{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,27]],"date-time":"2026-02-27T04:19:21Z","timestamp":1772165961724,"version":"3.50.1"},"reference-count":50,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2020,5,25]],"date-time":"2020-05-25T00:00:00Z","timestamp":1590364800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,5,25]],"date-time":"2020-05-25T00:00:00Z","timestamp":1590364800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Foundation for Science and Technology \/ Minister of Education and Science","award":["PEst-C\/CED\/UI0194\/2013"],"award-info":[{"award-number":["PEst-C\/CED\/UI0194\/2013"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Palliat Care"],"published-print":{"date-parts":[[2020,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers\u2019 experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200933) and in-depth interviews (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200911). Thematic content analysis was used to analyse the data.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers\u2019 physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s12904-020-00583-4","type":"journal-article","created":{"date-parts":[[2020,5,25]],"date-time":"2020-05-25T16:03:13Z","timestamp":1590422593000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":23,"title":["Understanding family caregivers\u2019 needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal"],"prefix":"10.1186","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6077-3019","authenticated-orcid":false,"given":"Maria Jo\u00e3o Cardoso","family":"Teixeira","sequence":"first","affiliation":[]},{"given":"Wilson","family":"Abreu","sequence":"additional","affiliation":[]},{"given":"Nilza","family":"Costa","sequence":"additional","affiliation":[]},{"given":"Matthew","family":"Maddocks","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2020,5,25]]},"reference":[{"key":"583_CR1","first-page":"116","volume-title":"Non-communicable diseases. Migration and health in the European Union","author":"A Kunst","year":"2011","unstructured":"Kunst A, Stronks K, Agyemang C. Non-communicable diseases. Migration and health in the European Union, vol. 1; 2011. p. 116. Retrevied from http:\/\/www.euro.who.int\/__data\/assets\/pdf_file\/0019\/161560\/e96458.pdf."},{"key":"583_CR2","doi-asserted-by":"publisher","first-page":"2013","DOI":"10.1177\/0269216313493466","volume":"9","author":"S Smith","year":"2013","unstructured":"Smith S, Brick A, O\u2019Hara S, Normand C. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliat Med. 2013;9:2013. https:\/\/doi.org\/10.1177\/0269216313493466.","journal-title":"Palliat Med"},{"key":"583_CR3","volume-title":"Desenvolvimento dos Cuidados Paliativos em Portugal","author":"Associa\u00e7\u00e3o Portuguesa de Cuidados Paliativos","year":"2016","unstructured":"Associa\u00e7\u00e3o Portuguesa de Cuidados Paliativos. Desenvolvimento dos Cuidados Paliativos em Portugal. Lisboa: Associa\u00e7\u00e3o Portuguesa de Cuidados Paliativos; 2016."},{"issue":"1","key":"583_CR4","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1002\/14651858.CD007760.pub2","volume":"134","author":"B Gomes","year":"2016","unstructured":"Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Brito Md. