Discourse and dialogue at Trinity

An exploration of contemporary Irish research in intellectual disabilities by Paul Keenan

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Introduction

The School of Nursing and Midwifery of University of Dublin Trinity College held its 6th Annual Interdisciplinary Research Conference Transforming Healthcare through Research, Education and Technology, on 2–4 November 2005. The peer reviewed conference attracted a substantial range of international and inter-professional presenters and delegates. A full day’s concurrent session on 3 November was devoted to contemporary research in intellectual disabilities.

This article summaries seven of the research studies that were presented at the conference and discusses common emerging themes. The implementation of person-centred approaches to care in a residential setting in the Mid-Western region of Ireland (Carey 2005). This paper described and analysed the processes devised and utilised by staff to implement a person-centred approach to care in a residential service in the Mid-Western region of Ireland. The degree to which the spiritual needs of the person are realised was also examined. The research design was mainly quantitative and informed by a qualitative component. From a population of 250 healthcare employees, 168 were sampled. A focus group interview and pilot study enabled the adaptation of an instrument devised by Holburn et al. (2000) and the development of an Indicators of Processes of Person-Centred Planning Scale (IPPCPS). The final draft of the IPPCPS was distributed to 147 healthcare employees.

Carey found that core systematic processes conducive to person-centred planning are operating in the residential centre. Systematic processes are in place to meet some of the spiritual needs of the person. However, she found there was a substantial lack of consideration for identifying the preferences and perspectives of people in relation to their quality of life issues. The residential centre is now challenged to move beyond their traditional approaches to care, i.e. ‘protection’ and ‘mothering’, to develop good practice guidelines ensuring person-centred care. To provide a holistic approach to care, staff need to ensure that care processes and practices embrace the person’s perspective, preferences and aspirations, as defined by them in the context of quality living.

The attitudes of primary care givers to sexuality and people with intellectual disability (Drummond 2005)

This pilot-study that used a quantitative descriptive method investigated the attitudes of primary carers towards the sexuality of people with intellectual disability. The research focused on people attending two day.service sites run by one care provider in Ireland.

Drummond’s review of the literature indicated that, whilst attitudes towards sexuality for people with intellectual disabilities have become more open in the past three decades, considerable barriers remain for those with intellectual disability in experiencing their sexuality positively. Staff consistently fail to facilitate these needs (Meera 2000; Walmsley 2000; Wolfe 1997; Aunos and Feldman 2002; Hamilton 2002; Johnson et al. 2000; Evans et al. 2003). This is confirmed by those adults with intellectual disabilities who have demonstrated an understanding of personal relationships and sexuality (Caffrey 1992; Murray et al., 2001; Christian et al., 2002).

Forty-five primary carers (i.e. parents, siblings and care staff) of people with intellectual disabilities who attended rural and urban day services were sampled, using a self-administered postal questionnaire. Their attitudes were measured by the Sexual Attitudes Questionnaire.ID (the adapted GSAQ.LD developed by Karellou (2003a)). The instrument demonstrated good internal consistency and test/retest reliability.

Results from the study indicated that primary carers’ attitudes were significantly influenced by their age, level of education, marital status and attitudes to religious attendance. Primary carers’ who were younger and had a higher level of education tended to hold more open attitudes to sexuality generally, and for people with intellectual disability specifically. However, respondents tended to discriminate between groups. Primary carers who were single (i.e. 12 of the 45 people sampled) were less likely to discriminate than their non-single counterparts (i.e. 33 people).

A clear relationship was also found between attitudes and religious attendance where more open attitudes were associated with lower levels of religious attendance. Primary carers were also found to vary in their overall acknowledgement of the sexuality of the person with intellectual disability, as compared to the general population, and they differed in their attitudes towards same-sex relationships for people with intellectual disability as compared to the general population. Contrary to findings in other research studies, gender, level of intellectual disability and geographical location were generally found to be insignificant.

Carers’ perceptions of the support they provide to service users at the time of, and following, bereavement (Gilrane.McGarry 2005)

This study investigated the perceptions of the types of supports provided to an intellectual disability population at the time of, and following, bereavement by formal carers. Eleven participants took part in semi-structured interviews. The practical supports they provided to individuals (i.e. involvement in events surrounding the death and access to the rites of passage) were reported to be positive interventions, whereas the provision of emotional supports by staff (i.e. formal and informal supportive counselling) were cited by the participants to be sporadic. The use of alternative approaches (i.e. reminiscence work; the creation of a life story book/family tree, the use of art therapy and pictorial material) were also reported to be lacking. The findings highlight the need for education/training and leadership to provide staff on an ongoing basis with the insights, knowledge and skills necessary to practically and emotionally support people with intellectual disabilities who are facing loss and bereavement. In addition, these training needs should be aligned with ongoing managerial and specialist organisational support so that the specific needs of each member of this bereaved population can be fully addressed.

