Cultural adaptation to Brazil of the questionnaire Costs of caring for children with cancer1

OBJECTIVE: to present the cultural adaptation of the questionnaire Costs of caring for children with cancer, offering a valid and reliable tool to assess the economic repercussions of childhood cancer for Brazilian families. METHOD: it is a methodological research with a cross-sectional design. The methodological framework to validate the questionnaire was a combined process that included seven steps: translation to Portuguese; first translated consensus version; evaluation by Expert Committee; consensus on the Expert Committee version; back-translation; consensus of back-translated versions; semantic validation. The study was conducted in two phases: phase one was the translation and back-translations process, with five expert committee members. Phase two was the semantic validation, with 24 participants, who answered an instrument about their impressions of the questionnaire and suggested modifications. RESULTS: in phase one, items were included, excluded, and replaced to make the content equivalent and valid for use with Brazilian context. In phase two, the majority of the participants were mothers, who made suggestions about the relevance and clarity of the items in the questionnaire. CONCLUSIONS: the authors discussed these recommendations and made adaptations, turning the questionnaire into a valid and reliable tool for application.

. The parents' role as caregivers of sick children changes with the new responsibilities that affect the time they have available, often implying in the loss of their employment (2) .
Psychological adjustments are needed (2) and, when they have other children, parental responsibilities need to be reorganized (3) .
Most of the caregivers who stay during hospitalization with their child with cancer are female, specifically mothers (2) . These women had lower education levels, often become unemployed, and have insufficient financial resources (4) . The focus of their lives is the care of their sick children, most often totally directing their attention at the sick child, even if they have other children at home. This new situation may cause conflicts in the family with other children and the husband/partner (4) . In some families, one or both parents must quit a job to dedicate time to their child's treatment (5) . Consequently, family income from these women or from the couple was compromised.
Most families of children with cancer often have limited time available due to the health care demands of children. Parents may lose their job, at a critical time when they need financial resources (6)(7) to cover the high costs of medications and medical care. Other financial expenses were incurred with transportation and meal expenses during hospitalizations and medical office visits (7) .
Changes in family dynamics, marital relationships, and social support entail additional difficulties that contribute to the increase in family costs. Families often restricted leisure activities or incurred additional debts to maintain normal activities. Families may increase loans through credit cards, or they may sell family goods or properties. Some parents held a second job or organized funding events to meet the financial burdens associated with health care of their children with cancer (7) .
Other negative consequences include changes in the parents' professional life. A study (8) developed in Sweden have associated the diagnosis of childhood cancer with both short-and long-term impact on parent's work status. Comparing the time of the diagnosis with one year after the end of the treatment, fewer fathers were at work and a greater proportion of mothers were on sick leave. Although the economic and working situation could be normalized with time, the income of the family was affected negatively after the diagnosis until three months after the end of the treatment (8) .
Given all the direct, indirect, and psychosocial costs associated with having children with cancer, there is very little in the literature that measured or quantified these costs, particularly in the context of Brazilian families.
However, there is a questionnaire available in English called the Costs of caring for children with cancer (9) . This questionnaire has not been translated in Portuguese, and has not been tested for use in Brazilian families.
Therefore, the purpose of this study was to present the cultural adaptation of this questionnaire, offering a valid and reliable tool to evaluate the economic repercussions of childhood-juvenile cancer in Brazilian families.

Study design
In this methodological research with a crosssectional design, a questionnaire to evaluate the family costs of care delivery to children and adolescents with cancer was subject to cultural validation.
The methodological framework to validate the questionnaire was an adaptation of the DISABKIDS Group's steps (10) . Another step indicated by Guillemin (11)  Pan R, Marques AR, Santos BD, Jacob E, Santos CB, Nascimento LC.

1) translation and back-translation of the questionnaire
Costs of caring for children with cancer (9) , which included these six steps explained before; and 2) semantic validation of the questionnaire adapted to the Brazilian Portuguese language and to the Brazilian culture.