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Sao Paulo Med J. 2016;134(1):93\u20134. https:\/\/doi.org\/10.1002\/14651858.CD007760.pub2.","journal-title":"Sao Paulo Med J"},{"issue":"4","key":"583_CR5","doi-asserted-by":"publisher","first-page":"363","DOI":"10.1177\/0269216315594974","volume":"30","author":"VP Sarmento","year":"2016","unstructured":"Sarmento VP, Higginson IJ, Ferreira PL, Gomes B. Past trends and projections of hospital deaths to inform the integration of palliative care in one of the most ageing countries in the world. Palliat Med. 2016;30(4):363\u201373. https:\/\/doi.org\/10.1177\/0269216315594974.","journal-title":"Palliat Med"},{"issue":"1","key":"583_CR6","doi-asserted-by":"publisher","first-page":"52","DOI":"10.1177\/0269216313493685","volume":"13","author":"M van der Eerden","year":"2014","unstructured":"van der Eerden M, Csikos A, Busa C, Hughes S, Radbruch L, Menten J, et al. Experiences of patients, family and professional caregivers with integrated palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study. BMC Palliat Care. 2014;13(1):52. https:\/\/doi.org\/10.1177\/0269216313493685.","journal-title":"BMC Palliat Care."},{"key":"583_CR7","volume-title":"Dementia: a public health priority","author":"World Health Organization","year":"2012","unstructured":"World Health Organization. Dementia: a public health priority. Geneva: World Health Organization; 2012."},{"issue":"3","key":"583_CR8","doi-asserted-by":"publisher","first-page":"197","DOI":"10.1177\/0269216313493685","volume":"28","author":"JT van der Steen","year":"2013","unstructured":"van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2013;28(3):197\u2013209. https:\/\/doi.org\/10.1177\/0269216313493685.","journal-title":"Palliat Med"},{"issue":"1","key":"583_CR9","doi-asserted-by":"publisher","first-page":"49","DOI":"10.1177\/0269216313489367","volume":"28","author":"FE Murtagh","year":"2013","unstructured":"Murtagh FE, Bausewein C, Verne J, Groeneveld EI, Kaloki YE, Higginson IJ. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2013;28(1):49\u201358. https:\/\/doi.org\/10.1177\/0269216313489367.","journal-title":"Palliat Med"},{"issue":"1","key":"583_CR10","doi-asserted-by":"publisher","first-page":"4","DOI":"10.1186\/s12904-016-0082-y","volume":"15","author":"K Krug","year":"2016","unstructured":"Krug K, Miksch A, Peters-Klimm F, Engeser P, Szecsenyi J. Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study. BMC Palliat Care. 2016;15(1):4. https:\/\/doi.org\/10.1186\/s12904-016-0082-y.","journal-title":"BMC Palliat Care."},{"issue":"6","key":"583_CR11","doi-asserted-by":"publisher","first-page":"573","DOI":"10.1177\/0269216310371412","volume":"24","author":"K Stajduhar","year":"2010","unstructured":"Stajduhar K, Funk L, Toye C, Grande G, Aoun S, Todd C. Part 1: home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliat Med. 2010;24(6):573\u201393. https:\/\/doi.org\/10.1177\/0269216310371412.","journal-title":"Palliat Med"},{"issue":"1","key":"583_CR12","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1186\/s12904-017-0206-z","volume":"16","author":"A Ullrich","year":"2017","unstructured":"Ullrich A, Ascherfeld L, Marx G, Bokemeyer C, Bergelt C, Oechsle K. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care. 2017;16(1):31. https:\/\/doi.org\/10.1186\/s12904-017-0206-z.","journal-title":"BMC Palliat Care"},{"issue":"7","key":"583_CR13","doi-asserted-by":"publisher","first-page":"864","DOI":"10.1089\/jpm.2010.0413","volume":"14","author":"P Hudson","year":"2011","unstructured":"Hudson P, Payne S. