Peer Connect Service for people with pulmonary fibrosis in Australia: Participants' experiences and process evaluation
ABSTRACT Background and objective 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 experi...
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| Veröffentlicht in: | Respirology (Carlton, Vic.) Vic.), 2020-10, Vol.25 (10), p.1053-1059 |
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| creator | Tikellis, Gabriella Lee, Joanna Y.T. Corte, Tamera J. Maloney, Jamie Bartlett, Michael Crawford, Tonia Glaspole, Ian N. Goh, Nicole 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. |
| description | ABSTRACT
Background and objective
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.
Methods
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.
Results
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.
Conclusion
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.
The Peer Connect Service initiated by Lung Foundation Australia provides a model of support for people with a rare disease such as pulmonary fibrosis (PF) who are widely dispersed geographically. The service provides a unique opportunity for people with PF to connect and share experiences and offer mutual support.
See related Editorial |
| doi_str_mv | 10.1111/resp.13807 |
| format | Article |
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Background and objective
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.
Methods
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.
Results
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.
Conclusion
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.
The Peer Connect Service initiated by Lung Foundation Australia provides a model of support for people with a rare disease such as pulmonary fibrosis (PF) who are widely dispersed geographically. The service provides a unique opportunity for people with PF to connect and share experiences and offer mutual support.
See related Editorial</description><identifier>ISSN: 1323-7799</identifier><identifier>EISSN: 1440-1843</identifier><identifier>DOI: 10.1111/resp.13807</identifier><identifier>PMID: 32207225</identifier><language>eng</language><publisher>Chichester, UK: John Wiley & Sons, Ltd</publisher><subject>evaluation ; Fibrosis ; Lung diseases ; Peers ; Pulmonary fibrosis ; qualitative research ; Respiratory diseases ; service delivery</subject><ispartof>Respirology (Carlton, Vic.), 2020-10, Vol.25 (10), p.1053-1059</ispartof><rights>2020 Asian Pacific Society of Respirology</rights><rights>2020 Asian Pacific Society of Respirology.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c3937-92907bbc2d45eae4264c1a9dc54729155d0cefdaf052318f44a45db6f70872c3</citedby><cites>FETCH-LOGICAL-c3937-92907bbc2d45eae4264c1a9dc54729155d0cefdaf052318f44a45db6f70872c3</cites><orcidid>0000-0003-2061-845X ; 0000-0002-5154-6658 ; 0000-0002-5118-2890 ; 0000-0001-9979-8726 ; 0000-0002-2358-0736 ; 0000-0003-2065-4346 ; 0000-0002-5434-9342</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fresp.13807$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fresp.13807$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,776,780,1411,27903,27904,45553,45554</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32207225$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Tikellis, Gabriella</creatorcontrib><creatorcontrib>Lee, Joanna Y.T.</creatorcontrib><creatorcontrib>Corte, Tamera J.</creatorcontrib><creatorcontrib>Maloney, Jamie</creatorcontrib><creatorcontrib>Bartlett, Michael</creatorcontrib><creatorcontrib>Crawford, Tonia</creatorcontrib><creatorcontrib>Glaspole, Ian N.</creatorcontrib><creatorcontrib>Goh, Nicole</creatorcontrib><creatorcontrib>Herrmann, Kelcie</creatorcontrib><creatorcontrib>Hey‐Cunningham, Alison J.</creatorcontrib><creatorcontrib>Keir, Greg</creatorcontrib><creatorcontrib>Khor, Yet H.</creatorcontrib><creatorcontrib>Price, John</creatorcontrib><creatorcontrib>Sandford, Debra G.</creatorcontrib><creatorcontrib>Spencer, Lissa</creatorcontrib><creatorcontrib>Teoh, Alan</creatorcontrib><creatorcontrib>Walsh, Jennifer</creatorcontrib><creatorcontrib>Webster, Susanne</creatorcontrib><creatorcontrib>Holland, Anne E.</creatorcontrib><title>Peer Connect Service for people with pulmonary fibrosis in Australia: Participants' experiences and process evaluation</title><title>Respirology (Carlton, Vic.)</title><addtitle>Respirology</addtitle><description>ABSTRACT
Background and objective
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.
