{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T23:29:35Z","timestamp":1777937375629,"version":"3.51.4"},"reference-count":48,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2021,3,3]],"date-time":"2021-03-03T00:00:00Z","timestamp":1614729600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Advanced Nursing"],"published-print":{"date-parts":[[2021,6]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To report a protocol for a qualitative study to better understand the key factors that influence decision making about pregnancy from women's perspectives and to use these data to develop a theoretical model for shared decision\u2010making tools for the multiple stakeholders.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Mixed\u2010method design using online surveys (with validated components) and purposively sampled follow\u2010up semi structured interviews.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Funded from September 2020 for 12\u00a0months. Online surveys of adult women (aged 18\u201350) identified via all Wales kidney database (n\u00a0\u2265\u00a0500), additional recruitment through multidisciplinary healthcare professionals, relevant third sector organizations and social media. Follow\u2010up in\u2010depth qualitative interviews with n\u00a0=\u00a030 women. Linear regression models to identify associations between shared decision\u2010making preferences and clinical and psychosocial variables. Qualitative interviews will use a visual timeline task to empower women in taking control over their narratives. Qualitative data will be fully transcribed and analysed thematically, based around a chronological and theoretical (theoretical domains framework) structure that maps out key challenges and opportunities for improved decision support in the care pathway. Visual timelines will be used during stakeholder consultation activities, to enable us to co\u2010create a map of current support, gaps in provision, and opportunities for interventions. Quantitative data will be analysed descriptively to characterize our cohort. We will assemble a multidisciplinary shared decision\u2010making intervention development group and provide ongoing stakeholder consultation activities with patient and public representatives.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>Outcomes will support new learning into; the ways women's knowledge of kidney disease may affect family planning and pregnancy, their needs in terms of psychological and social support, and how they weigh up the pros and cons of starting a family.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Impact<\/jats:title>\n                    <jats:p>Evidence will inform the design of new shared decision\u2010making tools to better support women with the complex and often emotional decisions about having children while living with kidney disease.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jan.14803","type":"journal-article","created":{"date-parts":[[2021,3,3]],"date-time":"2021-03-03T06:31:04Z","timestamp":1614753064000},"page":"2887-2897","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Engaging and supporting women with chronic kidney disease with pre\u2010conception decision\u2010making (including their experiences during COVID 19): A mixed\u2010methods study protocol"],"prefix":"10.1111","volume":"77","author":[{"given":"Rhiannon","family":"Phillips","sequence":"first","affiliation":[{"name":"Cardiff School of Sport and Health Sciences Cardiff Metropolitan University Cardiff UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0185-6639","authenticated-orcid":false,"given":"Leah","family":"McLaughlin","sequence":"additional","affiliation":[{"name":"School of Health Sciences Bangor University Bangor UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Denitza","family":"Williams","sequence":"additional","affiliation":[{"name":"Cardiff School of Sport and Health Sciences Cardiff Metropolitan University Cardiff UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Helen","family":"Williams","sequence":"additional","affiliation":[{"name":"Patient Representative Cardiff UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4238-5984","authenticated-orcid":false,"given":"Jane","family":"Noyes","sequence":"additional","affiliation":[{"name":"School of Health Sciences Bangor University Bangor UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Caron","family":"Jones","sequence":"additional","affiliation":[{"name":"Betsi Cadwaladr University Health Board North Wales UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Oleary","sequence":"additional","affiliation":[{"name":"Department of Nephrology and Transplant Cardiff &amp; Vale University Health Board Cardiff UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carmen","family":"Mallett","sequence":"additional","affiliation":[{"name":"Swansea Bay University Health Board Swansea UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sian","family":"Griffin","sequence":"additional","affiliation":[{"name":"Department of Nephrology and Transplant Cardiff &amp; Vale University Health Board Cardiff UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2021,3,3]]},"reference":[{"key":"e_1_2_8_2_1","unstructured":"2018 WKD Theme \u2010 World Kidney Day. (2020). Retrieved from https:\/\/www.worldkidneyday.org\/2018\u2010campaign\/2018\u2010wkd\u2010theme\/"},{"key":"e_1_2_8_3_1","unstructured":"AIHW. (2014).Cardiovascular disease diabetes and chronic kidney disease: Australian facts: Prevalence and incidence Table of contents \u2010 Australian Institute of Health and Welfare. Retrieved fromhttps:\/\/www.aihw.gov.au\/reports\/heart\u2010stroke\u2010vascular\u2010disease\/cardiovascular\u2010diabetes\u2010chronic\u2010kidney\u2010prevalence\/contents\/table\u2010of\u2010contents."},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.2215\/CJN.04400419"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.322.7294.1115"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1159\/000489897"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.2215\/CJN.00130117"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6947-13-S2-S2"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-019-7442-5"},{"key":"e_1_2_8_10_1","first-page":"979","article-title":"Developing and evaluating complex interventions: The new Medical Research Council guidance","volume":"337","author":"Craig P.","year":"2008","journal-title":"BMJ"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2013.05.009"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-012-2077-6"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0004705"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1177\/160940690600500107"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-018-2915-2"},{"key":"e_1_2_8_16_1","unstructured":"Foundation H.