CoChat
Sign Up
Cited by 13Palliative Care and End-of-Life IssuesPalliative and Oncologic CareNursing care and research

Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol

Open access
Fernandes, Júlio Belo, Domingos, Josefa, Castro, Cidália, Simões, Aida, Fernandes, Sónia, Almeida, Ana Silva, Bernardes, Catarina, Miranda, Luís +5 more·2023·Frontiers in Psychology
DOI 10.3389/fpsyg.2022.1071711PMC PMC9853914
Open this paper in CoChat — free accountOpen PDF

Abstract

Cancer has an associated burden that continues to grow, affecting patients, family caregivers, and the individual’s community. The family caregivers’ unmet needs may harmfully jeopardize their well-being and the patient’s health outcomes. Therefore, it is essential to understand the needs and expectations of family caregivers of cancer patients to develop and improve care practices. The present study aims to explore the needs and expectations of family caregivers of cancer patients in palliative care. This qualitative, descriptive exploratory study will use purposive sampling to recruit family caregivers and healthcare professionals from the palliative care units of two hospital centers in Lisbon and Tagus Valley. First, the Focus group will be performed until data saturation occurs. Then, a conventional thematic analysis will be applied to analyze data with the help of the coding software QDA Miner Lite database. This study’s findings will help identify gaps in care and provide data that can support healthcare professionals in providing evidence-based centered care to family caregivers. It can also generate knowledge that may help stakeholders to develop a comprehensive support system for cancer survivors in palliative care and their family caregivers.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.3389/fpsyg.2022.1071711

Cites

6 of 6 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • Providing psychological counselling services, support groups, and community resources is crucial.

    “Research indicates that providing psychological counselling services, support groups, and community resources is crucial [29].”

    From Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study (2024) · cites this paper as [29]

    The Introduction (page unavailable) says psychological care for palliative-care patients and their family caregivers can provide comfort and minimize suffering. It does not identify counselling services, support groups, or community resources as a crucial package; the focus groups described in Methods are for research data collection, not caregiver support. (LLM, conf=0.84)

