2.1.1 Introduction
This chapter describes the funded research project. This is Phase One of the research presented in this thesis. Phase One was conducted to explore the experiences of paid staff in supporting persons with ID and dementia. The overall objectives of the phase one were to identify any education and training deficits that staff may have in relation to caring for this population, and to design, deliver and evaluate an educational intervention to meet these deficits.
2.1.2 Research aims
The aims of this phase one were:
1. To explore the experiences of staff in intellectual disability and specialist palliative care settings, their experiences of caring for persons with intellectual disability and dementia from diagnosis to death, and to extrapolate their perceptions of when or how the person required ‘palliative’ care.
2. To identify the gaps in education and training needs of the staff in relation to the care required.
3. To deliver and evaluate an educational intervention to staff from the intellectual disability services and from the specialist palliative care service.
2.1.3 Methodology
Qualitative research is now more commonly used in health care research and more commonly used to provide evidence for practice (Bailey et al. 2002). A qualitative descriptive approach was used to guide the project (Sandelowski 2000). Qualitative descriptive research naturally draws on naturalistic enquiry – the study of phenomenon in its natural state. It is, therefore, of more value and importance to a study where the obtaining of straightforward information from people with regard to their concerns about a service, is the focus of inquiry (Sandelowski 2000:337). The purpose of this
investigation was (1) to identify any education and training deficits of staff who were caring for or who had cared for persons with ID and Alzheimer’s dementia, and (2) to develop, deliver and evaluate a training intervention to address these needs.
2.1.4 Study population
There were a total of fifty-seven participants in phase one. Fifty were from intellectual disability service providers in the greater Dublin area of Ireland. Seven were from one specialist palliative care service in the same catchment area.
2.1.5 Ethical conduct
Ethical approval from all the participating bodies in this study was received following due process. All research activity associated with the study was in accordance with the regulations of the University of Dublin, Trinity College (TCD) guidelines for the conduct of research studies (2002). The overall ethical approval for this research was granted by the Faculty of Health Sciences Committee TCD to the Principal Investigator. See Appendix 2. Access to the research sites was initiated by the principal investigator, and due process was followed by the research assistant (author of this thesis). All participants were afforded care in line with best ethical practice which reflected the ethical principles of beneficence, non-maleficence, autonomy and justice as outlined by Beauchamp and Childress (2004) and in line with the Declaration of Helsinki research on human participants (1989). All participants were assured of anonymity: each would be given an identification number which would be known only to the researcher.
2.1.6 Data collection
Fourteen focus group interviews were held to collect data. Focus group interviews were chosen for this study because they provided an opportunity to bring people together who had particular expertise and experience (Krueger & Casey 2000). A reflective journal was maintained in order to enhance the data and to assist the analysis. The data collected captured the experiences of the staff who were currently delivering or had delivered care to this population during their illness and up until their death. It was evident from reading and listening to the first three transcripts and from reflection on the visits that there were potentially ‘culture-specific issues’ emerging among staff in relation to end-of-life care. Therefore, four of the ID sites were revisited where there were staff from different cultural groups. The study explored the perceived education
and training needs of these staff and their perceptions of palliative care for this population.
2.1.7 Data analysis
Data analysis was initially undertaken manually and completed by using a computer- assisted qualitative data analysis software (CAQDAS) program called NVivo 7 (QSR International 2006). A combined approach was used to maximise a more thorough analysis. Qualitative content analysis was used, as it is most suitable for descriptive qualitative research and it is naturally oriented to presenting a summary of the data (Sandelowski 2000). Codes were generated from the data and systematically applied throughout analysis.
2.1.8 Findings
The data from this research were analysed thematically, and five themes emerged. These are listed in table1.
Table. 1 Themes from Phase One
Desirable care for the person with intellectual disability and Alzheimer’s dementia When should palliative care start
Communication skills Death and dying
Modification of practice
Theme 1: Desirable care for the person with intellectual disability and Alzheimer’s dementia.
