Art & science | patient groups

Specific standards of care for adults with intellectual disabilities Tanya Friese and Sarah Ailey describe the introduction of care plans for this patient group at a medical centre in the US, and an online programme to tutor nurses in their use Correspondence [email protected] Tanya Friese is an instructor Sarah Ailey is an associate professor Both in community, systems and mental health, Rush University College of Nursing, Chicago, Illinois, United States Date of submission September 23 2014 Date of acceptance February 25 2015 Peer review This article has been subject to double-blind review and checked using antiplagiarism software. Author guidelines nm-author-guidelines

Abstract Individuals with intellectual and developmental disabilities (ID) represent a small but important group of patients who have high levels of hospitalisation, and who are likelier to have more complications and spend more days in intensive care than those without ID admitted to hospital for similar problems. However, nursing and medical staff lack training in the care of people with ID. To address the needs of this patient group, an academic medical centre in the mid-western United States has developed specific standards of nursing care. This article describes the standards, which cover nursing interventions to enhance communication, the provision of safe and accessible environments, and collaboration with and support for caregivers; it also outlines the online educational programme that was developed for nurses to support their implementation and use of the standards. Keywords Intellectual disabilities, developmental disabilities, nursing care plans, standards of care, communication

Background People with intellectual and developmental disabilities (ID) have high rates of hospitalisation. In Canada, for example, people with ID are more than six times more likely to be hospitalised for ambulatory care sensitive conditions than those without, and even more likely if they have conditions such as schizophrenic disorders or epilepsy (Balogh et al 2010). In the UK, members of this patient group are 1.6 times more likely to have emergency hospital admissions for ambulatory care sensitive conditions compared with those without ID (Glover and Evison 2013). 32 April 2015 | Volume 22 | Number 1

People with ID in the US typically receive health care in the same outpatient and inpatient settings as the general population, while in other parts of the world, such as the UK, health care for this patient cohort is often provided in specialised services (Jess et al 2008). But in both types of system the needs of people with ID are often poorly met when they are admitted; indeed a recent systematic review of hospital experiences of people with ID across several countries (Iacono et al 2014) found that they continue to be poor. Lack of training and knowledge among hospital staff, communication styles and uncertainty about how to manage people with ID are all barriers to providing good quality hospital care (Krahn et al 2006, Sowney and Barr 2006), while mobility, sensory and communication difficulties make it challenging for these patients to identify their own health needs (Sowney and Barr 2006). People with ID are more likely to require stays in intensive care and have one or more complications than those hospitalised for similar reasons in the general population (Ailey et al 2014a). Complications can be related to multiple chronic conditions (Ailey et al 2014b). Mencap (2007) reported six in-hospital deaths in the UK thought to be related to unequal healthcare and institutional discrimination. The Mencap report led to an independent inquiry and a series of recommendations about the care of people with ID; in a follow-up report, Mencap (2012) discussed 74 more deaths thought to be related to delays in diagnosis and treatment, lack of basic care and poor communication. The 2012 Mencap report made several recommendations, for example for better education of healthcare professionals about the needs of NURSING MANAGEMENT

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people with ID, tracking the care of people with ID, involving families and carers in all cases, and making reasonable adjustments to service provision to take into account the specific needs of this population. In 2002 the US surgeon general issued Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation, now called ID, which noted ‘glaring deficiencies’ in the health and health care of individuals with ID. One action step was to ‘identify, adapt, and develop standards of care for use in monitoring and improving the quality of care for individuals with ID’ (US Department of Health and Human Services 2002).

Introducing standards of care Publication in the US of Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals (Joint Commission 2010) provides guidance on how hospital staff can meet the needs of patients with ID better. The roadmap notes: ‘Every patient that enters the hospital has a unique set of needs – clinical symptoms that require medical attention and issues specific to the individual that can affect his or her care. As patients move along the care continuum, it is important for hospitals to be prepared to identify and address not just the clinical aspects of care, but also the spectrum of patient’s demographic and personal characteristics.’ The document also stresses the importance of recording efforts to realise effective communication, cultural competence and patient- and family-centred care. While it is designed for all patients, it is clear that people with ID have unique needs and often face distinct challenges in healthcare settings. Agreement is not universal, however, about whether there should be specific standards of care for this population (O’Hara 2006). At Rush University Medical Center, we have developed and implemented a programme to support specific standards of care for people with ID. The programme is aimed at fostering awareness and consideration of the issues involved, increasing the competencies required to meet the needs of these patients and their families, and promoting partnerships for better patient outcomes. We wanted to integrate these standards into the medical centre’s electronic medical record system, develop and implement an educational module for nurses on the standards of patient care, and undertake an interim evaluation of the standards and educational module. The goal was to improve the hospital experience and care outcomes for patients with ID and their families. NURSING MANAGEMENT

