Development and Evaluation of an Information Booklet for Grandparents of Children With Cancer

Abstract

The needs of grandparents of children with cancer are often overlooked. This study evaluated a new educational resource (booklet) targeted toward grandparents of children with cancer. A multidisciplinary committee developed a printed booklet targeting grandparents' information needs identified in a previous study. Seventy-nine grandparents of children with cancer (63% grandmothers, Mage = 66.04, SD = 7.0 years) read and evaluated the booklet. Quantitative responses were analyzed with SPSS, and qualitative responses were thematically coded using QSR NVivo 10. Grandparents' responses to the resource were positive, with 92% finding the booklet "informative" (n = 73), "useful" (84%, n = 66), and "very relevant" (50%, n = 39). Qualitative responses reflected an appreciation for the booklet's readability, informative content, and quotes from grandparent experiences. The developed booklet was highly acceptable to grandparents of children with cancer and addressed their need for reassurance and guidance on obtaining further support. This study demonstrates the feasibility of developing and evaluating a targeted resource to meet grandparent's identified information needs.

A experiência dos avós de crianças hospitalizadas em Unidade de Terapia Intensiva Pediátrica

“…Some studies have been developed to better understand these needs and to define strategies to help meet them quickly and promptly. This helps lessen the suffering of grandparents, who can receive the strength and resources necessary to their own stability, and thus being able to take on their supporting role (9)(10)18) .…”

“…In the context of childhood cancer, a booklet with information about the illness, treatment, prognosis, and procedures, and hospital routines was developed. It contains information about family and relationship management during this crisis, and how grandparents can help their children and family members in a practical way (18) .…”

Grandparents: A hardly recognized part of the childhood cancer family

“…Grandparents often get their information second‐hand via the parents and do not want to burden the parents with their own questions and anxiety. Wakefield and her group have created and implemented a questionnaire to measure the information needs and, based on these findings, an information booklet . Grandparents are most interested in the chances of survival as well as possible consequences of the cancer and treatment.…”

Grandparents of children with cancer: Quality of life, medication and hospitalizations

“…This lack of support and information may exacerbate concerns about their grandchild or feelings of isolation . One way to ameliorate this gap is through additional psychosocial intervention and information provision tailored to grandparents’ needs . Supportive care interventions with caregivers of adult cancer patients consistently show improvements in a number of outcomes including QOL .…”

“…[2][3][4] One way to ameliorate this gap is through additional psychosocial intervention and information provision tailored to grandparents' needs. 24,25 Supportive care interventions with caregivers of adult cancer patients consistently show improvements in a number of outcomes including QOL. 26,27 When family caregivers are well supported, the well-being of the cancer patient may also be significantly enhanced, 28 highlighting the importance of extending supportive care interventions beyond the traditional family unit.…”