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med. 2011;14(7):864\u20139. https:\/\/doi.org\/10.1089\/jpm.2010.0413.","journal-title":"J Palliat Med"},{"issue":"4","key":"583_CR14","doi-asserted-by":"publisher","first-page":"413","DOI":"10.1089\/jpm.2009.0216","volume":"13","author":"R Fernandes","year":"2010","unstructured":"Fernandes R, Braun KL, Ozawa J, Compton M, Guzman C, Somogyi-Zalud E. Home-based palliative care services for underserved populations. J Palliat Med. 2010;13(4):413\u20139. https:\/\/doi.org\/10.1089\/jpm.2009.0216.","journal-title":"J Palliat Med"},{"issue":"1","key":"583_CR15","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s12904-015-0015-1","volume":"14","author":"M Holm","year":"2015","unstructured":"Holm M, Carlander I, F\u00fcrst C-J, Wengstr\u00f6m Y, \u00c5restedt K, \u00d6hlen J, et al. Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers. BMC Palliat Care. 2015;14(1):1. https:\/\/doi.org\/10.1186\/s12904-015-0015-1.","journal-title":"BMC Palliat Care."},{"issue":"4","key":"583_CR16","doi-asserted-by":"publisher","first-page":"467","DOI":"10.1177\/1074840712462065","volume":"18","author":"Carole A. Robinson","year":"2012","unstructured":"Robinson CA, Pesut B, Bottorff JL. Supporting rural family palliative caregivers. J Fam Nurs. 2012. https:\/\/doi.org\/10.1177\/1074840712462065.","journal-title":"Journal of Family Nursing"},{"issue":"3","key":"583_CR17","doi-asserted-by":"publisher","first-page":"370","DOI":"10.1016\/j.jpainsymman.2016.03.008","volume":"52","author":"K Woitha","year":"2016","unstructured":"Woitha K, Garralda E, Martin-Moreno JM, Clark D, Centeno C. Ranking of palliative care development in the countries of the European Union. J Pain Symptom Manag. 2016;52(3):370\u20137. https:\/\/doi.org\/10.1016\/j.jpainsymman.2016.03.008.","journal-title":"J Pain Symptom Manag"},{"key":"583_CR18","doi-asserted-by":"publisher","first-page":"255","DOI":"10.3389\/fmed.2017.00255","volume":"4","author":"MA Pego","year":"2018","unstructured":"Pego MA, Nunes C. Aging, disability, and informal caregivers: a cross-sectional study in Portugal. Frontiers in Med. 2018;4:255. https:\/\/doi.org\/10.3389\/fmed.2017.00255.","journal-title":"Frontiers in Med"},{"issue":"1","key":"583_CR19","doi-asserted-by":"publisher","first-page":"36","DOI":"10.1016\/j.ijmedinf.2014.09.004","volume":"84","author":"\u00c9 Maillet","year":"2015","unstructured":"Maillet \u00c9, Mathieu L, Sicotte C. Modeling factors explaining the acceptance, actual use and satisfaction of nurses using an electronic patient record in acute care settings: an extension of the UTAUT. Int J Med Inform. 2015;84(1):36\u201347. https:\/\/doi.org\/10.1016\/j.ijmedinf.2014.09.004.","journal-title":"Int J Med Inform"},{"key":"583_CR20","volume-title":"Participant observation","author":"JP Spradley","year":"1980","unstructured":"Spradley JP. Participant observation. Holt: Rinehart and Winston New York; 1980."},{"key":"583_CR21","volume-title":"International Classification for Nursing Practice (ICNP\u00ae): International Council of Nurses","author":"International Council of Nurses","year":"2013","unstructured":"International Council of Nurses. International Classification for Nursing Practice (ICNP\u00ae): International Council of Nurses; 2013 Retrieved from: http:\/\/www.icn.ch\/what-we-do\/ICNP-Browser\/."},{"issue":"2","key":"583_CR22","first-page":"59","volume":"25","author":"F Ara\u00fajo","year":"2007","unstructured":"Ara\u00fajo F, Ribeiro JLP, Oliveira A, Pinto C. Valida\u00e7\u00e3o do \u00cdndice de Barthel numa amostra de idosos n\u00e3o institucionalizados. Revista Portuguesa de Sa\u00fade P\u00fablica. 2007;25(2):59\u201366.","journal-title":"Revista Portuguesa de Sa\u00fade P\u00fablica"},{"key":"583_CR23","volume-title":"Triangulation: Establishing the validity of qualitative studies","author":"LA Guion","year":"2011","unstructured":"Guion LA, Diehl DC, McDonald D. Triangulation: Establishing the validity of qualitative studies. Gainsville: University of Florida Extension, Institute of Food and Agricultural Sciences; 2011."