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Counsellors’ practices in donor sperm treatment

Visser, M.; Gerrits, T.; van der Veen, F.; Mochtar, M.

Published in:Human Fertility

DOI:10.1080/14647273.2018.1449970

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Creative Commons License (see https://creativecommons.org/use-remix/cc-licenses):CC BY-NC-ND

Citation for published version (APA):Visser, M., Gerrits, T., van der Veen, F., & Mochtar, M. (2019). Counsellors’ practices in donor sperm treatment.Human Fertility, 22(4), 255-265. https://doi.org/10.1080/14647273.2018.1449970

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Download date: 27 Aug 2020

ORIGINAL ARTICLE

Counsellors’ practices in donor sperm treatment

Marja Vissera , Trudie Gerritsb, Fulco van der Veena and Monique Mochtara

aDepartment of Obstetrics and Gynaecology, Centre for Reproductive Medicine, Academic Medical Centre Amsterdam, University ofAmsterdam, Amsterdam, The Netherlands; bFaculty of Social and Behavioral Sciences, Sociology and Anthropology, University ofAmsterdam, Amsterdam, The Netherlands

ABSTRACTWhen intended parents choose to have donor sperm treatment (DST), this may entail wide-ranging and long-lasting psychosocial implications related to the social parent not having a gen-etic tie with the child, how to disclose donor-conception and future donor contact. Counsellingby qualified professionals is recommended to help intended parents cope with these implica-tions. The objective of this study is to present findings and insights about how counsellors exe-cute their counselling practices. We performed a qualitative study that included 13 counsellorsworking in the 11 clinics offering DST in the Netherlands. We held a focus group discussion andindividual face-to-face semi-structured interviews, which were fully transcribed and analysedusing thematic analysis. The counsellors combined screening for eligibility and guidance withinone session. They acted according to their individual knowledge and clinical experience and haddifferent opinions on the issues they discussed with intended parents, which resulted in largepractice variations. The counsellors were dependent on the admission policies of the clinics,which were mainly limited to regulating access to psychosocial counselling, which also lead to avariety of counselling practices. This means that evidence-based guidelines on counselling inDST need to be developed to provide consistent counselling with less practice variation.

ARTICLE HISTORYReceived 28 August 2017Accepted 19 December 2017

KEYWORDSDonor sperm treatment;counsellors;counselling; parents

Introduction

When men and women wish to embark on donorsperm treatment (DST) for procreation and do notorganize this with a donor known to them, they lookfor medical assistance in a fertility clinic (ESHRE taskforce on Ethics and Law, 2002). The decision of intendedparents to apply for donor-conception may entail wide-ranging and long-lasting psychosocial implications forthemselves and their future children; the social parentand the child do not have a genetic tie, there is a thirdparty in the family and parents and children need tocope with reactions from their wider family and socialenvironment (Blyth, 2012; Culley, Hudson, & Rapport,2013; Grace, Daniels, & Gillett, 2008; Jadva, Freeman,Kramer, & Golombok, 2010). Families with children afterDST have to deal with anxiety about the lack of geneticties and with non-disclosure or disclosing the geneticorigins of their child (Golombok, Ilioi, Blake, Roman, &Jadva, 2017; Haimes, 1998; Indekeu, D’Hooghe, Daniels,Dierckx, & Rober, 2014; Kirkman, 2003; McWhinnie,2000). In several Western countries, donor-anonymity is

forbidden and practices on disclosure have shifted fromsecrecy to openness (Freeman, Zadeh, Smith, &Golombok, 2016; Isaksson, Sydsj€o, Skoog Svanberg, &Lampic, 2012; Readings, Blake, & Casey, 2011;S€oderstr€om-Anttila, S€alevaara, & Suikkari, 2010). Asparents are often uncertain about when and how toshare donor-conception with their child, family andfriends, how to consider the position of the donor andwhat to expect from possible future contact betweentheir child and the donor, counselling on disclosure andpossible future contact with the donor are of greatvalue. Counselling is now advised as an integral part ofDST (Cousineau & Domar, 2007; Daniels, Gillett, & Grace,2009; ESHRE task force on Ethics and Law et al., 2007;Freeman et al., 2016; Greenfeld, 2008; Hammarberg,Carmichael, Tinney, & Mulder, 2008; Indekeu et al., 2013;Indekeu et al., 2014; Isaksson et al., 2012; McWhinnie,2001). The Ethics Committee of the American Society ofReproductive Medicine (ASRM) has recommended thatmen and women applying for DST are not to be treatedbefore being given the opportunity to receive specialistpsychosocial counselling (ASRM, 2013). In the UK it is a

