Nurses’ experiences of caring for patients with intellectual developmental disorders: a systematic review using a meta-ethnographic approach

Promoting the health of patients with intellectual developmental disorder (IDD) should be of universal concern to all nurses. People with disabilities have the same right to the highest attainable standard of health as everybody else [1]. Despite this, there seems to be little discussion about their actual health needs. How registered nurses (RNs) should be educationally prepared to support this group of patients and what role they should play in addressing their health needs is under-researched in the international nursing literature [2]. Additionally, the bulk of research seems to have focused on parenting children with IDD [3], parents with IDD [4], health and social care for those with a dual diagnosis, for example, IDD and somatic health problems [5], challenging behaviour (CB) associated with IDD [6, 7] and burn out among frontline carers of people with IDD [8]. Therefore, research investigating how RNs experience nursing, for this vulnerable group of patients is vital for knowledge development within nursing across health care settings.

One of the major challenges in nursing patients with IDD appears to be that RNs in general health care settings are not adequately prepared to support their health needs. This is also true in the acute care settings [9]. Because these patients are not viewed as a distinct and vulnerable group with health care needs outside those of the general population, the necessary education and training for health care staff has not been put into place [10]. In these circumstances, it is highly likely that in health care staff will not understand specific issues relating to IDD or that reasonable adjustments in care are needed for this patient group. Melville and colleagues [11] have identified a clear knowledge gap among health care practitioners with only 8% of the RNs in their study receiving learning disability-related training. In their systematic review, Bradbury-Jones and colleagues [12] highlighted health care professionals’ limited knowledge about IDD and concluded that patients with IDD are misunderstood in care. The literature also reports that there are international disparities in educational levels for health and social work staff. It appears reasonable to propose that a lack of preparation and knowledge is the most likely explanation for these reported problematic attitudes and negative behaviour among health care professionals in relation to this patient group [13, 14]. For example, in a study by Lewis and Stenfert-Kroeses [15], nursing staff at a general hospital reported less positive attitudes concerning caring for patients with IDD compared to caring for patients with somatic disorders. Indifference and negative attitudes can lead to negative consequences in terms of quality of care for this patient group as evident in a recent Mencap report [16] and in the Confidential Inquiry into premature deaths of people with learning disabilities, CIPOLD [17] from the United Kingdom (UK). Such negative behaviour and attitudes, together with a lack of training in good practice is likely to negatively affect the quality of nursing offered to this patient group. This is particularly distressing as these patients experience the same range of health problems as others but, according to Cooper and colleagues, [18] with an increased risk of co- or multimorbidity in comparison to the wider population. However, the pattern of illness they experience may be different [19], leading to increased frailty that predisposes them to an earlier burden of disease [20]. According to Campbell [21], patients with IDD have more complex health needs than the general population but face much greater difficulty in getting good and adequate health care. This is supported by Brown and colleagues [22], who state there is evidence that these patients’ needs are often poorly meet by health services, with many experiencing significant barriers to accessing health care appropriate for their individual requirements. This is further underlined by Heslop et al., [17] who in their investigation into premature deaths of people with intellectual disability in the UK, found that problems with the provision of care e.g. problems in advanced health and care planning, including recognising needs and adjusting care as needs change, together with problems with service provision e.g. delays in the diagnosis and treatment of health care problems, contributed to deaths that were significantly different for a subset of people with intellectual disabilities and comparator cases. Registered Nurses therefore should have an important role in caring for patients with IDD, particularly as they are expected to lead nursing care and to support health care assistants and/or assistant practitioners in caring for this growing group of people.

