I recently spent some time as a visiting research student with some adult intellectual disability service providers. On mentioning to a colleague that I had really enjoyed the experience, he said that I should write up my reflections.
Having trained in general nursing and midwifery, I worked for some years in paediatric nursing and then entered a nurse teacher career. I spent many years working with HIV/AIDS and the later years back in full-time education. This exposure to intellectual disability (ID) nursing/care was my first such experience. I was immediately aware of a welcome and therefore I settled in easily.
Home from home
Although the physical environments could be judged similar in structure to a hospital setting, with shared and private rooms, it became apparent very early on that there were some fundamental differences in the philosophy of caring for the service users. (I was advised that this was the term for the residents. It is a term which I do not find easy to use, although I cannot yet identify the source of my unease). One fundamental difference I became aware of was that the place was home for the service users and the staff were more like guests. In comparison, my experience of general nursing in a hospital/institutional situation would have been that the patient was the guest. The nurse or carer was the host and the authority figure. The shift away from institutionalisation of persons with intellectual disability in the 20th Century has presumably fostered this idea of home being important and that the carers are not the authority figures or hosts, but are the guests—maybe even the servants??
On one occasion when I said to a nurse that the care was similar to that required in paediatric nursing, she replied ‘Oh, I wouldn’t have any patience with children.’ However, I observed her demonstrating enormous patience in a particular situation towards a person who was unable to communicate verbally. I was reminded of the love of a parent referred to as unconditional love in this instance. Certainly the patience and time given on that occasion, which was one of many observed, bordered on what I could call unconditional love. Many staff spoke of their frustration when an admission to a general hospital was required and it was a bad experience because the staff at the hospital didn’t know the needs of the person with ID. Such staff were proposing that ideally staff from the ID service should be in the hospital with them. The similarity here is that in paediatric care it is acknowledged that children can experience separation anxiety when separated from the primary caregiver and Bowlby’s Attachment theory had given the scientific evidence necessary to allow parents to stay in hospitals with their children. Maybe ID staff need to be with their key service user at these times?
In an environment without evident high technology there could be a false sense of a non-busy, non-stressful situation. What I believe was evident was that the care was intensive without the high technological environment. The demands on staff to observe constantly the subtle behavioural or other changes of each person in their care was challenging. Effective management of care could be the difference between preventing an adverse event or having to manage the consequences of such an event. The demands for physical care were greater than I expected. I truly witnessed an excellent level of physical and emotional care delivered from the nursing and care staff. The attention to the individual’s needs was evident. Meeting the individual likes and dislikes of each person was considered and measured; from their dietary likes and dislikes to their cosmetic needs. In many cases, this attention to meeting the individual’s needs was ongoing for years. The bonds of time were firmly established between staff and service users and were clearly reflected when an occasion of advocacy was required. Key workers spoke passionately about the likes/dislikes and wishes of the person and I got the impression that they were prepared to take their responsibility of advocacy very seriously. It would not be lip service. Again some of the cases were similar to paediatric case examples in trying to support the individual’s wishes.
I felt privileged to visit these adult intellectual disability services and to observe the daily care being delivered. I feel great sadness that it appears difficult to recruit students into intellectual disability nursing—I now know that it is an enormously rewarding role. I commend the dedication of the staff whom I observed in practice and who in my opinion take on a parental role of unconditional love within their professional role with the persons with intellectual disabilities for whom they care.
Lastly I would like to take this opportunity to thank all of the staff and service users who so willingly welcomed me into their days and shared their time and skills with me. Go raibh maith agaibh go léir!