CONTACT Marja Visser m.visser@amc.uva.nl Department of Obstetrics and Gynaecology, Centre for Reproductive Medicine, Q4 room 142,Academic Medical Centre, Meibergdreef 9, Amsterdam 1105AZ, The Netherlands� 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed,or built upon in any way.

HUMAN FERTILITY2019, VOL. 22, NO. 4, 255–265https://doi.org/10.1080/14647273.2018.1449970

statutory requirement that anyone contemplating DST isoffered proper psychosocial counselling, which is out-lined in the Code of Practice of the Human Fertility andEmbryology Authority (HFEA) (HFEA, 2017).

The European Society for Human Reproduction andEmbryology (ESHRE) recently developed evidence-basedguidelines on ‘Routine psychosocial care in infertilityand medically assisted reproduction’. These guidelineshelp fertility staff to recognize when patients with fertil-ity problems need specialized psychosocial care, butthey do not offer any specific recommendations onpsychosocial care for men and women opting fordonor-conception (ESHRE Psychology and CounsellingGuide Development Group; Gameiro et al., 2015). Theparadoxical situation has, therefore, arisen whereby psy-chosocial counselling is recommended for men andwomen applying for DST, but evidence-based guide-lines for counselling in DST are lacking. It is, therefore,not clear how counsellors should execute their practice.The aim of this study was, therefore, to gain insightinto the actual counselling practices of psychosocialcounsellors as a first step towards development of evi-dence-based guidelines in DST counselling forintended parents.

Materials and methods

Context

In The Netherlands, DST is offered in 11 clinics: fiveuniversity hospitals, three non-university hospitals andthree independent clinics. Nine of those clinics offer DSTusing sperm from their donor sperm bank. Intendedparents cannot access sperm donors directly (i.e. staffchoose for them), but they can bring their own spermdonor; two of the university hospitals exclusively offertreatment when intended parents have a self-knownsperm donor. All clinics treat heterosexual and lesbiancouples and single women, but two clinics only do sowhen couples come with a self-known donor and oneclinic does not offer DST to single women. All donorsare identifiable since 2004, according to Dutch law, giv-ing children the right of access to identifying informa-tion about their donor on reaching the age of 16(Dutch Law: Wet donorgegevens kunstmatige bevrucht-ing, 2002). Psychosocial counselling for intended parentsby professional counsellors has been gradually intro-duced in Dutch clinics from 1989 onwards, but theDutch law does not prescribe mandatory psychosocialcounselling. In all clinics, the national protocol on moralcontra-indications for infertility counselling has to be fol-lowed, which states that screening intended parents isnecessary in view of the welfare of the future child, but

this protocol does not provide guidelines for counselling(NVOG Modelprotocol, 2010).

We performed a qualitative study, involving a focusgroup discussion and individual semi-structured inter-views conducted from January to September 2014,with all Dutch professional counsellors who counselintended parents requesting DST in these clinics. Allprocedures were in accordance with the ethical stand-ards of the Helsinki Declaration of 2013 and wereallowed without approval of the consulted medicalethical committee, as none of the participants had toundergo any adverse intervention.

Recruitment

This study was performed by one of the 11 fertility clin-ics in the Netherlands and we recruited counsellors fromthe 10 other fertility clinics offering DST. We sent allcounsellors from the 10 clinics an information letter byemail or surface mail with the request to participate inthe study.

