{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T11:32:25Z","timestamp":1788780745769,"version":"build-2803163510"},"reference-count":43,"publisher":"MDPI AG","issue":"5","license":[{"start":{"date-parts":[[2021,10,16]],"date-time":"2021-10-16T00:00:00Z","timestamp":1634342400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"BC SUPPORT Unit, Patient Centred Measurement Cluster","award":["PMC-006"],"award-info":[{"award-number":["PMC-006"]}]},{"DOI":"10.13039\/501100000245","name":"Michael Smith Foundation for Health Research","doi-asserted-by":"publisher","award":["SCH-2020-0622"],"award-info":[{"award-number":["SCH-2020-0622"]}],"id":[{"id":"10.13039\/501100000245","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Current Oncology"],"abstract":"<jats:p>Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers\u2019 assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient\u2019s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.<\/jats:p>","DOI":"10.3390\/curroncol28050355","type":"journal-article","created":{"date-parts":[[2021,10,17]],"date-time":"2021-10-17T23:13:32Z","timestamp":1634512412000},"page":"4184-4202","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":21,"title":["At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer"],"prefix":"10.3390","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5704-1733","authenticated-orcid":false,"given":"A. 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(2013). A Systematic Review of the Impact of Routine Collection of Patient Reported Outcome Measures on Patients, Providers and Health Organisations in an Oncologic Setting. BMC Health Serv. Res., 13.","DOI":"10.1186\/1472-6963-13-211"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"1846","DOI":"10.1093\/annonc\/mdv181","article-title":"Patient-Reported Outcomes in Routine Cancer Clinical Practice: A Scoping Review of Use, Impact on Health Outcomes, and Implementation Factors","volume":"26","author":"Howell","year":"2015","journal-title":"Ann. Oncol."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"1480","DOI":"10.1200\/JCO.2013.53.5948","article-title":"What Is the Value of the Routine Use of Patient-Reported Outcome Measures toward Improvement of Patient Outcomes, Processes of Care, and Health Service Outcomes in Cancer Care? A Systematic Review of Controlled Trials","volume":"32","author":"Kotronoulas","year":"2014","journal-title":"J. Clin. Oncol."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"559","DOI":"10.1111\/j.1365-2753.2006.00650.x","article-title":"Impact of Patient-reported Outcome Measures on Routine Practice: A Structured Review","volume":"12","author":"Marshall","year":"2006","journal-title":"J. Eval. Clin. Pract."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"41","DOI":"10.1007\/s00520-017-3865-7","article-title":"Patient-Reported Outcome Use in Oncology: A Systematic Review of the Impact on Patient-Clinician Communication","volume":"26","author":"Yang","year":"2018","journal-title":"Support. Care Cancer"},{"key":"ref_7","first-page":"38","article-title":"Choosing Your Partner for the PROM: A Review of Evidence on Patient-Reported Outcome Measures for Use in Primary and Community Care","volume":"10","author":"Bryan","year":"2014","journal-title":"Health. Policy"},{"key":"ref_8","unstructured":"(2020, August 12). WHO Palliative Care. Available online: https:\/\/www.who.int\/cancer\/palliative\/definition\/en\/."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"1859","DOI":"10.1007\/s11136-016-1239-0","article-title":"Patient-Reported Outcome Measures for Cancer Caregivers: A Systematic Review","volume":"25","author":"Shilling","year":"2016","journal-title":"Qual. Life Res."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"1795","DOI":"10.1503\/cmaj.1031205","article-title":"Family Caregiver Burden: Results of a Longitudinal Study of Breast Cancer Patients and Their Principal Caregivers","volume":"170","author":"Grunfeld","year":"2004","journal-title":"CMAJ"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1016\/j.soncn.2005.10.006","article-title":"Family Care for the Older Person With Cancer","volume":"22","author":"Given","year":"2006","journal-title":"Semin. Oncol. Nurs."