement with children, more focus on adults with physical and mental health needs and nurses often appeared to have a monitoring rather than an active clinical role. Data also identified an increasing caseload size and a pattern of referral largely from within learning disability services. Conclusions. The role of CNLDs has altered in Northern Ireland over the past 11 years with some evidence of a reorientation towards a more health‐oriented focus. Further consideration needs to be given to how well this will meet the changing needs of people with learning disabilities and their families in light of the increasing emphasis on the provision of inclusive services. Relevance to clinical practice. Community nurses need to review their current role, caseload management and links to primary and acute care if the policy objectives of inclusive services and health facilitation are to be achieved. It will also be necessary to revise their education preparation in light of the changing role of CNLDs.     

Cognitive behaviour therapy and people with learning disabilities: implications for developing nursing practice

People with learning disabilities are an ageing and increasing population and have been the subject of policy initiatives by the four countries of the UK, detailing the range of supports that need to be in place for this group. The evidence base of their mental health needs is growing and with it the need to ensure the full range of psychotherapies available to the general population are made available to people with learning disabilities. Cognitive Behaviour Therapy (CBT) is now a widely accepted and effective form of psychotherapy for many mental health problems and the evidence base is growing on the effectiveness with the learning disability population; however, the model needs to be applied differently for this group to take account of their cognitive impairment and support needs. Registered Nurses in Learning Disabilities are well placed to apply this approach within their clinical practice; however, there is an absence of leadership and direction in the development of CBT for this group of clinicians. There is a need to support education and practice development to contribute to addressing the emotional needs of people with learning disabilities. Action is required to support education to prepare Registered Nurses in Learning Disabilities to practice CBT and to contribute to the ongoing development of research in this area of clinical practice.     

Women with learning disabilities: risk behaviours and experiences of the cervical smear test

This paper reports the findings of a study on the views and experiences of women with learning disabilities regarding the cervical smear test. The experience and opinions of the carers were also taken into account. The study was carried out between 1997 and 1999 in Cambridgeshire. The factors that influenced whether women with a learning disability had a smear test included: sexual activity; number of sexual partners; pregnancy; and a past history of smoking. Women with a learning disability who had a cervical smear test most often experienced pain and difficulty with the procedure. Factors that enable women with a learning disability to undergo a cervical smear test, according to their experiences, will be discussed in this paper. These include: the importance of prolonged preparation; issues surrounding communication; the giving of information; and support from the carers. The implications of these findings for collaborative working between learning disability nurses and primary healthcare professionals in clinical practice are highlighted.     

Caregivers' reflections on their interactions with adult people with learning disabilities

People with learning disabilities and their professional carers often have difficulty interacting. The aim of this study was to illuminate carers' reflections on their interactions with adult people with learning disabilities. In a previous study, interactions between 16 carers and 11 residents with learning disabilities were recorded on video. In this study, stimulated recall interviews about the interactions were carried out with all the carers. The text was analysed using qualitative content analysis. The findings indicate that the carers reflected on both successful and unsuccessful interaction. Examples of successful interaction included understanding cues, satisfying needs, and managing challenging behaviours, and the carers reflected on the influences that successful interaction had on security, confidence, and satisfaction among the residents. Examples of unsuccessful interaction included failing to understand cues, failing to satisfy needs and failing to manage challenging behaviours, and the carers reflected on the consequences of such interaction, which included irritation, aggression and violence among the residents. Our findings have implications for interventions aimed at strengthening the competence of carers and developing strategies for managing challenging behaviour, in order to ensure high-quality care and a good working climate.     

Informed consent to healthcare interventions in people with learning disabilities – an integrative review

Title. Informed consent to healthcare interventions in people with learning disabilities – an integrative review. Aim. This paper is a report of an integrative review of informed consent to healthcare interventions in people with learning disabilities. Background. Consent to treatment lies at the heart of the relationship between patient and healthcare professional. In order for people with learning disabilities to have equity of access to health care, they need to be able to give informed consent to health interventions – or be assessed as incompetent to give consent. Data sources. The British Nursing Index (BNI), CINAHL, MEDLINE, Social Care Online, ERIC and ASSIA and PsycINFO databases were searched using the search terms: Consent or informed choice or capacity or consent to treat* or consent to examin* AND Learning disab* or intellectual* disab* or mental* retard* or learning difficult* or mental* handicap*. The search was limited to papers published in English from January 1990 to March 2007. Review methods. An integrative review was conducted and the data analysed thematically. Results. Twenty‐two studies were reviewed. The main themes identified were: life experience, interaction between healthcare professionals and participants, ability to consent, and psychometric variables. A consensus seemed to emerge that capacity to consent is greater in people with higher cognitive ability and verbal skills, but that the attitudes and behaviour of healthcare professionals was also a crucial factor. Conclusion. The findings support use of the functional approach to assessing mental capacity for the purpose of obtaining informed consent. Future research into informed consent in people with learning disabilities is needed using real life situations rather than hypothetical vignettes.     

