| Abstrakt: |
Background: During care transitions, the older (75+) patient's agenda can easily be missed. To counteract this, involving patients in shared clinical decision making has proven to be of great value. Likewise, involving patients and other stakeholders as researchers is gaining ground. Patient and public involvement (PPI) in research entails many benefits, for example, by bringing further insight from those with lived experiences of being ill. There are various challenges associated with involving some older patients, for example frailty, cognitive impairment and other chronic illnesses. To the best of our knowledge, there are only a few examples of initiatives involving older patients beyond research participation. The feasibility of involving frail older patients during an ongoing care transition from hospital to primary health care remains unknown. To investigate the feasibility of including older frail patients, their relatives and health care professionals (HCPs) as co-researchers, we established a study with increasingly demanding levels of patient involvement to identify relevant outcome measures for future transitional care research. Methods: The study was a pragmatic, qualitative feasibility study. The involved individuals were frail older patients, their relatives and HCPs. Patients and their relatives were interviewed, while the interviewer made reflective notes. A thematic analysis was made. Relatives and HCPs discussed the themes to identify relevant outcome measures and potentially co-create new patient-reported outcome measures (PROMs) for use in future transitional care studies. The feasibility was evaluated according to six involvement steps. The level of involvement was evaluated using the five-levelled Health Canada Public Involvement Continuum (HCPIC). Results: In total, eight patients, five relatives and three HCPs were involved in the study. Patients were involved in discussing care transitions (HCPIC level 3), while some relatives were engaged (HCPIC level 4) in forming PROMs. The partnership level of involvement (HCPIC level 5) was not reached. The thematic analysis and the subsequent theme discussion successfully formed PROMs. The key PROMs were related to care, transparency and the relatives' roles in the transitional care process. Conclusions: When applying a pragmatic involvement approach, frail older patients can be successfully involved in identifying relevant transitional care outcome measures; however, involving these patients as fellow researchers seems infeasible. To maintain involvement, supportive relatives are essential. Useful experiences for future research involvement of this vulnerable group were reported, arguing that patient participation has the potential to become inherent in future geriatric research. Plain English summary: The purpose of the study was to involve patients in identifying relevant outcome measures for future transitional care research. Involving patients in research is not new. What makes this project special is that it seeks to involve old, frail patients aged 75 plus. The project used open-form interviews that were not constrained in time and were not audio recorded; this was done to obtain confidence from the patients and their relatives. Each patient was interviewed twice: shortly before the patients left the hospital and shortly after discharge. The purpose was to discuss the patient's experiences during the discharge period. The first interview took place in the hospital, whereas the interviewer visited the patients in their residence for the second interview. An expert panel was then formed involving the patients' relatives and the professional health care workers. The expert panel discussed themes based on the data expressed by the patients during the interviews. In addition, an attempt was made to establish long-term cooperation between the patients, their relatives and the researchers. The health condition and vulnerable state of the patients made it difficult to continue their involvement throughout the research process. In fact, only the relatives and professionals were able to take part in the expert panel. Despite these challenges, the outcome of the project was positive. In conclusion, it makes sense to involve frail patients in transitional care research despite the challenges these patients face in their old age. In future research, frail older patients, relatives and other stakeholders can be involved. [ABSTRACT FROM AUTHOR] |
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