{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,6]],"date-time":"2026-05-06T14:58:35Z","timestamp":1778079515949,"version":"3.51.4"},"reference-count":56,"publisher":"Public Library of Science (PLoS)","issue":"6","license":[{"start":{"date-parts":[[2024,6,27]],"date-time":"2024-06-27T00:00:00Z","timestamp":1719446400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001659","name":"Deutsche Forschungsgemeinschaft","doi-asserted-by":"crossref","award":["528683214"],"award-info":[{"award-number":["528683214"]}],"id":[{"id":"10.13039\/501100001659","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\">\n<jats:title>Background<\/jats:title>\n<jats:p>The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec002\">\n<jats:title>Aims<\/jats:title>\n<jats:p>The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec003\">\n<jats:title>Methods<\/jats:title>\n<jats:p>In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec004\">\n<jats:title>Discussion<\/jats:title>\n<jats:p>This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec005\">\n<jats:title>Trial registration<\/jats:title>\n<jats:p>The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N\u00b0 <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/DRKS00033889\" xlink:type=\"simple\">DRKS00033889<\/jats:ext-link>; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0306282","type":"journal-article","created":{"date-parts":[[2024,6,27]],"date-time":"2024-06-27T18:33:20Z","timestamp":1719513200000},"page":"e0306282","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":3,"title":["Non-kin caregivers of terminally ill people: Contributions, experiences, and needs: A protocol for a mixed-methods study"],"prefix":"10.1371","volume":"19","author":[{"given":"Maria","family":"Heckel","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2602-9277","authenticated-orcid":true,"given":"Franziska A.","family":"Herbst","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2024,6,27]]},"reference":[{"key":"pone.0306282.ref001","doi-asserted-by":"crossref","first-page":"422","DOI":"10.1177\/02692163211067363","article-title":"Area-Based Compassionate Communities: A systematic integrative review of existing initiatives worldwide.","volume":"36","author":"B Quintiens","year":"2022","journal-title":"Palliat Med."},{"key":"pone.0306282.ref002","first-page":"026921632210778","article-title":"u. a. Civic engagement in serious illness, death, and loss: A systematic mixed-methods review.","author":"L D\u2019Eer","year":"2022","journal-title":"Palliat Med."},{"key":"pone.0306282.ref003","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1080\/14461242.2014.999400","article-title":"Informal caring networks for people at end of life: building social capital in Australian communities.","volume":"24","author":"JP Rosenberg","year":"2015","journal-title":"Health Sociol Rev"},{"key":"pone.0306282.ref004","doi-asserted-by":"crossref","first-page":"235","DOI":"10.1017\/S1478951509000303","article-title":"Palliative care: a need for a family systems approach.","volume":"7","author":"A Mehta","year":"2009","journal-title":"Palliat Support Care"},{"key":"pone.0306282.ref005","doi-asserted-by":"crossref","first-page":"763","DOI":"10.1007\/s00520-018-4568-4","article-title":"u. a. The new challenge for improving psychosocial cancer care: shifting to a system-based approach","volume":"27","author":"R Sanson-Fisher","year":"2019","journal-title":"Support Care Cancer"},{"key":"pone.0306282.ref006","doi-asserted-by":"crossref","first-page":"608","DOI":"10.1177\/0269216313483664","article-title":"Uncovering an invisible network of direct caregivers at the end of life: a population study.","volume":"27","author":"CM Burns","year":"2013","journal-title":"Palliat Med."},{"key":"pone.0306282.ref007","article-title":"Haushalte und Familien.","author":"Statistisches Bundesamt (Destatis).","year":"2022","journal-title":"Alleinstehende, darunter Alleinlebende ab den Jahren 1996"},{"key":"pone.0306282.ref008","volume-title":"Haushalte und Familien. Ergebnisse des Mikrozensus. Ergebnisse 2021.","author":"Statistisches Bundesamt (Destatis).","year":"2022"},{"key":"pone.0306282.ref009","doi-asserted-by":"crossref","first-page":"11","DOI":"10.3390\/healthcare10010011","article-title":"The Caregiver Support Ratio in Europe: Estimating the Future of Potentially (Un)Available Caregivers.","volume":"10","author":"O Ribeiro","year":"2021","journal-title":"Healthcare."