In the past 40 years, developed countries have seen far-reaching and radical changes in peoples’ attitudes towards people with IDD. A growing emphasis on the provision of services in the community has led to the closure of long-stay hospitals and institutions, with greater inclusion in wider society [23]. An increase in health screening and medical interventions has resulted in a greater awareness that this group of people will live longer. According to Ervin and Merrick [24], the number of adults with IDD aged 60 years and older is expected to reach 1.2 million by 2030. However, according to Innes, McCabe and Watchman [25] there is no corresponding evidence regarding how support will and should be provided. It is therefore probable that RNs, regardless of in which health care setting they work, will encounter this patient group on a more regular basis, presenting a challenge for the health care professionals who need to provide them with care in a timely and relevant manner. Therefore, it is particularly noteworthy that the majority of European countries, with the exception of the United Kingdom and Ireland, provide few undergraduate and graduate training courses in IDD within their health sciences curricula. Therefore, not all European patients with IDD will meet RNs with the relevant competence and skills needed to offer adequate nursing to these patients. Consequently, knowledge on how to organise and deliver optimal and safe evidence-based care to this population is of huge importance. Some good practice models with regard to the nursing of this patient group for example, hospital passports, legislations on reasonable adjustments, health action plans and hospital liaison RNs, are evident, especially in the UK but the evidence indicates there is still some way to go to embed these practices elsewhere. As RNs are often on the front line of both primary and secondary care, it seems natural that as a profession nurses engage in knowledge development within this field, particularly as the evidence base for IDD nursing practice remains limited in both quantity and quality [26]. Therefore, the overall aim of this systematic literature review is to develop a conceptual understanding of RNs’ experiences of nursing patients with IDD.

The design of this meta-synthesis was influenced by the meta-ethnographic method described by Noblit and Hare [27]. The growing use of this method in health services research [28] means the method has evolved. Meta-ethnography is an interpretive rather than an aggregate form of knowledge synthesis and accordingly aims to develop conceptual understandings—in this case about RNs’ experience of nursing patients with IDD—rather than to provide an aggregate account of findings [27]. Our design is equally informed by other more recent methodological accounts [29, 30].

We included eighteen studies involving 203 informants (5–27 informants per study) in this review (Table 3). About 70 of the informants were either described as being an intellectual disability or a learning disability RN, and 133 of them were described as being general RNs. Most of the studies were conducted in the United Kingdom (n = 9), followed by Ireland (n = 3) and Northern Ireland (n = 2). The remaining studies were conducted in Canada, Sweden, the United States and New Zeeland. Eleven studies were categorised as reporting on a qualitative study guided by an explicit set of philosophical assumptions in the form of one of the known classical qualitative designs (CQDs), while seven studies were categorised as having generic qualitative research designs (GQDs) [40].

The RNs’ experiences of nursing patients with IDD were interpreted to be reflected in 14 individual LOA syntheses. We propose that six of these LOAs (Table 4) are tentatively distinctive and a unique conceptualisation of RNs’ experience of nursing regarding this group of patients regardless of context. We suggest that the remaining eight LOAs represent conceptualisations of nursing already collectively described and known independent of patient group and contexts. Our discussion begins by addressing the six tentatively unique conceptualisations and ends by briefly addressing the remaining eight general conceptualisations of nursing.

Without the presence of a long-term relationship in care, nursing patients with IDD is likely to be experienced as a challenge and as being at risk of failing to deliver quality care. In the LOA synthesis ‘nursing experienced as needing to be based on long-term relationships’, it was reflected that reading, understanding, supporting and empowering patients with IDD was not likely to take place without nursing that includes strategies such as building long-term relationships with patients [42, 45, 47‐52]. Regardless of patient group or context, it is well known that one of the most reported essential qualities of nursing is the relationship between an RN and a patient [59‐61]. In her literature review including studies outside our context, Shattell [62] suggests that in normal cases and under favourable circumstances nurse–patient relationships occur and work in short-term care interactions. However, we propose that in the majority of health care contexts such a relationship is not aligned to a long-term perspective and is particularly needed when nursing this group of patients, since creating a foundation for trust in care becomes a prerequisite for nursing. Belcher and Jones [63] and others [64] have identified trust as a crucial component in establishing an effective nurse–patient relationship. They ascertain that the RN is the key to developing trust, as the patient is in the RN’s environment and is therefore in a vulnerable position [64]. Patients with IDD can be said to be in an extraordinarily vulnerable position. Not knowing the patient has been found to result in RNs not being sufficiently confident to build a relationship, resulting in inadequate patient care [63]. The nurse–patient relationship has also been described as an important factor for patient participation in care [63, 65]. It is therefore reasonable to suggest that nursing for this patient group not based on a long-term relationship can adversely influence RNs’ ability to interpret patients’ care needs, which could result in lack of reliance, unmet needs and unsafe care. According to Gámez [66], the nurse–patient relationship should concentrate on the needs, limitations and potentials of the individual person. It is noteworthy that we could not identify any published studies researching the nurse–patient relationship in the context of this patient group. The majority of studies identified implied that the topic has not been focused on since early in the twenty-first century, suggesting this is an area of nursing in need of more in-depth knowledge development and focus.

