Background and context: When a child has cancer, the entire family is affected. Parents and caregivers lose work days while caring for the child. Many parents blame themselves and wonder if some action or decision of theirs contributed to; or caused the cancer. In addition, and especially for families falling within the low socioeconomic demographic groups, there may be poor understanding of the treatment process and expectations from treatment. Aim: To assess the most common challenges or concerns faced by parents, family members, or caregivers of a child living with cancer in Nigeria. Strategy/Tactics: A series of 10 focus group sessions were held with different groups of parents, family members, or other caregivers of children being treated for cancer at 2 teaching hospitals in Nigeria. Groups consisted of a minimum 8, and maximum of 12 participants in addition to a moderator. At the beginning of every session, participants were asked to submit 2 most pressing questions. Open-ended questions were also used with every attendee given a turn to give their answer. Participants were also given a chance to ask questions or bring up issues they had difficulty with. The single most prevalent concern raised in every focus group was lack of information or understanding. The 2 most common questions were: 1. What is cancer? 2. Why does my child have cancer? Program/Policy process: Data from the sessions were painstakingly compiled. The questions and concerns the attendee raised; and the degree of understanding they had regarding the diagnosis, treatment process, and expectations bring and after treatment. This data were collated and a team of experts including oncologists, nurses, and health workers in cancer were brought together to answer the questions. A compilation was made and a plan to disseminate the information was formulated. This culminated in the publishing of a free childhood cancer handbook; the first of its kind in Nigeria; with plans to translate the handbook into the common colloquial and vernacular languages in Nigeria. Outcomes: Participants of the focus groups were given a handbook, including some whose child had passed on since the sessions were held. 29% of the original participants were unreachable or declined the handbook. They were assessed to see if the handbook provided information that could have eased their cancer journey. 91% of assessed participants responded that having the handbook at diagnosis would have significantly increased their level of information and made the cancer journey easier. [Figure: see text][Figure: see text] The most appreciated information in the handbook was contact details of an organization dedicated to supporting them financially to pay treatment fees. What was learned: Many Nigerian families go through the entire childhood cancer journey completely in the dark. No dedicated information source on child cancer exists in Nigeria. Many parent and caregiver questions remain unanswered, and concerns remain unresolved.[Figure: see text]
Exploring the Family Expectation of Patients Undergoing Surgery: A Qualitative Study
