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Process, content, and experiences of delivering the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the Danish specialised palliative care setting

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Abstract

Purpose

The Carer Support Needs Assessment Tool Intervention (CSNAT-I) has shown positive effects in the Danish specialised palliative care (SPC) setting. Here, we explore the process, content, and experiences of delivering the CSNAT-I.

Methods

Data were collected during a stepped wedge cluster randomised controlled trial investigating the impact of the CSNAT-I in the Danish SPC setting in 2018–2019. Data were obtained from the CSNAT (tool) completed by caregivers, from health care professionals’ (HCPs’) written documentation of the CSNAT-I, and from semi-structured interviews with HCPs.

Results

The study population consisted of the 130 caregivers receiving a first CSNAT-I within 13 days of study enrolment, the 93 caregivers receiving a second CSNAT-I 15–27 days after enrolment, and the 44 HCPs delivering the intervention. Top three domains of unmet caregiver support needs reported in the CSNAT-I were: “knowing what to expect in the future,” “dealing with feelings and worries,” and “understanding the illness.” These domains together with “knowing who to contact if concerned” and “talking to the patient about the illness” were also the domains most frequently prioritised for discussion with HCPs. According to HCPs, most often support delivered directly by HCPs themselves during the actual contact (e.g., listening, advice, information) was sufficient. Overall, HCPs experienced the CSNAT-I as constructive and meaningful, and difficulties in delivering the intervention were rarely an issue.

Conclusion

The support needs reported by caregivers confirm the relevance of the CSNAT-I. HCPs’ overall experiences of the clinical feasibility and relevance of the CSNAT-I were very positive.

ClinicalTrials.gov ID: NCT03466580. Date of registration: March 1, 2018.

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Data availability

Data are available upon reasonable request. Any data sharing requires approval from the Danish Data Protection Board.

Code availability

Not applicable.

References

  1. Gomes B, Higginson I (2006) Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 332(7540):515–521. https://doi.org/10.1136/bmj.38740.614954.55

    Article  PubMed  PubMed Central  Google Scholar 

  2. Grande G, Ewing G (2008) Death at home unlikely if informal carers prefer otherwise: implications for policy. Palliat Med 22(8):971–972. https://doi.org/10.1177/0269216308098805

    Article  CAS  PubMed  Google Scholar 

  3. Girgis A, Lambert S, Johnson C et al (2013) Physical, psychosocial, relationship, and economic burden of caring for people with cancer: a review. J Oncol Pract 9(4):197–202. https://doi.org/10.1200/JOP.2012.000690

    Article  PubMed  Google Scholar 

  4. Waldrop DP, Kramer BJ, Skretny JA et al (2005) Final transitions: family caregiving at the end of life. J Palliat Med 8(3):623–638. https://doi.org/10.1089/jpm.2005.8.623

    Article  PubMed  Google Scholar 

  5. Docherty A, Owens A, Asadi-Lari M et al (2008) Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review. Palliat Med 22(2):153–171. https://doi.org/10.1177/0269216307085343

    Article  PubMed  Google Scholar 

  6. Bee P, Barnes P, Luker K (2008) A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. J Clin Nurs 18:1379–1393. https://doi.org/10.1111/j.1365-2702.2008.02405.x

    Article  Google Scholar 

  7. Harding R, Epiphaniou E, Hamilton D et al (2012) What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention. Support Care Cancer 20(9):1975–1982. https://doi.org/10.1007/s00520-011-1300-z

    Article  CAS  PubMed  Google Scholar 

  8. Ewing G, Grande G (2012) Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life practice at home: a qualitative study. Palliat Med 27(3):244–256. https://doi.org/10.1177/0269216312440607

    Article  PubMed  Google Scholar 

  9. Ewing G, Payne S, Grande G (2013) The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study. J Pain Symptom Manage 46(3):395–405. https://doi.org/10.1016/j.jpainsymman.2012.09.008

    Article  PubMed  Google Scholar 

  10. Ewing G, Austin L, Diffin J et al (2015) Developing a person-centred approach to carer assessment and support. Br J Community Nurs 20(12):580–584. https://doi.org/10.12968/bjcn.2015.20.12.580

    Article  PubMed  Google Scholar 

  11. Aoun S, Grande G, Howting D et al (2015) The impact of the Carer Support Needs Assessment Tool (CSNAT) in community palliative care using a stepped wedge cluster trial. PLoS ONE 210(4):e0123012. https://doi.org/10.1371/journal.pone.0123012

    Article  CAS  Google Scholar 

  12. Aoun S, Ewing G, Grande G et al (2018) The impact of supporting family caregivers before bereavement on outcomes after bereavement: adequacy of end-of-life support and achievement of preferred place of death. J Pain Symptom Manage 55(2):368–378. https://doi.org/10.1016/j.jpainsymman.2017.09.023

    Article  PubMed  Google Scholar 

  13. Grande G, Austin L, Ewing G et al (2015) Assessing the impact of a carer support needs assessment tool (CSNAT) intervention in palliative home care: a stepped wedge cluster trial. BMJ Support Palliat Care 0:1–9. https://doi.org/10.1136/bmjspcare-2014-000829

  14. Aoun S, Toye C, Deas K et al (2015) Enabling a family caregiver-led assessment of support needs in home-based palliative care: potential translation into practice. Palliat Med 29(10):929–938. https://doi.org/10.1177/0269216315583436

    Article  PubMed  Google Scholar 

  15. Ewing G, Austin L, Grande G (2016) The role of the Carer Support Needs Assessment Tool in palliative home care: a qualitative study of practitioners’ perspectives of its impact and mechanisms of action. Palliat Med 30(4):392–400. https://doi.org/10.1177/0269216315596662

