Objective of the studyThe aim of this study is to optimize the education, psychosocial counselling and guidance for (intended) parents, children conceived by means of DST and the sperm donors. It is the intention that with the findings of the…
ID
Source
Brief title
Condition
- Family issues
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Primary research variables / outcomes
The qualitative part:
Not applicable. It is a qualitative study, so we try to identify parameters.
The quantitative part:
a) Unmet Needs for Support: To identify which questions (intended) parents,
offspring (16 years and above) and donors have on all kinds of domains that are
related to DST, to what extent they experience DST as stressful and to what
extent these needs are unfulfilled we will use the format of Structured Problem
Analysis of Raising Kids (SPARK; Dutch translation of Vragenlijst Onvervulde
Behoeften aan Opvoedingsondersteuning, VOBO; Bertrand et al.,1998). The SPARK
format consists of a standardized structure in which the participant first are
asked what kind of problems they had experienced during the last 12 months,
followed by the question how stressful these problems were and whether one did
receive guidance to deal with these problems and if so, what the content of
this guidance and how helpful it was. Because of the sequential demand
structure questions will only be asked if that is needed. When participants did
not experience any problem, completing this instrument will take only a few
minutes. The original SPARK will be adapted for this study to: 1) the different
groups of participants ((intended) parents, children ages 16 and older and
donors) and 2) the subject of DST. The original items of the SPARK will be
replaced by domains addressing questions (intended) parents, children and
donors can have regarding to DST. These domains are determined on the basis of
the literature and as emerged from the qualitative part of the study (see the
above description of the qualitative part). A separate version of this
questionnaire will be developed for each target group (intended) parents,
children (only for those who know that they were conceived by means of DST) and
donors.
b) Psychosocial well-being: The psychosocial wellbeing (desire) parents and
donors is will be measured by the Adult Self-Report (ASR; Achenbach & Rescorla,
2003). Parents will be also asked to complete the Child Behavior Checklist on
their children (CBCL; Achenbach & Rescorla, 2000). Children aged 16-18 will be
asked to fill in the Youth Self-Report (for children up to 18 years old
(Achenbach & Rescorla, 1991), older children also will asked to complete the
ASR.
c) Emotional involvement and concern parents: The extent to which parents are
emotionally involved in rearing their child and are concerned about
childrearing and their child's development will be on the basis of the Dutch
translation of the Child Rearing Practices Report (CRPR; Block, 1965).
d) Childrearing related stress: Childrearing-related stress will be assessed by
three subscales from the Childrearing stress questionnaire (in Dutch:
Opvoedingsbelastingvragenlijst - OBVL; Vermulst, Kroes De Meyer, Nguyen, &
Veerman, 2012): (1) difficulties in the parent-child relationship, (2)
difficulties related to rearing the child, and (3) role limitations.
e) Partner relationship of the (intended) parents: To investigate the couple
relationship in heterosexual and lesbian couples we will use two instruments.
First we will use the *general relationship statisfaction
questionnaire* (Gerris et al., 1993; Wood et al, 2004, 2007) to meausure
general relationship satisfzction. Secondly, we will assess the satisfaction of
the partner as co-parent and for this we will use a subscale of *the Parental
Stress Index* (Abidin, 1983; Groenendaal et al., 1996; zie ook Bos et al.,
2004, 2007).
f) Socio-demographic data (intended) parents, children and donors: The
following socio-demographic background data is queried: age, biological sex
(assinged at birth), level of education, cultural background, family type (in
(intended) parents and children), age of child(ren), type of donor, infertility
history of the (intended) parents.
Secondary outcome
not applicable
Background summary
Background of the study
Donor Sperm Treatment (DST) is a widely used fertility treatment. In the
Netherlands, more than 1,000 women trying to get pregnant by means of DST are
starting annually. In the course of time the societal discourse surrounding DST
changed with consequences for both psychosocial screening and counselling and
guidance of (intended) parents and donors. In the 70s, for example, it was
recommended to be strictly secret about the genetic origin of the donor-
offspring although there was no empirical evidence for this non- disclosure.
Since the 80s there was a shift towards an approach in which openness was
advocated, and in this sense one followed the advice of the Human Rights
Council.
Psychosocial counselling and guidance for couples (heterosexual or lesbian) or
singles with the focus on awareness of the implications of starting a family
with semen from a third party, is strongly recommended in international
guidelines (Ethics Committee ASRM, 2013; HFEA, 2013; Greenfeld, 2008;
McWhinnie, 2001; Nice, 2013). Dutch professionals (gynecologists, nurses,
embryologists and counsellors) who are involved in DST, also emphasize the
importance of this psychosocial counselling, but they have to rely on a lack of
scientific knowledge about this content and the need for psychosocial
counselling and guidance of the (intended) parents, donor- children and donors
(Visser et al., 2012). The focus of the present study is on the needs of
(intended) parents, children conceived by means of DST and sperm donors and it
will be investigated what topics should be included in the abovementioned
psychosocial counselling and guidance.
Study objective
Objective of the study
The aim of this study is to optimize the education, psychosocial counselling
and guidance for (intended) parents, children conceived by means of DST and the
sperm donors. It is the intention that with the findings of the present study
we can develop in the future quality based standards and guidelines for
education, psychosocial counselling and guidance regarding to DST. The results
of the study will also provide information based on which in the future it is
possible to develop methods, interventions and guidelines for psychosocial
counseling and guidance for individuals dealing with oocyte donation.
Study design
Research design
The study consists of two parts: a qualitative and a quantitative part.