Framework for implementation Many noteworthy healthcare improvement initiatives are nurse driven (Wood 2011), while patient safety can be positively affected by organisational change (Ramanujam et al 2005). In our project, the Institute for Healthcare Improvement’s (IHI) collaborative model for achieving breakthrough improvement was used along with the plan-do-study-act (PDSA) change strategy (IHI 2003). The model asks three questions: what are we trying to accomplish, what changes that will result in improvement can we make, and how will we know that a change is an improvement? What are we trying to accomplish? In 2007, staff at Rush University Medical Center (RUMC) were invited to attend a ‘town hall’ meeting at which they said they felt ill prepared to manage the care of people with ID (Ailey and Hart 2010, Agency for Healthcare Research and Quality 2013). As a result, a multidisciplinary Adults with Intellectual and Developmental Disabilities Committee (AIDDC), including education and clinical staff from across the medical centre and the community, was established. The purpose of the committee is to improve hospital experiences of people with ID, enhance the skills required by staff to deliver appropriate care to individuals with ID, and promote partnership in the healthcare experience (Ailey and Hart 2010). What changes can we make that will result in improvement? The AIDDC decided that developing care plans specific to people with ID was one change that could improve services. This decision was based on knowledge about the high rates of hospitalisation and complications as discussed above, a staff survey (n=292) and a survey of nurses who specialise in ID (n=63) and work with individuals in the community. In the first survey, hospital staff raised concerns about communication, how to avoid patients becoming upset, and how to help calm them, assess their pain and plan discharge (Ailey and Hart 2010); local community advocates and care providers associated with the AIDDC indicated similar concerns. The second survey, of nurses specialising in ID, revealed major problems in their perception of hospital staff’s understanding of: their clients’ communication patterns, how to alter the environment to make patients less frightened or more calm, clients’ levels of functioning, and holding family conferences when needed. Finally, a literature review, explained below, and questions to university academic medical centres regarding any existing specific standards of care, revealed no benchmark nursing standards of patient care for people with ID. April 2015 | Volume 22 | Number 1 33

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Art & science | acute patientcare groups The committee decided to develop care plans that focus on communication, managing the environment, reducing behaviours that affect care, and collaboration with and providing support to caregivers, as well as providing education for staff. This decision was also based on efforts to improve medical record systems, specifically to improve the aggregation, analysis and communication of patient information ( 2014). The care plans aggregate the data in one place, making it easier to communicate this information between healthcare providers and use it in planning care. The third question asked by the model, about how we know that change is an improvement, will be addressed later in the article.

Plan-Do-Study-Act (PDSA) The PDSA change strategy develops change in real-world settings (IHI 2003). The ‘plan’ phase involves bringing a team together, setting aims, and selecting and implementing changes. After establishing the AIDDC team, and deciding to improve the hospital experience of people with ID and create care plans, the next steps were to bring people together to plan the development of the care plans and an educational module for staff, and to organise implementation. Planning included the precursory ‘do’ phase of a literature review, working with information technology (IT) staff, developing an online educational module, and providing focused, face-to-face instructive sessions on units known to have frequent admissions. Plans also included how to conduct the ‘study’ phase, which would be an interim evaluation leading to the ‘act’ stage so that further improvements could be made. Plan – the team A team of four generalist entry-level master’s (GEM) graduate nursing students, two nursing faculty educators and a librarian was created to develop draft care plans. Other interprofessional colleagues on the project included social workers, physicians, patient care technicians, information technology personnel, education and training experts, human resource experts, community advocates, and patients with ID and their families. Do – developing care plans The four GEM students conducted a literature review, assisted by the other team members. Reference to literature databases, including CINAHL, SCOPUS, PubMed and EBSCOhost, helped identify evidence-based interventions for patients with ID to enhance communication, maintain accessible and safe environments, reduce behaviours that impede 34 April 2015 | Volume 22 | Number 1

co-operation in care, and alleviate role strain among caregivers. The ‘study’ and ‘act’ phases will be addressed later in the article.

