Translation and cross-cultural adaptation of the Portuguese version of the Needs Assessment of Family Caregivers-Cancer scale [abstract]

Abstract

Background: Cancer represents a significant challenge not only for patients but also for their informal caregivers—family members or close friends who provide unpaid, ongoing support. These individuals often assume essential caregiving roles without formal training or adequate support, leading to high levels of distress and caregiver burden. This can affect both their well-being and the quality of care provided to the patient. Evidence suggests that the needs of informal caregivers in oncology are frequently unmet. Studies highlight persistent gaps in access to information on treatment, disease progression, side effects, and caregiving strategies (Gjerset et al., 2023), contributing to uncertainty and emotional strain (Lambert et al., 2012). While international tools have been developed to assess these needs, most instruments available in Portugal are overly general and fail to reflect the complexity of caregiving in oncology. Objectives: This study focused on the translation and cultural adaptation of the Needs Assessment of Family Caregivers–Cancer (NAFC-C; Kim et al., 2010) into Portuguese. The scale, based on Need Fulfillment Theory, evaluates the perceived importance of caregivers' needs and their satisfaction with how well those needs are fulfilled. Methods: The adaptation followed best practices for self-report measures and included: (i) Forward and backward translation with reconciliation by a bilingual team; (ii) Expert panel review (n=5) for content validity; and (iii) Cognitive interviews (n=3) to assess linguistic clarity and contextual appropriateness. Results: The translation process spanned two months and produced two initial versions, reconciled into a culturally appropriate final version. Content validity was rated as excellent; however, 3 of the 5 experts suggested refinements to items concerning health insurance, due to differences between the U.S. and Portuguese healthcare systems. Cognitive interview participants had varied educational backgrounds and at least one year of caregiving experience. Most items, instructions, and response options were well understood. Nonetheless, minor semantic adjustments were needed to enhance clarity and cultural relevance. In total, 7 of the 27 items were slightly revised. Conclusions: This study provides a culturally adapted Portuguese version of the NAFC-C scale, supporting future validation. Its use may enhance the identification and fulfillment of caregiver needs in oncology care.