Ethical aspects
The authors (9)

The Questionnaire
The questionnaire Costs of caring for children with cancer was originally developed in English by authors from the United Kingdom (9) . This questionnaire has 58 questions that included items: 1) demographic characteristics of parents (education, marital status, ethnic origin, number of children in the family, age children, gender); 2) clinical information (diagnosis, time since diagnosis, current treatment status); 3) current expenses related to illness (transportation to the hospital, clothing, phone calls); 4) employment (full/ part time status at the time of the diagnosis, as well as after diagnosis, employer attitude, role change, hours worked since the diagnosis, absence from work), and 5) public or charitable financial support received (sources, medical benefits, difficulties related to the application process for these benefits).

Phase I -Translation and Back-Translation
The translation was the first phase in the adaptation process of the questionnaire Costs of caring for children with cancer (9) . Two authors fluent in English and familiar with the research theme independently translated the questionnaire from the original English language to Brazilian Portuguese (translation I). Secondly, an assessment process was added to enhance the scientific rigor of the process. The assessment was made by an Expert Committee that included five nurses who were knowledgeable and experienced in the theme. The authors discussed and developed a consensus version.
The Expert Committee used an instrument for assessing equivalence between the original and translated versions of the questionnaire. This instrument was composed by multiple choice questions, which assessed whether the item was translated in accordance with the following assumptions: a) conceptual equivalence; b) equivalence of items; c) semantic equivalence; d) operational equivalence; and e) content validity (12)(13)(14) .
This instrument was designed to facilitate the analysis of the translation process developed by experts. To facilitate participants' evaluation, the Group (10) divided the questionnaire into subgroups, with a view to guaranteeing more reliable answers. The questionnaire had ten sections (sections A-J). The research team decided to make groups of two or three sections, ranging from 12 to 17 questions. These numbers of questions were thought to be reasonable so that each participant could evaluate the items appropriately, and minimize fatigue, time and effort for each participant. Each subset of items was then evaluated by three parents or caregivers for the children with cancer.  (15) .

Phase II -Semantic Validation
Descriptive statistics were used to determine frequencies and percentages of agreement on the items on the multiple choice questions. Items with agreement levels of 80% or more among the parent participants were considered (15) . The same analysis process was

Phase I -Translation-Back Translation
The translation process to Brazilian Portuguese took three months. To achieve a cultural adaptation worker included issues related to available benefits and family leaves allowed by Brazilian legislation for patients and parents of children with chronic illnesses (not specific to cancer). These issues also emerged from her professional experience in support groups for parents of children with cancer.
The translated questionnaire was forwarded to the Expert Committee for evaluation. After all Committee members had evaluated the questionnaire, a first version was obtained. Most items had 80% or more agreement among the Expert Committee (15) . Consensus could not be reached on some items, such as those related to education levels, and ethnicity categories, which was values. Therefore, we adopted the division according to education level defined in Brazilian law that regulates education, Law 9.394, issued in 1996 (17) .

Phase II -Semantic Validation
The semantic validation phase was spread over five months; two months for data collection and three months for data analysis. Participants were 20 mothers, three grandmothers and one sister. The level of education for half of the participants was primary education and the other half was secondary education, which is consistent with the recommendation by the Group (10) , to increase representativeness of the sample.

Discussion
The study demonstrated the cultural adaptation of the Brazilian version of the questionnaire, Costs of caring for children with cancer, originally developed for the British population. The instrument was used for evaluating the economic repercussions of children's cancer in British families. We followed a combined process of the two approaches (10)(11) to translate and culturally adapt this questionnaire for use in Brazilian Portuguese speaking families. We made modifications that included and excluded items (15) .
To our knowledge, this is the first Brazilian Portuguese questionnaire that specifically evaluated the family costs of care in children with cancer. Because of the lack of research devoted to this topic, we reviewed the literature and adapted the tool developed by the original authors (9) , Brazil is a country of continental dimensions and different cultural and social contexts, which can affect the adaptation and validation process about instruments for use in Brazilian parents or caregivers (10) .
It is, therefore, important to note that this was not a multicenter research, and would not be feasible to implement in other Brazilian regions, without further semantic validation in other areas. We found that the

Conclusions
We culturally adapted and validated the Costs of caring for children with cancer questionnaire for use in Brazilian Portuguese families, using the combined rigorous methods.
We found that parents, grandparents, and sibling participants in our study understood the items on the questionnaire and it was satisfactorily and acceptable.
They had no difficulty with the items during the entire cultural adaptation process, and the Brazilian Portuguese