    Article  PubMed  Google Scholar 

  16. Aoun S, Deas K, Toye C et al (2015) Supporting family caregivers to identify their own needs in end-of-life care: qualitative findings from a stepped wedge cluster trial. Palliat Med 29(6):508–517. https://doi.org/10.1177/0269216314566061

    Article  PubMed  Google Scholar 

  17. Lund L, Ross L, Petersen MA et al (2020) Effect of the carer support needs assessment tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial. BMJ Support Palliat Care. https://doi.org/10.1136/bmjspcare-2020-002467

  18. Ferrell B, Temel J, Temin S et al (2017) Integration of palliative care into standard oncology care: ASCO clinical practice guideline update summary. J Oncol Pract 13(2):119–121. https://doi.org/10.1200/JOP.2016.017897

    Article  PubMed  Google Scholar 

  19. Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4):334–340. https://doi.org/10.1002/1098-240X(200008)23:4%3c334::AID-NUR9%3e3.0.CO;2-G

    Article  CAS  PubMed  Google Scholar 

  20. Austin L, Ewing G, Grande G (2017) Factors influencing practitioner adoption of carer-led assessment in palliative homecare: a qualitative study of the use of the Carer Support Needs Assessment Tool (CSNAT). PLoS ONE 12(6):e0179287. https://doi.org/10.1371/journal.pone.0179287

    Article  CAS  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

The authors wish to thank the participating caregivers and the involved staff.

Funding

The study was funded by the Danish Cancer Society (Grant A8861) and the A.P. Moeller and Chastine Mc-Kinney Moeller Foundation (Grant 11692). The sponsors had no role in the study design, data collection, analysis, and interpretation of data, in the writing of the paper, or in the decision to submit the paper for publication.

Author information

Authors and Affiliations

  1. Palliative Care Research Unit, Department of Geriatrics and Palliative Medicine GP, Bispebjerg and Frederiksberg Hospitals, University of Copenhagen, Bispebjerg Bakke 23, 2400, Copenhagen, NV, Denmark

    Line Lund, Lone Ross, Morten Aagaard Petersen & Mogens Groenvold

  2. Department of Oncology and Palliative Care, Zealand University Hospital, Roskilde, Denmark

    Elizabeth Rosted

  3. Palliative Care Team, Medical Department Soenderborg/Toender, South Jutland Hospital, Soenderborg, Denmark

    Georg Bollig

  4. Medical Research Unit, Institute of Regional Health Research, University of Southern Denmark, Aabenraa, Denmark

    Georg Bollig

  5. Palliative Care Unit, Department of Oncology and Palliative Care, North Zealand Hospital, Frederikssund, Denmark

    Gitte Irene Juhl

  6. Department of Geriatrics and Palliative Medicine GP, Bispebjerg and Frederiksberg Hospitals, University of Copenhagen, Copenhagen, Denmark

    Hanne Farholt

  7. Palliative Care Unit, Odense University Hospital, Odense, Denmark

    Helen Winther

  8. Department of Palliative Care, Rigshospitalet—Copenhagen University Hospital, Copenhagen, Denmark

    Louise Laursen

  9. Diakonissestiftelsens Hospice, Frederiksberg, Denmark

    Elin Gundelund Blaaberg

  10. Arresoedal Hospice, Frederiksvaerk, Denmark

    Signe Weensgaard

  11. Palliative Care Team, Department of Oncology, Aarhus University Hospital, Aarhus, Denmark

    Mai-Britt Guldin

  12. Centre for Family Research, University of Cambridge, Cambridge, UK

    Gail Ewing

  13. School of Health Sciences, University of Manchester, Manchester, UK

    Gunn Grande

  14. Section of Health Services Research, Department of Public Health, University of Copenhagen, Copenhagen, Denmark

    Mogens Groenvold

Authors
  1. Line Lund
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  2. Lone Ross
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  3. Morten Aagaard Petersen
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  4. Elizabeth Rosted
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  5. Georg Bollig
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  6. Gitte Irene Juhl
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  7. Hanne Farholt
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  8. Helen Winther
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  9. Louise Laursen
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  10. Elin Gundelund Blaaberg
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  11. Signe Weensgaard
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  12. Mai-Britt Guldin
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  13. Gail Ewing
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  14. Gunn Grande
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  15. Mogens Groenvold
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Contributions

All authors contributed to the study conception and design. Data collection and analysis were performed by Line Lund. The first draft of the manuscript was written by Line Lund, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Line Lund.

Ethics declarations

Ethics approval

The study was carried out in accordance with the 1964 Helsinki Declaration and its later amendments.

The study was registered at ClinicalTrials.gov (ID: NCT03466580) and was approved by the Danish Data Protection Board (VD-2018–46). The protocol was presented to the Scientific Ethical Committee system (no. H-16042063) and was found not to require formal approval from the committee.

Consent to participate

Patient and caregiver gave informed consent to the caregiver’s participation in the study. Furthermore, the patients gave informed consent to extraction of data concerning their diagnosis and specialised palliative care course from Danish registers.

Consent for publication

Not applicable.

Conflict of interest

The authors declare no competing interests. The authors have full control over all primary data and agree to allow the journal to review the data if requested.

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Lund, L., Ross, L., Petersen, M.A. et al. Process, content, and experiences of delivering the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the Danish specialised palliative care setting. Support Care Cancer 30, 377–387 (2022). https://doi.org/10.1007/s00520-021-06432-1

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