Journal of Nursing Management, 2014, 22, 803–810
Development of a competency tool for adult trained nurses caring for people with intellectual disabilities ALISON E. WHILE
BSc, MSc, Phd, RN, RHV
1
and LOUISE L. CLARK
BA, MSc, SRN, RN (LD), PGCAP
2
1
Professor, Community Nursing, and 2Lecturer, Mental Health & Intellectual Disability, Kings College London, Florence Nightingale School of Nursing and Midwifery, London, UK
Correspondence Louise L. Clark Mental Health & Intellectual Disability Florence Nightingale School of Nursing & Midwifery King’s College London 57 Waterloo Road London SE1 8WA UK E-mail: [email protected]
(2014) Journal of Nursing Management 22, 803–810. Development of a competency tool for adult trained nurses caring for people with intellectual disabilities
WHILE A. E. & CLARK L. L.
Aim To develop and test a competency assessment tool for adult trained nurses caring for people with intellectual disabilities in hospital. Background The report ‘Death by indifference’ in 2007 highlighted inadequate care given to people with intellectual disabilities in hospital. This study sought to develop and test a competency assessment tool for adult trained nurses in the care of this patient group. Methods A review of the literature informed the topic guide for focus groups (n = 4) with experienced adult trained nurses, learning disability nurses and people with intellectual disabilities (n = 25). Expert interviews (n = 29) were conducted to identify emergent themes. A draft competency assessment tool was reviewed by an expert panel (n = 5) and tested within a convenience sample (n = 34; response rate 28%) at a local district general hospital across several clinical specialities. Results The participants considered themselves to be either ‘novice’ or ‘competent’ across most items. The tool was then redrafted and minor amendments made. ‘Little or no knowledge’ or ‘novice’ was reported in areas such as consent, diagnostic overshadowing and management of self harm. Conclusion Use of the competency assessment tool will support assessment of current levels of knowledge and skills and inform educational provision of the workforce. Implications for nursing management Use of the competency assessment tool will inform nursing management of skill levels and educational need. Keywords: competency tool, intellectual availability Accepted for publication: 30 July 2012
Background It is estimated that between 2% (Hardy et al. 2010) and 2.5% (Department of Health 2001) of the UK population have diagnosed intellectual disabilities (learning disabilities). There is also a selection of undiagnosed subgroupings within the general population, many of whom have additional mental health or substance misuse problems and have never received a DOI: 10.1111/jonm.12002 ª 2013 John Wiley & Sons Ltd
formal diagnosis. In addition, there are no figures for those who have undiagnosed borderline intellectual disabilities (Deb et al. 2001). However, there is evidence that those with intellectual disabilities experience higher rates of physical health problems and comorbidity than the general population (Department of Health 2004, Jansen et al. 2004,) and that the access of marginalized groups to health care is problematic (Gulliford et al. 2002). 803
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Currently, people with intellectual disabilities are treated within mainstream health care but the evidence suggests that it has been unsatisfactory both in terms of access and delivery of care, resulting in health inequalities (Department of Health 2004, Jansen et al. 2004, Mencap 2004, 2007, 2012). ‘Death by Indifference’ (Mencap 2007) described the disturbing circumstances in which six people with known intellectual disabilities died while in the care of mainstream health care. In response to this the Government commissioned an independent inquiry under the chair of Sir Jonathan Michael (2008), which recommended that all undergraduate and postgraduate clinical education should include competency-based mandatory training in the care of people with intellectual disabilities. As a result of ‘Death by Indifference’ (Mencap 2007) and subsequent inquiries (Michael 2008, Parliamentary & Health Service Ombudsman 2008), the Department of Health (2010b,a) issued a letter to all strategic health authorities and local authorities (adult services) requiring a general review of: (1) the effectiveness of the systems for planning and meeting the full range of needs of people with intellectual disabilities in their area; (2) the capacity and capability of the services that they provide and/or commission for their local populations to meet the additional and often complex needs of this population group. Morgan et al. (2000) estimated that 14% of the general population and 26% of the population with intellectual disabilities require hospital-based services during their life-time despite health needs of this latter group often going undiagnosed (Khran et al. 2006). However, mainstream health care is generally illprepared and ill-equipped to care for people with intellectual disabilities, especially if there are additional problems such as mental health or behavioural problems (Griffiths et al. 2008, Department of Health 2010a,b). Sowney and Barr (2006) identified six potential barriers to delivering high-quality care for people with intellectual impairment, namely: existing poor practice, lack of respect for individuals, communication difficulties, lack of understanding around consent, lack of knowledge, lack of training and education and dependence upon carers. In addition to higher physical health-care needs, people with intellectual disabilities have a high prevalence of mental health and behavioural problems as a result of damage to the brain, specific syndromes and a reduced capacity to manage challenging personal situations (Fraser & Nolan 1995). ‘Diagnostic overshadowing’ further complicates diagnosis with a tendency 804
to attribute symptoms and behaviour associated with illness to the intellectual disability, thereby overlooking the illness itself (While & Clark 2010). Thus, a primary diagnosis (such as epilepsy or psychosis) may result in practitioners assuming that all symptoms in the patient (either observed by others, or described) are attributable to the primary condition thus preventing further investigation of diagnosis of other comorbid conditions. Research through the 1990s examined the attitudes of nurses towards patients with intellectual disabilities in the acute hospital environment (Murray & Chambers 1991, Slevin & Sines 1996) and revealed a general lack of knowledge and education in relation to this patient group. The evidence suggests that this situation has remained unchanged (Michael 2008, Parliamentary & Health Service Ombudsman 2008). This study aimed to develop a competency assessment tool for adult trained nurses (RN1/A on the UK Nursing and Midwifery Council Register) working with patients who have intellectual disabilities in the acute hospital setting.
Method A multimethod design was adopted which included: Phase 1, a review of the literature; Phase 2, interviews and focus groups; Phase 3, development and refinement of the competency tool; and Phase 4, a field test of the competency tool.