    Experimental — accuracy not yet measured

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Cites

Flagged first, then by citations

Research works printed but not linked: 52

  1. Apadula L. Capurso G. Ambrosi A. Arcidiacono P. G. (2022). Patient reported experience measure in endoscopic ultrasonography: the PREUS study protocol. Nurs. Rep. 12, 59– 64. doi: 10.3390/nursrep12010007, PMID: 35225893 PMC8883908 · DOI
  2. Berger I. Beck L. Jones J. MacEachen E. Kirsh B. (2020). Exploring the needs of cancer survivors when returning to or staying in the workforce. J. Occup. Rehabil. 30, 480– 495. doi: 10.1007/s10926-020-09877-z 32016649 · DOI
  3. Birgisdóttir D. Duarte A. Dahlman A. Sallerfors B. Rasmussen B. H. Fürst C. J. (2021). A novel care guide for personalised palliative care—a national initiative for improved quality of care. BMC Palliat. Care 20: 176. doi: 10.1186/s12904-021-00874-4, PMID: 34763677 PMC8582140 · DOI
  4. Braun V. Clarke V. Hayfield N. Terry G. (2019). “ Handbook of research methods in health social sciences,” in Thematic Analysis. ed. Liamputtong P. (Singapore: Springer).
  5. Chang Y. J. Kwon Y. C. Lee W. J. do Y. R. Lee K. S. Kim H. T.. (2013). Burdens, needs and satisfaction of terminal cancer patients and their caregivers. Asian Pac. J. Cancer Prev. 14, 209– 215. doi: 10.7314/APJCP.2013.14.1.209, PMID: 23534725 · DOI
  6. Chapman E. J. Pini S. Edwards Z. Elmokhallalati Y. Murtagh F. E. M. Bennett M. I. (2022). Conceptualising effective symptom management in palliative care: a novel model derived from qualitative data. BMC Palliat. Care 21: 17. doi: 10.1186/s12904-022-00904-9, PMID: 35115005 PMC8815221 · DOI
  7. Cheluvappa R. Selvendran S. (2022). Palliative care nursing in Australia and the role of the registered nurse in palliative care. Nurs. Rep. 12, 589– 596. doi: 10.3390/nursrep12030058, PMID: 35997466 PMC9397021 · DOI
  8. Chen X. Su J. Bressington D. T. Li Y. Leung S. F. (2022). Perspectives of nursing students towards schizophrenia stigma: a qualitative study protocol. Int. J. Environ. Res. Public Health 19: 9574. doi: 10.3390/ijerph19159574 35954931 PMC9368375 · DOI
  9. Chua G. P. Pang G. S. Y. Yee A. C. P. Neo P. S. H. Zhou S. Lim C.. (2020). Supporting the patients with advanced cancer and their family caregivers: what are their palliative care needs? BMC Cancer 20: 768. doi: 10.1186/s12885-020-07239-9, PMID: 32799834 PMC7429720 · DOI · Paper page
  10. Cochrane A. Reid O. Woods S. Gallagher P. Dunne S. (2021). Variables associated with distress amongst informal caregivers of people with lung cancer: a systematic review of the literature. Psychooncology 30, 1246– 1261. doi: 10.1002/pon.5694, PMID: 33945184 · DOI · Paper page
  11. Coelho A. Rocha A. Cardoso D. Rodrigues R. Costeira C. Gomes S.. (2022). Monitoring and Management of the Palliative Care Patient Symptoms: a best practice implementation project. Nurs. Rep. 12, 365– 370. doi: 10.3390/nursrep12020035, PMID: 35645361 PMC9149824 · DOI
  12. Cormio C. Romito F. Viscanti G. Turaccio M. Lorusso V. Mattioli V. (2014). Psychological well-being and posttraumatic growth in caregivers of cancer patients. Front. Psychol. 5: 1342. doi: 10.3389/fpsyg.2014.01342 25477853 PMC4238371 · DOI
  13. Dhingra L. Barrett M. Knotkova H. Chen J. Riggs A. Lee B.. (2018). Symptom distress among diverse patients referred for community-based palliative care: sociodemographic and medical correlates. J. Pain Symptom Manag. 55, 290– 296. doi: 10.1016/j.jpainsymman.2017.08.015, PMID: 28844624 · DOI
  14. Doyle L. McCabe C. Keogh B. Brady A. McCann M. (2020). An overview of the qualitative descriptive design within nursing research. J. Res. Nurs. 25, 443– 455. doi: 10.1177/1744987119880234, PMID: 34394658 PMC7932381 · DOI
  15. Fernandes J. B. Fernandes S. I. B. A. Almeida A. L. S. Gonçalves de Almeida J. M. Peças D. M. T. B. (2022b). Factores asociados con la falta de adherencia a ayudas técnicas para la marcha en ancianos con alto riesgo de caídas. Cult. Cuidados 26, 191– 205. doi: 10.14198/cuid.2022.62.14 · DOI
  16. Fernandes J. B. Fernandes S. Almeida A. Vareta D. Miller C. (2021). Older Adults' perceived barriers to participation in a falls prevention strategy. J. Pers. Med. 11: 450. doi: 10.3390/jpm11060450, PMID: 34070987 PMC8224773 · DOI
