Implementation of knowledge-based palliative care in nursing homes and pre-post post evaluation by cross-over design: a study protocol

Gerd Ahlström, Per Nilsen, Eva Benzein, Lina Behm, Birgitta Wallerstedt, Magnus Persson, Anna Sandgren, Gerd Ahlström, Per Nilsen, Eva Benzein, Lina Behm, Birgitta Wallerstedt, Magnus Persson, Anna Sandgren

Abstract

Background: The demography of the world is changing as the population is ageing. Because of this change to a higher proportion of older people, the WHO has called for improved palliative care for older persons. A large number of all deaths in the industrialised world occur while older people are living in nursing homes and therefore a key question becomes how the principles of palliative care can be implemented in that context. The aims of this study are: a) to describe a model of an educational intervention with the goal of implementing knowledge-based palliative care in nursing homes, and b) to describe the design of the evaluation of the effectiveness regarding the implementation of knowledge-based palliative care.

Methods/design: A complex intervention is evaluated by means of a cross-over design. An educational intervention concerning palliative care consisting of five seminars during 6 months for staff and managers has been developed and conducted in 20 nursing homes in two counties. Before the intervention started, the feasibility was tested in a pilot study conducted in nursing homes not included in the main study. The intervention is evaluated through a non-randomized experimental design with intervention and control groups and pre- and post-assessments. The evaluation includes older persons living in nursing homes, next-of-kin, staff and managers. Data collection consists of quantitative methods such as questionnaires and register data and qualitative methods in the form of individual interviews, focus-group interviews and participant observations.

Discussion: The research will contribute to new knowledge about how to implement knowledge-based palliative care in a nursing home setting. A strength of this project is that the Medical Research Council framework of complex intervention is applied. The four recommended stages, Development, Feasibility and piloting, Evaluation and Implementation, are combined for the educational intervention, which functions as a strategy to achieve knowledge-based palliative care in the nursing homes. Implementation is always a question of change and a good theoretical understanding is needed for drawing valid conclusions about the causal mechanisms of change. The topic is highly relevant considering the world's ageing population. The data collection is completed and the analysis is ongoing.

Trial registration: NCT02708498 .

Keywords: Complex intervention; Cross-over design; Elderly care; Evaluation; Frail elderly; Implementation; Implementation theory; Palliative care; Quality improvement; Residential care home; Staff education.

Conflict of interest statement

Ethics approval and consent to participate

The project is approved as a multi-centre study by the Regional Ethics Review Board in Lund, Sweden (reference number: 2015/4). The ongoing research is guided by the research-ethical principles for medical research (the Declaration of Helsinki). To maintain the principle of non-maleficence, the participants were guaranteed confidentiality. In accordance with respecting the participants’ autonomy, all the participants were informed that they had the right to withdraw from the project at any time without suffering any consequences for their future care. The participants gave their oral and written informed consent before their participation began. In the interviews, the researchers were aware of power issues, in that an interview is not a conversation between two equal individuals. Regarding the data from the quality register, the researchers got anonymised data with code number and the data was traceable to any individual person.

The encounters were characterised by respect, and every effort was made to exercise the utmost sensitivity to the older persons’ signs of tiredness, which are a common part of frailty and a heavy burden of symptoms. In the interviews, we attempted to obtain beneficial knowledge while minimizing harmful consequences [31]. The interviewer was aware of the consequences when the situation involved private concerns. If an older person or a family member in the project was found to undergo emotional difficulties or stress, the researcher offered to help with contacting social worker or psychologist. The interview time was taken into careful consideration. The participants were given opportunity to reflect on what they said in the interviews, and time was also available for the participants to ask questions. The project is registered at Clinical Trials with registration number: NCT02708498.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

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Figures

Fig. 1
Fig. 1
The cross-over design of the implementation strategy (educational intervention) and the experimental evaluation
Fig. 2
Fig. 2
Flow chart of data collection in relation to the educational intervention

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