Parental Cancer: Acceptance and Usability of an Information Booklet for Affected Parents

Abstract

BackgroundParents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: (1) investigating the acceptability and usability of the information booklet, (2) determining parental information needs, and (3) collating suggestions for implementation. Finally, we adapted the booklet according to the findings.MethodsWe interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis.Results(1) Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. (2) Following dimensions were identified as information needs: (a) communication, (b) support offers, (c) children’s disease understanding and needs, (d) organization of family life, (e) competence in parenting, and (f) sources of additional information material. (3) The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings.ConclusionIndicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated.

Adolescentes Que Experimentan Cáncer en Sus Padres: Un Estudio Cualitativo

“…El conocimiento sobre el cáncer y la información sobre tratamientos y pronóstico son referidos en la literatura como la necesidad más reconocida por los adolescentes, sin embargo, muchas veces no se satisface 2,5,17 . Algunos participantes mencionaron la necesidad de información; otros tenían la información necesaria; y otros no supieron cómo actuar cuando se enteraron de la enfermedad.…”

A case study of an adolescent according to A Model of Children’s Adjustment to Parental Cancer

“…Considering the repercussions and challenges that the disease poses, not only to the sick but also to the children, an inclusive nursing intervention by the binomial (5) is necessary. However, despite the impact of cancer on the parent-child binomial, there are no specific guidelines regarding care and relationship with families experiencing such a reality (6) .…”

Estudo de caso de um adolescente segundo o Modelo Teórico do Ajuste ao Cancro Parental

“…Considerando as repercussões e desafios que a doença coloca, não só aos doentes mas também aos filhos, torna-se necessária uma intervenção de enfermagem inclusiva da díade (5) . No entanto, apesar do impacto do cancro na díade pais-filhos, não existem orientações específicas relativas aos cuidados e relação com as famílias que experienciam tal realidade (6) .…”