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Title: Peer Connect Service for people with pulmonary fibrosis in Australia: Participants' experiences and process evaluation.
Austin Authors: Tikellis, Gabriella;Lee, Joanna Y T;Corte, Tamera J;Maloney, Jamie;Bartlett, Michael;Crawford, Tonia;Glaspole, Ian N;Goh, Nicole S L ;Herrmann, Kelcie;Hey-Cunningham, Alison J;Keir, Greg;Khor, Yet H ;Price, John;Sandford, Debra G;Spencer, Lissa;Teoh, Alan;Walsh, Jennifer;Webster, Susanne;Holland, Anne E 
Affiliation: Department of Physiotherapy, Alfred Health, Melbourne, VIC, Australia
Department of Physiotherapy, La Trobe University, Melbourne, VIC, Australia
Institute for Respiratory Health, Perth, WA, Australia
Department of Respiratory Medicine, Princess Alexandra Hospital, Brisbane, QLD, Australia
Lung Foundation Australia, Brisbane, QLD, Australia
Department of Respiratory and Sleep Medicine, Alfred Health, Melbourne, VIC, Australia
Department of Medicine, The University of Melbourne, Melbourne, VIC, Australia
Discipline of Psychiatry, School of Medicine, The University of Adelaide, Adelaide, SA, Australia
Faculty of Health Sciences, The University of Sydney, Sydney, NSW, Australia
Department of Respiratory Medicine, Royal Prince Alfred Hospital, Sydney, NSW, Australia
Department of Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, VIC, Australia
NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Australia
The University of Sydney Central Clinical School, Sydney, NSW, Australia
Physiotherapy Department, Royal Prince Alfred Hospital, Sydney, NSW, Australia
Department of Thoracic Medicine, Royal Adelaide Hospital, Adelaide, SA, Australia
Department of Respiratory and Sleep Medicine, Austin Health, Heidelberg, Victoria, Australia
Institute for Breathing and Sleep, Austin Health, Heidelberg, Victoria, Australia
Issue Date: Oct-2020 2020-03-23
Publication information: Respirology 2020; 25(10): 1053-1059
Abstract: People living with pulmonary fibrosis (PF) report unmet needs for information and support. Lung Foundation Australia (LFA) have developed the Peer Connect Service to facilitate telephone support for people with PF across Australia. This project documented the experiences of participants and the resources required to support the service. Consenting participants took part in semi-structured interviews by telephone. Primary peers (peers who agreed to initiate contact) and secondary peers (eligible patients who sought a peer match) were interviewed. Thematic analysis was undertaken by two independent researchers. Data were collected on the number of matches and contacts required to establish each match. Interviews were conducted with 32 participants (16 primary peers, 15 secondary peers and 1 who was both), aged from 53 to 89 years with 56% being male. Major themes included the value of shared experiences, providing mutual support and the importance of shared personal characteristics (e.g. gender and hobbies) in allowing information and emotional support needs to be met. Participants saw face-to-face contact with peers as highly desirable whilst acknowledging the practical difficulties. Primary peers were cognizant that their role was not to provide medical advice but to listen and share experiences. In the 12-month period, 60 peer matches were made, each match requiring a minimum of seven staff contacts. The Peer Connect Service provides a unique opportunity for people with PF to share experiences and offer mutual support. This telephone matching model may be useful in providing peer support for individuals with rare diseases who are geographically dispersed.
DOI: 10.1111/resp.13807
ORCID: 0000-0002-5154-6658
PubMed URL: 32207225
Type: Journal Article
Subjects: evaluation
lung diseases
pulmonary fibrosis
qualitative research
service delivery
Appears in Collections:Journal articles

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