Literature review Key terms for the literature search included: ‘electronic medical records’, ‘intellectual disabilities’, ‘cognitive disabilities’, ‘developmental disabilities’, ‘impairment’, ‘patient care’, ‘mental retardation’, ‘care giver’, ‘role strain behaviour’, ‘communication’, ‘environment’, ‘patient comfort’, ‘nursing models’, ‘dissemination of information’, ‘nursing information’, ‘nursing care plan’, ‘evidence-based practice’, ‘research’, ‘group homes’, ‘health services utilisation’, ‘health characteristics’, and ‘lack of healthcare provider knowledge’. Interventions were found in nursing, medicine, occupational therapy, social work and special education. Care plan drafts were developed as part of a faculty-led nursing student leadership project (Ailey et al 2015). Communication A major component of the care plans is enhancing communication, an important issue with any population, but particularly for people with ID (Balogh et al 2005, 2010); Mansell (2007) suggests, for example, that 45% of adults with cognitive disabilities have significant impairment of communication. Healthcare staff may also miss visual or hearing impairment, and difficulties with language production can be compounded by sensory problems, such as auditory impairment (Gates and Barr 2009). The ‘enhancing communication’ section of the care plans identifies barriers to and methods for improving communication. Nurses are directed to assess patients’ receptive and expressive communication, and their communication intent. They are also directed to assess communication preferences and use alternative ways to explain what will happen during any necessary tests and procedures. Using alternative methods, such as symbols, photos and colour codes, also forms part of improving the environment (Backer et al 2009). Environment The ‘maintaining a safe and accessible environment’ section of the care plans contains interventions to modify the environment to enhance participation in care, including having as far as possible consistent caregivers and taking into account factors such as noise, schedule changes, touch and light. Petry et al (2005) found that consistent, positive responsiveness by trusted individuals improves quality of life for individuals NURSING MANAGEMENT

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with multiple disabilities. It is important to take into account individuals’ personal preferences and enable people to control their environment as much as possible to decrease their anxiety about moving from home to hospital (Petry et al 2005), for example by maintaining certain ‘fixed rituals’. Attention must be paid to room temperature, ventilation, lighting, humidity and hygiene to help patients remain as comfortable as possible during their hospital stays (Petry et al 2005). Incorporating certain colours, lighting and sounds can create a soothing environment and minimise the potential for distress, especially for people with autism spectrum disorder (Backer et al 2009). Personal care should be provided in quiet and pleasant environments to help improve patients’ experiences, and it is important that staff members know about patients’ food and drink preferences and about how and when it is best to provide these (Petry et al 2005). Behaviour This section of the care plans proposes interventions to improve patients’ co-operation with care. For example, nurses are reminded to consider that a particular behaviour can be an attempt by someone to communicate unmet needs (Kevan 2003). A physical assessment is needed because medical conditions can often go undetected (Clark and Gates 2006) and people with ID may therefore be at higher risk of experiencing pain. Some patients with ID may engage in banging their heads or punching their faces to counteract distress (Lovell 2011). To reduce challenging behaviours, it is necessary to consider factors other than the behaviour itself, and families are often the most important source of evidence about how patients express physical pain, discomfort or illness (Lovell 2011). Caregiver involvement and support Families and caregivers are integral to the wellbeing of people with ID so they also require support. Caregiving can present enormous physical and psychological burden that can adversely affect people’s ability to provide effective care. As a result, care plans require an assessment of caregivers’ needs at times of hospitalisation and discharge, so that assistance can be organised if necessary. Providing follow up for patients and caregivers can reduce rehospitalisation rates (IHI 2009). The average lifespan of people with ID has increased and the number of individuals with ID over the age of 60 is expected to double by 2030 (Tinglin 2013). Family caregivers are the major source of long-term care for adults with ID in the US (Coughlin 2010), but the strain is often detrimental to their health (Schulz and Sherwood 2008) and they NURSING MANAGEMENT

may not have prepared adequately for older age (McCallion and Nickle 2008). Community support agencies and residential placement facilities assist patients and carers after discharge from hospital. If patients live in residential homes, discharge instructions should be sent there (Eley et al 2009). If patients are in formal systems of care, it is important to co-ordinate with these care systems. This supports transition between inpatient treatment and healthy living in the community.