Phase 1, review of the literature The literature review focused on the identification of actual and potential contributions of nurses (RN1 and RNA on the Nursing and Midwifery Council Register) with people with intellectual disabilities in hospital settings. Reference lists of text books and the following databases were searched: Medline, Psychinfo, CINAHL, Cochrane Library, NELH and Prodigy. There has been guidance in recent years to enable high-quality patient care and enhance the professional development of nurses through competency frameworks, such as in diabetes (TREND 2010) and multiple sclerosis (While et al. 2007). There are no specific competency frameworks for adult nurses caring for people with intellectual disabilities. In addition there is a paucity of research in general relating to adult nurses’ ability to identify or define ‘intellectual disability’ and there are no available competency frameworks for adult nurses in the care of people with intellectual disabilities. Clark (2006) has argued that, ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
Competency tool for nurses caring for people with intellectual disabilities
unless there is investment in the education of all health professionals in the immediate future, there will be a forgotten group of people who receive substandard services without the power to demand adequate services. There are also no guidelines from either the Nursing and Midwifery Council (NMC) or European Directives which stipulate the inclusion of intellectual disability education within adult nurses preregistration programmes, which may explain why there are no published current competencies. The need for sufficient expertise in the workforce at the point of patient contact is not unique to the field of intellectual disabilities. While and Clark (2010) have discussed the need for clinical nurse specialists leading care delivery relating to intellectual disabilities, as exists in other specialities such as diabetes and incontinence; these nurses could be complemented by specialist nurses within ward teams so that competency is related to the nurse career trajectory. It is suggested that this ‘disorder approach’ provides a potential model for championing the care needs of people with intellectual disabilities in all areas of health care as a policy change alone (Department of Health 2001) has not been effective. The implementation of ‘Agenda for Change’ (Department of Health 2004) introduced a consistent development structure across National Health Service (NHS) careers, with a focus on appropriate knowledge and skills to their level of responsibility and with the requirement of knowledge acquisition and new skill development across the career trajectory. The adoption of a recognizable career ladder relating to clinical leadership, as found in diabetes, tissue viability and continence, may offer a solution to the provision of sufficient expertise across different levels of health care to deliver high-quality services (While & Clark 2010). Many nursing competency frameworks (see, for example, Manley & Garbutt 2000) differentiate the knowledge and skills required at different levels of the career pathway and the vision set out in ‘Modernising Nursing Careers; Setting the Direction’ (Department of Health 2006) includes directives to link nurses’ roles and competencies to the NHS careers framework.
Phase 2, interviews and focus groups Individual interviews were conducted with key informants who comprised senior learning disability nurses (n = 9), parent carers who were nurses (n = 5), a parent carer/teacher (n = 1), people with mild intellectual disabilities (n = 8), a consultant psychiatrist (n = 1), ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
a consultant psychologist (n = 1), a psychiatric liaison nurse for accident and emergency (n = 1), a speech and language therapist (n = 1), an advocate (n = 1) and senior adult trained nurses (n = 9) (Tables 1 and 2). Topic guides were developed drawing upon the literature to ensure coverage of the dimensions of the nurse’s role in relation to people with intellectual disabilities. A joint focus group was held with a learning disability community team and a specialist mental health in learning disability team (n = 11). A second focus group was held with the modern matrons from the medical and surgical directorates at a district general hospital (n = 6). Two focus groups were also held with people with intellectual disabilities in two London boroughs (n = 8), each with an independent advocate present. The interview data were analysed to establish what people with intellectual disabilities expect from adult trained nurses and what is valued by them and their families. The role of the nurse regarding people with intellectual disabilities was explored, as were the skills and knowledge required of the nurses to deliver high-quality care. All interview data were content analysed at the manifest level and then merged into subthemes before being categorized into overarching themes. The themes were independently scrutinized by two researchers to ensure rigour. The overarching themes that emerged from the interviews and focus groups were categorized into domains of practice such as communication, skills, consent and best interest, specialist needs regarding people with intellectual disability, epilepsy, desensitization, ICD-10/DSM IV (Statistical Classification of Diseases and Related Health Problems/Diagnostic and Statistical Manual of Mental Disorders), maternity needs, emergency treatment, risk assessment, restraint and medication.
Phase 3, development and refinement of the competency tool This phase of the study focused on development and refinement of the competency tool in preparation for field testing. The content validity of the draft tool was reviewed by an expert panel (n = 5) comprising experienced RN1/A nurses working across acute hospital settings, RN5 (learning disability nurses) and nurse educators. An initial competency tool was prepared in the form of a questionnaire comprising 14 specific domains 805
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Table 1 Participants in the different study elements Participants
Interviews
People with intellectual disability Carers (either nurses or teacher) of people with ID Experts re. intellectual disability Adult nurses in clinical practice
n n n n
= = = =
Focus groups
0 6 (nurses n = 5, teacher n = 1) 14 9
Table 2 Field test participant characteristics (n = 34) Characteristic
n
Female Male Years qualified 2 3–5 6–10 11+ Band 5 6 7
29 3 2 5 5 20 15 5 11
with a series of items for the nurse to self rate using a four-point Likert scale as either ‘little or no knowledge’, ‘novice’, ‘competent’ or ‘expert’. The expert panel recommended the removal of two proposed competency categories that were considered unnecessary for adult nurses, namely, desensitization and ICD-10/DSM IV. The maternity category was also removed as the competency tool related to adult nurses and not midwives. Eight items were reworded to improve their clarity and two items were re-categorized in order to provide a logical flow to the proposed competency tool. The domains identified for inclusion in the final draft competency tool were: assessment and care planning (10 items), management of health-care interventions (six items), assessment of pain (five items), consent and capacity (eight items), epilepsy (seven items), risk assessment and management (four items), health promotion (four items), emergency and urgent care (seven items), understanding of intellectual disabilities (five items), communication with people with intellectual disabilities (six items), communication with other professionals and agencies (four items), and prevention and management of challenging behaviour (eight items). The competency tool was presented in booklet form and definitions of terminology were provided on the front page to explain the terms ‘intellectual disability’, ‘diagnostic overshadowing/behavioural masking/behavioural overshadowing’ and the 806
n n n n
= = = =
8 0 11 6
Field test survey – – – n = 120, 34 responded (28%)
‘biopsychosocial approach’. Demographic data were sought at the end of the competency tool which included: gender, years since qualification and current clinical grade. The respondent was also asked: ‘Is there anything else you would like to tell us about working with people with intellectual disabilities?’.
Phase 4, field testing of the competency tool The final draft competency tool was distributed to a convenience sample of nurses working in acute wards, Accident and Emergency and other departments of a district general hospital. The respondents were asked to rate their competence on a four-point Likert scale (little/no knowledge, novice, competent, expert; see Figure 1). Distribution of the competency tool occurred over a 2 week period. Potential participants (n = 120) were offered the draft competency tool by the study researchers or members of the hospital management team at naturally occurring meetings and staff handovers. Only 34 nurses returned completed questionnaires (response rate of 28%).
Ethical considerations Ethical practice was adhered to with an emphasis on voluntary participation, a right to withdrawal at any time and confidentiality. Ethical approval was sought and granted through Medical Research Ethics Council (MREC) (Ref 10/H0711/25) and permission to offer participation was given by the director of nursing at the NHS trust after NHS research and development approval. The field test was completed anonymously and participation was voluntary.
