Development and evaluation of a combined story and fact-based educational booklet for patients with multiple brain metastases and their caregivers

Abstract

The aim of our study was to design and evaluate the impact on informational satisfaction of a combined story and fact-based educational booklet designed for patients with multiple brain metastases. Phase A evaluated the preference of participants for combined, fact, or story-based writing style. Based on these results, a resource was developed using a combined story and fact-based approach. Patients with newly diagnosed brain metastases and their caregivers read the booklet. Satisfaction was evaluated using the Information Satisfaction Questionnaire and Client Satisfaction Questionnaire. Anxiety was evaluated before and after reading using the State Trait Anxiety Inventory. Ninety-one patients participated in this study. In Phase A, 51% of patients expressed a preference for the combined story and fact-based approach. In phase B, participants expressed high satisfaction for both the informational content and the overall satisfaction towards the pamphlet. The level of anxiety before reading the booklet was lower for caregivers than patients. Anxiety score was increased in the caregiver group after reading the booklet. This was unchanged in the patient group. Both patients and caregivers endorsed the resource. The increase in anxiety in caregivers suggests the tool has been effective in conveying serious prognostic implications.

Educação em saúde e final de vida no hospital

“…Artigos de revisão 11 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28 Artigos originais 31 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59 Desenho metodológico Quantitativo 18 18,19,20,21,27,30,34,38,39,40,41,42,44,45,48,53,54,55 Qualitativo 18 22, 23, 24, 25, 26, 27, 28, 31, 32, 33, 35, 36, 37, 43, 49, 51, 52, 56 Métodos mistos 5 29, 47, 50, 57, 58 Quanti-qualitativo 1 59…”

“…Narrativas também foram apresentadas em livro. Elas foram relatadas a partir de situações experienciadas por pacientes com metástases cerebrais e tratavam acerca da radioterapia, dos efeitos colaterais do tratamento, da redução de corticosteroide e da inclusão em cuidados paliativos (40). Igualmente, por meio de narrativas de cuidadores familiares, registradas em dvd, relatou-se sobre como se tornaram cuidadores e se adaptaram para cuidar da pessoa em final de vida, além de como enfrentar o óbito e o luto (46).…”

Information concealment in palliative patients: Development and pilot study of a new scale for caregivers

“…However, IC has been shown to have relevant negative psychological effects on patients, including higher reported pain, decreased autonomy, depressive symptoms, lack of control, fear, anguish, lack of communication, isolation and feelings of loneliness and being deceived (Costa, Franciolli, et al, 2019;Costa, Teixeira, et al, 2019;Díaz-Cordobés et al, 2012;Lemus-Riscanevo et al, 2019;Martín, 2011;Montoya et al, 2010;Sutar et al, 2019;Tuca et al, 2020). On the other hand, associations have been found between the desire to receive information or actually receiving it and greater perceived satisfaction and greater satisfaction with the information received (Kitamura et al, 2011;Rumpold et al, 2015). In addition, well-informed patients have better quality of life and less anxiety (Montoya et al, 2010).…”