Online educational module Staff nurses do not always have time to undertake educational modules on their units, so once the care plans were developed, by employing the nursing quality and performance improvement plan model (Vanderbilt University 2010), a doctor of nursing practice student coached another cohort of GEM students in developing and implementing an online educational module for nursing staff. The module covers elements of the care plans and includes case studies. The online educational platform used was the Linking Education and Performance (LEAP) programme, which is accessible to all RUMC employees and offers free educational classes to help improve skills and performance. The goals of the LEAP module, specific to the new care plans, are: ■  To increase the understanding of the unique needs of individuals with ID. The module identifies problems that can arise and offers specific solutions and techniques. It also uses a ‘sample patient’ throughout to give realistic examples. ■  To improve communication between patients with ID, their families and staff. For example, the module discusses the importance of assessing communication techniques, discussing best practice with caregivers and personalising communication methods to specific patients. ■  To improve care and prevent adverse events among patients with ID. Study – how will we know that a change is an improvement? Interim evaluation is important and can identify a project’s strengths, weaknesses and areas for improvement (US Department of Health and Human Services et al 2005). Interim evaluation of this project equates to the study phase of the PDSA cycle and the process has started with evaluation of nurse participation in the educational module. The efficacy of the module was measured by tracking how many nurses completed it compared with the total number of staff on a unit, nurses’ April 2015 | Volume 22 | Number 1 35

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Art & science | acute patientcare groups satisfaction with the format, and whether they achieved the objectives. The continuing education evaluation tool at RUMC evaluates change in knowledge, skills, attitudes and overall satisfaction, and is used for all interprofessional continuing education activities. The Interprofessional Continuing Education office and the evaluation tool are approved by the Accreditation Council for Continuing Medical Education and the American Nurses Credentialing Center (2008). To promote the education module, emails were sent to unit directors, flyers were posted, and additional in-house training was offered on two occasions by GEM students for nurses on four targeted units to which around 40% of patients with ID are admitted, excluding psychiatric admissions. This has resulted in more than 300 nurses completing the online module since it was launched in August 2013, which represents 78% of the nurses on the four targeted units. Results of interim evaluation A pre-survey was conducted among nurses (n=75) on four targeted units before implementation of the standards and the educational module. The survey comprised eight statements, and the possible responses included ‘strongly agree’, ‘agree’, ‘neither agree nor disagree’, ‘disagree’ and ‘strongly disagree’. At least one quarter did not agree with the following statements (Table 1): ■  Able to create and execute population-specific discharge planning to manage transitions of care for patients with ID.

■  Able to assist patients with ID who are not coping well with hospitalisation. ■  Could direct a family member experiencing caregiver strain to appropriate referrals. ■  Confident in my ability to co-ordinate care for patients who have IDs. ■  Communicate effectively with patients who have IDs. Ninety nurses completed the survey after completing the education module and a chi-square analysis was conducted to assess levels of improvement on the five statements (Table 1). The analysis showed significant improvement in nurses’ confidence when caring for patients with ID for all five statements. There was trend toward increased knowledge.

Conclusion People with ID are disproportionately hospitalised and have higher rates of complications than the general population. The overall philosophy of care is social inclusion. The roadmap published by the Joint Commission (2010) stresses the need for care directed at the unique needs of patients, but the surgeon general’s report (US Department of Health and Human Services 2002) and the Death by Indifference document (Mencap 2007) make it clear that attention must be given to the specific needs of people with ID. For some time there have been calls for more attention to the care needs of this population, and to the education of healthcare professionals, as well as for better planning and documentation of their care (National Council on Disability 2009). The care plans

Table 1  Statements of improvement that nurses did not agree with before and after the education model Questions on survey

n pre

n post

% did not agree pre



p value

I am able to create and execute populationspecific discharge planning to manage transitions of care for patients who have intellectual or developmental disabilities






Specific standards of care for adults with intellectual disabilities.

Individuals with intellectual and developmental disabilities (ID) represent a small but important group of patients who have high levels of hospitalis...
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