Two clinics did not employ counsellors for DST asthey did not offer professional psychosocial counsellingin DST. All counsellors of the other eight clinics werewilling to participate. First, we intended to organize afocus group discussion to explore how the counsellorsexecute their counselling. Second, based on the find-ings of the focus group discussion we intended toexplore more in depth their individual views and expe-riences by holding face-to-face interviews. We invitedall 14 counsellors of these clinics for a focus group dis-cussion at a given date by post or email. Depending onthe counsellors’ choice to participate in the focus groupdiscussion, we invited the non-participants for individ-ual interviews. Six of the counsellors were willing andable to participate in the focus group discussion. Sevenof the eight counsellors who did not participate werewilling to be interviewed individually at a date of theirconvenience. One counsellor did not want to partici-pate as she had only been employed for a short periodand felt that her experience was too limited.

Data collection

Three of the four authors were based in the AcademicMedical Centre (AMC) of the University of Amsterdamand one at the Anthropology Department in the Facultyof Social and Behavioural Sciences of the University ofAmsterdam. Prior to the start of the focus group discus-sion, confidentiality was assured and the first author(MV) explained the aim of the meeting. MV, a counsellorat the Centre for Reproductive Medicine at the AMC,did not take part in the discussion but participated asan observer. Before the start of the focus group

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discussion, the counsellors completed a questionnaireon their age, education and specific education in DSTcounselling, years of practice in DST and years ofemployment in DST counselling.

A moderator (a human resources director who hadrecently been involved in a study on DST as an inter-viewer) led the focus group discussion guided by a topiclist based on the clinical experiences of the first authorand the results of a previous study on psychosocialcounselling of parents who conceived through DST(Visser, Gerrits, Kop, van der Veen, & Mochtar, 2016). Thefocus group discussion lasted about 2.5 h. The discussionwas audio-recorded and transcribed verbatim.

The seven individual face-to-face interviews wereconducted by MV between March and September2014. MV informed the counsellors about the confi-dentiality of the interviews and asked them to fill outthe same questionnaire on background data as thecounsellors in the focus group discussion. The inter-views were guided by the same topic list used for thefocus group discussion, supplemented with topics thatarose after analysing the focus group discussion. Theinterviews took 50–75min and were audio-recordedand transcribed verbatim.

MV had never met three of the counsellors who partici-pated in the focus group discussion and three of thecounsellors who were individually interviewed. She hadmet the other seven counsellors once or several timesbefore. Before and after the focus group discussion andalso before and after the individual interviews, the factthat MV was a colleague, though not known to every-one, had been discussed. The participants of the focusgroup had valued the possibility to discuss the topicswith colleagues in a safe atmosphere, as it gave themthe chance to reflect on their own experiences.

Throughout the study, MV was aware of her ownviews and practices with regard to counselling intendedparents and had discussed these with two seniorresearchers from the research team (TG and MM) to min-imize the extent to which her personal opinions affectedthe content of the data collection and the outcome ofthe analysis. In addition, MV shared the coding processand the meaningful text units in the transcripts on aregular basis with a senior researcher (TG) to increasethe trustworthiness of the analysis (Giorgi, 2000).

Data analysis

MV analysed the transcriptions of the focus group dis-cussion and the individual interviews using thematicanalysis (Braun & Clarke, 2006). Thematic analysis is anestablished technique in qualitative research, which

uses an iterative process of coding with the aim toidentify themes within the data. First, the lead author(MV) analysed the transcript of the focus group discus-sion by means of line by line coding to generatethemes related to the counselling practices of thecounsellors. Based on this initial coding we constituteda coding list and a thematic scheme. Subsequently,MV once more read the transcript to search for repeat-ing ideas expressed by different participants and add-itional themes. Next, MV used a coding tree andthematic scheme to analyse the individual interviewsand we compared codes and themes to refine the the-matic scheme. MV read the transcripts again to ensurethe scheme was comprehensive and appropriate(Braun & Clarke, 2006; Lucassen & Olde Hartman, 2007;Then, Rankin, & Ali, 2014). To prevent bias caused byany preconceived ideas she might have, MV discussedthe coding and development of the thematic schemewith TG, who also read parts of the interviews duringthis coding process. To ensure consistency, any dis-crepancies were also discussed with MM and FV untilconsensus was met (Braun & Clarke, 2006).