},{"key":"pone.0306282.ref010","doi-asserted-by":"crossref","first-page":"1097","DOI":"10.1089\/jpm.2011.0136","article-title":"Preference for Place of Death in Germany.","volume":"14","author":"LC Escobar Pinzon","year":"2011","journal-title":"J Palliat Med."},{"key":"pone.0306282.ref011","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1177\/0269216306073198","article-title":"Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs.","volume":"21","author":"S Aoun","year":"2007","journal-title":"Palliat Med"},{"key":"pone.0306282.ref012","first-page":"238","article-title":"White paper on improving support for family carers in palliative care: part 1.","volume":"17","author":"S Payne","year":"2010","journal-title":"Eur J Palliat Care"},{"key":"pone.0306282.ref013","doi-asserted-by":"crossref","first-page":"203","DOI":"10.1002\/pon.1725","article-title":"What is the role of friends when contributing care at the end of life? Findings from an Australian population study: Friends and caregiving at end of life","volume":"20","author":"CM Burns","year":"2011","journal-title":"Psychooncology."},{"key":"pone.0306282.ref014","author":"Statistika","year":"2020","journal-title":"Dossier Pflege in Deutschland"},{"key":"pone.0306282.ref015","doi-asserted-by":"crossref","first-page":"559","DOI":"10.1177\/0269216316666785","article-title":"From neighbour to carer: An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone.","volume":"31","author":"S Pleschberger","year":"2017","journal-title":"Palliat Med"},{"key":"pone.0306282.ref016","first-page":"14","article-title":"Fachstellen f\u00fcr pflegende Angeh\u00f6rige","volume":"2","author":"Brigitte Teigeler","year":"2022","journal-title":"Mit Rat und Tat f\u00fcr Angeh\u00f6rige da. 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Comparison of Estimates of Their Prevalence from Three European Surveys.","volume":"17","author":"A Tur-Sinai","year":"2020","journal-title":"Int J Environ Res Public Health"},{"key":"pone.0306282.ref021","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1007\/s10433-008-0103-7","article-title":"Socio-demographic determinants of informal caregiving: co-resident versus extra-resident care.","volume":"6","author":"B. De Koker","year":"2009","journal-title":"Eur J Ageing"},{"key":"pone.0306282.ref022","article-title":"Informelle Unterst\u00fctzung au\u00dferhalb des Engagements: Instrumentelle Hilfen, Kinderbetreuung und Pflege im sozialen Nahraum. In: Simonson J, Vogel C, Tesch-R\u00f6mer C, Herausgeber. Freiwilliges Engagem Dtschl","author":"C Vogel","year":"2017","journal-title":"Wiesbaden: Springer Fachmedien Wiesbaden"},{"key":"pone.0306282.ref023","article-title":"u. a. Family carer needs in advanced disease: systematic review of reviews","author":"DJ-T Marco","year":"2021","journal-title":"BMJ Support Palliat Care"},{"key":"pone.0306282.ref024","doi-asserted-by":"crossref","first-page":"420","DOI":"10.1007\/s00761-022-01131-w","article-title":"Deutschsprachige Instrumente zur Bedarfserhebung bei Angeh\u00f6rigen: Eine narrative \u00dcbersicht \u00fcber verf\u00fcgbare Selbsteinsch\u00e4tzungsinstrumente zur Erfassung verschiedener Aspekte m\u00f6glicher Angeh\u00f6rigenbedarfe.","volume":"28","author":"N Oubaid","year":"2022","journal-title":"Onkol"},{"key":"pone.0306282.ref025","author":"Koch-Institut Robert","year":"2016","journal-title":"Pflegende Angeh\u00f6rige\u2013Deutschlands gr\u00f6\u00dfter Pflegedienst"},{"key":"pone.0306282.ref026","first-page":"255","article-title":"Professionalism and Human Rights Committee","volume":"25","author":"for the American College of Physicians Ethics","year":"2010","journal-title":"Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships. J Gen Intern Med"},{"key":"pone.0306282.ref027","doi-asserted-by":"crossref","first-page":"926","DOI":"10.1200\/JCO.19.00018","article-title":"Palliative Care for Family Caregivers.","volume":"38","author":"S Alam","year":"2020","journal-title":"J Clin Oncol."