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Availability as key determinant in the palliative home care setting from the patients’ and family caregivers’ perspectives: A quantitative-qualitative-content analysis approach

Published online by Cambridge University Press:  04 December 2020

Kim Dillen Open the ORCID record for Kim Dillen [Opens in a new window] ,
Melanie Joshi ,
Norbert Krumm ,
Michaela Hesse ,
Holger Brunsch ,
Holger Schmidt ,
Julia Strupp ,
Lukas Radbruch ,
Roman Rolke  and
Raymond Voltz
Kim Dillen*
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Melanie Joshi
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Norbert Krumm
Affiliation:
Department for Palliative Medicine, Medical Faculty RWTH Aachen University, Aachen, Germany
Michaela Hesse
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany
Holger Brunsch
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany
Holger Schmidt
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Julia Strupp
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Lukas Radbruch
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany Centre for Palliative Care, Malteser Hospital Bonn/Rhein-Sieg, Bonn, Germany
Roman Rolke
Affiliation:
Department for Palliative Medicine, Medical Faculty RWTH Aachen University, Aachen, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Clinical Trials Center (ZKS), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
*
Author for correspondence: Kim Dillen, Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Kerpener Strasse 62, 50924 Cologne, Germany. E-mail: kim.dillen@uk-koeln.de
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Abstract

Objective

A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients’ and family caregivers’ perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care.

Methods

The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach.

Results

One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication.

Significance of results

The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

Keywords

AvailabilityFamily caregiversPalliative care patientsPalliative home careSense of security
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 5 , October 2021 , pp. 570 - 579
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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Footnotes

†

See Appendix section for APVEL consortium members.

*

Contributed equally.