  17. Fernandes J. B. Vareta D. Fernandes S. Almeida A. S. Peças D. Ferreira N.. (2022a). Rehabilitation workforce challenges to implement person-centered care. Int. J. Environ. Res. Public Health 19: 3199. doi: 10.3390/ijerph19063199, PMID: 35328886 PMC8950126 · DOI
  18. Ferreira R. Baixinho C. L. Ferreira Ó. R. Nunes A. C. Mestre T. Sousa L. (2022). Health promotion and disease prevention in the elderly: the perspective of nursing students. J. Pers. Med. 12: 306. doi: 10.3390/jpm12020306, PMID: 35207794 PMC8876286 · DOI
  19. Ferreira B. Gomes T. J. B. Baixinho C. R. S. L. Ferreira Ó. M. R. (2020). Transitional care to caregivers of dependent older people: an integrative literature review. Rev. Bras. Enferm. 73: e20200394. doi: 10.1590/0034-7167-2020-0394, PMID: 33175000 · DOI
  20. Ferreira R. M. F. Nunes A. C. P. (2019). Ongoing training in the development of nursing teacher skills. Rev. Gaucha Enferm. 40: e20180171. doi: 10.1590/1983-1447.2019.20180171, PMID: 30785551 · DOI
  21. Fiest K. M. McIntosh C. J. Demiantschuk D. Leigh J. P. Stelfox H. T. (2018). Translating evidence to patient care through caregivers: a systematic review of caregiver-mediated interventions. BMC Med. 16: 105. doi: 10.1186/s12916-018-1097-4, PMID: 29996850 PMC6042352 · DOI
  22. Finucane A. M. Bone A. E. Evans C. J. Gomes B. Meade R. Higginson I. J.. (2019). The impact of population ageing on end-of-life care in Scotland: projections of place of death and recommendations for future service provision. BMC Palliat. Care 18: 112. doi: 10.1186/s12904-019-0490-x, PMID: 31829177 PMC6907353 · DOI
  23. Ghosh A. Dzeng E. Cheng M. J. (2015). Interaction of palliative care and primary care. Clin. Geriatr. Med. 31, 207– 218. doi: 10.1016/j.cger.2015.01.001 25920056 · DOI
  24. Glaser B. G. Strauss A. L. (2017). “ The discovery of grounded theory,” in Strategies for Qualitative Research. New York: Routledge.
  25. Grønkjær M. Curtis T. de Crespigny C. Delmar C. (2011). Analysing group interaction in focus group research: impact on content and the role of the moderator. Qualitat. Stud. 2, 16– 30. doi: 10.7146/qs.v2i1.4273 · DOI
  26. Haapasalmi S. Piili R. P. Metsänoja R. Kellokumpu-Lehtinen P. L. I. Lehto J. T. (2021). Physicians' decreased tendency to choose palliative care for patients with advanced dementia between 1999 and 2015. BMC Palliat. Care 20: 119. doi: 10.1186/s12904-021-00811-5, PMID: 34311739 PMC8312352 · DOI
  27. Johnston E. A. van der Pols J. C. Ekberg S. (2021). Needs, preferences, and experiences of adult cancer survivors in accessing dietary information post-treatment: a scoping review. Eur. J. Cancer Care 30: e13381. doi: 10.1111/ecc.13381, PMID: 33377564 · DOI
  28. Kim J. Y. Chun M. Kim S. W. Song J. (2020). Identification of Korean cancer survivors' unmet needs and desired psychosocial assistance: a focus group study. PLoS One 15: e0228054. doi: 10.1371/journal.pone.0228054, PMID: 31945143 PMC6964891 · DOI
  29. Kozlov E. Niknejad B. Reid M. C. (2018). Palliative care gaps in providing psychological treatment: a review of the current state of research in multidisciplinary palliative care. Am. J. Hosp. Palliat. Care 35, 505– 510. doi: 10.1177/1049909117723860, PMID: 28783958 PMC5873550 · DOI
  30. Krueger R. Casey M., Focus Groups: A Practical Guide for Applied Research 5th Edn. (2014). Thousand Oaks: Sage Publications.
  31. Laker C. Knight-Davidson P. Hawkes D. Driver P. Nightingale M. Winter A.. (2022). The use of 360-degree video in developing emotional coping skills (reduced anxiety and increased confidence) in mental health nursing students: a protocol paper. Nurs. Rep. 12, 536– 544. doi: 10.3390/nursrep12030052, PMID: 35894042 PMC9326566 · DOI
  32. Leykum L. K. Penney L. S. Dang S. Trivedi R. B. Noël P. H. Pugh J. A.. (2022). Recommendations to improve health outcomes through recognizing and supporting caregivers. J. Gen. Intern. Med. 37, 1265– 1269. doi: 10.1007/s11606-021-07247-w, PMID: 34981348 PMC8722428 · DOI
  33. Milbury K. Badr H. Fossella F. Pisters K. M. Carmack C. L. (2013). Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Support Care Cancer 21, 2371– 2379. doi: 10.1007/s00520-013-1795-6, PMID: 23546537 PMC4428561 · DOI
  34. Moore C. Hassett D. Dunne S. (2021). Health literacy in cancer caregivers: a systematic review. J. Cancer Surviv. 15, 825– 836. doi: 10.1007/s11764-020-00975-8, PMID: 33409857 · DOI