Findings There was some item non-response to the demographic data requested. The majority of respondents (n = 20) had been qualified for between 11 and 15 years. Clinical nurse bands 5 (n = 15), 6 (n = 5) and 7 (n = 11) were represented, although some participants did not provide their current grade (n = 3). ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
Competency tool for nurses caring for people with intellectual disabilities
Assessment and care planning relating to people with intellectual disabilities
Little or no knowledge
Novice
Competent
Expert
Adopt a person-centred approach demonstrating a respect for diversity Utilize a biopsychosocial approach to assessment, care planning and evaluation. Participate in pre-admission assessment of patient with intellectual disabilities and plan individualized care accordingly Know the interplay between physical and mental health and the role that ‘behavioural overshadowing’ may have in this Understand ‘diagnostic overshadowing’ and the impact that it may have on the assessment process Discharge plan in partnership with patient, carers, and other health and social care professionals Identify carers’ needs for support following discharge Conduct assessment of patient’s specific hygiene needs Understand particular feeding and swallowing issues of individual patients Know the support approaches and prompts – physical, gestural and verbal
Management of health-care interventions relating to people with intellectual disabilities Individualize preparation of patient for procedures (surgery, insertion of catheters, venepuncture, cannulation, etc) Organise additional support to patient with intellectual disabilities as required Be creative and individualise the management and care of patient postoperatively. Know commonly used medicines including their formulations, routes of administration, known side-effects and contra-indications (e.g. buccal midazolam, rectal diazepam) Understand medicine acceptance issues and have ability to advise Understand differing drug dosages for those with intellectual disabilities
Assessment of pain relating to people with intellectual disabilities Understand bio-psychosocial model of pain and its control Know the differences between pain and distress Understand issue of ‘diagnostic overshadowing’ and impact on accurate assessment of pain Know the range of pain indicators (verbal, gestural, facial expression, behavioural, physiological) Understand challenging behaviour as potentially signalling pain
Consent relating to people with intellectual disabilities Understand the Consent Form 4 and when it is used Know the Mental Capacity Act (2005) and the main principles of the Act Know the process required to assess an individual’s capacity to make a health-care decision Know approaches that can be employed to enhance an individual’s capacity to promote informed choice where ever possible Understand the principle of ‘best interests’. Know the relevant professionals who should be invited to a ‘best interests’ meeting Understand the role of the Independent Mental Capacity Advocate and the referral system Understand legislation and relevant policy guidelines related to vulnerable adult.
Management of epilepsy relating to people with intellectual disabilities Understand the association between epilepsy and intellectual disability Be able to recognise seizures and document appropriately Carry out seizure management and anti epileptic drug treatment Know seizure classification and appropriate medication Know seizure triggers
Recognize status epilepticus Know about the existence of non-epileptic psychogenic seizures
Know the importance of transferable skills across similar patient groups and the promotion of this to others
Risk assessment relating to people with intellectual disabilities
Communication relating to people with intellectual disabilities
Conduct individualized risk assessments and subsequent management planning for people with intellectual disabilities when in the acute environment Assess and implement measures to manage, reduce or remove risk that could be detrimental to patients, staff, self or others Know the difference between risk assessment, planning and management and the importance of a biopsychosocial approach in the process Understand the role of risk assessment/management in the care planning process and the importance of a regular process of update
Know how to directly communicate with the patient with intellectual disabilities Be able to modify communication in line with patient’s level of understanding, including patients who cannot speak Be able to utilize available resources creatively to enhance communication Can identify and implement improvements regarding ward signage, posters, information leaflets to enhance acceptability Understand why people may repeat themselves or others Be able to liaise with relevant professions, e.g. Community Team for Learning Disability
Health promotion relating to people with intellectual disabilities Be able to use the biopsychological approach Use a variety of methods to aid communication and skills teaching in health promotion (pictures, photos) Develop and evaluate new information resources to meet patients needs for health promotion Evaluate individual’s ability to self-manage aspects of health condition
Emergency and urgent hospital care relating to people with intellectual disabilities Know the types of emergencies more common to people with intellectual disability Use a creative and flexible approach to care Know methods used to limit distress Manage self-harm and self-injurious behaviour Understand the patient journey in relation to waiting times and specific triage needs Be able to balance the use of invasive procedures and possible distress to the patient Recognize the need to balance diagnostic over shadowing with overinvestigation
Understanding of intellectual disabilities
Communicating with others involved with people with intellectual disabilities Understand the physical, emotional and social needs of family carers of people with intellectual disabilities. Contribute to carer’s assessment (if appropriate) Communicate with specialist professionals where needed Develop protocols in partnership with learning disability professionals for joint working
Challenging behaviour relating to people with intellectual disabilities Understand the term ‘challenging behaviour’ Understand some of the causes of ‘challenging behaviour’ Know the interplay between mental and physical health problems and challenging behaviour Can identify strategies to prevent and/or reduce incidences of challenging behaviour Recognize potential trigger factors which may lead to such behaviours Know tools which may aid the interpretation and management of challenging behaviour, e.g. ABC charts Know and be able to use de-escalation techniques Know the law in relation to physical interventions/restraint
Know health problems commonly associated with intellectual disability Understand autism and necessary environmental adaptations for these individuals whilst in hospital Understand different perceptions and responses to intellectual disabilities by different cultural, class and ethnic groups Know the different contexts which people with intellectual disabilities may be a part of: the family, special and mainstream education, day care services, supported living schemes and specialist care settings
Figure 1 Intellectual disabilities nurse competency tool [Copyright belongs to Kings college of London (2010)]. ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
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A wide range of clinical areas were represented in the dataset and included medicine, surgery, accident and emergency, emergency assessment unit, outpatient department, stroke unit and the cardiology department, with six participants not disclosing their place of practice. Gross variance analysis of field-test data was undertaken using SPSS version 17 (IBM Corporation, USA). Overall, the limited dataset indicated that most adult trained hospital nurses considered themselves either ‘novice’ or ‘competent’ across most of the items. Generally few participants considered themselves ‘expert’; however, some participants considered themselves expert in more generic areas such as ‘adopting a person-centred approach and respecting diversity’ (n = 5), assessment of hygiene needs (n = 6) and understanding feeding and swallowing issues (n = 3). A large proportion of the sample reported ‘little or no knowledge’ or ‘novice’ regarding consent and capacity relating to people with intellectual disabilities. This occurred across most items in this domain: use of consent form 4 (n = 18), the Mental Capacity Act (n = 21), the process to assess an individual’s capacity (n = 17), approaches to enhance capacity (n = 17), understanding the role of the independent mental capacity advocate (n = 21) and the vulnerable adults policy (n = 22). Similarly, most participants reported ‘Little or no knowledge’ or ‘novice’ regarding pre-admission assessment of people with intellectual disabilities (n = 15), diagnostic overshadowing (n = 23), the interplay between mental and physical health issues (n = 23), methods used to limit distress (n = 13), management of self-harm (n = 21), specific health problems associated with intellectual disability (n = 20) and environmental adaptations for patients with autistic spectrum disorders (n = 23). The management of epilepsy highlighted areas of ‘little or no knowledge’ or ‘novice’, including the relationship between epilepsy and intellectual disability (n = 19), seizure classification and medication (n = 14) and seizure triggers (n = 16). The field test data indicated a variety of potential educational needs within the sample who contributed to the data set.
