title: Participation in a randomised controlled feasibility study of a complex intervention for the management of the Respiratory Symptom Distress Cluster in lung cancer: patient, carer and research staff views.
abstract: This paper reports finding from a nested qualitative study designed to elicit the views and perceptions of those who participated in a randomised controlled feasibility trial testing a non-pharmacological intervention, Respiratory Distress Symptom Intervention (RDSI), for the management of the breathlessness-cough-fatigue symptom cluster in lung cancer. Semi-structured interviews were conducted with 11 lung cancer patients, three caregivers and seven researchers involved in recruitment, consent, RDSI training and delivery and participant follow-up. Thematic analysis identified key considerations including: the importance of informed consent emphasising commitment to completion of paperwork and raising awareness of potential sensitivities relating to content of questionnaires; ensuring screening for the presence of symptoms reflects the language used by patients; appreciation of the commitment required from participants to learn intervention techniques and embed them as part of everyday life; conduct of interviews with patients who decline to participate; and conduct of serial interviews with those receiving RDSI to further inform its routine implementation into clinical practice. This study will inform the development of a fully powered follow-on trial testing the hypothesis that RDSI plus usual care is superior to usual care alone in the effective management of this symptom cluster in lung cancer.
authors.affiliation: Health Services Research, University of Liverpool, Liverpool, UK.
authors.forename: J
authors.initials: J
authors.lastname: Ellis
authors.affiliation: School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
authors.forename: J
authors.initials: J
authors.lastname: Warden
authors.affiliation: School of Nursing, The Hong Kong Polytechnic University, Hong Kong.
authors.forename: A
authors.initials: A
authors.lastname: Molassiotis
authors.affiliation: School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
authors.forename: P
authors.initials: P
authors.lastname: Mackereth
authors.affiliation: Health Services Research, University of Liverpool, Liverpool, UK.
authors.forename: M
authors.initials: M
authors.lastname: Lloyd-Williams
authors.affiliation: Health Sciences, University of Southampton, Southampton, UK.
authors.forename: C
authors.initials: C
authors.lastname: Bailey
authors.affiliation: School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.|Christie Hospital NHS Foundation Trust, Manchester, UK.
authors.forename: K
authors.initials: K
authors.lastname: Burns
authors.affiliation: School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.|Christie Hospital NHS Foundation Trust, Manchester, UK.
authors.forename: J
authors.initials: J
authors.lastname: Yorke
mesh_terms: D019050:Acupressure; D000368:Aged; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D001945:Breathing Exercises; D017028:Caregivers; D003371:Cough / Q000175:diagnosis / Q000209:etiology / Q000534:rehabilitation*; D004417:Dyspnea / Q000175:diagnosis / Q000209:etiology / Q000534:rehabilitation*; D005221:Fatigue / Q000175:diagnosis / Q000209:etiology / Q000534:rehabilitation*; D005240:Feasibility Studies; D005260:Female; D017144:Focus Groups; D006801:Humans; D008175:Lung Neoplasms / Q000150:complications / Q000534:rehabilitation*; D008297:Male; D008403:Mass Screening; D008875:Middle Aged; D010358:Patient Participation; D036301:Qualitative Research; D016032:Randomized Controlled Trials as Topic; D035842:Research Subjects
keywords: carers; lung cancer; patients; qualitative; semi-structured interviews; symptoms