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"260","DOI":"10.1093\/geront\/26.3.260","article-title":"Subjective Burden of Husbands and Wives as Caregivers: A Longitudinal Study","volume":"26","author":"Zarit","year":"1986","journal-title":"Gerontologist"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"286","DOI":"10.1188\/18.CJON.286-294","article-title":"Family Caregivers","volume":"22","author":"Ferrell","year":"2018","journal-title":"Clin. J. Oncol. Nurs."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"2215","DOI":"10.1001\/jama.282.23.2215","article-title":"Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study","volume":"282","author":"Schulz","year":"1999","journal-title":"JAMA"},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"1052","DOI":"10.1001\/jama.2014.304","article-title":"Caregiver Burden: A Clinical Review","volume":"311","author":"Adelman","year":"2014","journal-title":"JAMA"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"231","DOI":"10.1017\/S1478951512000594","article-title":"Care for the Cancer Caregiver: A Systematic Review","volume":"11","author":"Applebaum","year":"2013","journal-title":"Palliat. Support. Care"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"197","DOI":"10.1200\/JOP.2012.000690","article-title":"Physical, Psychosocial, Relationship, and Economic Burden of Caring for People with Cancer: A Review","volume":"9","author":"Girgis","year":"2012","journal-title":"J. Oncol. Pract."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"236","DOI":"10.1016\/j.soncn.2012.09.006","article-title":"The Impact of Caregiving on the Psychological Well-Being of Family Caregivers and Cancer Patients","volume":"28","author":"Northouse","year":"2012","journal-title":"Semin. Oncol. Nurs."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"388","DOI":"10.1007\/s00134-013-3186-3","article-title":"One-Year Mortality and Predictors of Death among Hospital Survivors of Acute Respiratory Distress Syndrome","volume":"40","author":"Wang","year":"2014","journal-title":"Intens. Care Med."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"805","DOI":"10.1007\/s00520-018-4314-y","article-title":"Priorities for Caregiver Research in Cancer Care: An International Delphi Survey of Caregivers, Clinicians, Managers, and Researchers","volume":"27","author":"Lambert","year":"2019","journal-title":"Support. Care Cancer"},{"key":"ref_21","unstructured":"Canadian Cancer Statistics Advisory Committee (2019). Canadian Cancer Statistics 2019, Canadian Cancer Society."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"669","DOI":"10.1001\/jama.2021.0106","article-title":"Diagnosis and Treatment of Metastatic Colorectal Cancer: A Review","volume":"325","author":"Biller","year":"2021","journal-title":"JAMA"},{"key":"ref_23","unstructured":"(2021, July 27). American Psychological Association Emotion. Available online: https:\/\/dictionary.apa.org\/emotion."},{"key":"ref_24","doi-asserted-by":"crossref","unstructured":"Conley, C., Bishop, B., and Andersen, B. (2016). Emotions and Emotion Regulation in Breast Cancer Survivorship. Healthcare, 4.","DOI":"10.3390\/healthcare4030056"},{"key":"ref_25","doi-asserted-by":"crossref","unstructured":"Thorne, S. (2016). Interpretive Description: Qualitative Research for Applied Practice, Routledge.","DOI":"10.4324\/9781315545196"},{"key":"ref_26","unstructured":"Alberta SPOR SUPPORT Unit (2018). Patient Engagement in Health Research: A How-To Guide for Researchers, Alberta SPOR SUPPORT Unit."},{"key":"ref_27","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":"Malterud","year":"2016","journal-title":"Qual. Health Res."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"387","DOI":"10.1016\/j.ejon.2011.09.001","article-title":"The Cancer Family Caregiving Experience: An Updated and Expanded Conceptual Model","volume":"16","author":"Fletcher","year":"2012","journal-title":"Europ. J. Oncol. Nurs."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"318","DOI":"10.3322\/caac.21396","article-title":"A Review of Family Caregiving Intervention Trials in Oncology","volume":"67","author":"Ferrell","year":"2017","journal-title":"CA Cancer J Clin."},{"key":"ref_30","doi-asserted-by":"crossref","unstructured":"Northouse, L.L., and McCorkle, R. (2015). Spouse caregivers of cancer patients. Psychooncology, Oxford University Press. [3rd ed.].","DOI":"10.1093\/med\/9780199363315.003.0075"},{"key":"ref_31","unstructured":"Sawatzky, R., Chan, E., Zumbo, B., Ahmed, S., Bartlett, S., and Bingham III, C. (2017). Modern Perspectives of Measurement Validation Emphasize Justification of Inferences: Proceedings from the Montreal Accord to Accelerate and Harmonize PRO Use. J. Clin. Epidemiol."