Discussion The Michael (2008) Inquiry called for mandatory training of all NHS staff (both professional and administrative), which should be competency based, relevant to practice and incorporating educational packages that address stigma, labelling and discrimination. While and Clark (2010) also recommended 808
the identification and development of expert staff with additional knowledge and skills relating to people with intellectual disabilities in every care team so that they can provide a vital resource within the healthcare teams. The literature review revealed no current specific competency framework for adult nurses in the care of people with intellectual disabilities and no NMC guidelines or European directives could be located. The ‘Valuing People’ White Paper (Department of Health 2001) called for the end of specialist services for people with intellectual disability, with the role of the learning disability nurse largely becoming that of a health facilitator. It could be argued that ‘Valuing People’ (Department of Health 2001) encouraged negligence, given the shift away from specialist services for people with intellectual disability without a clear strategy to ‘up-skill’ adult trained nurses. The focus groups and interviews with adult trained nurses revealed that they had little or no understanding of the role expected of them in the care of people with intellectual disability. The response rate during the field test provided a small data set, which precluded detailed data analysis and may have reflected the subject area, either owing to a perceived lack of knowledge and skills in the speciality or lack of interest. Areas indicated for education provision from the limited field test data were widespread, suggesting an overall lack of knowledge. However, it is possible that participants may have had differing perceptions of the various competency levels and underestimated or overestimated their capabilities. Of the participants that responded, many reported not feeling competent in crucial areas such as the assessment of the patient with intellectual disabilities, knowledge of diagnostic overshadowing and health conditions specific to this patient group. Methods to limit distress and the management of self harm were also cited, which suggests that nurses may not feel competent in the care of other patient groups, such as those with mental health problems, as many of the competencies are transferable. The implementation of a competency tool in this speciality may help overcome some of the care deficits identified by a recent report by Mencap (2012), which suggests that the situation of inadequate care of people with intellectual disabilities in mainstream NHS services has not improved. Recommendations from the Parliamentary and Health Service Ombudsman’s (2008) report and the Michael (2008) inquiry would not appear to have been addressed. The report ‘Death by Indifference: 74 Deaths and Counting’ ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
Competency tool for nurses caring for people with intellectual disabilities
(Mencap 2012) details further cases of neglect where basic care such as nutrition, hydration and pain relief needs were neglected and a lack of respect and dignity towards patients was evident.
tional packages so that future educational investment is based upon evidence that such packages improve practice.
Implications for nursing management Limitations The small data set (28%) precluded detailed data analysis. Further testing will be needed to provide a robust analysis of areas of limited knowledge and subsequent detailed educational needs analysis across the adult nursing workforce. It is unknown whether the poor response rate was related to lack of interest in the subject area, unwillingness to admit to a lack of knowledge as a qualified nurse, the nature of busy wards and departments or other factors. The field test was conducted at one site, a small district general hospital, which may not be representative of the knowledge level/skill base of adult registered nurses working in other acute hospitals either nationally or internationally. The field test invited respondents to self-rate their knowledge and skill base regarding their capabilities to care for people with intellectual disabilities. It is possible that they may have either underestimated or overestimated their capabilities.
Use of the competency assessment tool will enable managers to identify skills in the nursing workforce regarding care of patients with intellectual disabilities. It may also be used in educational needs analysis to inform provision. However, education on its own will not be enough to bring about change and must be accompanied by a system change that includes nurses who can champion acute care for people with intellectual disabilities (While & Clark 2010).
Sources of funding This study was funded through NHS London education budget from South London Healthcare NHS Trust.
Ethical approval Ethical approval was given by Medical Research Ethics Council (MREC) (Ref 10/H0711/25).
Conclusion The competency assessment tool can be used as a framework for professional development of nurses to assess their skills and knowledge in the care of people with intellectual disabilities. It is important that nurses completing the competency assessment tool understand what the competency item is asking of them and know that there is no expectation that they will be experts without further education and training. The competency tool gives nurses the opportunity to develop flexible and creative ways of working with people with intellectual disabilities in addition to the development of the expert nurse in the care of this patient group in the hospital setting. Nurses may wish to use the tool to consider ways in which they can utilize some of the competencies across other patient groups such as those with severe and enduring mental health problems, acquired brain injury and dementia. Core educational preparation of all health-care staff within undergraduate programmes, and as part of continuing professional development, will be an important step in achieving effective care of people with intellectual disabilities (While & Clark 2010). It will be essential to test the effect of specific educaª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
References American Psychiatric Association (2000) Diagnostic and statistical manual of mental disorders. (4th ed., text revision). Washington, DC, APA. Clark L.L. (2006) Intellectual impairment: a forgotten speciality. International Journal of Nursing Studies 43, 525–526. Deb S., Thomas M. & Bright C. (2001) Mental disorder in adults with intellectual disability; prevalence of functional psychiatric illness among a community based population between 16 and 64 years. Journal of Intellectual disability Research 45, 495–505. Department of Health (2001) Valuing People: a New Strategy for Learning Disability for the 21st Century. Department of Health, London. Department of Health (2004) Agenda for Change. Department of Health, London. Department of Health (2006) Modernising Nursing Careers: Setting the Direction. Department of Health, London. Department of Health (2010a) Parliamentary Ombudsman’s Report on Learning Disability – Recommendations for Local Authorities. Gateway Reference Number: 13380. Department of Health, London. Department of Health (2010b) Healthcare for People with Learning Disabilities – Recommendations of the Parliamentary and Health Service Ombudsman. Gateway Reference Number: 13380. Department of Health, London. Fraser W. & Nolan M. (1995) Psychiatric disorders in mental retardation. In Mental Health in Mental Retardation; Recent
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Advances and Practices(N. Bouras ed.), pp. 79–92. Cambridge University Press, Cambridge. Griffiths P., Winterhalder R., Clark L.L. & Hicks A. (2008) The future of services for intellectual impairment. In Learning Disability and Other Intellectual Impairments: Meeting Needs Throughout Health Services (L.L. Clark & P. Griffiths eds), pp. 217–232. Wiley, Chichester. Gulliford M., Figueroa-Munoz J., Morgan M. et al. (2002) Three-year Plan for Assessing and Encouraging Improvement in the Health and Healthcare of adults with a Learning Disability. 2006–2009. Health Care Commission, London. Hardy S., Chaplin E. & Woodward P. (2010) Mental Health Nursing of Adults with Learning Disabilities. Royal College of Nursing, London. Jansen D.E.M.C., Krol B., Groothroff J.W. & Post D. (2004) People with intellectual disability and their health problem; a review of comparative studies. Journal of Intellectual Disability Research 48 (92), 93–102. Khran G., Hammond L. & Turner A. (2006) A cascade of disparities: health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 12, 70–82. Manley K. & Garbutt R. (2000) Paying Peter and Paul: reconciling concepts of expertise with competency for a clinical career structure. Journal of Clinical Nursing 9, 360–369. Mencap (2004) Treat me Right! Mencap, London. Mencap (2007) Death by Indifference. Mencap, London. Mencap (2012) Death by Indifference: 74 Deaths and Counting. Mencap, London. Michael J. (2008) Healthcare for all. Report of an Independent Inquiry Report into Access to Healthcare for People with Learning Disabilities. Available at: http://www.iahpld.org.uk/ Healthcare_final.pdf, accessed 2 February 2008.