At all times, staff articulated that they wished to care for persons with dementia within the ID services. They stressed that this was home for these persons and that they wished to keep them at home whenever possible and surrounded by people who were familiar to them. They acknowledged that they were unsure as to whether persons in the late stages of dementia knew where they were or recognised staff or peers, but they had witnessed individuals deteriorating and being very distressed when they were moved out of their usual environment. They generally appeared to manage to care for the person in the early and middle stages of the dementia in the same way as they had cared
for him/her prior to its onset, especially in settings where they were caring for one person with dementia at a time. They recognised that the living environments in many situations were not conducive to the supporting of a person with dementia, and they described the type of environment that they would wish the person to have. The logistics of caring for a person with dementia in smaller units and homes were also problematic. In the middle stage of dementia there were health and safety issues for staff to consider for persons and their peers. While persons with dementia were mobile it was important to keep them safe and secure in the building, but this meant on many occasions that the freedom of other clients was curtailed if doors had to be kept locked or kitchen facilities were made inaccessible.
Staff realised that early planning of care was important for the person with dementia. However, a lack of diagnosis of dementia appears to cause much of the ensuing frustration for staff, who could not put a plan of action in place to initiate a team approach to care, or look at future planning without this formal diagnosis. Multidisciplinary team care was recognised as essential in the care of a person with dementia. Nurses and carers provide most of the day-to-day care of the clients. The staff with the most experience of dementia care explicitly stated that nursing staff were necessary in the care setting to provide care for persons with dementia once they started to develop health care needs or swallowing difficulties. Staff from the specialist palliative care service recognised that they did not necessarily have expertise in managing dementia, and thought that the ID services should work closely with the generic dementia services in relation to dementia care.
Theme 2: When should palliative care start?
Many of the staff from the ID services considered that palliative care would begin when persons were at a late stage of dementia, when they were physically very unwell. Others directly equated the start of palliative care with the placement of a PEG (percutaneous endoscopic gastrostomy) tube in the person to maintain his/her nutrition and hydration, or with the need for pain and symptom management. A minority of the staff debated the idea that they were delivering palliative care from the time the person first showed decline, because they were providing comfort care from then onwards. ID staff in general had not thought about accessing specialist palliative care for someone with dementia, but in the interviews they began to ponder this. Some staff considered that the
delivery or initiation of palliative care was only for people with malignant disease or motor-neuron disease. There was a mixed response to the issue of whether staff in ID services had a role to play in bereavement care of the families of clients who had died. Follow-up visits by relatives were made after the deaths of clients, and staff welcomed them and provided informal support to the best of their abilities.
Person-centred care, to include excellent psycho-social care, was evident across the ID sites, and this was explicitly commented on by specialist palliative care staff as a particular strength of the care-giving witnessed in such settings. The need to meet the spiritual care of the person with dementia or of their relatives was not strongly evident in the findings. The specialist palliative care staff felt that they had a limited input and that what they had to offer over and above symptom management would be some expertise in how to approach decision-making, particularly ethical decision-making, e.g. about nutrition and hydration at the end of life. Staff from specialist palliative services were anxious that if staff in ID services provided a palliative approach to care within their own service, they would also know when to access the specialist palliative care level-three expertise. Staff at all ID sites stated that they would want support from specialist palliative care services if pain and symptom management in the care of the person with dementia was an issue.
Theme 3: Communication skills
Staff from the ID services expressed feelings of discomfort about talking with others about dementia, death and dying. They felt challenged when talking with other professionals, and they lacked confidence when dealing with colleagues, families and peers of the client. This was especially so for staff who had limited experience of caring for clients with dementia. In the focus groups, staff were beginning to wonder whether clients would understand and whether they ought to talk to them about the dementia. Staff were beginning to talk to the peers of the person about dementia, because they were aware that peer education was reducing anxiety and inappropriate behaviours within the living environments. Staff recognized that they required particular skills in communication within the ID setting; they also reported that because they knew the clients for so long (over many years) that they were able to understand them and be their advocate when necessary when dealing with other agencies or with multidisciplinary teams. Staff reported their belief that people in the generic services do
not understand the needs of persons with an ID in the first place, and that if they have the dual diagnosis of ID and dementia, then they will be understood even less.
Theme 4: Death and dying
Staff on some sites considered that the clients knew that they were dying and that clients with severe and profound disability knew when someone was dying. Generally, staff in the ID services identified that families needed support when the person was dying. Services varied in the amount of formal contact they kept, and much depended on the relationship that the family had with the service before their relative died.
