Background As a small hospice, whose only research activity had been individual staff undertaking Masters degrees or local university collaborative service evaluation, opportunity of a national multicentre trial of short specialist palliative care intervention (SSPCI) in advanced neurological disease (AND) was exciting and daunting. The local neurological centre identified suitable patients, explained, consented, randomised and undertook research questionnaires. The hospice delivered intervention, following required training for involved staff.
Method Collation staff/patient comments about study involvement.
Results Staff reported pride at being involved with high calibre institutions; anxious and keen to get it right; initially saw trial patients as different and lacked confidence assessing and evaluating their care; positive experience following patient (with long standing diagnoses, and excellent existing care/support at home) from admission to discharge; keen to demonstrate impact of SSPCI in AND patients; having named clinical lead nurse responsible for overall supervision of study proved beneficial and necessary; challenges talking to patients with long standing diagnoses about preferred place of care and future care planning. Patients reported feeling proud to take part; initial reluctance to attend hospice due to pre conceived ideas, but all now state look forward to coming. One participant decided participating was not for him and withdrew.
Conclusion Significant multiprofessional staff time and effort involved in delivering intervention – more than expected for a similar number of usual referrals. Staff recognised the vital importance of thorough initial clinical assessment on admission; used some new educational and inspirational outcome measures; further educated in whole ‘research process’ and realise importance of adhering to strict requirements; frustrated that unable to signpost patients elsewhere for support at end of interventions due to lack of available resources and/or funding.
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