{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T23:26:00Z","timestamp":1788218760963,"version":"build-2803163510"},"reference-count":33,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2026,6,15]],"date-time":"2026-06-15T00:00:00Z","timestamp":1781481600000},"content-version":"vor","delay-in-days":14,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T00:00:00Z","timestamp":1780272000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100000106","name":"Saskatchewan Health Research Foundation","doi-asserted-by":"publisher","award":["6339"],"award-info":[{"award-number":["6339"]}],"id":[{"id":"10.13039\/501100000106","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000155","name":"Social Sciences and Humanities Research Council of Canada","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000155","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2026,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Approximately 1500 children in Canada are diagnosed with cystic fibrosis (CF). A childhood CF diagnosis has substantial implications for the mental health of parent caregivers (referred to as parents herein), who report elevated levels of emotional distress, stress, depression, and anxiety. Tailored psychosocial resources for this population are scarce and barriers exist to accessing community mental health services. Internet\u2010delivered programs present a promising mode of mental health resource delivery for this specialized population, but none are available in Canada. To inform the development of such a resource, the present study examined the lived experiences and information and resource needs of parents of people with CF (pwCF). There were no established hypotheses due to the exploratory nature of the study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      Twenty\u2010three parents (\n                      <jats:italic>M<\/jats:italic>\n                      <jats:sub>age<\/jats:sub>\n                      \u2009=\u200945.65, SD\u2009=\u20098.91) in Canada participated in the study. Each participant completed a consent form, demographic questionnaires, and a semi\u2010structured interview. All interviews were audio\u2010recorded, transcribed verbatim, and analyzed using reflexive thematic analysis.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Six major themes were generated: (1) challenges, (2) needs, (3) emotions and coping, (4) healthcare experiences, (5) unique parenting experiences, and (6) Internet\u2010delivered resource considerations. Subthemes were also generated for each major theme.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>These findings highlight the unique lived experiences and needs of parents of pwCF. The results indicate that parents would value an Internet\u2010delivered resource that provides tailored information about several topics. The information gained from this study will be utilized to develop an accessible, tailored, Internet\u2010delivered resource for parents of pwCF.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ppul.71703","type":"journal-article","created":{"date-parts":[[2026,6,15]],"date-time":"2026-06-15T11:43:31Z","timestamp":1781523811000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["A Qualitative Study of the Lived Experiences and Needs of Parent Caregivers of People With Cystic Fibrosis"],"prefix":"10.1002","volume":"61","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9013-3880","authenticated-orcid":false,"given":"Jasleen","family":"Kaur","sequence":"first","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea","family":"Hedlund","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Dollimount","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katelyn","family":"Lockinger","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shelby","family":"Shivak","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6657-2405","authenticated-orcid":false,"given":"Hilary A.","family":"Power","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather","family":"Switzer","sequence":"additional","affiliation":[{"name":"Wascana Rehabilitation Center Saskatchewan Health Authority Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cori","family":"Carey","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberley","family":"Evans","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julian S.","family":"Tam","sequence":"additional","affiliation":[{"name":"College of Medicine University of Saskatchewan Saskatoon Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8858-3452","authenticated-orcid":false,"given":"Kristi D.","family":"Wright","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Regina Regina Saskatchewan Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,6,15]]},"reference":[{"key":"e_1_2_10_2_1","unstructured":"Cystic Fibrosis Canada. The Canadian Cystic Fibrosis Registry 2023 Annual Data Report Toronto Canada: Cystic Fibrosis Canada; 2024 p 52."},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(16)00576-6"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.3389\/fphar.2019.01662"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/17534666221086416"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.prrv.2023.04.002"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2011.06.012"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2014-205983"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2015-207488"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10826-022-02228-x"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-015-0211-y"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1097\/NCN.0b013e31819f7c7c"},{"key":"e_1_2_10_13_1","doi-asserted-by":"crossref","unstructured":"H.Power S. M.Shivak H.Switzer R.Genoe D.Sharpe andK. D.Wright. The Internet\u2010delivered Cystic Fibrosis Mental Health Prevention Wellness and Resource (iCF\u2010PWR) Program: Acceptability and utility In: North American Cystic Fibrosis Conference. Philadelphia PA United States; 2022.","DOI":"10.1016\/S1569-1993(22)01007-4"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1037\/0022-0167.52.2.126"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1080\/24745332.2024.2312149"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2021.114523"},{"key":"e_1_2_10_17_1","doi-asserted-by":"crossref","unstructured":"V.Braun V.Clarke N.Hayfield L.Davey andE.Jenkinson Doing reflexive thematic analysis inSupporting Research in Counselling and Psychotherapy: Qualitative Quantitative and Mixed Methods Research ed.S.Bager\u2010CharlesonandA.McBeath(Palgrave Macmillan 2022) 19\u201338.","DOI":"10.1007\/978-3-031-13942-0_2"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10880-014-9396-1"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.23017"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2021.04.028"},{"issue":"2","key":"e_1_2_10_21_1","first-page":"87","article-title":"The Lived Experience of Fathers Caring for a Child With Cystic Fibrosis","volume":"45","author":"Shardonofsky J.","year":"2019","journal-title":"Pediatric Nursing"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.2307\/583761"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1037\/0278-6133.17.2.112"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/22.6.881"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1569-1993(24)01435-8"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-013-9622-2"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1177\/13674935241303539"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1177\/1367493518760734"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2014.12.015"},{"key":"e_1_2_10_30_1","doi-asserted-by":"publisher","DOI":"10.1177\/2374373520974322"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.3390\/children8121203"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.2196\/58774"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.25537"},{"key":"e_1_2_10_34_1","unstructured":"Cystic Fibrosis Foundation. Recommended Cystic Fibrosis (CF) Milestones by Age & Stage United States: Cystic Fibrosis Foundation 2021."}],"container-title":["Pediatric Pulmonology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ppul.71703","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ppul.71703","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ppul.71703","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,26]],"date-time":"2026-06-26T11:31:33Z","timestamp":1782473493000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ppul.71703"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6]]},"references-count":33,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2026,6]]}},"alternative-id":["10.1002\/ppul.71703"],"URL":"https:\/\/doi.org\/10.1002\/ppul.71703","archive":["Portico"],"relation":{},"ISSN":["8755-6863","1099-0496"],"issn-type":[{"value":"8755-6863","type":"print"},{"value":"1099-0496","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6]]},"assertion":[{"value":"2025-10-10","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-05","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-15","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e71703"}}