There was a mixed response with regard to the location of where the person with dementia should have end-of-life care. Some wanted a unit for end-of-life care, others debated its effectiveness or appropriateness. Services where there were units to cater for persons at the end-of-life or when dying stated that these were not suitable for persons with dementia should they be ambulant, agitated, or noisy. Staff reported very positive experiences of their witnessing good deaths in patients with dementia in services where there was privacy for the person and relatives, and where the person was comfortable and then died peacefully. Staff also had some knowledge and skills of palliative care and had developed working relationships with specialist palliative care services in these situations. Conversely, staff reported that they had negative experiences where their clients died without these conditions being in place. Good deaths were not exclusive to the services described above, as staff appeared to have coped with uncomplicated deaths across the services without distress.
Throughout the dying trajectory, staff across all services included the peers of the person in the whole process of events around the client’s dying and death, and included them in all rituals as far as possible after the death. This inclusion of the person’s peers appeared to happen, not because the staff knew that it was theoretically good to include them in order to facilitate their own grieving, but rather because of a sense that they were family, and that if you were at home your family would be around and involved in everything. Some staff explicitly highlighted that the peers of the person needed bereavement support; others said that they thought that they did not understand and so did not need bereavement support. In services where they were beginning to give serious thought and consideration to this matter, they were reflecting back on cases and
beginning to wonder whether changes in client’s behaviour were in fact unresolved grief issues for the client.
Some cultural issues arose from this study in relation to patient autonomy, understanding of palliative care practice, attitudes to death and dying, talking to the person about dying, and rituals at time of death.
Staff had three main areas of concern regarding some clinical skills during end-of-life care. These skills were: siting a subcutaneous line, assessing pain and distress, and understanding and managing syringe drivers.
Staff identified ethical issues such as a lack of policies in place for decisions about resuscitation, nutrition and hydration at the end of life, and inappropriate versus appropriate use of PEG feeding in a person with advanced dementia.
Theme 5: Modification of practice
Staff across all sites recognised the need for training and education with regard to dementia and Alzheimer’s disease in order to understand the condition from physiological, social, emotional and practical perspectives. Staff reported the difficulties they experienced when assessing the person with Alzheimer’s dementia. In one site the staff were unaware of any tools available to assess for dementia in this population. Staff recognised that their role was changing from one of teaching new skills to the person (client) , to a role of supporting someone losing skills because of their dementia. Staff spoke about the difficult decisions which had to be made about the well-being of persons in relation to moving them from their ‘home’, when it was no longer possible to manage them because of their increasing need for more nursing care and resources. The staff did not explicitly identify these decisions as ethical in nature, but displayed ethical distress (Purtillo 1999) when they spoke about how difficult it was to get a consensus across staff concerning the right time for the client to be moved, or when staff resisted prolonged respite for clients – believing that they ought to be ‘at home’.
They were perturbed that clients had died very quickly in outside agencies after their having been transferred from their care. Expert feeding is a skill required when the person develops feeding difficulties, and care staff, in particular, reported being fearful about feeding persons with dementia when they had significant swallowing difficulties. There was no explicit acknowledgment in the interviews that staff may require more
training in feeding technique, for example in relation to PEG feeding. However, there appeared to be some gap in the staffs’ knowledge about the benefits and burdens associated with this intervention in persons with advanced dementia.
Staff across all sites identified that the care of these clients with advanced dementia takes time and resources. The staff wanted to deliver quality care but recognised that this is difficult because of all the other pressures around their looking after other clients
Staff from both ID services and specialist palliative care services acknowledged that they shared similar philosophies of care. During discussion about quality of life for the patient within the specialist palliative care service, a distinction was made that, in ID services, the staff maintain quality of life for the person by ensuring maximum independence, but that in the palliative care context it was about maintaining the person’s comfort. This comfort was mainly defined in terms of the medical management of symptoms by the specialist palliative care staff.
Staff in seven of the focus groups explicitly stated that there was a need for staff (nurses and carers) to have a knowledge and skill basis in ID care in order to be able to understand and care for someone with an ID.
A more comprehensive exploration of these themes is to be found in the report ‘Supporting Persons with Intellectual Disability and Advanced Dementia: Fusing the Horizons of Intellectual Disability, Palliative and Person-Centred Dementia Care’ (McCarron et al. 2008). For this report, written for the funding bodies of this project phase one), these five themes were collapsed into two major themes, (1) building upon services’ history; and (2) supporting comfort and optimal death.
An executive summary of this report is available at: http://www.nursing- midwifery.tcd.ie/assets/research/pdf/Fusing-Horizons-Exec-Summary.pdf