Communication in nursing patients with IDD clearly demands skills and competences in communication strategies above and beyond the spoken word. The LOA synthesis ‘nursing experienced as needing to go beyond verbal communication alone’ reflected how not being able to communicate impacts the assessment of care needs and the quality of care provided and results in insufficient and unsafe care [45, 48, 51, 54‐56]. Our findings are supported by Fisher [67], who states that patients with IDD often require information in various formats to help them understand and communicate. Successful communication demands cognitive efforts (ibid) and both verbal and nonverbal cues [68]. Even if patients with IDD are able to communicate verbally, difficulties in understanding the spoken word can occur [67]. Such difficulties can be exacerbated by health care professionals being prone to using jargon [69], especially as patients with IDD often interpret words and sentences literally [70]. Furthermore, it is not uncommon for RNs and other health care professionals to have problems understanding what IDD patients are trying to convey, thus resulting in difficulty assessing their needs [70]. Hemsley and colleagues [71, 72] state that nonverbal communication must be used and properly understood to fully achieve the goals of communication. Otherwise the patient’s mannerisms and behaviour can be misunderstood and the patient seen as non-compliant when in fact the problem lies in the health care professional’s failure to understand the patient’s usual methods of communicating [71, 72] Therefore, there is support for the supposition that challenges in interpreting communication cues result in difficulties assessing care needs [70] and in inadequate and unsafe care [72]. It could be argued that RNs should encourage patients with IDD to bring a friend, a relative or a custodian as this could increase RNs’ ability to understand the patient and hence being able to offer relevant care.

It is noteworthy that nursing patients with IDD needs to include strategies aimed at shattering the stigmatisation that still appears to be associated with this group of patients and that became apparent in the LOA synthesis ‘nursing experienced as needing to work against negative attitudes and alienation’. Negative attitudes towards patients with IDD was found to derive from both the surrounding society and the care context [42, 46, 49, 51, 58], as well as from RNs themselves [42]. Our findings imply that this could lead to unequal and poorly delivered health care services for this patient group [46, 49, 51]. In a study by Lewis and Stenfert-Kroeses, RNs were found to hold significantly less positive attitudes when nursing patients with IDD compared to when nursing patients with a physical disability [15]. It was common that this patient group would be experienced by the RNs as easily distressed, aggressive and less co-operative. Additionally, it was less likely that RNs included the patients in decisions about their care, as they stated they would, for example, not explaining treatment plans or assessing if a patient was in pain [15]. In a study by Cumella and Martin [73], RNs described feeling awkward and embarrassed when interacting with this patient group. Others report equally distressing findings, such as relevant others hearing negative comments by health care staff about their relative with IDD [74] and patients with IDD experiencing health care staff being judgemental regarding their capabilities, something that obviously was found to influence their willingness to seek health care [75]. Bradbury and colleagues [12] state that discrimination, anxiety and fear are often underpinned by lack of knowledge. This state of affairs is distressing in the context of nursing. One plausible explanation for this unacceptable situation might be that in the majority of European countries nursing education still does not offer advanced courses and/or programs dealing with this nursing speciality, in contrast to the United Kingdom and Ireland. Bachelors nursing students are seldom given any opportunity to interact with this patient group during clinical placements, and neither do most course curricula include any substantial learning objectives regarding the knowledge needed to nurse this patient group. Therefore, higher educational institutions (HEIs) offering nursing education need to develop courses and programs that equip students with the knowledge and skills needed to provide this patient group with the same quality health care as provided to the rest of the population.