Meeting the mental health needs of people with an intellectual disability from a nurse’s perspective (Hardy 2005)

The presence of mental health problems in people with learning disabilities is a relatively new concept. Historically it was not recognised that people with learning disabilities suffered from the same psychiatric disorders as the general population (Gravestock 1999). Though studies over the last thirty years have generally found higher rates of mental health problems in this population (Taylor et al. 2004; Borthwick-Duffy 1994; Corbett 1979), this increased prevalence is due to a combination of complex vulnerability factors including biological, psychological, social and developmental.

According to Hardy, the assessment of mental health problems in people with learning disabilities is fraught with difficulties. These difficulties include communication impairments, suggestibility, acquiescence and third-party reports. Care planning and treatment often need to be adapted to the particular needs of the person and his/her level of ability. The mental health care of this vulnerable and complex group is challenging and their needs are best met within an interdisciplinary framework, of which nurses are an integral part.

The role of the social model of disability in Irish intellectual disability nursing (Hartnett 2005).

The role of the social model of disability in Irish intellectual disability nursing from the perspectives of ten practitioners from the specialism. To generate deep rich data, in-depth interviewing was used. This data was then analysed utilising constant comparative analysis. The results showed evidence of aspects of the social model in participants’ outlooks and work practices, but that the term ‘social model’ is not one which the majority used to describe this. Participants were able to identify limitations of the social model, in addition to ways in which the social model could further enhance intellectual disability nursing.

The study concluded that adopting aspects of the social model could facilitate Irish intellectual disability nursing to address some of the contemporary challenges it faces such as professional role confusion, and to maximise its contribution to disability service provision through a clear language, clear underlying values and networking with organisations supporting the social model (including the National Disability Authority).

Nurses’ perceived and actual methods of communication when interacting with people with severe and profound intellectual disabilities who communicate non-verbally (Healy 2005).

For all people, developing and maintaining interpersonal relationships is vital. Individuals with severe/profound intellectual disabilities are likely to experience communication difficulties that impede such relationships. Investigators studying staff – service user interactions in settings for people with intellectual disability have generally found very low rates of interaction between individuals and staff members (Hile and Walbran, 1991). In addition, very little information is available about how nurses in day and residential services typically communicate with adults who have an intellectual disability.

An exploratory research design was employed using purposive sampling. Nurses perceived by the researcher to be knowledgeable about communication with persons with a severe to profound intellectual disability were invited to participate. The ten participants were asked to choose a person with whom they were familiar. A combination of data collection tools were used, namely structured observation, individual interviews and focus group interviews. Thematic content analysis was utilised to analyse the individual and focus group data. SPSS (Scientific Package for Social Sciences) was used to analyse the observational data.

Healy (2005) found that the majority of staff felt continuing education and training in the area of communication would increase their confidence and competence Staff used similar amounts of verbal and non-verbal methods of communication when interacting with people. Interestingly, some staff members were able to predict their method of communication, however, their actual use of communication appeared to be strongly influenced by the use of a ‘teaching strategy’. In addition, the majority failed to recognise their use of some verbal and non-verbal signs of communication and also failed to adjust their language to meet peoples needs. Environmental factors were highlighted as having an impact on communication. Negative and positive aspects of communication were also identified. Alternative methods of communication were examined and many participants suggested that these methods could be used in addition to verbal means of communication.

The intellectual disability nurse’s knowledge and experience of interdisciplinary care (Hughes 2005).

This study examined what contribution(s) Registered Mental Handicap Nurses (RMHN) (now Registered Nurses – Intellectual Disability) (An Bord Altranais 2000) perceived they made to intellectual disability services. Within this study she explored their understanding and experience of interdisciplinary working and how this could be developed.

A qualitative approach was taken (Morse, 1994) using semi-structured open-ended interviews with 14 intellectual disability nurses (eleven women and three men) working in Irish intellectual disability services. Eleven themes emerged from the data including: their meaning(s) of being an intellectual disability nurse and what distinguished them from other nurses working in intellectual disability services; their understanding of interdisciplinary working and the roles of other disciplines; the requirements for successful interdisciplinary working; the benefits and drawbacks of interdisciplinary working; pre-registration preparation for interdisciplinary working; the contribution of intellectual disability nurses to interdisciplinary working; and how they could enhance this.

More than half of the participants identified having a wide range of particular suitable skills for assessing the needs of people with intellectual disabilities and for providing holistic care. The diversity of RMHNs roles and role components were commented on and this was reflected by the composition of the sample of participants, their respective backgrounds, work experience and settings in which they were currently working and had worked previously. However, the participants did not articulate unequivocally the contribution that RMHNs have made to intellectual disability service provision. Similarly, there were few substantive comments about what distinguished RMHNs from other nurses working in the same field, even though most had worked with other nurses.

Most participants understood interdisciplinary working to mean different health and social care professionals working together. Some identified the professionals and non-professionals with whom they actually worked or envisaged as potential members of an intellectual disability team. However, with one exception, none spontaneously included the person with intellectual disabilities.

