Purpose. Patient-reported financial effects of a tumor disease in a universal healthcare setting are a multidimensional phenomenon. Actual and anticipated objective financial burden caused by direct medical and non-medical costs as well as indirect costs such as loss of income, can lead to subjective financial distress. To better understand the reasons for subjective financial distress and to identify aggravate (obstacles) and preventive (resources) determinants, the present study inquires how cancer patients interpret and explain the level of subjective distress due to financial consequences of their disease.
Methods. Semi-structured interviews with n=18 cancer patients were conducted between May 2021 and December 2021. Patients were recruited based on a purposive sampling strategy in outpatient and inpatient settings. The interviews were audio-recorded, transcribed verbatim, and analyzed using qualitative content analysis.
Results. When explaining the degree of their subjective distress, interviewees refer to both distress-preventing and distress-increasing influencing determinants. Distress-preventing factors are material, social and systemic resources such as access to social and health care service; cognitive coping strategies; personal character traits and change of attitude. Distress was increased by administrative hurdles and expected objective financial burden.
Conclusion. Subjective financial distress depends on material, social, systemic and personality-specific determinants. To address them, not only individual counselling is needed, but also socio-politicalchanges.
Trial registration number NCT05319925
Anhand der vorliegenden Fallarbeit möchten wir Hintergrund, Entstehung und Durchführung der Würdezentrierten Therapie in einem deutschen Allgemeinkrankenhaus vorstellen. Die Würdezentrierte Therapie (engl. Dignity Therapy) ist eine psychologische Kurzintervention für Patienten am Lebensende. Sie wurde in Kanada von Harvey M. Chochinov und dessen Forschungsgruppe im Rahmen empirischer Studien entwickelt. Ziel der Intervention ist die Stärkung der individuellen Würde von Patienten.
ObjectivesTo revise the 37-item Advanced Cancer Patients’ Distress Scale (ACPDS) regarding its content, comprehensibility, applicability, and relevance by healthcare professionals (HCPs) and patients in order to enhance an existing instrument that is appropriate for the needs of patients with advanced cancer admitted to palliative care.DesignA preliminary revision of items regarding psychometric indices and relevance to initially shorten the scale, complemented by cognitive interviews with patients combining think-aloud and verbal-probe techniques and an HCP focus group on the detected remaining items. Interviews and the focus group were audio-recorded, transcribed verbatim and analysed using MAXQDA.SettingThe study took place at a German palliative care unit.Participants10 patients were interviewed (50% female) and 6 HCPs (3 physicians, 2 nurses and 1 psychologist) participated in the focus group.Outcome MeasuresComprehensibility, applicability, and relevance of the ACPDS were evaluated.ResultsBased on the psychometric revision, a reduced number of 17 items was discussed by the HCP focus group and within cognitive interviews with patients. For the rest of the analysis of the HCP focus group and the patient interview data, the introduction of the ACPDS was simplified and adapted to everyday language. As recommended by HCPs and patients, the example question was replaced. Nine items were reworded to boost clarity, openness, redundancy and mitigation. Three items were eliminated, and another three items were added.ConclusionWith this revised 17-item version of the ACPDS, we constructed an instrument that seems to be appropriate for the needs of patients with advanced cancer in a palliative care setting. In the next step, the shortened scale will be tested on psychometric data and validated by a large sample of inpatients on palliative care suffering from advanced cancer.Trial registration numberDRKS ID: DRKS00022425.
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