eprintid: 10194226 rev_number: 8 eprint_status: archive userid: 699 dir: disk0/10/19/42/26 datestamp: 2024-07-05 15:14:55 lastmod: 2024-07-05 15:14:55 status_changed: 2024-07-05 15:14:55 type: article metadata_visibility: show sword_depositor: 699 creators_name: Wray, Jo creators_name: Pagel, Christina creators_name: Coats, Louise creators_name: Chester, Adrian H creators_name: Kennedy, Fiona creators_name: Crowe, Sonya title: What does good care look like to people living with congenital heart disease in the 21st century? Qualitative online, asynchronous discussion forums ispublished: pub divisions: UCL divisions: B02 divisions: B04 divisions: C06 divisions: D14 divisions: F59 divisions: ZZ4 note: This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/. abstract: OBJECTIVES: As part of a wider study, our aim was to elicit perspectives of people with congenital heart disease (CHD) and/or their parents/carers about their experiences of healthcare and what is important to them when receiving care. DESIGN AND SETTING: A qualitative study involving a series of closed, asynchronous, online discussion forums underpinned by an interpretivist framework and set up and moderated by three patient charities via their Facebook pages. PARTICIPANTS: People with CHD and parents/carers of people with CHD from the UK. RESULTS: Five forums were run for 12-24 weeks across the three charities, and 343 participants signed up to the forums. Four linked themes related to processes of care were identified following thematic analysis of the transcripts: relationships and communication; access and coordination; experience of discrete episodes of care and psychological support. These impacted how care was experienced and, for some patients, outcomes of CHD and its treatment as well as broader health outcomes. In addition, context relating to stages of the patient journey was described, together with patient-related factors such as patients' knowledge and expertise in their own condition. CONCLUSIONS: People with CHD and their parents/carers want individualised, person-centred care delivered within an appropriately resourced, multidisciplinary service. Although examples of excellent care were provided it is evident that, from the perspective of patients and parents/carers, some National Health Service Standards for people with CHD were not being met. date: 2024-07 date_type: published publisher: BMJ official_url: https://doi.org/10.1136/bmjopen-2023-079691 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 2292042 doi: 10.1136/bmjopen-2023-079691 medium: Electronic pii: bmjopen-2023-079691 lyricists_name: Pagel, Anne lyricists_name: Crowe, Sonya lyricists_name: Wray, Joanna lyricists_id: ACPAG88 lyricists_id: SCROW81 lyricists_id: JWRAY00 actors_name: Pagel, Anne actors_id: ACPAG88 actors_role: owner funding_acknowledgements: PR-R20-0318-23001 [National Institute for Health and Care Research] full_text_status: public publication: BMJ Open volume: 14 number: 7 article_number: e079691 event_location: England issn: 2044-6055 citation: Wray, Jo; Pagel, Christina; Coats, Louise; Chester, Adrian H; Kennedy, Fiona; Crowe, Sonya; (2024) What does good care look like to people living with congenital heart disease in the 21st century? Qualitative online, asynchronous discussion forums. BMJ Open , 14 (7) , Article e079691. 10.1136/bmjopen-2023-079691 <https://doi.org/10.1136/bmjopen-2023-079691>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10194226/2/Pagel_e079691.full.pdf