The interchangeable use of the terms interdisciplinary and multidisciplinary by several participants, may indicate lack of knowledge of the differences in meaning. Many of the participants appeared to understand interdisciplinary working to include or to be synonymous with interdisciplinary team-working. However, formalised team-working structures and other strategies for promoting interdisciplinary working (Barr, 2001) did not seem to be in place in some of the services where participants worked, or were in place within particular settings within a service but not in others. It also appeared that the participants had few opportunities to work directly alongside other professionals or grades of staff other than care staff, especially those participants working in residential settings. Nevertheless, more than half of the participants stated that different opinions and expertise was enhancing the holistic, person-centred approach of service provision.

Hughes (2005) recommends the need to enhance interdisciplinary working in intellectual disability services. One way this can be achieved is by enabling staff to become more familiar with the terminology and concept of interdisciplinary working. The formalisation of team-working structures and other strategies for promoting interdisciplinary working should also be considered (Barr 2001). Increased opportunities to work with and participate in continuing education/training activities with other disciplines may also help to achieve mutual understanding of others’ roles and develop skills of interdisciplinary working. RMHNs should consider how they can better articulate their role. This may be achieved through the development of assertiveness and confidence. Finally, at a policy level, there is a need to develop an agreed definition of interdisciplinary working, and further research to be undertaken into existing interdisciplinary working practices.

Discussion

Much of the research summarised above speaks for itself- While the issue of ‘generalization of findings’ may be problematic, a number of common themes are worth analysing further- For example, 1. the evidence of best practice and 2. people with intellectual disabilities are not always at the centre of their care. The latter is discussed first.

Carey (2005), Drummond (2005), Hughes (2005) and Gilrane.McGarry (2005) all highlighted areas where there was a limited focus given by carers to facilitating active participation by people in their own lives in ways which are defined by and meaningful to them. Among other things this raises fundamental issues about their human and other legal rights.

Hughes (2005) finding that only one of the fourteen Registered Nurses – Intellectual Disabilities mentioned the client as central to interdisciplinary care is concerning. Interdisciplinary working, or ideally inter-professional collaboration, involves different professions working and learning together in alliance with the client and significant carers / others with the primary purpose of facilitating the client to maximise, maintain or slow down the deterioration of, that person’s well-being. There is a need for carers to further seek out and respond more effectively to the perspective(s) of the person’s experience and aspirations.

Drummond (2005) implies that unless people with intellectual disabilities are included in discussions about their sexuality then the possibilities of addressing their needs effectively in this area are lost and their human and other legal rights with respect to intimate personal relationships and sexuality education are infringed.

Future Trinity Conferences are keen to attract a wider range of professionals and non-professionals, such as carers, parents / relatives and significant others to their prestigious and highly successful international conferences. Central to future conferences is their aspiration to engage people with intellectual disabilities more actively in the process as organisers, presenters and delegates.

Academics (myself included), service managers and carers appear better able to ‘talk the talk’, but their ability to ‘walk the walk’, appears to be lagging ‘a little bit’ behind. But perhaps there is a natural time lag in these matters. One can be heartened by the range of developments going on in services and the clear evidence of good and best practice identified in the research studies above. Examples include Carey (2005) and Gilrane-McGarry (2005). Carey (2005) found that core systematic processes conducive to person-centred planning are operating in a residential centre in the mid-west of Ireland thus ensuring that the foundations and processes exist for fostering and nurturing high quality individualised care. Secondly, Gilrane-McGarry (2005) found that a wide range of appropriate practical supports were evident when meeting the needs of people through the bereavement process.

Conclusion

The quality of research currently undertaken in the field of intellectual disabilities and the high level of dialogue it generated during and since the conference is commendable. This adds to the evidence that Irish researchers, in this case mainly RNID nurses, play a pivotal role in reaffirming, questioning and increasing the evidence / research base underpinning, reinforcing and developing practice.

The challenge for many researchers, whether academics or clinical practitioners, is to ensure that their work is not only published and scrutinized within renowned peer reviewed journals, but also made accessible to people with intellectual disability and their carers in ways which are meaningful and useful to them. Secondly, we have a responsibility to ensure findings and recommendations enhance education and training, policies and processes, management and leadership, so as to facilitate people in living the lives they choose to live and aspire too. This can only lead to developments in high quality person-centred care for this group of people. Secondly, this partnership between research and practice will go some way towards enhancing carer accountability i.e. their ability to describe what they do and do not do; their ability to provide appropriate rationale(s) for what they do or do not do and; their ability to articulate the research / evidence base underpinning and guiding their professional knowledge, practice and values, not just the common, shared knowledge/practice/values, but that which makes them unique from other carers – a uniqueness that is valued and necessary.

Further research studies contained within the conference proceedings with relevance to Intellectual Disabilities include: Griffiths and McCabe (2005) on Communication; Gormley (2005) on Epilepsy; Harnett and Walls (2005) Development of Irish national best practice guidelines and training for informing families of their child’s disability; and Keenan (2005) pre-registration intellectual disability nursing and social work education and training.

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