Method
In this study, phenomenology has been chosen as the research
design and Giorgi’s (1985, 1997) approach has been applied for
analyzing the data. The aim of phenomenological research is to
understand the meaning of the informants’ life world, and the
question of validity is based on the degree to which the researcher
has been able to grasp this meaning (Kvale, 1996).
The first author conducted qualitative research interviews with
14 women at least one year after they had undergone prophylactic
removal of their ovaries due to a risk of ovarian cancer within their
family. Data were collected through individual interviews from
2007 to 2008. The women in the study were asked open-ended
questions regarding their lived experiences in families with a risk
of hereditary breast and ovarian cancer. Examples of themes during
the interviews were experiences concerning replacement therapy
with hormones after prophylactic removal of the ovaries and
experience of relationships (Mæland et al., 2010). When we reanalyzed
the statements of the women interviewed, we found new
important findings that are presented in this article.
The women gave consent to use an audiotape during the interviews,
which lasted approximately one hour and took place in
the participant’s home or in a suitable office. The anonymization of
the audiotaped interviews was emphasized before each interview
began. Afterwards the interviews were transcribed and analyzed in
accordance with Giorgi’s four-step analysis (1985). Conversations
regarding sensitive conditions demand an interviewer’s ability to
protect the interviewee’s privacy. The women participating in the
study were all given a telephone number of a genetic counselor, in
case awoman, following the interview,would come to feel the need
of communicating with an experienced counselor.
Ethical considerations
This study is approved by the Regional Ethics Committee in
Western Norway.
Recruitment and sample
The women in this study were recommended by a geneticist to
undergo prophylactic removal of their ovaries due to research
indicating that women who have inherited mutation in the breast
and ovarian cancer genes BRCA1 or BRCA2 have a substantially
elevated risk of developing breast and ovarian cancer (Rebbeck
et al., 2009).
In Norway, medical practice in terms of genetics changed in
2006: if mutation in the BRCA1/2 genes related to hereditary
breast-ovarian syndrome has not been proven after full genetic
testing with sequencing, the risk of belonging to a family with
hereditary breast ovarian cancer is deemed low, and a woman will
not be recommended to undergo risk-reducing prophylactic
removal of her ovaries. The women in the current study, however,
all underwent limited genetic testing, and had prophylactic surgery
of their ovaries before this change in medical practice.
The intended sample of the study was women between 38 and
50 years of age with an uncertain genetic status who belonged to a
risk group for hereditary breast and ovarian cancer. A written
request was sent from a medical genetic department in Norway to
31 women who met the inclusion criteria. Of these, 15 women gave
written consent to participate, and of these, one eventually dropped
out of the study.
The mean age of the women interviewed was 49 years.
The mean age of the participants at the time of prophylactic
removal was 44.5 years.
The oldest woman interviewed was 57 years of age. The youngest
(two) were 39 years old.
The oldest woman at the time of surgery was 54 years old. The
youngest woman was 37 years old.
Method
In this study, phenomenology has been chosen as the research
design and Giorgi’s (1985, 1997) approach has been applied for
analyzing the data. The aim of phenomenological research is to
understand the meaning of the informants’ life world, and the
question of validity is based on the degree to which the researcher
has been able to grasp this meaning (Kvale, 1996).
The first author conducted qualitative research interviews with
14 women at least one year after they had undergone prophylactic
removal of their ovaries due to a risk of ovarian cancer within their
family. Data were collected through individual interviews from
2007 to 2008. The women in the study were asked open-ended
questions regarding their lived experiences in families with a risk
of hereditary breast and ovarian cancer. Examples of themes during
the interviews were experiences concerning replacement therapy
with hormones after prophylactic removal of the ovaries and
experience of relationships (Mæland et al., 2010). When we reanalyzed
the statements of the women interviewed, we found new
important findings that are presented in this article.
The women gave consent to use an audiotape during the interviews,
which lasted approximately one hour and took place in
the participant’s home or in a suitable office. The anonymization of
the audiotaped interviews was emphasized before each interview
began. Afterwards the interviews were transcribed and analyzed in
accordance with Giorgi’s four-step analysis (1985). Conversations
regarding sensitive conditions demand an interviewer’s ability to
protect the interviewee’s privacy. The women participating in the
study were all given a telephone number of a genetic counselor, in
case awoman, following the interview,would come to feel the need
of communicating with an experienced counselor.
Ethical considerations
This study is approved by the Regional Ethics Committee in
Western Norway.
Recruitment and sample
The women in this study were recommended by a geneticist to
undergo prophylactic removal of their ovaries due to research
indicating that women who have inherited mutation in the breast
and ovarian cancer genes BRCA1 or BRCA2 have a substantially
elevated risk of developing breast and ovarian cancer (Rebbeck
et al., 2009).
In Norway, medical practice in terms of genetics changed in
2006: if mutation in the BRCA1/2 genes related to hereditary
breast-ovarian syndrome has not been proven after full genetic
testing with sequencing, the risk of belonging to a family with
hereditary breast ovarian cancer is deemed low, and a woman will
not be recommended to undergo risk-reducing prophylactic
removal of her ovaries. The women in the current study, however,
all underwent limited genetic testing, and had prophylactic surgery
of their ovaries before this change in medical practice.
The intended sample of the study was women between 38 and
50 years of age with an uncertain genetic status who belonged to a
risk group for hereditary breast and ovarian cancer. A written
request was sent from a medical genetic department in Norway to
31 women who met the inclusion criteria. Of these, 15 women gave
written consent to participate, and of these, one eventually dropped
out of the study.
The mean age of the women interviewed was 49 years.
The mean age of the participants at the time of prophylactic
removal was 44.5 years.
The oldest woman interviewed was 57 years of age. The youngest
(two) were 39 years old.
The oldest woman at the time of surgery was 54 years old. The
youngest woman was 37 years old.
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