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Morgan C., Ahmed Z. & Kerr M. (2000) Health care provision for people with learning disability: record-linkage study of epidemiology and factors contributing to hospital care uptake. British Journal of Psychiatry 176, 37–41. Murray M. & Chambers M. (1991) Effects on contact nursing students attitudes to patients. Nurse Education Today 11, 363–367. Parliamentary and Health Service Ombudsman (2008) Six Lives; the Provision of Public Services to People with Learning Disabilities. Office of the Parliamentary Ombudsman, London. Slevin E. & Sines D. (1996) Attitudes of nurses in a general hospital towards people with intellectual disabilities; influences of contact, and graduate-non graduate status, a comparative study. Journal of Advanced Nursing 2, 1116–1126. Sowney M. & Barr O. (2006) Caring for adults with intellectual disabilities: perceived challenges for nurses in accident and emergency units. Journal of Advanced Nursing 55 (1), 36–45. TREND (2010) An Integrated Career and Competency Framework for Diabetes Nursing, 2nd edn. SB Communications Group, London. While A. & Clark L.L. (2010) Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution. Journal of Nursing Management 18, 166–172. While A., Ullman R. & Forbes A. (2007) Development and validation of a learning needs assessment scale: a continuing professional education tool for multiple sclerosis specialist nurses. Journal of Clinical Nursing 16, 1099–1108. World Health Organisation (1994) International classification of mental and behavioral disorders (ICD-10). Geneva, Churchill Livingstone.
ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
Development of a competency tool for adult trained nurses caring for people with intellectual disabilities ALISON E. WHILE
BSc, MSc, Phd, RN, RHV
1
and LOUISE L. CLARK
BA, MSc, SRN, RN (LD), PGCAP
2
1
Professor, Community Nursing, and 2Lecturer, Mental Health & Intellectual Disability, Kings College London, Florence Nightingale School of Nursing and Midwifery, London, UK
Correspondence Louise L. Clark Mental Health & Intellectual Disability Florence Nightingale School of Nursing & Midwifery King’s College London 57 Waterloo Road London SE1 8WA UK E-mail: [email protected]
(2014) Journal of Nursing Management 22, 803–810. Development of a competency tool for adult trained nurses caring for people with intellectual disabilities
WHILE A. E. & CLARK L. L.
Aim To develop and test a competency assessment tool for adult trained nurses caring for people with intellectual disabilities in hospital. Background The report ‘Death by indifference’ in 2007 highlighted inadequate care given to people with intellectual disabilities in hospital. This study sought to develop and test a competency assessment tool for adult trained nurses in the care of this patient group. Methods A review of the literature informed the topic guide for focus groups (n = 4) with experienced adult trained nurses, learning disability nurses and people with intellectual disabilities (n = 25). Expert interviews (n = 29) were conducted to identify emergent themes. A draft competency assessment tool was reviewed by an expert panel (n = 5) and tested within a convenience sample (n = 34; response rate 28%) at a local district general hospital across several clinical specialities. Results The participants considered themselves to be either ‘novice’ or ‘competent’ across most items. The tool was then redrafted and minor amendments made. ‘Little or no knowledge’ or ‘novice’ was reported in areas such as consent, diagnostic overshadowing and management of self harm. Conclusion Use of the competency assessment tool will support assessment of current levels of knowledge and skills and inform educational provision of the workforce. Implications for nursing management Use of the competency assessment tool will inform nursing management of skill levels and educational need. Keywords: competency tool, intellectual availability Accepted for publication: 30 July 2012
Background It is estimated that between 2% (Hardy et al. 2010) and 2.5% (Department of Health 2001) of the UK population have diagnosed intellectual disabilities (learning disabilities). There is also a selection of undiagnosed subgroupings within the general population, many of whom have additional mental health or substance misuse problems and have never received a DOI: 10.1111/jonm.12002 ª 2013 John Wiley & Sons Ltd
formal diagnosis. In addition, there are no figures for those who have undiagnosed borderline intellectual disabilities (Deb et al. 2001). However, there is evidence that those with intellectual disabilities experience higher rates of physical health problems and comorbidity than the general population (Department of Health 2004, Jansen et al. 2004,) and that the access of marginalized groups to health care is problematic (Gulliford et al. 2002). 803
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Currently, people with intellectual disabilities are treated within mainstream health care but the evidence suggests that it has been unsatisfactory both in terms of access and delivery of care, resulting in health inequalities (Department of Health 2004, Jansen et al. 2004, Mencap 2004, 2007, 2012). ‘Death by Indifference’ (Mencap 2007) described the disturbing circumstances in which six people with known intellectual disabilities died while in the care of mainstream health care. In response to this the Government commissioned an independent inquiry under the chair of Sir Jonathan Michael (2008), which recommended that all undergraduate and postgraduate clinical education should include competency-based mandatory training in the care of people with intellectual disabilities. As a result of ‘Death by Indifference’ (Mencap 2007) and subsequent inquiries (Michael 2008, Parliamentary & Health Service Ombudsman 2008), the Department of Health (2010b,a) issued a letter to all strategic health authorities and local authorities (adult services) requiring a general review of: (1) the effectiveness of the systems for planning and meeting the full range of needs of people with intellectual disabilities in their area; (2) the capacity and capability of the services that they provide and/or commission for their local populations to meet the additional and often complex needs of this population group. Morgan et al. (2000) estimated that 14% of the general population and 26% of the population with intellectual disabilities require hospital-based services during their life-time despite health needs of this latter group often going undiagnosed (Khran et al. 2006). However, mainstream health care is generally illprepared and ill-equipped to care for people with intellectual disabilities, especially if there are additional problems such as mental health or behavioural problems (Griffiths et al. 2008, Department of Health 2010a,b). Sowney and Barr (2006) identified six potential barriers to delivering high-quality care for people with intellectual impairment, namely: existing poor practice, lack of respect for individuals, communication difficulties, lack of understanding around consent, lack of knowledge, lack of training and education and dependence upon carers. In addition to higher physical health-care needs, people with intellectual disabilities have a high prevalence of mental health and behavioural problems as a result of damage to the brain, specific syndromes and a reduced capacity to manage challenging personal situations (Fraser & Nolan 1995). ‘Diagnostic overshadowing’ further complicates diagnosis with a tendency 804
to attribute symptoms and behaviour associated with illness to the intellectual disability, thereby overlooking the illness itself (While & Clark 2010). Thus, a primary diagnosis (such as epilepsy or psychosis) may result in practitioners assuming that all symptoms in the patient (either observed by others, or described) are attributable to the primary condition thus preventing further investigation of diagnosis of other comorbid conditions. Research through the 1990s examined the attitudes of nurses towards patients with intellectual disabilities in the acute hospital environment (Murray & Chambers 1991, Slevin & Sines 1996) and revealed a general lack of knowledge and education in relation to this patient group. The evidence suggests that this situation has remained unchanged (Michael 2008, Parliamentary & Health Service Ombudsman 2008). This study aimed to develop a competency assessment tool for adult trained nurses (RN1/A on the UK Nursing and Midwifery Council Register) working with patients who have intellectual disabilities in the acute hospital setting.