},{"issue":"2","key":"583_CR24","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","volume":"3","author":"V Braun","year":"2006","unstructured":"Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77\u2013101.","journal-title":"Qual Res Psychol"},{"issue":"5","key":"583_CR25","doi-asserted-by":"publisher","first-page":"378","DOI":"10.1016\/j.math.2012.03.004","volume":"17","author":"NJ Petty","year":"2012","unstructured":"Petty NJ, Thomson OP, Stew G. Ready for a paradigm shift? Part 2: introducing qualitative research methodologies and methods. Man Ther. 2012;17(5):378\u201384. https:\/\/doi.org\/10.1016\/j.math.2012.03.004.","journal-title":"Man Ther"},{"key":"583_CR26","volume-title":"The discovery of grounded theory: strategies for qualitative research","author":"B Glaser","year":"1999","unstructured":"Glaser B, Strauss A. The discovery of grounded theory: strategies for qualitative research. Aldine Transaction: Rutgers; 1999."},{"key":"583_CR27","first-page":"49","volume-title":"An\u00e1lise de Dados Qualitativos Suportada pelo Software WebQDA. Atas da VII Confer\u00eancia Intenacional de TIC na Educa\u00e7\u00e3o: Perpetivas de Inova\u00e7\u00e3o","author":"FN Souza","year":"2011","unstructured":"Souza FN, Costa AP, Moreira A. An\u00e1lise de Dados Qualitativos Suportada pelo Software WebQDA. Atas da VII Confer\u00eancia Intenacional de TIC na Educa\u00e7\u00e3o: Perpetivas de Inova\u00e7\u00e3o; 2011. p. 49\u201356. Retrieved from https:\/\/www.webqda.net\/wp-content\/uploads\/2016\/05\/AnaliseDadosQualitativos.pdf."},{"issue":"1","key":"583_CR28","doi-asserted-by":"publisher","first-page":"59","DOI":"10.1177\/1525822x05279903","volume":"18","author":"G Guest","year":"2006","unstructured":"Guest G, Bunce A, Johnson L. How many interviews are enough?: an experiment with data saturation and variability. Field Methods. 2006;18(1):59\u201382. https:\/\/doi.org\/10.1177\/1525822x05279903.","journal-title":"Field Methods"},{"issue":"4","key":"583_CR29","doi-asserted-by":"publisher","first-page":"253","DOI":"10.1016\/j.jcf.2011.03.002","volume":"10","author":"M Braithwaite","year":"2011","unstructured":"Braithwaite M, Philip J, Tranberg H, Finlayson F, Gold M, Kotsimbos T, et al. End of life care in CF: patients, families and staff experiences and unmet needs. J Cyst Fibros. 2011;10(4):253\u20137. https:\/\/doi.org\/10.1016\/j.jcf.2011.03.002.","journal-title":"J Cyst Fibros"},{"issue":"1","key":"583_CR30","doi-asserted-by":"publisher","first-page":"59","DOI":"10.1111\/j.1365-2648.2004.03299.x","volume":"31","author":"DK Pab\u00f3n Poches","year":"2014","unstructured":"Pab\u00f3n Poches DK, Galvis Aparicio MJ, Cerquera C\u00f3rdoba AM. Diferencias en el apoyo social percibido entre cuidadores informales y formales de pacientes con demencia tipo Alzheimer. Differences in perceived social support between family and formal caregivers of Alzheimer's disease patients. Psicolog\u00eda desde el Caribe. 