References

REFERENCES

Boström, B, Sandh, M, Lundberg, D, et al. (2004) Cancer patients’ experiences of care related to pain management before and after palliative care referral. European Journal of Cancer Care 13(3), 238–245.CrossRefGoogle ScholarPubMed
Coulter, A and Magee, H (2003) The European Patient of the Future. McGraw-Hill Education, Maidenhead and Philadelphia, UK.Google Scholar
Droz, M, Senn, N and Cohidon, C (2019) Communication, continuity and coordination of care are the most important patients’ values for family medicine in a fee-for-services health system. BMC Family Practice 20(1), 19.CrossRefGoogle Scholar
Foley, G (2018) The supportive relationship between palliative patients and family caregivers. BMJ Supportive & Palliative Care 8, 184–186.CrossRefGoogle ScholarPubMed
Funk, L, Allan, D and Stajduhar, K (2009) Palliative family caregivers’ accounts of health care experiences: The importance of “security”. Palliative & Supportive Care 7(4), 435–447.CrossRefGoogle ScholarPubMed
Gallagher, R and Krawczyk, M (2013) Family members’ perceptions of end-of-life care across diverse locations of care. BMC Palliative Care 12(1), 25.CrossRefGoogle ScholarPubMed
Gamondi, C, Larkin, P and Payne, S (2013) Core competencies in palliative care: An EAPC White Paper on palliative care education — Part 1. European Journal of Palliative Care 20(2), 140–145.Google Scholar
Gemeinsamer Bundesausschuss (2007) Richtlinie des Gemeinsamen Bundesausschusses zur Verordnung von spezialisierter ambulanter Palliativversorgung. Available at: https://www.g-ba.de/downloads/62-492-2106/SAPV-RL_2020-03-27_iK-2020-03-09.pdf (retrieved 10 April 2020).Google Scholar
Goldschmidt, D, Schmidt, L, Krasnik, A, et al. (2006) Expectations to and evaluation of a palliative home-care team as seen by patients and carers. Supportive Care in Cancer 14(12), 1232–1240.CrossRefGoogle Scholar
Gomes, B, Calanzani, N, Koffman, J, et al. (2015) Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Medicine 13(1), 235.CrossRefGoogle ScholarPubMed
Gysels, M, Shipman, C and Higginson, IJ (2008) Is the qualitative research interview an acceptable medium for research with palliative care patients and carers? BMC Medical Ethics 9(1), 7.CrossRefGoogle ScholarPubMed
Hearn, J and Higginson, IJ (1998) Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliative Medicine 12(5), 317–332.CrossRefGoogle ScholarPubMed
Heyland, DK, Dodek, P, Rocker, G, et al. (2006) What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. CMAJ 174(5), 627–633.CrossRefGoogle ScholarPubMed
Higginson, IJ and Evans, CJ (2010) What is the evidence that palliative care teams improve outcomes for cancer patients and their families? The Cancer Journal 16(5), 423–435.CrossRefGoogle ScholarPubMed
Hov, R, Bjørsland, B, Kjøs, BØ, et al. (2020) A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives — A quantitative study. BMC Palliative Care 19(1), 7.CrossRefGoogle Scholar
Jansky, M, Lindena, G and Nauck, F (2011) Stand der spezialisierten ambulanten Palliativversorgung (SAPV) in Deutschland — Verträge und Erfahrungen. Zeitschrift für Palliativmedizin 12(04), 164–174.CrossRefGoogle Scholar
Johnston, BM, Milligan, S, Foster, C, et al. (2012) Self-care and end of life care — Patients’ and carers’ experience a qualitative study utilising serial triangulated interviews. Supportive Care in Cancer 20(8), 1619–1627.CrossRefGoogle ScholarPubMed
Kassenärztliche Vereinigung Nordrhein (2019). Hospizarbei und Palliativversorgung in NRW — das Lebensende menschenwürdig und angstfrei gestalten. Available at: https://www.landtag.nrw.de/home/dokumente_und_recherche/dokumentenabruf.html (retrieved 30 September 2020).Google Scholar
Klarare, A, Rasmussen, BH, Fossum, B, et al. (2017) Experiences of security and continuity of care: Patients’ and families’ narratives about the work of specialized palliative home care teams. Palliative Supportive Care 15(2), 181–189.CrossRefGoogle ScholarPubMed
Krevers, B and Milberg, A (2014) The instrument ‘sense of security in care–patients’ evaluation’: Its development and presentation. Psychooncology 23(8), 914–920.CrossRefGoogle ScholarPubMed
Krumm, N, Stumm, V, Dillen, K, et al. (2018) Entwicklung eines Interviewleitfadens als Teil eines Erhebungsinstrumentes zur Messung der Wirksamkeit der SAPV in 3 Regionen in Nordrhein — eine Fokusgruppenanalyse. Zeitschrift für Palliativmedizin 19(05), P9.Google Scholar
Kuckartz, U (2010) Einführung in die computergestützte Analyse qualitativer Daten, 3e. Wiesbaden, Germany: VS Verlag für Sozialwissenschaften.CrossRefGoogle Scholar
Mayring, P (2017) Evidenztriangulation in der Gesundheitsforschung. KZfSS Kölner Zeitschrift für Soziologie und Sozialpsychologie 69(2), 415–434.CrossRefGoogle Scholar