To generate meanings related to numbers from thequalitative data, when describing the results, weexpressed numbers as follows (Sandelowski, 2001): allcounsellors (n¼ 13), most counsellors (n¼ 10–12), sev-eral counsellors (n¼ 7–9), some counsellors (n¼ 4–6), afew counsellors (n¼ 1–3) and none of the counsellors(n¼ 0). We performed all analyses with the MaxQDAsoftware program (VERBI GmbH, Berlin, Germany) forqualitative data analysis (MaxQDA, 2011). MaxQDA issoftware to organize, analyse and visualize data ofqualitative and mixed-method research. All forms ofdata can be collected electronically and it has func-tionalities ranging from transcription to statisticallyanalysis. In reporting the data, we used the COREQchecklist for reporting qualitative research (Tong,Sainsbury, & Craig, 2007). COREQ is a 32-item checklistto help researchers to report important aspects of theresearch team, study methods, context of the study,findings, analysis and interpretations.

Results

The data on the counselling practices of 13 counsellorsworking in eight clinics are summarized in Figure 1.The counselling policies of the clinics included proced-ural aspects like setting the criteria for access to psy-chosocial counselling in DST and establishing theprocess of decision-making after the actual counsellingsessions. Three clinics had a policy of mandatory coun-selling for men and women of all family types. In allclinics, counselling was mandatory for DST requests

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with a self-known sperm donor, regardless of familytype and in six clinics counselling was mandatory for allsingle women. Several counsellors were content withthe policy of the clinic, but about half of the counsel-lors wished to have a better say in the counselling pol-icy and felt that access to psychosocial counsellingshould be obvious for all intended parents, thoughthey were also loyal to the policy of their clinics.

The decision-making regarding eligibility for DST aftercounselling varied. In three clinics, this was undertakenby medical ethical committees in cases of all singlewomen and when a medical doctor and/or counsellorhad any concerns about the eligibility of the intendedparents in cases of heterosexual and lesbian couples.These committees usually consisted of medical staff,including gynaecologists, geneticists, urologists, obstetri-cians, counsellors(s), nurses and representatives of theethics department of the clinic. In three other clinics,the findings of the counsellor were discussed by a teamof medical doctors, nurses and the counsellor only incases where the counsellor and/or medical doctor hadany concerns about the intended parents, regardless offamily type. In two clinics, the counsellors discussed thecounselling findings with a colleague counsellor andwith the whole team in case of disquieting findings. Inall clinics, patients had been informed about these pro-cedures in accordance with the Code of Ethics of theDutch Institute for Psychologists, which is based on theLaw for Protection of Personal Information (NederlandsInstituut van Psychologen, 2015).

The characteristics of the counsellors are summar-ized in Table 1. The average age of the 13 counsellors(all women) was 49.1 years, ranging from 31 to 64years. Nine of them had a university degree in psych-ology and four a higher professional education as a

social worker. None of the counsellors had receivedspecific education on DST counselling. All counsellorshad shaped their own counselling practice individuallyby participating in conferences, reading literature andconsulting with colleagues. The counsellors did notmention specific literature they relied on. Five counsel-lors from three clinics followed the local guidelines oftheir clinic for counselling in DST, based on clinicalpractice and literature on implications of DST, sincethey were aware of the lack of evidence-based guide-lines. One counsellor mentioned the Handbook forFertility Counseling on which she relied (Covington &Burns, 2006). None of the counsellors used psycho-logical measuring scales. Five counsellors held consul-tations with colleagues on a regular basis to exchangeknowledge and experiences, and to reflect on theirown feelings and values.

The counsellors had an average of 8.3 years of DSTcounselling experience, ranging from 1.5 to 33 years; sixof them in a university hospital, one in a general hos-pital, five in an independent clinic and one as an inde-pendent counsellor in connection to a general hospital.After analysing the focus group discussion and individ-ual interviews, seven themes emerged: eligibility screen-ing; guidance; secrecy and disclosure; the position of

Figure 1. Flowchart of respondents.

Table 1. Baseline characteristics of the counsellors.Age 49.1 years (range 31–64 years)

Education:University 9Higher professional education 4Experience with counselling 8.3 years (range 1.5–33 years)Setting:University hospital 6General hospital 1Independent clinic 5Independent counsellor 1

258 M. VISSER ET AL.

the social parent; the absence of the father; the positionof the donor and guidance after DST.