2014;31(1):59\u201378. https:\/\/doi.org\/10.1111\/j.1365-2648.2004.03299.x.","journal-title":"Psicolog\u00eda desde el Caribe"},{"issue":"7","key":"583_CR31","doi-asserted-by":"publisher","first-page":"657","DOI":"10.1177\/0269216313487765","volume":"27","author":"KI Stajduhar","year":"2013","unstructured":"Stajduhar KI, Funk L, Outcalt L. Family caregiver learning\u2014how family caregivers learn to provide care at the end of life:\u2009a qualitative secondary analysis of four datasets. Palliat Med. 2013;27(7):657\u201364. https:\/\/doi.org\/10.1177\/0269216313487765.","journal-title":"Palliat Med"},{"issue":"18","key":"583_CR32","doi-asserted-by":"publisher","first-page":"2497","DOI":"10.1111\/j.1365-2702.2008.02450.x","volume":"17","author":"Y-IL Shyu","year":"2008","unstructured":"Shyu Y-IL, Chen M-C, Chen S-T, Wang H-P, Shao J-H. A family caregiver-oriented discharge planning program for older stroke patients and their family caregivers. J Clin Nurs. 2008;17(18):2497\u2013508. https:\/\/doi.org\/10.1111\/j.1365-2702.2008.02450.x.","journal-title":"J Clin Nurs"},{"issue":"1","key":"583_CR33","doi-asserted-by":"publisher","first-page":"96","DOI":"10.1186\/s12904-018-0346-9","volume":"17","author":"T Wang","year":"2018","unstructured":"Wang T, Molassiotis A, Chung BPM, Tan J-Y. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care. 2018;17(1):96. https:\/\/doi.org\/10.1186\/s12904-018-0346-9.","journal-title":"BMC Palliat Care."},{"issue":"5","key":"583_CR34","doi-asserted-by":"publisher","first-page":"657","DOI":"10.1016\/j.ijnurstu.2012.10.013","volume":"50","author":"C Su-Hsien","year":"2013","unstructured":"Su-Hsien C, Ching-Len Y. Perspective of family caregivers on self-care independence among older people living in long-term care facilities: a qualitative study. Int J Nurs Stud. 2013;50(5):657\u201363. https:\/\/doi.org\/10.1016\/j.ijnurstu.2012.10.013.","journal-title":"Int J Nurs Stud"},{"issue":"9","key":"583_CR35","doi-asserted-by":"publisher","first-page":"1128","DOI":"10.1177\/0269216314532154","volume":"28","author":"I Vedel","year":"2014","unstructured":"Vedel I, Ghadi V, Lapointe L, Routelous C, Aegerter P, Guirimand F. Patients\u2019, family caregivers\u2019, and professionals\u2019 perspectives on quality of palliative care: a qualitative study. Palliat Med. 2014;28(9):1128\u201338. https:\/\/doi.org\/10.1177\/0269216314532154.","journal-title":"Palliat Med"},{"issue":"9","key":"583_CR36","doi-asserted-by":"publisher","first-page":"807","DOI":"10.1177\/0269216316637239","volume":"30","author":"E Lewis","year":"2016","unstructured":"Lewis E, Cardona-Morrell M, Ong KY, Trankle SA, Hillman K. Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: a systematic review. Palliat Med. 2016;30(9):807\u201324. https:\/\/doi.org\/10.1177\/0269216316637239.","journal-title":"Palliat Med"},{"issue":"5","key":"583_CR37","doi-asserted-by":"publisher","first-page":"730","DOI":"10.1590\/S0034-71672012000500003","volume":"65","author":"LC Pedreira","year":"2012","unstructured":"Pedreira LC, Oliveira AMS. Caregivers of dependent elderly at home: changes in family relationships. Rev Bras Enferm. 2012;65(5):730\u20136. https:\/\/doi.org\/10.1590\/S0034-71672012000500003.","journal-title":"Rev Bras Enferm"},{"issue":"1","key":"583_CR38","doi-asserted-by":"publisher","first-page":"7","DOI":"10.1177\/0269216311409613","volume":"26","author":"R Harding","year":"2012","unstructured":"Harding R, List S, Epiphaniou E, Jones H. How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliat Med. 2012;26(1):7\u201322. https:\/\/doi.org\/10.1177\/0269216311409613.","journal-title":"Palliat Med"},{"issue":"3","key":"583_CR39","doi-asserted-by":"publisher","first-page":"304","DOI":"10.1007\/s00455-010-9312-2","volume":"26","author":"SB Leder","year":"2011","unstructured":"Leder SB, Suiter DM, Green BG. Silent Aspiration Risk is Volume-dependent. Dysphagia. 2011;26(3):304\u20139. https:\/\/doi.org\/10.1007\/s00455-010-9312-2.","journal-title":"Dysphagia."