},{"key":"pone.0306282.ref028","doi-asserted-by":"crossref","first-page":"238","DOI":"10.1097\/SPC.0000000000000438","article-title":"Caring for the informal cancer caregiver","volume":"13","author":"V Sun","year":"2019","journal-title":"Curr Opin Support Palliat Care"},{"key":"pone.0306282.ref029","first-page":"7","article-title":"Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care-An Overview of Current Literature.","author":"K. Oechsle","year":"2019","journal-title":"Med Sci Basel"},{"key":"pone.0306282.ref030","doi-asserted-by":"crossref","first-page":"56","DOI":"10.1089\/jpm.2013.0333","article-title":"Hidden patients: the relatives of patients in need of palliative care.","volume":"17","author":"G Foreva","year":"2014","journal-title":"J Palliat Med"},{"key":"pone.0306282.ref031","doi-asserted-by":"crossref","first-page":"327","DOI":"10.1177\/1471301210375316","article-title":"Development of a conceptual framework of positive aspects of caregiving in dementia","volume":"9","author":"H Carbonneau","year":"2010","journal-title":"Dementia"},{"key":"pone.0306282.ref032","doi-asserted-by":"crossref","first-page":"S158","DOI":"10.1093\/geronb\/57.3.S158","article-title":"Neighbors, friends, and other nonkin caregivers of community-living dependent elders","volume":"57","author":"JC Barker","year":"2002","journal-title":"J Gerontol B Psychol Sci Soc Sci"},{"key":"pone.0306282.ref033","doi-asserted-by":"crossref","first-page":"1442","DOI":"10.1017\/S0144686X12000736","article-title":"Characteristics and contributions of non-kin carers of older people: a closer look at friends and neighbours.","volume":"33","author":"TA Lapierre","year":"2013","journal-title":"Ageing Soc."},{"key":"pone.0306282.ref034","volume-title":"Research Design: Qualitative, Quantitative and Mixed Methods Approaches","author":"JM Creswell","year":"2017","edition":"5"},{"key":"pone.0306282.ref035","volume-title":"The discovery of grounded theory: Strategies for qualitative research","author":"B Glaser","year":"1967"},{"key":"pone.0306282.ref036","volume-title":"Grounded theory in practice.","author":"A Strauss","year":"1997"},{"key":"pone.0306282.ref037","doi-asserted-by":"crossref","first-page":"229","DOI":"10.1186\/s12913-018-3047-4","article-title":"Screening for caregivers at risk: Extended validation of the short version of the Burden Scale for Family Caregivers (BSFC-s) with a valid classification system for caregivers caring for an older person at home.","volume":"18","author":"A Pendergrass","year":"2018","journal-title":"BMC Health Serv Res"},{"key":"pone.0306282.ref038","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1186\/1471-2318-14-23","article-title":"Subjective caregiver burden: validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s.","volume":"14","author":"E Graessel","year":"2014","journal-title":"BMC Geriatr"},{"key":"pone.0306282.ref039","doi-asserted-by":"crossref","first-page":"1533","DOI":"10.1080\/13607863.2018.1501662","article-title":"Predictors of the personal benefits and positive aspects of informal caregiving.","volume":"23","author":"A Pendergrass","year":"2019","journal-title":"Aging Ment Health."},{"key":"pone.0306282.ref040","doi-asserted-by":"crossref","first-page":"109","DOI":"10.1891\/1061-3749.3.2.109","article-title":"Validity and reliability of the family inventory of needs (FIN): measuring the care needs of families of advanced cancer patients.","volume":"3","author":"LJ Kristjanson","year":"1995","journal-title":"J Nurs Meas"},{"key":"pone.0306282.ref041","doi-asserted-by":"crossref","first-page":"485","DOI":"10.1017\/S1478951514000261","article-title":"u. a. Validation of the Family Inventory of Needs (FIN) for family caregivers in palliative care","volume":"13","author":"S Schur","year":"2015","journal-title":"Palliat Support Care."