Method A multimethod design was adopted which included: Phase 1, a review of the literature; Phase 2, interviews and focus groups; Phase 3, development and refinement of the competency tool; and Phase 4, a field test of the competency tool.
Phase 1, review of the literature The literature review focused on the identification of actual and potential contributions of nurses (RN1 and RNA on the Nursing and Midwifery Council Register) with people with intellectual disabilities in hospital settings. Reference lists of text books and the following databases were searched: Medline, Psychinfo, CINAHL, Cochrane Library, NELH and Prodigy. There has been guidance in recent years to enable high-quality patient care and enhance the professional development of nurses through competency frameworks, such as in diabetes (TREND 2010) and multiple sclerosis (While et al. 2007). There are no specific competency frameworks for adult nurses caring for people with intellectual disabilities. In addition there is a paucity of research in general relating to adult nurses’ ability to identify or define ‘intellectual disability’ and there are no available competency frameworks for adult nurses in the care of people with intellectual disabilities. Clark (2006) has argued that, ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
Competency tool for nurses caring for people with intellectual disabilities
unless there is investment in the education of all health professionals in the immediate future, there will be a forgotten group of people who receive substandard services without the power to demand adequate services. There are also no guidelines from either the Nursing and Midwifery Council (NMC) or European Directives which stipulate the inclusion of intellectual disability education within adult nurses preregistration programmes, which may explain why there are no published current competencies. The need for sufficient expertise in the workforce at the point of patient contact is not unique to the field of intellectual disabilities. While and Clark (2010) have discussed the need for clinical nurse specialists leading care delivery relating to intellectual disabilities, as exists in other specialities such as diabetes and incontinence; these nurses could be complemented by specialist nurses within ward teams so that competency is related to the nurse career trajectory. It is suggested that this ‘disorder approach’ provides a potential model for championing the care needs of people with intellectual disabilities in all areas of health care as a policy change alone (Department of Health 2001) has not been effective. The implementation of ‘Agenda for Change’ (Department of Health 2004) introduced a consistent development structure across National Health Service (NHS) careers, with a focus on appropriate knowledge and skills to their level of responsibility and with the requirement of knowledge acquisition and new skill development across the career trajectory. The adoption of a recognizable career ladder relating to clinical leadership, as found in diabetes, tissue viability and continence, may offer a solution to the provision of sufficient expertise across different levels of health care to deliver high-quality services (While & Clark 2010). Many nursing competency frameworks (see, for example, Manley & Garbutt 2000) differentiate the knowledge and skills required at different levels of the career pathway and the vision set out in ‘Modernising Nursing Careers; Setting the Direction’ (Department of Health 2006) includes directives to link nurses’ roles and competencies to the NHS careers framework.
Phase 2, interviews and focus groups Individual interviews were conducted with key informants who comprised senior learning disability nurses (n = 9), parent carers who were nurses (n = 5), a parent carer/teacher (n = 1), people with mild intellectual disabilities (n = 8), a consultant psychiatrist (n = 1), ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
a consultant psychologist (n = 1), a psychiatric liaison nurse for accident and emergency (n = 1), a speech and language therapist (n = 1), an advocate (n = 1) and senior adult trained nurses (n = 9) (Tables 1 and 2). Topic guides were developed drawing upon the literature to ensure coverage of the dimensions of the nurse’s role in relation to people with intellectual disabilities. A joint focus group was held with a learning disability community team and a specialist mental health in learning disability team (n = 11). A second focus group was held with the modern matrons from the medical and surgical directorates at a district general hospital (n = 6). Two focus groups were also held with people with intellectual disabilities in two London boroughs (n = 8), each with an independent advocate present. The interview data were analysed to establish what people with intellectual disabilities expect from adult trained nurses and what is valued by them and their families. The role of the nurse regarding people with intellectual disabilities was explored, as were the skills and knowledge required of the nurses to deliver high-quality care. All interview data were content analysed at the manifest level and then merged into subthemes before being categorized into overarching themes. The themes were independently scrutinized by two researchers to ensure rigour. The overarching themes that emerged from the interviews and focus groups were categorized into domains of practice such as communication, skills, consent and best interest, specialist needs regarding people with intellectual disability, epilepsy, desensitization, ICD-10/DSM IV (Statistical Classification of Diseases and Related Health Problems/Diagnostic and Statistical Manual of Mental Disorders), maternity needs, emergency treatment, risk assessment, restraint and medication.
Phase 3, development and refinement of the competency tool This phase of the study focused on development and refinement of the competency tool in preparation for field testing. The content validity of the draft tool was reviewed by an expert panel (n = 5) comprising experienced RN1/A nurses working across acute hospital settings, RN5 (learning disability nurses) and nurse educators. An initial competency tool was prepared in the form of a questionnaire comprising 14 specific domains 805
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Table 1 Participants in the different study elements Participants
Interviews
People with intellectual disability Carers (either nurses or teacher) of people with ID Experts re. intellectual disability Adult nurses in clinical practice
n n n n
= = = =
Focus groups
0 6 (nurses n = 5, teacher n = 1) 14 9
Table 2 Field test participant characteristics (n = 34) Characteristic
n
Female Male Years qualified 2 3–5 6–10 11+ Band 5 6 7
29 3 2 5 5 20 15 5 11
with a series of items for the nurse to self rate using a four-point Likert scale as either ‘little or no knowledge’, ‘novice’, ‘competent’ or ‘expert’. The expert panel recommended the removal of two proposed competency categories that were considered unnecessary for adult nurses, namely, desensitization and ICD-10/DSM IV. The maternity category was also removed as the competency tool related to adult nurses and not midwives. Eight items were reworded to improve their clarity and two items were re-categorized in order to provide a logical flow to the proposed competency tool. The domains identified for inclusion in the final draft competency tool were: assessment and care planning (10 items), management of health-care interventions (six items), assessment of pain (five items), consent and capacity (eight items), epilepsy (seven items), risk assessment and management (four items), health promotion (four items), emergency and urgent care (seven items), understanding of intellectual disabilities (five items), communication with people with intellectual disabilities (six items), communication with other professionals and agencies (four items), and prevention and management of challenging behaviour (eight items). The competency tool was presented in booklet form and definitions of terminology were provided on the front page to explain the terms ‘intellectual disability’, ‘diagnostic overshadowing/behavioural masking/behavioural overshadowing’ and the 806
n n n n
= = = =
8 0 11 6
Field test survey – – – n = 120, 34 responded (28%)
‘biopsychosocial approach’. Demographic data were sought at the end of the competency tool which included: gender, years since qualification and current clinical grade. The respondent was also asked: ‘Is there anything else you would like to tell us about working with people with intellectual disabilities?’.
Phase 4, field testing of the competency tool The final draft competency tool was distributed to a convenience sample of nurses working in acute wards, Accident and Emergency and other departments of a district general hospital. The respondents were asked to rate their competence on a four-point Likert scale (little/no knowledge, novice, competent, expert; see Figure 1). Distribution of the competency tool occurred over a 2 week period. Potential participants (n = 120) were offered the draft competency tool by the study researchers or members of the hospital management team at naturally occurring meetings and staff handovers. Only 34 nurses returned completed questionnaires (response rate of 28%).
