Development and psychometric testing of a measure of perception of care dependency in cancer patients

Background: The number of patients with comorbidities and cancer-related disabilities is expected to increase in the near future. Care dependency is central to nursing and can be associated with suffering, humiliation, but also with positive balances and personal developments. Understanding the patients’ perception of care dependency enables nurses to better meet the patient’s needs. No instrument is available to evaluate patient’ perceptions about their dependency experience. Material and methods: This study is part of an ongoing project aimed to develop and validate an instrument to measure the patient’s perception of nursing care, in particular the patient’s basic emotions anger, guilt, shame and sadness. The project follows the European Statistical System’ Guidelines for Instrument Development including five steps: conceptualization, questionnaire design, pre-field and field testing, final validation. Conceptualisation implied the formation of concepts from a meta-synthesis and qualitative studies on cancer patients with dependence that were operationalized into indicators. Questionnaire design involved a panel of clinical nurses, psychologists and experts in questionnaire design who met to identify the wording and structure of the questionnaire draft. Pre-field testing encompassed evaluation of the questionnaire content validity by clinical nurses’ and its revision by questionnaire design experts. Field test aimed at improving the questionnaire was conducted by clinical psychologists and nurse researchers using observational and cognitive interviews, behaviour coding scheme and respondent debriefing. Retrospective think aloud, retrospective probing, verbal paraphrasing and evaluating the response latency were used as cognitive interview methods. Results: From an initial pool of 63 items questionnaire design produced a 25-item draft. We enrolled 13 patients for pre-field test and 12 patients for field test. After prefield and field test the wording of several items, the questionnaire layout and the answers’ structure were modified to increase clarity and 6 items were removed producing a 19-item tool. Conclusions: The final questionnaire is being validated in a multicentre study. This study will provide oncology nurses with an instrument based on patients’ accounts, valid and reliable to assess the patient’ perceptions of care dependency, enabling them to better meet the dependent patient’ needs through personalized quality care.