},{"issue":"2","key":"583_CR40","doi-asserted-by":"publisher","first-page":"220","DOI":"10.1080\/13607860903167861","volume":"14","author":"SH Zarit","year":"2010","unstructured":"Zarit SH, Femia EE, Kim K, Whitlatch CJ. The structure of risk factors and outcomes for family caregivers: implications for assessment and treatment. Aging Ment Health. 2010;14(2):220\u201331. https:\/\/doi.org\/10.1080\/13607860903167861.","journal-title":"Aging Ment Health"},{"issue":"4","key":"583_CR41","doi-asserted-by":"publisher","first-page":"423","DOI":"10.1177\/1074840717735287","volume":"23","author":"JA Deatrick","year":"2017","unstructured":"Deatrick JA. Where is \u201cfamily\u201d in the social determinants of health? Implications for family nursing practice, research, education, and policy. J Fam Nurs. 2017;23(4):423\u201333. https:\/\/doi.org\/10.1177\/1074840717735287.","journal-title":"J Fam Nurs"},{"issue":"6","key":"583_CR42","doi-asserted-by":"publisher","first-page":"594","DOI":"10.1177\/0269216310371411","volume":"24","author":"L Funk","year":"2010","unstructured":"Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ. Part 2: home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008). Palliat Med. 2010;24(6):594\u2013607. https:\/\/doi.org\/10.1177\/0269216310371411.","journal-title":"Palliat Med"},{"issue":"1","key":"583_CR43","doi-asserted-by":"publisher","first-page":"12","DOI":"10.1002\/pon.2050","volume":"22","author":"D Turner","year":"2013","unstructured":"Turner D, Adams E, Boulton M, Harrison S, Khan N, Rose P, et al. Partners and close family members of long-term cancer survivors: health status, psychosocial well-being and unmet supportive care needs. Psycho-Oncology. 2013;22(1):12\u20139. https:\/\/doi.org\/10.1002\/pon.2050.","journal-title":"Psycho-Oncology."},{"issue":"9","key":"583_CR44","doi-asserted-by":"publisher","first-page":"1008","DOI":"10.1089\/jpm.2013.9483","volume":"16","author":"R Schulz","year":"2013","unstructured":"Schulz R. Research priorities in geriatric palliative care: informal caregiving. J Palliat Med. 2013;16(9):1008\u201312. https:\/\/doi.org\/10.1089\/jpm.2013.9483.","journal-title":"J Palliat Med"},{"issue":"1","key":"583_CR45","doi-asserted-by":"publisher","first-page":"126","DOI":"10.1111\/j.1532-5415.2010.03209.x","volume":"59","author":"SS Sharkey","year":"2011","unstructured":"Sharkey SS, Hudak S, Horn SD, James B, Howes J. Frontline caregiver daily practices: a comparison study of traditional nursing homes and the Green house project sites. J Am Geriatr Soc. 2011;59(1):126\u201331. https:\/\/doi.org\/10.1111\/j.1532-5415.2010.03209.x.","journal-title":"J Am Geriatr Soc"},{"issue":"1","key":"583_CR46","doi-asserted-by":"publisher","first-page":"2312","DOI":"10.1111\/jan.13727","volume":"74","author":"E Timonet-Andreu","year":"2018","unstructured":"Timonet-Andreu E, Canca-Sanchez JC, Sepulveda-Sanchez J, Ortiz-Tom\u00e9 C, Rivas-Ruiz F, Toribio-Toribio JC, et al. Overestimation of hours dedicated to family caregiving of persons with heart failure. J Adv Nurs. 2018;74(1):2312\u201321. https:\/\/doi.org\/10.1111\/jan.13727.","journal-title":"J Adv Nurs"},{"issue":"3","key":"583_CR47","doi-asserted-by":"publisher","first-page":"307","DOI":"10.1177\/1074840717716986","volume":"23","author":"SR Stones","year":"2017","unstructured":"Stones SR. Making the dream a reality: the evolving landscape of family-focused research inspired by empowered patients and their families. J Fam Nurs. 2017;23(3):307\u201318. https:\/\/doi.org\/10.1177\/1074840717716986.","journal-title":"J Fam Nurs"},{"issue":"4","key":"583_CR48","doi-asserted-by":"publisher","first-page":"759","DOI":"10.1111\/jan.12865","volume":"72","author":"L