Ethical considerations Ethical practice was adhered to with an emphasis on voluntary participation, a right to withdrawal at any time and confidentiality. Ethical approval was sought and granted through Medical Research Ethics Council (MREC) (Ref 10/H0711/25) and permission to offer participation was given by the director of nursing at the NHS trust after NHS research and development approval. The field test was completed anonymously and participation was voluntary.
Findings There was some item non-response to the demographic data requested. The majority of respondents (n = 20) had been qualified for between 11 and 15 years. Clinical nurse bands 5 (n = 15), 6 (n = 5) and 7 (n = 11) were represented, although some participants did not provide their current grade (n = 3). ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
Competency tool for nurses caring for people with intellectual disabilities
Assessment and care planning relating to people with intellectual disabilities
Little or no knowledge
Novice
Competent
Expert
Adopt a person-centred approach demonstrating a respect for diversity Utilize a biopsychosocial approach to assessment, care planning and evaluation. Participate in pre-admission assessment of patient with intellectual disabilities and plan individualized care accordingly Know the interplay between physical and mental health and the role that ‘behavioural overshadowing’ may have in this Understand ‘diagnostic overshadowing’ and the impact that it may have on the assessment process Discharge plan in partnership with patient, carers, and other health and social care professionals Identify carers’ needs for support following discharge Conduct assessment of patient’s specific hygiene needs Understand particular feeding and swallowing issues of individual patients Know the support approaches and prompts – physical, gestural and verbal
Management of health-care interventions relating to people with intellectual disabilities Individualize preparation of patient for procedures (surgery, insertion of catheters, venepuncture, cannulation, etc) Organise additional support to patient with intellectual disabilities as required Be creative and individualise the management and care of patient postoperatively. Know commonly used medicines including their formulations, routes of administration, known side-effects and contra-indications (e.g. buccal midazolam, rectal diazepam) Understand medicine acceptance issues and have ability to advise Understand differing drug dosages for those with intellectual disabilities
Assessment of pain relating to people with intellectual disabilities Understand bio-psychosocial model of pain and its control Know the differences between pain and distress Understand issue of ‘diagnostic overshadowing’ and impact on accurate assessment of pain Know the range of pain indicators (verbal, gestural, facial expression, behavioural, physiological) Understand challenging behaviour as potentially signalling pain
Consent relating to people with intellectual disabilities Understand the Consent Form 4 and when it is used Know the Mental Capacity Act (2005) and the main principles of the Act Know the process required to assess an individual’s capacity to make a health-care decision Know approaches that can be employed to enhance an individual’s capacity to promote informed choice where ever possible Understand the principle of ‘best interests’. Know the relevant professionals who should be invited to a ‘best interests’ meeting Understand the role of the Independent Mental Capacity Advocate and the referral system Understand legislation and relevant policy guidelines related to vulnerable adult.
Management of epilepsy relating to people with intellectual disabilities Understand the association between epilepsy and intellectual disability Be able to recognise seizures and document appropriately Carry out seizure management and anti epileptic drug treatment Know seizure classification and appropriate medication Know seizure triggers
Recognize status epilepticus Know about the existence of non-epileptic psychogenic seizures
Know the importance of transferable skills across similar patient groups and the promotion of this to others
Risk assessment relating to people with intellectual disabilities
Communication relating to people with intellectual disabilities
Conduct individualized risk assessments and subsequent management planning for people with intellectual disabilities when in the acute environment Assess and implement measures to manage, reduce or remove risk that could be detrimental to patients, staff, self or others Know the difference between risk assessment, planning and management and the importance of a biopsychosocial approach in the process Understand the role of risk assessment/management in the care planning process and the importance of a regular process of update
Know how to directly communicate with the patient with intellectual disabilities Be able to modify communication in line with patient’s level of understanding, including patients who cannot speak Be able to utilize available resources creatively to enhance communication Can identify and implement improvements regarding ward signage, posters, information leaflets to enhance acceptability Understand why people may repeat themselves or others Be able to liaise with relevant professions, e.g. Community Team for Learning Disability
Health promotion relating to people with intellectual disabilities Be able to use the biopsychological approach Use a variety of methods to aid communication and skills teaching in health promotion (pictures, photos) Develop and evaluate new information resources to meet patients needs for health promotion Evaluate individual’s ability to self-manage aspects of health condition
Emergency and urgent hospital care relating to people with intellectual disabilities Know the types of emergencies more common to people with intellectual disability Use a creative and flexible approach to care Know methods used to limit distress Manage self-harm and self-injurious behaviour Understand the patient journey in relation to waiting times and specific triage needs Be able to balance the use of invasive procedures and possible distress to the patient Recognize the need to balance diagnostic over shadowing with overinvestigation
Understanding of intellectual disabilities
Communicating with others involved with people with intellectual disabilities Understand the physical, emotional and social needs of family carers of people with intellectual disabilities. Contribute to carer’s assessment (if appropriate) Communicate with specialist professionals where needed Develop protocols in partnership with learning disability professionals for joint working
Challenging behaviour relating to people with intellectual disabilities Understand the term ‘challenging behaviour’ Understand some of the causes of ‘challenging behaviour’ Know the interplay between mental and physical health problems and challenging behaviour Can identify strategies to prevent and/or reduce incidences of challenging behaviour Recognize potential trigger factors which may lead to such behaviours Know tools which may aid the interpretation and management of challenging behaviour, e.g. ABC charts Know and be able to use de-escalation techniques Know the law in relation to physical interventions/restraint
Know health problems commonly associated with intellectual disability Understand autism and necessary environmental adaptations for these individuals whilst in hospital Understand different perceptions and responses to intellectual disabilities by different cultural, class and ethnic groups Know the different contexts which people with intellectual disabilities may be a part of: the family, special and mainstream education, day care services, supported living schemes and specialist care settings
Figure 1 Intellectual disabilities nurse competency tool [Copyright belongs to Kings college of London (2010)]. ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
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A wide range of clinical areas were represented in the dataset and included medicine, surgery, accident and emergency, emergency assessment unit, outpatient department, stroke unit and the cardiology department, with six participants not disclosing their place of practice. Gross variance analysis of field-test data was undertaken using SPSS version 17 (IBM Corporation, USA). Overall, the limited dataset indicated that most adult trained hospital nurses considered themselves either ‘novice’ or ‘competent’ across most of the items. Generally few participants considered themselves ‘expert’; however, some participants considered themselves expert in more generic areas such as ‘adopting a person-centred approach and respecting diversity’ (n = 5), assessment of hygiene needs (n = 6) and understanding feeding and swallowing issues (n = 3). A large proportion of the sample reported ‘little or no knowledge’ or ‘novice’ regarding consent and capacity relating to people with intellectual disabilities. This occurred across most items in this domain: use of consent form 4 (n = 18), the Mental Capacity Act (n = 21), the process to assess an individual’s capacity (n = 17), approaches to enhance capacity (n = 17), understanding the role of the independent mental capacity advocate (n = 21) and the vulnerable adults policy (n = 22). Similarly, most participants reported ‘Little or no knowledge’ or ‘novice’ regarding pre-admission assessment of people with intellectual disabilities (n = 15), diagnostic overshadowing (n = 23), the interplay between mental and physical health issues (n = 23), methods used to limit distress (n = 13), management of self-harm (n = 21), specific health problems associated with intellectual disability (n = 20) and environmental adaptations for patients with autistic spectrum disorders (n = 23). The management of epilepsy highlighted areas of ‘little or no knowledge’ or ‘novice’, including the relationship between epilepsy and intellectual disability (n = 19), seizure classification and medication (n = 14) and seizure triggers (n = 16). The field test data indicated a variety of potential educational needs within the sample who contributed to the data set.
