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Development of a German version of the Carer Support Needs Assessment Tool (CSNAT): The process of translation and cultural adaptation

Published online by Cambridge University Press:  19 September 2019

Christiane Kreyer Open the ORCID record for Christiane Kreyer [Opens in a new window] ,
Johannes Bükki  and
Sabine Pleschberger
Christiane Kreyer*
Affiliation:
Department of Nursing Science and Gerontology, UMIT — Private University for Health Sciences, Medical Informatics and Technology, Hall in Tirol, Austria
Johannes Bükki
Affiliation:
Department of Palliative Care, Kantonsspital St. Gallen, St. Gallen, Switzerland
Sabine Pleschberger
Affiliation:
GÖG — The Austrian Public Health Institute, Vienna, Austria
*
Author for correspondence: Christiane Kreyer, Department of Nursing Science and Gerontology, UMIT – Private University for Health Sciences, Medical Informatics and Technology Eduard-Wallnöfer-Zentrum 1, 6060 Hall in Tirol, Austria. E-mail: [email protected]
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Abstract

Objective

The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity.

Method

A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis.

Results

The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called “KOMMA” was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers’ needs at the cost of the patients.

Significance of results

A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.

Keywords

Carer Support Needs Assessment ToolFamily caregivingKOMMA-Kommunikation mit AngehörigenPalliative home careSupport needs
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 2 , April 2020 , pp. 193 - 198
Copyright
Copyright © Cambridge University Press 2019

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References

REFERENCES

Alvariza, A, Holm, M, Benkel, I, et al. (2018) A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool. European Journal of Oncology Nursing 35, 1–8.CrossRefGoogle ScholarPubMed
Aoun, SM, 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 10(4), e0123012.CrossRefGoogle ScholarPubMed
Aoun, SM, Deas, K, Kristjanson, LJ, et al. (2017) Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool. Palliative & Supportive Care 15(1), 32–43.CrossRefGoogle ScholarPubMed
Areia, NP, Fonseca, G, Major, S, et al. (2018) Psychological morbidity in family caregivers of people living with terminal cancer: Prevalence and predictors. Palliative & Supportive Care 17(3), 286–293.CrossRefGoogle ScholarPubMed
Austin, L, Ewing, G and 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.CrossRefGoogle Scholar
Beatty, PC and Willis, GB (2007) Research synthesis: The practice of cognitive interviewing. Public Opinion Quarterly 71(2), 287–311.CrossRefGoogle Scholar
Beck, I, Olsson Möller, U, Malmström, M, et al. (2017) Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff. BMC Palliative Care 16(1), 49.CrossRefGoogle Scholar
Dionne-Odom, JN, Azuero, A, Lyons, KD, et al. (2015) Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III Randomized Controlled Trial. Journal of Clinical Oncology 33(13), 1446–1452.CrossRefGoogle ScholarPubMed
Ewing, G and Grande, G (2013) Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine 27(3), 244–256.CrossRefGoogle ScholarPubMed
Ewing, G, Brundle, C, Payne, S, et al. (2013) The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: A validation study. Journal of Pain and Symptom Management 46(3), 395–405.CrossRefGoogle ScholarPubMed
Ewing, G, Austin, L and 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. Palliative Medicine 30(4), 392–400.CrossRefGoogle ScholarPubMed
Gomes, B and Higginson, IJ (2006) Factors influencing death at home. BMJ 332, 515–521. doi: 10.1136/bmj.38740.614954.55CrossRefGoogle ScholarPubMed
Grande, GE, Austin, L, Ewing, G, et al. (2017) Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: A stepped wedge cluster trial. BMJ Supportive & Palliative Care 7(3), 326–334.Google ScholarPubMed
Harding, R and Higginson, I (2000) Working with ambivalence: A qualitative study of informal carers of patients with advanced illness. Psycho-Oncology 9(4), 357.Google Scholar
Harding, R, List, S, Epiphaniou, E, et al. (2012) How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliative Medicine 26(1), 7–22.CrossRefGoogle ScholarPubMed
Mayring, P (2010) Pädagogik. Qualitative Inhaltsanalyse: Grundlagen und Techniken (11., aktualisierte und überarb. Aufl.). Weinheim u.a.: Beltz.CrossRefGoogle Scholar
Payne, S, Hudson, PL, Grande, G, et al. (2010) EAPC White Paper on improving support for family carers in palliative care: Part 1. European Journal of Palliative Care 17(5), 238–245.Google Scholar
Ullrich, A, Ascherfeld, L, Marx, G, et al. (2017) Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliative Care 16(1), 31.CrossRefGoogle ScholarPubMed
Ward-Griffin, C, McWilliam, CL and Oudshoorn, A (2012) Relational experiences of family caregivers providing home-based end-of-life care. Journal of Family Nursing 18(4), 491–516.CrossRefGoogle ScholarPubMed
Wild, D, Grove, A, Martin, M, et al. (2005) Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: Report of the ISPOR task force for translation and cultural adaptation. Value in Health 8(2), 94–104.10.1111/j.1524-4733.2005.04054.xCrossRefGoogle ScholarPubMed
Willis, GB (1999) Cognitive Interviewing. A ‘How to’ guide. Available at: http://www.chime.ucla.edu/publications/docs/cognitive%20interviewing%20guide.pdfGoogle Scholar
World Health Organization (2002) WHO Definition of Palliative Care. Available at: http://www.who.int/cancer/palliative/Google Scholar