Without the right knowledge of IDD and how to care for these patients, nursing is likely to be experienced as a challenge. Challenges on both an individual and an organisational level, such as failing to deliver quality, safe and supportive care, became evident in the LOA synthesis ‘nursing experienced as needing to raise the bar in nursing for this patient group’ [49, 51‐54, 56, 58]. We know that patients with IDD can experience difficulties when interacting with their surroundings and are therefore a vulnerable population prone to placing great demands on the health care system. In addition, the research indicates that RNs do not feel adequately prepared [76] or knowledgeable enough to support these patients or to meet their needs [15]. This can cause major obstacles for RNs in providing appropriate and adequate health care [67]. It is not uncommon that nursing is dependent on support people, such as custodians and/or relevant others, to be able to care for this patient group [76]. Northway and colleagues [2] state that this raises questions about social justice and equal rights, as patients with disabilities have the same right to the highest attainable standard of health care as everyone else. The research has highlighted that RNs educated about learning disabilities are better equipped to provide good quality care to this group. In those European countries offering this type of education and service, RNs with knowledge of learning disabilities, aka IDD, have been found to play a crucial role in coordinating care between the community and the hospital and in increasing knowledge, awareness and understanding of this group of patients among health care staff [74, 77]. Therefore, exposure to and enhancing knowledge about this patient group must become an educational, professional and nursing research priority.

The ability to manage the unpredictable interactions due to CB and the risks CB can pose for fellow patients and health care staff is essential in nursing this group of patients. The LOA synthesis ‘nursing experienced as needing to take unpredictable situations into account’ reflected how RNs can experience a constant need to be vigilant and prepared for unpredictable situations in which they need to take control quickly to ensure safe care [41‐44]. The above is well established, as CB has been associated with IDD since the mid 1990s. According to Farrell et al. [78], one of the most commonly quoted definitions in IDD literature is Emerson et al.’s [79] description of CB ‘as behaviour of such intensity, frequency or duration that the physical safety of the client or others is at risk, or as behaviour which is likely to limit or deny access to normal facilities’ [78]. This definition accurately reflects the experiences of RNs in our review. Our synthesis also reflected how unpredictable situations could lead to RNs experiencing moral distress (i.e. anger and negative thoughts about patients), resulting in guilt and a need to distance themselves from the situation and the patient. This is corroborated by, for example, Whittington and Burns [80]. They found that CB caused a dilemma for health care staff: should CB be viewed as communicating needs or as a behavioural problem? Staff also discussed how to deal with the unpleasant feelings CB can evoke; unfortunately, their main strategies were to avoid the patient and/or to shut themselves off emotionally [80]. Farrell et al. [78] state it is not uncommon for health care staff to report negative feelings, such as guilt, fear and powerlessness, in relation to CB. The implications of this for nursing patients with IDD, particularly in regard to quality of care, are problematic. Training and educational interventions are therefore required to support RNs in nursing these patients in a clinical context. We suggest that educational models, such as the S_VESOS [78] with its three core domains of self, others and setting, as the basis for developing educational objectives could be the foundation of such educational clinical interventions.