Discussion The Michael (2008) Inquiry called for mandatory training of all NHS staff (both professional and administrative), which should be competency based, relevant to practice and incorporating educational packages that address stigma, labelling and discrimination. While and Clark (2010) also recommended 808
the identification and development of expert staff with additional knowledge and skills relating to people with intellectual disabilities in every care team so that they can provide a vital resource within the healthcare teams. The literature review revealed no current specific competency framework for adult nurses in the care of people with intellectual disabilities and no NMC guidelines or European directives could be located. The ‘Valuing People’ White Paper (Department of Health 2001) called for the end of specialist services for people with intellectual disability, with the role of the learning disability nurse largely becoming that of a health facilitator. It could be argued that ‘Valuing People’ (Department of Health 2001) encouraged negligence, given the shift away from specialist services for people with intellectual disability without a clear strategy to ‘up-skill’ adult trained nurses. The focus groups and interviews with adult trained nurses revealed that they had little or no understanding of the role expected of them in the care of people with intellectual disability. The response rate during the field test provided a small data set, which precluded detailed data analysis and may have reflected the subject area, either owing to a perceived lack of knowledge and skills in the speciality or lack of interest. Areas indicated for education provision from the limited field test data were widespread, suggesting an overall lack of knowledge. However, it is possible that participants may have had differing perceptions of the various competency levels and underestimated or overestimated their capabilities. Of the participants that responded, many reported not feeling competent in crucial areas such as the assessment of the patient with intellectual disabilities, knowledge of diagnostic overshadowing and health conditions specific to this patient group. Methods to limit distress and the management of self harm were also cited, which suggests that nurses may not feel competent in the care of other patient groups, such as those with mental health problems, as many of the competencies are transferable. The implementation of a competency tool in this speciality may help overcome some of the care deficits identified by a recent report by Mencap (2012), which suggests that the situation of inadequate care of people with intellectual disabilities in mainstream NHS services has not improved. Recommendations from the Parliamentary and Health Service Ombudsman’s (2008) report and the Michael (2008) inquiry would not appear to have been addressed. The report ‘Death by Indifference: 74 Deaths and Counting’ ª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
Competency tool for nurses caring for people with intellectual disabilities
(Mencap 2012) details further cases of neglect where basic care such as nutrition, hydration and pain relief needs were neglected and a lack of respect and dignity towards patients was evident.
tional packages so that future educational investment is based upon evidence that such packages improve practice.
Implications for nursing management Limitations The small data set (28%) precluded detailed data analysis. Further testing will be needed to provide a robust analysis of areas of limited knowledge and subsequent detailed educational needs analysis across the adult nursing workforce. It is unknown whether the poor response rate was related to lack of interest in the subject area, unwillingness to admit to a lack of knowledge as a qualified nurse, the nature of busy wards and departments or other factors. The field test was conducted at one site, a small district general hospital, which may not be representative of the knowledge level/skill base of adult registered nurses working in other acute hospitals either nationally or internationally. The field test invited respondents to self-rate their knowledge and skill base regarding their capabilities to care for people with intellectual disabilities. It is possible that they may have either underestimated or overestimated their capabilities.
Use of the competency assessment tool will enable managers to identify skills in the nursing workforce regarding care of patients with intellectual disabilities. It may also be used in educational needs analysis to inform provision. However, education on its own will not be enough to bring about change and must be accompanied by a system change that includes nurses who can champion acute care for people with intellectual disabilities (While & Clark 2010).
Sources of funding This study was funded through NHS London education budget from South London Healthcare NHS Trust.
Ethical approval Ethical approval was given by Medical Research Ethics Council (MREC) (Ref 10/H0711/25).
Conclusion The competency assessment tool can be used as a framework for professional development of nurses to assess their skills and knowledge in the care of people with intellectual disabilities. It is important that nurses completing the competency assessment tool understand what the competency item is asking of them and know that there is no expectation that they will be experts without further education and training. The competency tool gives nurses the opportunity to develop flexible and creative ways of working with people with intellectual disabilities in addition to the development of the expert nurse in the care of this patient group in the hospital setting. Nurses may wish to use the tool to consider ways in which they can utilize some of the competencies across other patient groups such as those with severe and enduring mental health problems, acquired brain injury and dementia. Core educational preparation of all health-care staff within undergraduate programmes, and as part of continuing professional development, will be an important step in achieving effective care of people with intellectual disabilities (While & Clark 2010). It will be essential to test the effect of specific educaª 2013 John Wiley & Sons Ltd Journal of Nursing Management, 2014, 22, 803–810
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Advances and Practices(N. Bouras ed.), pp. 79–92. Cambridge University Press, Cambridge. Griffiths P., Winterhalder R., Clark L.L. & Hicks A. (2008) The future of services for intellectual impairment. In Learning Disability and Other Intellectual Impairments: Meeting Needs Throughout Health Services (L.L. Clark & P. Griffiths eds), pp. 217–232. Wiley, Chichester. Gulliford M., Figueroa-Munoz J., Morgan M. et al. (2002) Three-year Plan for Assessing and Encouraging Improvement in the Health and Healthcare of adults with a Learning Disability. 2006–2009. Health Care Commission, London. Hardy S., Chaplin E. & Woodward P. (2010) Mental Health Nursing of Adults with Learning Disabilities. Royal College of Nursing, London. Jansen D.E.M.C., Krol B., Groothroff J.W. & Post D. (2004) People with intellectual disability and their health problem; a review of comparative studies. Journal of Intellectual Disability Research 48 (92), 93–102. Khran G., Hammond L. & Turner A. (2006) A cascade of disparities: health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 12, 70–82. Manley K. & Garbutt R. (2000) Paying Peter and Paul: reconciling concepts of expertise with competency for a clinical career structure. Journal of Clinical Nursing 9, 360–369. Mencap (2004) Treat me Right! Mencap, London. Mencap (2007) Death by Indifference. Mencap, London. Mencap (2012) Death by Indifference: 74 Deaths and Counting. Mencap, London. Michael J. (2008) Healthcare for all. Report of an Independent Inquiry Report into Access to Healthcare for People with Learning Disabilities. Available at: http://www.iahpld.org.uk/ Healthcare_final.pdf, accessed 2 February 2008.
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