  35. Murray S. A. Firth A. Schneider N. van den Eynden B. Gomez-Batiste X. Brogaard T.. (2015). Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliat. Med. 29, 101– 111. doi: 10.1177/0269216314545006, PMID: 25395577 · DOI
  36. Naughton M. J. Weaver K. E. (2014). Physical and mental health among cancer survivors: considerations for long-term care and quality of life. N. C. Med. J. 75, 283– 286. doi: 10.18043/ncm.75.4.283, PMID: 25046097 PMC4503227 · DOI
  37. Nelson D. McGonagle I. Jackson C. Kane R. (2022). An exploration of rural-urban residence on self-reported health status with UK cancer survivors following treatment: a brief report. Nurs. Rep. 12, 574– 582. doi: 10.3390/nursrep12030056, PMID: 35997464 PMC9397029 · DOI
  38. Oechsle K. Ullrich A. Marx G. Benze G. Heine J. Dickel L. M.. (2019). Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care. BMC Palliat. Care 18: 102. doi: 10.1186/s12904-019-0469-7, PMID: 31739802 PMC6862724 · DOI · Paper page
  39. Ownsworth T. Goadby E. Chambers S. K. (2015). Support after brain tumor means different things: family caregivers' experiences of support and relationship changes. Front. Oncol. 5: 33. doi: 10.3389/fonc.2015.00033 25729740 PMC4325881 · DOI
  40. Parola V. Coelho A. Neves H. Bernardes R. A. Sousa J. P. Catela N. (2022). Burnout and nursing care: a concept paper. Nurs. Rep. 12, 464– 471. doi: 10.3390/nursrep12030044, PMID: 35894034 PMC9326636 · DOI
  41. Pringle J. Johnston B. Buchanan D. (2015). Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: a systematic review. Palliat. Med. 29, 675– 694. doi: 10.1177/0269216315575681, PMID: 25802322 · DOI
  42. Rosario-Ramos L. Suarez K. Peña-Vargas C. Toro-Morales Y. Costas-Muñiz R. Castro E.. (2022). Important end-of-life topics among Latino patients and caregivers coping with advanced cancer. Int. J. Environ. Res. Public Health 19: 8967. doi: 10.3390/ijerph19158967, PMID: 35897338 PMC9330392 · DOI
  43. Shamieh O. Alarjeh G. Li H. Abu Naser M. Abu Farsakh F. Abdel-Razeq R.. (2022). Care needs and symptoms burden of breast cancer patients in Jordan: a cross-sectional study. Int. J. Environ. Res. Public Health 19: 10787. doi: 10.3390/ijerph191710787, PMID: 36078504 PMC9517868 · DOI
  44. Sung H. Ferlay J. Siegel R. L. Laversanne M. Soerjomataram I. Jemal A.. (2021). Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J. Clin. 71, 209– 249. doi: 10.3322/caac.21660, PMID: 33538338 · DOI · Paper page
  45. Thomas D. R. (2016). A general inductive approach for analyzing qualitative evaluation data. Am. J. Eval. 27, 237– 246. doi: 10.1177/1098214005283748 · DOI · Paper page
  46. Tong A. Sainsbury P. Craig J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int. J. Qual. Health Care 19, 349– 357. doi: 10.1093/intqhc/mzm042, PMID: 17872937 · DOI · Paper page
  47. Tran K. B. Lang J. J. Compton K. Xu R. Acheson A. R. Henrikson H. J. (2022). The global burden of cancer attributable to risk factors, 2010–19: a systematic analysis for the global burden of disease study (2019). Lancet 400, 563– 591. doi: 10.1016/S0140-6736(22)01438-6, PMID: 35988567 PMC9395583 · DOI
  48. Ullrich A. Marx G. Bergelt C. Benze G. Zhang Y. Wowretzko F.. (2021). Supportive care needs and service use during palliative care in family caregivers of patients with advanced cancer: a prospective longitudinal study. Support Care Cancer 29, 1303– 1315. doi: 10.1007/s00520-020-05565-z, PMID: 32632761 PMC7843549 · DOI · Paper page
  49. Wang T. Molassiotis A. Chung B. P. M. Tan J. Y. (2018). Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat. Care 17: 96. doi: 10.1186/s12904-018-0346-9, PMID: 30037346 PMC6057056 · DOI · Paper page
  50. Wong L. P. (2008). Focus group discussion: a tool for health and medical research. Singap. Med. J. 49, 256– 261. 18363011
  51. Wray N. Markovic M. Manderson L. (2007). Discourses of normality and difference: responses to diagnosis and treatment of gynaecological cancer of Australian women. Soc. Sci. Med. 64, 2260– 2271. doi: 10.1016/j.socscimed.2007.02.034, PMID: 17399878 · DOI
  52. Xu S. Liu Y. Zhang T. Zheng J. Lin W. Cai J.. (2021). The global, regional, and National Burden and trends of breast cancer from 1990 to 2019: results from the global burden of disease study 2019. Front. Oncol. 11: 689562. doi: 10.3389/fonc.2021.689562, PMID: 34094989 PMC8176863 · DOI