Delivering ‘health care and nursing as usual’ is likely to fail in terms of meeting the needs of patients with IDD. This became obvious in the LOA synthesis ‘nursing experienced as needing to understand the complexity of this patient group’ [52, 54, 56, 58]. The experiences reflected that a major part of the complexity was a result of an organisation not supporting patient needs for long-term nursing, more time, a slower pace and other resources that differ compared to those required by general patients. It therefore seems reasonable to conclude that current health care systems might not be the best for this group of patients with complex needs as they do not seem to take into account how their cognitive functions differ from people in the general population. Therefore, these systems need to adapt their services. There is evidence of inadequate attention to care needs and inadequate access to health care, including oral care [81, 82]. Others have found that the length of appointments for patients with IDD is the same as for other patients [11, 83] and that RNs’ experiences reflect a lack of time when nursing patients with complex needs [84]. This is noteworthy, especially as we know that this patient group has a higher likelihood of adverse health outcome [81] and consequently are more prone to needing health care. Implementing careful individual planning and care coordination by case managers would be a way for health care systems to acknowledge and deal with the complexities associated with this group of patients.

The relevance of this meta-synthesis lies in the implications the RNs’ experience has for nursing. Our findings suggest that negative stigmatisation, attitudes and alienation still seem to surround this group of patients. Furthermore, the health care needs of patients with IDD might not yet be adequately addressed despite the fact that they have a right to the same highest attainable standard of health care as others. This indicates that RNs might be compromised in their ability to contribute to reducing health disparities for these patients.

Our findings also suggest that services were not designed to meet the health  care needs of patients with IDD. Complex health conditions, communication difficulties and challenging behaviours were some of the challenges the RNs experienced while nursing this patient group. Careful individual planning, care coordination and case management could be ways for the system to acknowledge the complexity of this group of patients. Additionally, to ensure that the fundamentals of nursing are met at all times, RNs need to plan and deliver nursing in a structured and systematic way. For example, our findings indicate that creating a long-term relationship with the patient with IDD and going beyond verbal communication alone could be one possible way to enable RNs to work in a person-centred way. Particularly as our findings also implied that focusing on the person behind the disability label, i.e. PCC in encounters between patients with IDD and RNs could be one way to secure quality nursing for patients with IDD. This seems reasonable to suggest as such an approach could support the forging of much needed long-term nurse–patient relationships, which in turn would likely enhance RNs’ ability to understand patients, regardless of their method of communication. Nursing care models focusing on PCC might be adequate strategies in supporting the configuration of mainstream health care contexts to meet the health needs of patients with IDD. Large scale experimental studies testing the effectiveness of PCC nursing care models to this group of patients in clinical practice are therefore warranted.

Our review also suggests that with some few exceptions, relatively little attention has so far been given to patients with intellectual disability disorders within general nursing and in nursing research. For general nursing, it is important to consider that nowadays this rather large group of people no longer reside in large institutions and that many of them live longer compared to previous generations. Hence it is almost certain that general RNs, often in the frontline of home and primary care, will be of great importance for the health and care for this patient group. For nursing research, focus seems to be on challenging behaviour, mental health problems and communication problems. However, it is vital to not forget that this is not a homogenous patient group. Consequently, there is more to explore and knowledge to gain within nursing and health care than around these few negative IDD phenomena. It therefore, seems reasonable that RNs in countries (e.g. UK and Ireland) with a specialist education take the lead in building up a relevant body of knowledge in some of those areas of importance reflected here. If not addressed, the vital evidence needed for nursing practice will be lacking, the essence of nursing care not captured and its contribution not accurately valued.

A reoccurring theme in our systematic literature review was the lack of awareness and of relevant knowledge experienced by the RNs, very likely being the main reason for the ‘otherness’ that still surrounds patients with IDD. The only reasonable remedy for this is education. The main question is how to deliver this, as not all European countries, with the exception of United Kingdom and Ireland, offer relevant under- and post graduate programme or courses focusing on patients with IDD within different health science curricula. Specialist education for nurses caring for patients with IDD must be put on the agenda in all European countries so that the contribution that RNs on the front line of care can make in reducing any possible health disparities in this group of patients not are compromised.