Methods
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.
Results
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.
Conclusion
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.
The Peer Connect Service initiated by Lung Foundation Australia provides a model of support for people with a rare disease such as pulmonary fibrosis (PF) who are widely dispersed geographically. The service provides a unique opportunity for people with PF to connect and share experiences and offer mutual support.
See related Editorial</description><subject>evaluation</subject><subject>Fibrosis</subject><subject>Lung diseases</subject><subject>Peers</subject><subject>Pulmonary fibrosis</subject><subject>qualitative research</subject><subject>Respiratory diseases</subject><subject>service delivery</subject><issn>1323-7799</issn><issn>1440-1843</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><recordid>eNp9kUtP3DAUha0K1IFpN_0ByBKLIqRQP-OkOzTiJSExYmZvOc6NapSxg50M8O8xHdoFC-7mnsWnc6_OQegHJWc0z68IaTijvCLqCzqgQpCCVoLvZc0ZL5Sq6xk6TOmBEMIlkV_RjDNGFGPyAG2XABEvgvdgR7yCuHUWcBciHiAMPeAnN_7Bw9RvgjfxBXeuiSG5hJ3H51Mao-md-Y2XJo7OusH4Mf3E8DxAdOAtJGx8i4cYskwYtqafzOiC_4b2O9Mn-P6-52h9ebFeXBe3d1c3i_PbwvKaq6JmNVFNY1krJBgQrBSWmrq1UihWUylbYqFrTUck47TqhDBCtk3ZKVIpZvkcnexs8wePE6RRb1yy0PfGQ5iSZrxipSprQTJ6_AF9CFP0-TnNRD5c0VKJTJ3uKJtTSBE6PUS3ycFoSvRbGfqtDP23jAwfvVtOzQba_-i_9DNAd8CT6-HlEyt9f7Fa7kxfAQ6FldE</recordid><startdate>202010</startdate><enddate>202010</enddate><creator>Tikellis, Gabriella</creator><creator>Lee, Joanna Y.T.</creator><creator>Corte, Tamera J.</creator><creator>Maloney, Jamie</creator><creator>Bartlett, Michael</creator><creator>Crawford, Tonia</creator><creator>Glaspole, Ian N.</creator><creator>Goh, Nicole</creator><creator>Herrmann, Kelcie</creator><creator>Hey‐Cunningham, Alison J.</creator><creator>Keir, Greg</creator><creator>Khor, Yet H.</creator><creator>Price, John</creator><creator>Sandford, Debra G.</creator><creator>Spencer, Lissa</creator><creator>Teoh, Alan</creator><creator>Walsh, Jennifer</creator><creator>Webster, Susanne</creator><creator>Holland, Anne E.</creator><general>John Wiley & Sons, Ltd</general><general>Wiley Subscription Services, Inc</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7T5</scope><scope>H94</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0003-2061-845X</orcidid><orcidid>https://orcid.org/0000-0002-5154-6658</orcidid><orcidid>https://orcid.org/0000-0002-5118-2890</orcidid><orcidid>https://orcid.org/0000-0001-9979-8726</orcidid><orcidid>https://orcid.org/0000-0002-2358-0736</orcidid><orcidid>https://orcid.org/0000-0003-2065-4346</orcidid><orcidid>https://orcid.org/0000-0002-5434-9342</orcidid></search><sort><creationdate>202010</creationdate><title>Peer Connect Service for people with pulmonary fibrosis in Australia: Participants' experiences and process evaluation</title><author>Tikellis, Gabriella ; Lee, Joanna Y.T. ; Corte, Tamera J. ; Maloney, Jamie ; Bartlett, Michael ; Crawford, Tonia ; Glaspole, Ian N. ; Goh, Nicole ; 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.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c3937-92907bbc2d45eae4264c1a9dc54729155d0cefdaf052318f44a45db6f70872c3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>evaluation</topic><topic>Fibrosis</topic><topic>Lung diseases</topic><topic>Peers</topic><topic>Pulmonary fibrosis</topic><topic>qualitative research</topic><topic>Respiratory diseases</topic><topic>service delivery</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Tikellis, Gabriella</creatorcontrib><creatorcontrib>Lee, Joanna Y.T.