(2012).Helping people share decision making | The Health Foundation. Retrieved fromhttps:\/\/www.health.org.uk\/publications\/helping\u2010people\u2010share\u2010decision\u2010making"},{"key":"e_1_2_8_17_1","unstructured":"Goldberg I. &IIan K.(n.d.).The role of gender in chronic kidney disease \u2010 European Medical Journal. Retrieved fromhttps:\/\/www.emjreviews.com\/nephrology\/article\/the\u2010role\u2010of\u2010gender\u2010in\u2010chronic\u2010kidney\u2010disease\/"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1080\/17441692.2016.1170869"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1207\/s15327906mbr2603_7"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.whi.2012.08.001"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1038\/ki.2008.261"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bpobgyn.2018.12.003"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/160940691501400302"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2393-14-58"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315617444"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X17697304"},{"key":"e_1_2_8_27_1","doi-asserted-by":"publisher","DOI":"10.1186\/1748-5908-6-42"},{"key":"e_1_2_8_28_1","doi-asserted-by":"publisher","DOI":"10.1037\/pas0000327"},{"key":"e_1_2_8_29_1","doi-asserted-by":"publisher","DOI":"10.1038\/nrneph.2018.12"},{"key":"e_1_2_8_30_1","unstructured":"Network E. (n.d.). Mixed methods studies | Study Designs | The EQUATOR Network.|Mixed methods studies | Study Designs | The EQUATOR Network.|Mixed methods studies | Study Designs | The EQUATOR Network. Retrieved October 5 2020 from https:\/\/www.equator\u2010network.org\/reporting\u2010guidelines\u2010study\u2010design\/mixed\u2010methods\u2010studies\/."},{"key":"e_1_2_8_31_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjgh-2018-000893"},{"issue":"4","key":"e_1_2_8_32_1","article-title":"Designing a co\u2010productive study to overcome known methodological challenges in organ donation research with bereaved family members","volume":"22","author":"Noyes J.","year":"2019","journal-title":"Health Expectations Policy: An International Journal of Public Participation in Health Care and Health Policy"},{"issue":"7783","key":"e_1_2_8_33_1","first-page":"1147","article-title":"Three techniques for integrating data in mixed methods studies","volume":"341","author":"O\u2019Cathain A.","year":"2010","journal-title":"BMJ (Online)"},{"key":"e_1_2_8_34_1","unstructured":"Ottawa Hospital R. I.(2018).Decision self\u2010efficacy \u2010 evaluation measures \u2010 patient decision aids \u2010 Ottawa hospital research institute. Retrieved fromhttps:\/\/decisionaid.ohri.ca\/eval_self.html"},{"key":"e_1_2_8_35_1","doi-asserted-by":"publisher","DOI":"10.1186\/s41927-018-0029-4"},{"key":"e_1_2_8_36_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12882-018-0864-y"},{"key":"e_1_2_8_37_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2007.10.021"},{"key":"e_1_2_8_38_1","unstructured":"Public Health England. (2014).Chronic kidney disease prevalence model. ."},{"key":"e_1_2_8_39_1","unstructured":"Renal Registry U. K.(2015).What is Renal Replacement Therapy. Retrieved fromhttps:\/\/www.renalreg.org\/wp\u2010content\/uploads\/2017\/09\/170808_UKRR_RRT_Infographic_RRT.pdf."},{"issue":"6","key":"e_1_2_8_40_1","first-page":"e024950","article-title":"Using the theoretical domains framework and the behavioural change wheel in an overarching synthesis of systematic reviews","volume":"9","author":"Richardson M.","year":"2019","journal-title":"British Medical Journal Open"},{"key":"e_1_2_8_41_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(18)32865-4"},{"key":"e_1_2_8_42_1","unstructured":"Sture H.(1979).A Simple Sequentially Rejective Multiple Test Procedure on JSTOR. Retrieved fromhttps:\/\/www.jstor.org\/stable\/4615733?seq=1"},{"key":"e_1_2_8_43_1","doi-asserted-by":"publisher","DOI":"10.1177\/1098214005283748"},{"key":"e_1_2_8_44_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.ajkd.2015.08.023"},{"key":"e_1_2_8_45_1","volume-title":"Wales Population 2020 | Population UK","author":"Wales Population Database","year":"2020"},{"key":"e_1_2_8_46_1","unstructured":"Welsh Government. (n.d.).Stats Wales. Retrieved fromhttps:\/\/statswales.gov.wales\/Catalogue\/Population\u2010and\u2010Migration\/Population\/Estimates\/Local\u2010Authority\/populationestimates\u2010by\u2010localauthority\u2010year"},{"key":"e_1_2_8_47_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12882-019-1560-2"},{"key":"e_1_2_8_48_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.midw.2019.08.002"},{"key":"e_1_2_8_49_1","doi-asserted-by":"publisher","DOI":"10.2147\/IJWH.S152750"}],"container-title":["Journal of Advanced Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jan.14803","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/jan.14803","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jan.14803","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,1]],"date-time":"2023-09-01T21:31:17Z","timestamp":1693603877000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jan.14803"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,3,3]]},"references-count":48,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2021,6]]}},"alternative-id":["10.1111\/jan.14803"],"URL":"https:\/\/doi.org\/10.1111\/jan.14803","archive":["Portico"],"relation":{"has-review":[{"id-type":"doi","id":"10.1111\/JAN.14803\/v1\/decision1","asserted-by":"object"}]},"ISSN":["0309-2402","1365-2648"],"issn-type":[{"value":"0309-2402","type":"print"},{"value":"1365-2648","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,3,3]]},"assertion":[{"value":"2020-11-07","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-02-02","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-03-03","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}