Background and Aim: Siblings to a brother or sister with cancer have reported
difficulties dealing with such things as their parents' suffering, loneliness in relation
to their own feelings as well as uncertainty regarding their brother's/sister's
treatment, prognosis and survival. Siblings also struggle with fear of death and dying,
and unresolved grief. Unfortunately, siblings are a forgotten group both in society,
within the family, in health care, in school, and in research even if there has been a
huge improvement the last 10 years. These children's needs must be identified and handled
during the illness trajectory as a way of supporting their challenging situation and
prevent avoidable psychological distress. Nevertheless, there exists no validated
standardized assessment instrument in Swedish that measure the needs of these children
even if it is well known that it is beneficial for emotional and psychological well-being
to use assessment instrument. Moreover, no instrument in Swedish exists that identify
children with prolonged pre-death grief despite that prolonged grief during illness is
associated with psychological distress. This study therefore aim to translate, culturally
adapt, and evaluate the psychometric properties of the Swedish version of the Sibling
Cancer Needs Instrument (SCNI) and Prolonged Grief Disorder (PG-12) among children and
youths who have a brother or sister with cancer.
Material and Methods: Present instruments will be translated and culturally adapted
according to the World Health Organization's (WHO) guidelines. After that, the
psychometric properties of the Swedish version of SCNI and PG-12 will be examined. The
Swedish version of the SCNI and PG-12 will be revised by a group of several experts in
psychology, paediatric oncology, and family health, for its face and content validity. In
addition, pre-test respondents will include approx. 10 siblings. They will be recruited
from one of the six pediatric oncology centers in Sweden, the home care for children at
the same hospital, and at the hospice for children and youths in Sweden (Lilla
Erstagården) where established collaborations with clinicians exists today with sibling
supporters. Information about the study will be given by the researchers who also ask for
informed consent. Children aged 15 years and older consent themselves while those between
12-14 years have to have consent from their guardian(s)/parent(s). Pre-test respondents
will be administered SCNI and PG-12 and be systematically debriefed. During debriefing,
siblings will be asked what they thought the question was asking, whether they could
repeat the question in their own words, what came to their mind when they heard a
particular phrase or term. They will also be asked to explain how they choose their
answer. These questions will be repeated for each item. The answers to these questions
should be compared to the respondent's actual responses to the instrument for
consistency. Respondents will also be asked about any word they did not understand as
well as any word or expression that they found unacceptable or offensive. Finally, when
alternative words or expressions exist for one item or expression, the pre-test
respondent should be asked to choose which of the alternatives conforms better to their
usual language. After that, siblings will be asked to participate in a web-survey. They
will be recruited from: 1) the six pediatric oncology centers in Sweden, 2) the hospice
for children and youths in Sweden (Lilla Erstagården), and 3) via advertisement on social
media, e.g. on Instagram at "Nära Cancer" and the Childhood Cancer Fund. The siblings
will also be identified by a sibling supporter at the six pediatric oncology centers and
Lilla Erstagården. The sibling supporters will invite the siblings to the study by giving
them a web address to a website where they will find information about the study. On the
website, the siblings could either go directly to the web-survey (if the sibling is 15
years or older) or register their interest to participate in the web-survey (if the
sibling is between 12-14 years). Parents of siblings who register their interest to
participate in the web-survey on the website (siblings aged 12-14 years), will be
contacted by a researcher via email or phone (depending on how they wish to be
contacted), and the parents/guardians and the sibling will be informed about the study,
and informed consent will be granted from both guardians/parents. Advertisement on social
media will take the siblings or parents/guardians to the same web-page/web-survey as
previously described.
Analysis: Descriptive statistics will be used to present demographic data and study
variables, including means and standard deviations, medians and quartiles, and
frequencies. We will use factor analysis in order to evaluate the fit of the models. A
sample size of 200 will be acceptable if the models are not too complex.