The role of community nurses for people with learning disabilities: working with people who challenge

The locus of care for people with learning disabilities has transferred from institutional to community-based services. Increasingly people who have learning disabilities and additional challenging behaviours live in community settings. Spearheading the care for these people are community nurses for people with learning disabilities. This study aimed to explicate the role of these nurses in their day-to-day work with people who challenge. Using grounded theory methodology, 22 nurses were selected by theoretical sampling and interviewed. An analytical story and theoretical framework that emerged from the grounded data is presented. It is suggested that this framework has utility for practice.     

Preventing falls at home among people with intellectual disabilities: A scoping review

Background

Falls are common among people with intellectual disabilities. Many falls happen within the home. Our scoping review aimed to identify evidence for falls-risk factors and falls-prevention interventions for this population.

Method

We conducted a multi-database search to identify any type of published study that explored falls-risk factors or falls-prevention interventions for people with intellectual disabilities. Following a process of (i) title & abstract and (ii) full-text screening, data was extracted from the included studies and described narratively.

Results

Forty-one studies were included. Risks are multifactorial. There was limited evidence of medical, behavioural/psychological, or environmental interventions to address modifiable risk factors, and no evidence of the interventions' cost-effectiveness.

Conclusions

Clinically and cost effective, acceptable and accessible falls-prevention pathways should be available for people with intellectual disabilities who are at risk of falls from an earlier age than the general population.     

Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose.?Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking.

Method.?A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture.

Results.?A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals.

Conclusion.?Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

People with learning disabilities admitted to an assessment and treatment unit: impact on challenging behaviours and mental health problems

This study describes the evaluation of an assessment and treatment unit for people with learning disabilities. Results showed the main reasons for admission for the 48 people admitted to the unit were because of challenging behaviours and mental health problems. Valid and reliable scales were used to measure the behaviours and mental health problems of those admitted across three-time periods: pre-admission, during admission and post-admission. The analysis found significant reductions in challenging behaviours and mental health problems following admission to the unit. The unit was staffed by a multidisciplinary team with nurses making up the largest group of staff. A number of issues of concern are discussed including access to mental health services for people with learning disabilities, the need for robust community services and areas that require further research. In conclusion, the study found evidence supporting the value of the unit and how it may lessen distress in learning disabled people who are behaviourally disturbed. It is suggested that nurses played a key role in the unit but they need to make the support and caring they provide more visible. Nurses need to harness and make explicit the caring they provide for people with learning disabilities.     

Developing a non-aversive intervention strategy in the management of aggression and violence for people with learning disabilities using natural therapeutic holding

This paper builds upon a previous piece of research regarding the development of 'natural therapeutic holding' as a non-aversive alternative to control and restraint (C and R) in managing aggression and violence in people with learning disabilities. This paper represents aspects of an ongoing programme of research and explains the aims and values which underpin natural therapeutic holding by describing the theory, aims, values and practical application. The concepts of individual risk management and pro-active intervention strategies are discussed with illustrations of practical application given by means of a case study. The case study shows that over a relatively short period of time, an individual with severe learning disabilities who is aggressive and violent, learns alternative coping strategies to aggression and violence through the application of natural therapeutic holding. The article concludes that natural therapeutic holding is a very effective intervention strategy in the management of violence in people with learning disabilities from two perspectives: (a) it provides staff with safe, professional and ethical skills with which they can manage aggressive and violent clients and (b) as a therapy, natural therapeutic holding gives clients the opportunity to learn coping strategies which are more effective than violence.     

Caregivers' experiences of exposure to violence in services for people with learning disabilities

Exposure to violence is a commonly encountered problem in services for people with learning disabilities; Swedish studies have reported that 51-61% of caregivers are exposed to violence each year, and caregivers describe violence as being a 'normal' part of their working life. To illuminate the experience of being exposed to violence, we performed 50 narrative interviews with 44 caregivers working in services for people with learning disabilities. The tape-recorded interviews were transcribed verbatim and subjected to qualitative content analysis. The main findings indicate that caregivers' experiences of being exposed to violence can be related to two themes: falling apart, and keeping it together. Falling apart includes feelings of fear, powerlessness, sadness, anger and timelessness, while keeping it together concerns pleasure, respect, self-reflection and habituation. Destructive experiences of falling apart are balanced by a more constructive view of the situation, with the aim of respecting the resident as a whole person, and keeping the situation, and the caregivers themselves, together.     

People with learning disabilities who also have mental health problems: practice issues and directions for learning disability nursing

The plight of people with learning disabilities who have mental health problems has become an issue of contemporary importance in the provision of health services to this section of the population. This paper will argue that learning disability nursing has a central role to play in the promotion of mental health for this client group ( Department of Health 1995a ). However, learning disability nursing presently operates without a clear model of mental health. Therefore, before this potential can be realized there is a need to establish the common ground between the discourses of learning disability nursing and those of psychiatric nursing which might be related to this client group. This paper begins by identifying the background issues relating to the problems of meeting the mental health needs of people with learning disabilities. It then proposes that an applied behavioural approach has the potential to provide a coherent theory that can link the discourses of normalization, developmental psychiatry and mental health nursing, whilst also establishing the applied behavioural approach as a powerful technology upon which meaningful interventions can be designed.