A)
In the qualitative part, data will be gathered by means of individual,
semi-structured in-depth interviews with (intended) parents, children aged 16
and older and donors. The interviews with the parents and donors have already
taken place and the Medical Ethical Committee (METC) of the AMC did approved
this part of the study (see Project: METC 10/302; submitted by Drs M. Visser).
The interviews with the intended parents and children (16 years and older) have
yet to take place and with this request we are asking the METC for permission
to start with this part.
The interviews will be held on the basis of a *topic list*, which will be based
on the literature and professional experience of the research team. All
interviews will be tape-recorded and ad verbatim be issued.
Intended parents will be recruited in two ways:
1) by announcements on Facebook, Twitter and the website of patient association
Freya. Intended parents who will respond on this announcement will get a
patient information letter with the objectives of the qualitative research.
2) the Centre for Reproductive Medicine (CRM) of the AMC and MCK Fertility
Centre will inform their patients who want to make us of sperm donation.
The offspring who were conceived by means of DST and who are 16 year or older
also will be contacted in several ways:
- through *Stichting Donor Kind* (association for offspring conceived by means
of DST)
- via Fiom
- through announcements on social media, websites, forums
- through Centre for Reproductive Medicine (AMC) and MCK Fertility Center: they
will contact the parents of the offspring conceived by means of sperm donation;
this because there might be children who do not know that they are conceived by
means of DST and we want to avoid that the disclosure will be forced through
our letter. Children will be contacted by the parents and the consent of the
parents.
The interviews will also be included children who have already had contact with
their donor.
B)
The quantitative part consists of a digital questionnaire on a protective
website (there will be also a pencil-paper version available for participants
who prefer to fill out the questionnaire in this way). This questionnaire will
be administered to a larger group of participants consisting of (intended)
parents, offspring (older than 16 years old) conceived by means of DST and
sperm donors. This with the aim to explore what needs for guidance, information
and counselling they have and which of these needs are unfulfilled. The items
for the questionnaire (prepared according to the format of the VOBO- see below)
used in the quantitative part, will be based on the findings from the
semi-structured interviews (qualitative part). In the quantitative part we will
also investigate the associations between the unmet needs for guidance
regarding issues related to DST and the daily functioning of (intended)
parents, the offspring (16 years and older) and donors (emotional involvement
and concern, childrearing-related stress, partner relationship, psychosocial
well-being of the (intended) parent / offspring / donor) and to the association
with socio-demographic background characteristics, family type and type of
donor, age of the offspring, and openness about sperm donation.
Participants ((intended) parents, offspring 16 years and older, and donors) for
the quantitative part are also recruited through social media (Facebook and
Twitter), via websites and forums (including Freya St. Donor Child, Fiom) and
via the Centre for Reproductive Medicine (AMC) and MCK Fertility Center. In
addition, participants who indicated that they want to be involved in the
qualitative part are informed about this part of the study and asked to
participate.
Study burden and risks
Nature and extent of the burden and risks associated with participation,
benefit and group relatedness
The qualitative part:
The effort for the participants (target research groups: a. (intended) parents
and children older than 16 years old) is taking part in an interview of 1 to
1,5 hours. The estimate of the duration of an interview is based on the earlier
interviews with parents and donors (which METC has approved; see Project METC:
10/302). An interview may take place at home of the participant or at the
University of Amsterdam (depending on the choice of the participant).
Psychological inconvenience is not expected; although we realize that the
interview can be confronting and might effecting someone. In the Patient
Information Folder (PIF) potential participants can read where the research is
about, but when their experiences about the effect are different than what we
expect, participants can get support from a professional counselor (contact
details are given). In the PIF it will make clear to the intended parents that
not willing to take part of the study will not influence their (medical)
treatment at the Centre for Reproductive Medicine (AMC) and MCK Fertility
Center.
It is expected that by taking part in the study participants will receive
attention to their (specific) situation and that they can express their
experiences. With their experience they can contribute to the further
professionalism of psychosocial guidance and counselling of (intended) parents,
children and donor sperm donors by DST. This may outweigh the emotional
inconvenience participation in the study could give. The professional guidance
that is offered seems to be justified and sufficient.
The quantitative part
It is estimated that completing the online questionnaire (whose data are stored
on a secure server) takes between 30 to 40 minutes. Potential respondents will
be drawn to the estimate duration of completing the online questionnaire in the
PIF.
Also for the quantitative part we do expected that taking part will be
psychological inconvenient for the participants. The PIF will indicate where
the research is about and that when they want participants can get support from
a professional counselor (contact details are given) after they have complete
the questionnaire. This information (including the contact information of the
professional counsellor) will also be once more at the end of online survey.
In the PIF for the intended parents it will be clearly stated that treatment
will not withheld if they are not willing to take part at our study.
Also in this part of the research it is expected that respondents will receive
attention to their (specific) situation and that they can reflect on their
needs for guidance and possible background of their needs.
Meibergdreef 9 Meibergdreef 9
Amsterdam 1105 AZ
NL
Meibergdreef 9 Meibergdreef 9
Amsterdam 1105 AZ
NL
Listed location countries
Age
Inclusion criteria
For qualitative part:
- intended parents who want to use donor sperm treatment (DST)
- donor-offspring aged 16 and older (and who know they are conceived by DST)
For quantitative part:
- intended parents who want to use DST
- parents who conveiced by using DST
- donor-offspring aged 16 and older (and who know they are conceived by DST)
- sperm donors
Exclusion criteria
- (intended) parents, donor-offspring not using DST of born after DST
- men who did not donate sperm for DST
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
In other registers
| Register | ID |
|---|---|
| CCMO | NL53349.018.15 |
| OMON | NL-OMON20189 |