Problems and needs in palliative care questionnaire – caregiver form (PNPC-c): a cross-cultural adaptation and validation into Spanish

Caregivers are the essential mainstay of care for patients under palliative treatment, and they experience problems and needs for which they require support, but these are rarely assessed. The Problems and Needs in Palliative Care questionnaire – caregiver form (PNPC-c) evaluates these issues, but it has not been adapted into Spanish. The aim of this study was to translate, cross-culturally adapt, and evaluate the psychometric properties to validate the PNPC-c into Spanish (PNPC-c SV ® ). The translation and a cross-cultural adaptation of the PNPC-c comprised direct and reverse translation, revision by a Delphi panel and a pilot study. The validation of the psychometric properties of the PNPC-c SV ® instrument were analyzed. The PNPC-c SV ® was validated with a group of 230 caregivers of palliative care patients. A response frequency analysis was performed to identify the 10 main problems and needs among caregivers. An inferential analysis was performed to compare the problems identified between those over and under 50 years of age and between men and women. The PNPC-c SV ® developed led to the reduction of the questionnaire from the initial 67 items to 48 items per section (problems and needs). The main problems reported were continuing their social activities (78.3%) and fear of an unpredictable future (77.3%). The need that required the most attention from caregivers was fear of an unpredictable future (56.1%), followed by not wanting to leave the patient alone (50%). Significant differences were observed in the identification of problems between men and women as well as between caregivers older and younger than 50 years of age. The internal consistency using Cronbach’s α was 0.959, with problems and needs presenting a value of 0.907 and 0.940, respectively. The PNPC-c SV ® is a useful tool to assess the problems and needs of Spanish-speaking caregivers of palliative care patients. Mapping the problems and needs of caregivers allows planning and organizing effective care services, thereby improving the quality of life of caregivers and patients.