},{"key":"pone.0306282.ref042","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1186\/s40359-016-0111-x","article-title":"Psychometric properties of the Positive Mental Health Scale (PMH-scale).","volume":"4","author":"J Lukat","year":"2016","journal-title":"BMC Psychol"},{"key":"pone.0306282.ref043","doi-asserted-by":"crossref","first-page":"267","DOI":"10.1027\/1016-9040\/a000055","article-title":"Principles of Relationship Differentiation.","volume":"16","author":"FJ Neyer","year":"2011","journal-title":"Eur Psychol"},{"key":"pone.0306282.ref044","author":"EUROFAMCARE","year":"2022","journal-title":"Common Assessment Tool\u2014CAT"},{"key":"pone.0306282.ref045","doi-asserted-by":"crossref","first-page":"311","DOI":"10.1186\/s12955-020-01473-2","article-title":"u. a. Assessment of the quality of end-of-life care: translation and validation of the German version of the \u201eCare of the Dying Evaluation\u201d(CODE-GER)\u2014a questionnaire for bereaved relatives.","volume":"18","author":"A Vogt","year":"2020","journal-title":"Health Qual Life Outcomes. 2020\/09\/24 Aufl"},{"key":"pone.0306282.ref046","doi-asserted-by":"crossref","first-page":"402","DOI":"10.1016\/j.jpainsymman.2015.03.020","article-title":"Validation of the German Version of the Quality of Dying and Death Questionnaire for Informal Caregivers (QODD-D-Ang).","volume":"50","author":"M Heckel","year":"2015","journal-title":"J Pain Symptom Manage"},{"key":"pone.0306282.ref047","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1186\/s12877-022-03650-y","article-title":"Validation of the Benefits of Being a Caregiver Scale (BBCS)\u2013further development of an independent characteristic of informal caregiving.","volume":"23","author":"A Pendergrass","year":"2023","journal-title":"BMC Geriatr"},{"key":"pone.0306282.ref048","doi-asserted-by":"crossref","first-page":"59","DOI":"10.1177\/1525822X05279903","article-title":"How Many Interviews Are Enough?: An Experiment with Data Saturation and Variability.","volume":"18","author":"G Guest","year":"2006","journal-title":"Field Methods."},{"key":"pone.0306282.ref049","doi-asserted-by":"crossref","first-page":"1753","DOI":"10.1177\/1049732315617444","article-title":"Sample Size in Qualitative Interview Studies: Guided by Information Power.","volume":"26","author":"K Malterud","year":"2016","journal-title":"Qual Health Res."},{"key":"pone.0306282.ref050","doi-asserted-by":"crossref","first-page":"2134","DOI":"10.1111\/1475-6773.12117","article-title":"Achieving Integration in Mixed Methods Designs-Principles and Practices.","volume":"48","author":"MD Fetters","year":"2013","journal-title":"Health Serv Res."},{"key":"pone.0306282.ref051","first-page":"026921632211361","article-title":"u. a. Strategies and checklist for designing and conducting palliative care research with family carers: EAPC international expert elicitation study","author":"P Hudson","year":"2022","journal-title":"Palliat Med."},{"key":"pone.0306282.ref052","doi-asserted-by":"crossref","first-page":"j3453","DOI":"10.1136\/bmj.j3453","article-title":"u. a. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research","volume":"358","author":"S Staniszewska","year":"2017","journal-title":"BMJ"},{"key":"pone.0306282.ref053","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.","volume":"19","author":"A Tong","year":"2007","journal-title":"Int J Qual Health Care"},{"key":"pone.0306282.ref054","doi-asserted-by":"crossref","first-page":"e34","DOI":"10.2196\/jmir.6.3.e34","article-title":"Improving the quality of Web surveys: the Checklist for Reporting Results of Internet E-Surveys (CHERRIES)","volume":"6","author":"G. Eysenbach","year":"2004","journal-title":"J Med Internet Res."},{"key":"pone.0306282.ref055","doi-asserted-by":"crossref","first-page":"83","DOI":"10.1186\/s12904-019-0470-1","article-title":"How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument.","volume":"18","author":"M Torensma","year":"2019","journal-title":"BMC Palliat Care."},{"key":"pone.0306282.ref056","unstructured":"Deutsche Forschungsgemeinschaft (DFG). Code of Conduct \u201eGuidelines for Safeguarding Good Research Practice\u201d[Internet]. 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