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"e13399","DOI":"10.1111\/ecc.13399","article-title":"Caregiver Distress and Quality of Life in Primary Caregivers of Oncology Patients in Active Treatment and Follow-Up","volume":"30","author":"Decadt","year":"2021","journal-title":"Europ. J. Cancer Care"},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"473","DOI":"10.1097\/NCC.0b013e3181b14e94","article-title":"Support Needs of Patients with Oral Cancer and Burden to Their Family Caregivers","volume":"32","author":"Chen","year":"2009","journal-title":"Cancer Nurs."},{"key":"ref_34","first-page":"CR447","article-title":"Depression and Physical Health among Family Caregivers of Geriatric Patients with Cancer\u2014A Longitudinal View","volume":"10","author":"Kurtz","year":"2004","journal-title":"Med. Sci. Monit."},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"4985","DOI":"10.1111\/jocn.13997","article-title":"Perceived Social Support and the Sense of Coherence in Patient\u2013Caregiver Dyad versus Acceptance of Illness in Cancer Patients","volume":"26","author":"Pasek","year":"2017","journal-title":"J. Clin. Nurs."},{"key":"ref_36","doi-asserted-by":"crossref","unstructured":"Treanor, C.J., Santin, O., Prue, G., Coleman, H., Cardwell, C.R., O\u2019Halloran, P., and Donnelly, M. (2019). Psychosocial Interventions for Informal Caregivers of People Living with Cancer. Cochrane Database Syst. Rev.","DOI":"10.1002\/14651858.CD009912.pub2"},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"58","DOI":"10.1016\/j.ejon.2013.09.003","article-title":"A Literature Review on the Mutual Impact of the Spousal Caregiver\u2013Cancer Patients Dyads: \u2018Communication\u2019,\u2018Reciprocal Influence\u2019, and \u2018Caregiver\u2013Patient Congruence\u2019","volume":"18","author":"Li","year":"2014","journal-title":"Europ. J. Oncol. Nurs."},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"85","DOI":"10.1111\/bjhp.12094","article-title":"Dyadic Coping and Relationship Functioning in Couples Coping with Cancer: A Systematic Review","volume":"20","author":"Traa","year":"2015","journal-title":"Br. J. Health Psychol."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1037\/0033-2909.134.1.1","article-title":"Distress in Couples Coping with Cancer: A Meta-Analysis and Critical Review of Role and Gender Effects","volume":"134","author":"Hagedoorn","year":"2008","journal-title":"Psycho. Bull."},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"423","DOI":"10.1002\/nur.21622","article-title":"Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review","volume":"37","author":"Gibbons","year":"2014","journal-title":"Res. Nurs. Health"},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"336","DOI":"10.1016\/j.psychres.2009.08.021","article-title":"Is Prolonged Grief Distinct from Bereavement-Related Posttraumatic Stress?","volume":"178","author":"Golden","year":"2010","journal-title":"Psychiatry Res."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"266","DOI":"10.1002\/wps.20348","article-title":"\u201cProlonged Grief Disorder\u201d and \u201cPersistent Complex Bereavement Disorder\u201d, but Not \u201cComplicated Grief\u201d, Are One and the Same Diagnostic Entity: An Analysis of Data from the Yale Bereavement Study","volume":"15","author":"Maciejewski","year":"2016","journal-title":"World Psychiatry"},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"131","DOI":"10.1002\/pon.3412","article-title":"How Do Researchers Conceive of Spousal Grief after Cancer? A Systematic Review of Models Used by Researchers to Study Spousal Grief in the Cancer Context","volume":"23","author":"Fasse","year":"2014","journal-title":"Psychooncology"}],"container-title":["Current Oncology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/1718-7729\/28\/5\/355\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T07:16:15Z","timestamp":1760166975000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/1718-7729\/28\/5\/355"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,10,16]]},"references-count":43,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2021,10]]}},"alternative-id":["curroncol28050355"],"URL":"https:\/\/doi.org\/10.3390\/curroncol28050355","relation":{},"ISSN":["1718-7729"],"issn-type":[{"value":"1718-7729","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,10,16]]}}}