{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T01:20:49Z","timestamp":1777944049203,"version":"3.51.4"},"reference-count":36,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,4,27]],"date-time":"2026-04-27T00:00:00Z","timestamp":1777248000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["1K01AG084878-01A1"],"award-info":[{"award-number":["1K01AG084878-01A1"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["K02AG062"],"award-info":[{"award-number":["K02AG062"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Am J Hosp Palliat Care"],"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Carers of Persons with Parkinson\u2019s disease (PwP) have significant palliative care needs that are not adequately addressed in current models of care. To provide holistic and targeted support to carers it is important to understand their perceptions of the multiple dimensions of caregiving (defined as domains) and associated core components within each domain (defined as key concepts).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>To (a) elicit carers\u2019 perceptions and experiences of caregiving domains and associated key concepts within each domain, and (b) develop a framework of Parkinsons Disease (PD) caregiving incorporating the domains and their associated key concepts.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a qualitative descriptive study using perspective mapping, a novel hybrid mind-mapping method to develop a framework on the domains of PD caregiving. Semi-structured virtual interviews were conducted with former carers of PwP to elicit their experiences and perceptions of caregiving. Interviews were audio-recorded, de-identified, and transcribed. A codebook was developed and data were coded and analyzed to develop the framework of PD caregiving domains.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Fifteen carers participated in the study. A framework of PD caregiving was developed that comprised nine domains and 52 key concepts. The domains included decision-making, caregiving preparedness, care coordination, disease management, preserving self, emotional, spiritual, social\/cultural, and physical.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>A carer-elicited framework of PD caregiving is important to provide holistic support to PD carers. Both carers and clinicians may benefit from this framework that may help with identifying caregiving domains that require targeted support. Future research is needed to further refine the framework and build carer-centered intervention development.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10499091261446261","type":"journal-article","created":{"date-parts":[[2026,4,27]],"date-time":"2026-04-27T19:21:55Z","timestamp":1777317715000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Domains of Caregiving in Parkinson\u2019s Disease: A Framework Developed Through Perspective Mapping"],"prefix":"10.1177","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0809-6903","authenticated-orcid":false,"given":"Sandhya","family":"Seshadri","sequence":"first","affiliation":[{"name":"University of Rochester"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristin Corey","family":"Magan","sequence":"additional","affiliation":[{"name":"University of Massachusetts Dartmouth"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Angela","family":"Contento","sequence":"additional","affiliation":[{"name":"Warner School of Education & Human Development, University of Rochester"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer R.","family":"Mammen","sequence":"additional","affiliation":[{"name":"University of Massachusetts Dartmouth"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Benzi M.","family":"Kluger","sequence":"additional","affiliation":[{"name":"University of Rochester"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2026,4,27]]},"reference":[{"key":"e_1_3_7_2_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41531-017-0016-2"},{"key":"e_1_3_7_3_2","doi-asserted-by":"publisher","DOI":"10.1191\/0269216306pm1108oa"},{"key":"e_1_3_7_4_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.clineuro.2011.05.008"},{"key":"e_1_3_7_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(17)30074-1"},{"key":"e_1_3_7_6_2","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000233"},{"key":"e_1_3_7_7_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.27579"},{"key":"e_1_3_7_8_2","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2016.0325"},{"key":"e_1_3_7_9_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(23)00129-1"},{"key":"e_1_3_7_10_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.cger.2019.09.013"},{"key":"e_1_3_7_11_2","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000200214"},{"key":"e_1_3_7_12_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2019.4992"},{"issue":"2","key":"e_1_3_7_13_2","first-page":"891988723119521","article-title":"Caregiver burden in parkinson disease: a scoping review of the literature from 2017-2022","volume":"37","author":"Aamodt WW","year":"2023","unstructured":"Aamodt WW, Kluger BM, Mirham M, et al. Caregiver burden in parkinson disease: a scoping review of the literature from 2017-2022. J Geriatr Psychiatr Neurol. 2023;37(2):8919887231195219.","journal-title":"J Geriatr Psychiatr Neurol"},{"key":"e_1_3_7_14_2","doi-asserted-by":"publisher","DOI":"10.1177\/0891988717720302"},{"key":"e_1_3_7_15_2","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/20.6.649"},{"issue":"11","key":"e_1_3_7_16_2","first-page":"104990912312237","article-title":"Parkinson\u2019s disease carepartners\u2019 perceptions of the challenges and rewards of caregiving","volume":"41","author":"Seshadri S","year":"2024","unstructured":"Seshadri S, Contento A, Sugiura K, Abendroth M, Macchi Z, Kluger BM. Parkinson\u2019s disease carepartners\u2019 perceptions of the challenges and rewards of caregiving. 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