Forbat","year":"2016","unstructured":"Forbat L, Hubbard G. Service user involvement in research may lead to contrary rather than collaborative accounts: findings from a qualitative palliative care study. J Adv Nurs. 2016;72(4):759\u201369. https:\/\/doi.org\/10.1111\/jan.12865.","journal-title":"J Adv Nurs"},{"key":"583_CR49","volume-title":"Guest editorial: revisiting Feetham\u2019s criteria for research of families to advance science and inform policy for the health and well-being of families","author":"S Feetham","year":"2018","unstructured":"Feetham S. Guest editorial: revisiting Feetham\u2019s criteria for research of families to advance science and inform policy for the health and well-being of families. Los Angeles: SAGE Publications Sage CA; 2018."},{"issue":"5","key":"583_CR50","doi-asserted-by":"publisher","first-page":"561","DOI":"10.1177\/0969733014549881","volume":"22","author":"E-S Korhonen","year":"2015","unstructured":"Korhonen E-S, Nordman T, Eriksson K. Technology and its ethics in nursing and caring journals: An integrative literature review. Nurs Ethics. 2015;22(5):561\u201376. https:\/\/doi.org\/10.1177\/0969733014549881.","journal-title":"Nurs Ethics"}],"container-title":["BMC Palliative Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-020-00583-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12904-020-00583-4\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-020-00583-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,5,24]],"date-time":"2021-05-24T19:09:42Z","timestamp":1621883382000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcpalliatcare.biomedcentral.com\/articles\/10.1186\/s12904-020-00583-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,5,25]]},"references-count":50,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2020,12]]}},"alternative-id":["583"],"URL":"https:\/\/doi.org\/10.1186\/s12904-020-00583-4","relation":{"has-preprint":[{"id-type":"doi","id":"10.21203\/rs.2.10574\/v5","asserted-by":"object"},{"id-type":"doi","id":"10.21203\/rs.2.10574\/v3","asserted-by":"object"},{"id-type":"doi","id":"10.21203\/rs.2.10574\/v4","asserted-by":"object"},{"id-type":"doi","id":"10.21203\/rs.2.10574\/v1","asserted-by":"object"},{"id-type":"doi","id":"10.21203\/rs.2.10574\/v2","asserted-by":"object"}]},"ISSN":["1472-684X"],"issn-type":[{"value":"1472-684X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,5,25]]},"assertion":[{"value":"5 June 2019","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"20 May 2020","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 May 2020","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"This study was submitted to the Ethics Committee for Health Northern Regional Health Administration affiliated to the Minister of Health and approval was obtained (T 82 Approval number). Participants were informed that participation was voluntary, with the right to withdraw from the study at any time without losing benefits or professional support. Written consent was obtained from all participants. Family caregivers who consented to the observations were also invited to complete interview(s). All participants were provided with contact information for the researchers. To maintain total privacy and confidentiality for participants all personal information was deleted before transcription and representation of the data.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Consent for publication of the (anonymized) collected data was obtained by means of written and\/ or oral consent.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"73"}}