Mayring, P and Fenzl, T (2019) Qualitative inhaltsanalyse. In Baur, N and Blasius, J (eds.), Handbuch Methoden der empirischen Sozialforschung. Wiesbaden, Germany: VS Verlag für Sozialwissenschaften, pp. 633–648.CrossRefGoogle Scholar
McGuire, DB (1992) Comprehensive and multidimensional assessment and measurement of pain. Journal of Pain Symptom Management 7(5), 312–319.CrossRefGoogle ScholarPubMed
Meier, DE, Thar, W, Jordan, A, et al. (2004) Integrating case management and palliative care. Journal of Palliative Medicine 7(1), 119–134.CrossRefGoogle ScholarPubMed
Milberg, A and Strang, P (2007) What to do when ‘there is nothing more to do’? A study within a salutogenic framework of family members’ experience of palliative home care staff. Psycho-Oncology: Journal of the Psychological, Social Behavioral Dimensions of Cancer 16(8), 741–751.CrossRefGoogle Scholar
Milberg, A, Strang, P, Carlsson, M, et al. (2003) Advanced palliative home care: Next-of-kin's perspective. Journal of Palliative Medicine 6(5), 749–756.CrossRefGoogle ScholarPubMed
Milberg, A, Wåhlberg, R, Jakobsson, M, et al. (2012) What is a ‘secure base' when death is approaching? A study applying attachment theory to adult patients’ and family members’ experiences of palliative home care. Psycho-Oncology: Journal of the Psychological, Social Behavioral Dimensions of Cancer 21(8), 886–895.CrossRefGoogle ScholarPubMed
Milberg, A, Friedrichsen, M, Jakobsson, M, et al. (2014) Patients’ sense of security during palliative care — What are the influencing factors? Journal of Pain Symptom Management 48(1), 45–55.CrossRefGoogle ScholarPubMed
Milberg, A, Liljeroos, M and Krevers, B (2019) Can a single question about family members’ sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient's death. BMC Palliative Care 18(1), 63.CrossRefGoogle ScholarPubMed
Murtagh, FEM, Preston, M and Higginson, I (2004) Patterns of dying: Palliative care for non-malignant disease. Clinical Medicine 4(1), 39.CrossRefGoogle ScholarPubMed
Nauck, F and Jansky, M (2018) Spezialisierte ambulante Palliativversorgung. DMW — Deutsche Medizinische Wochenschrift 143(8), 558–565.Google Scholar
Öhlén, J, Andershed, B, Berg, C, et al. (2007) Relatives in end-of-life care — Part 2: A theory for enabling safety. Journal of Clinical Nursing 16(2), 382–390.CrossRefGoogle ScholarPubMed
Oosterveld-Vlug, M, Custers, B, Hofstede, J, et al. (2019) What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer. BMC Palliative Care 18(1), 1–10.CrossRefGoogle ScholarPubMed
Polit, DF and Beck, CT (2010) Generalization in quantitative and qualitative research: Myths and strategies. International Journal of Nursing Studies 47(11), 1451–1458.CrossRefGoogle ScholarPubMed
Polit, DF and Beck, CT (2012) Nursing Research: Priniciples and Methods. Philadelphia, PA: Lippincott Williams & Wilkins.Google Scholar
Sarmento, VP, Gysels, M, Higginson, IJ, et al. (2017) Home palliative care works: But how? A meta-ethnography of the experiences of patients and family caregivers. BMJ Supportive Palliative Care 7(4), 390–403.CrossRefGoogle ScholarPubMed
Saunders, B, Sim, J, Kingstone, T, et al. (2018) Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity 52(4), 1893–1907.CrossRefGoogle ScholarPubMed
Schneider, W, Eichner, E, Thoms, U, et al. (2015) Zur Praxis von SAPV in Bayern: Wirksamkeit, Struktur-/prozesseffekte und ländliche Versorgung. Das Gesundheitswesen 77(03), 219–224.Google Scholar
Schwabe, S, Ates, G, Ewert, B, et al. (2017) Der spielt im Moment nicht mehr ganz die Rolle. Bundesgesundheitsblatt-Gesundheitsforschung-Gesundheitsschutz 60(1), 55–61.CrossRefGoogle Scholar
Spettell, CM, Rawlins, WS, Krakauer, R, et al. (2009) A comprehensive case management program to improve palliative care. Journal of Palliative Medicine 12(9), 827–832.CrossRefGoogle ScholarPubMed
Strang, VR, Koop, PM and Peden, J (2002) The experience of respite during home-based family caregiving for persons with advanced cancer. Journal of Palliative Care 18(2), 97–104.CrossRefGoogle ScholarPubMed
Strömgren, AS, Groenvold, M, Petersen, MA, et al. (2004) Pain characteristics and treatment outcome for advanced cancer patients during the first week of specialized palliative care. Journal of Pain Symptom Management 27(2), 104–113.CrossRefGoogle ScholarPubMed
VERBI Software (2018) MAXQDA Manual. Available at: https://www.maxqda.com/download/manuals/MAX2018-Online-Manual-Complete-EN.pdf (retrieved 17 July 2019).Google Scholar
Wensing, M, Jung, HP, Mainz, J, et al. (1998) A systematic review of the literature on patient priorities for general practice care. Part 1: Description of the research domain. Social Science & Medicine 47(10), 1573–1588.CrossRefGoogle ScholarPubMed
World Medical Association (2014) World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. The Journal of the American College of Dentists 81(3), 14.Google Scholar