</creatorcontrib><creatorcontrib>Corte, Tamera J.</creatorcontrib><creatorcontrib>Maloney, Jamie</creatorcontrib><creatorcontrib>Bartlett, Michael</creatorcontrib><creatorcontrib>Crawford, Tonia</creatorcontrib><creatorcontrib>Glaspole, Ian N.</creatorcontrib><creatorcontrib>Goh, Nicole</creatorcontrib><creatorcontrib>Herrmann, Kelcie</creatorcontrib><creatorcontrib>Hey‐Cunningham, Alison J.</creatorcontrib><creatorcontrib>Keir, Greg</creatorcontrib><creatorcontrib>Khor, Yet H.</creatorcontrib><creatorcontrib>Price, John</creatorcontrib><creatorcontrib>Sandford, Debra G.</creatorcontrib><creatorcontrib>Spencer, Lissa</creatorcontrib><creatorcontrib>Teoh, Alan</creatorcontrib><creatorcontrib>Walsh, Jennifer</creatorcontrib><creatorcontrib>Webster, Susanne</creatorcontrib><creatorcontrib>Holland, Anne E.</creatorcontrib><collection>PubMed</collection><collection>CrossRef</collection><collection>Immunology Abstracts</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Respirology (Carlton, Vic.)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Tikellis, Gabriella</au><au>Lee, Joanna Y.T.</au><au>Corte, Tamera J.</au><au>Maloney, Jamie</au><au>Bartlett, Michael</au><au>Crawford, Tonia</au><au>Glaspole, Ian N.</au><au>Goh, Nicole</au><au>Herrmann, Kelcie</au><au>Hey‐Cunningham, Alison J.</au><au>Keir, Greg</au><au>Khor, Yet H.</au><au>Price, John</au><au>Sandford, Debra G.</au><au>Spencer, Lissa</au><au>Teoh, Alan</au><au>Walsh, Jennifer</au><au>Webster, Susanne</au><au>Holland, Anne E.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Peer Connect Service for people with pulmonary fibrosis in Australia: Participants' experiences and process evaluation</atitle><jtitle>Respirology (Carlton, Vic.)</jtitle><addtitle>Respirology</addtitle><date>2020-10</date><risdate>2020</risdate><volume>25</volume><issue>10</issue><spage>1053</spage><epage>1059</epage><pages>1053-1059</pages><issn>1323-7799</issn><eissn>1440-1843</eissn><abstract>ABSTRACT
Background and objective
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.
Methods
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.
Results
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.
Conclusion
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.
The Peer Connect Service initiated by Lung Foundation Australia provides a model of support for people with a rare disease such as pulmonary fibrosis (PF) who are widely dispersed geographically. The service provides a unique opportunity for people with PF to connect and share experiences and offer mutual support.
See related Editorial</abstract><cop>Chichester, UK</cop><pub>John Wiley & Sons, Ltd</pub><pmid>32207225</pmid><doi>10.1111/resp.13807</doi><tpages>7</tpages><orcidid>https://orcid.org/0000-0003-2061-845X</orcidid><orcidid>https://orcid.org/0000-0002-5154-6658</orcidid><orcidid>https://orcid.org/0000-0002-5118-2890</orcidid><orcidid>https://orcid.org/0000-0001-9979-8726</orcidid><orcidid>https://orcid.org/0000-0002-2358-0736</orcidid><orcidid>https://orcid.org/0000-0003-2065-4346</orcidid><orcidid>https://orcid.org/0000-0002-5434-9342</orcidid><oa>free_for_read</oa></addata></record> |
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| source | Wiley-Blackwell Journals |
| subjects | evaluation Fibrosis Lung diseases Peers Pulmonary fibrosis qualitative research Respiratory diseases service delivery |
| title | Peer Connect Service for people with pulmonary fibrosis in Australia: Participants' experiences and process evaluation |
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