title: Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma - a Pilot Study.
abstract: The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.
authors.affiliation: Faculty of Health Sciences, School of Nursing, Midwifery and Paramedicine, Curtin University, GPO Box U1987, Perth, WA, 6845, Australia. g.halkett@curtin.edu.au.
authors.forename: Georgia K B
authors.initials: GKB
authors.lastname: Halkett
authors.affiliation: Calvary Health Care Kogarah and Cunningham Centre for Palliative Care, Sydney, New South Wales, Australia.|School of Medicine, The University of Notre Dame, Sydney, New South Wales, Australia.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Lobb
authors.affiliation: Department of Psychiatry, Sir Charles Gairdner Hospital, Perth, Western Australia, Australia.|Department of Health WA, WA Cancer and Palliative Care Network, Perth, Western Australia, Australia.
authors.forename: Lisa
authors.initials: L
authors.lastname: Miller
authors.affiliation: Telethon Kids Institute, University of Western Australia, Perth, Western Australia, Australia.
authors.forename: Thérèse
authors.initials: T
authors.lastname: Shaw
authors.affiliation: School of Public Health, Curtin University, Perth, Western Australia, Australia.|School of Population Health, The University of Western Australia, Perth, Western Australia, Australia.
authors.forename: Rachael
authors.initials: R
authors.lastname: Moorin
authors.affiliation: Department of Medical Oncology, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia.
authors.forename: Anne
authors.initials: A
authors.lastname: Long
authors.affiliation: Department of Health WA, WA Cancer and Palliative Care Network, Perth, Western Australia, Australia.
authors.forename: Anne
authors.initials: A
authors.lastname: King
authors.affiliation: Faculty of Health Sciences, School of Nursing, Midwifery and Paramedicine, Curtin University, GPO Box U1987, Perth, WA, 6845, Australia.
authors.forename: Jenny
authors.initials: J
authors.lastname: Clarke
authors.affiliation: Carers WA, Perth, Western Australia, Australia.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Fewster
authors.affiliation: Department of Medical Oncology, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia.|School of Medicine, University of Western Australia, Nedlands, Western Australia, Australia.
authors.forename: Anna K
authors.initials: AK
authors.lastname: Nowak
mesh_terms: D000368:Aged; D017028:Caregivers / Q000193:education*; D003142:Communication; D005240:Feasibility Studies; D005260:Female; D005910:Glioma / Q000453:epidemiology* / Q000473:pathology; D007722:Health Knowledge, Attitudes, Practice; D006792:House Calls; D006801:Humans; D008297:Male; D008875:Middle Aged; D010865:Pilot Projects; D012017:Referral and Consultation; D011795:Surveys and Questionnaires; D013689:Telephone
keywords: Carers; Feasibility study; High-grade glioma; Nursing intervention