Cited by

Sorted by citations

Authors
Fernandes, J. B., Domingos, J., Castro, C., Simões, A., Fernandes, S., Almeida, A. S., Bernardes, C., Miranda, L., Risso, S., Ferreira, R., Baixinho, C. L., Silvestre, M., & Godinho, C.
Affiliations
  • Escola Superior de Saúde Egas Moniz (PT)
  • Centro de Investigação Interdisciplinar Egas Moniz (PT)
  • Hospital de São Bernardo (PT)
  • Universidade Politécnica de Beja (PT)
  • Nursing Research, Innovation and Development Centre of Lisbon (PT)
Corresponding author
Fernandes, Júlio Belo
ORCID
Venue
Frontiers in Psychology
Publisher
Frontiers Media SA
Published
2023-01-06
Volume
13
Pages
1071711-1071711
ISSN
1664-1078 (ISSN-L)
DOI
10.3389/fpsyg.2022.1071711
PMC
PMC9853914
OpenAlex
W4313608341
Cited by
13
References
6
Citations by year
2026: 2 · 2025: 5 · 2024: 3 · 2023: 3
FWCI
3.32
Type
journal article
Language
en
Open access
Licence
Locations
  • Frontiers in Psychology (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Portuguese National Funding Agency for Science, Research and Technology (RCAAP Project by FCT) (submittedVersion, cc-by)
  • Portuguese National Funding Agency for Science, Research and Technology (RCAAP Project by FCT) (submittedVersion, cc-by-nc-nd)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
Fundação para a Ciência e a Tecnologia (UIDB/04585/2020, project UIDB/04585/2020)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
Keywords
family caregivers, cancer patients, palliative care, caregiver needs, caregiver expectations, caregiver well-being, caregiver support, cancer survivors

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review