Eligibility screening

Most counsellors combined screening and guidance forintended parents in a 1 h counselling session, whichwas in line with the policy of their clinic. Nevertheless,they felt uncomfortable about combining these twotasks, as they felt that it prevented intended parentsfrom speaking freely about their concerns and uncer-tainties out of fear for judgement and possibly beingdenied access to DST. Overall, the counsellors discussedthe choice for DST and they assessed mental stability,stability of the relationship, stability of the network offriends and family, disclosure to the child and theirviews on the future donor. With single women, theyassessed these issues more extensively and in case of aknown donor they discussed more specifically theexpectations of all parties involved regarding the pos-ition of the donor, his partner and future disclosure tothe child and to children of the donor.

In case of disquieting findings, such as mental-healthproblems, socio-economic deprivation, poor social net-works, poor relationships with parents or a combinationof these issues, a multi-disciplinary deliberation abouthow to proceed was the next step in all clinics, regard-less of family type or whether the donor was known tothe intended parents or not.

Guidance

In general, the main focus of guidance was to supportintended parents who felt uncertain about choosingDST, to assist them in their choice between a knowndonor or a sperm bank donor, to help them reflect onthe possible implications of disclosure, to reflect onfuture donor contact and to advise them on how todeal with DST in relation to their child and to signifi-cant people around them. Some counsellors routinelyoffered such guidance for all family types, regardlessof the origin of the donor, due to the recognition thatDST has psychosocial impacts on all intended parentsand offering easy access to guidance can help them toshare their questions and feelings. The other counsel-lors did not routinely offer guidance, stemming fromthe view that couples themselves could ask for guid-ance when needed. Most counsellors felt that routinelyoffering guidance for single women and for intendedparents with a known donor was always important, asthey are in a more vulnerable position.

Secrecy and disclosure

Based on their individual knowledge and clinical experi-ence, all counsellors felt that secrecy about the geneticorigins of the future child could cause difficulties infamilies, both for the parents who would then have tolive with this secret and for the children because theymight sense that something is wrong or discover donorconception by accident. Most counsellors exploredwhether and how intended heterosexual parentsthought they would disclose and whether the man andthe woman agreed or disagreed with one another.When intended parents asked for advice, all counsellorstold them that disclosure should be seen as a processduring the child’s entire upbringing from a young age.

Almost all counsellors had the opinion that discus-sing disclosure with lesbian and single women wasnot necessary as they felt it was obvious that childrenwould ask their mothers about their father. A fewcounsellors always discussed disclosure with lesbianand single women, because in their experience thosewomen had also had questions about when and howto talk with their child about their genetic origins andthey feared rejection by their future child.

Most counsellors explored whether the intendedparents had told or had the intention to tell their fam-ily and/or friends about DST. Several counsellors sug-gested that intended parents should do so as thiscould be supportive.

If intended parents said that they wanted to keepdonor conception a secret out of fear of rejection bytheir family and/or strong feelings of shame, mostcounsellors paid attention to their feelings of loss andgrief and discussed disclosure of donor conception inrelation to their anxieties more extensively. Still, mostcounsellors felt that in the end the decision of theintended parents should be respected.

The position of the social parent

Several counsellors discussed the position of the socialparent (i.e. the parent who is not genetically related tothe future child), when the intended social parentshowed worry about being rejected by their future childor when he or she felt uncomfortable talking aboutthe donor.

For heterosexual couples, social parenthood wasplaced in the context of male infertility and thesecounsellors explored how the couples had so farcoped with male infertility, as they had experiencedthat infertile men often fear rejection by their wife ortheir future donor-conceived child. For lesbian couples,only a few counsellors discussed the position of the

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social parent because they had experienced that socialmothers might have feelings of jealousy, thoughthese feelings were often not openly expressed by alllesbian women themselves. Most counsellors, however,felt that lesbian women who choose DST are autono-mous, well-educated and able to handle these feelings.

The absence of a father

With lesbian couples several counsellors and with sin-gle women most counsellors, discussed the possibleimplications of their future child not having a father inhis/her life, as they felt that not having a father couldbe difficult for the child. These counsellors thoughtthat it was of value for the identity of children to beable to build a close relationship with both a maleand a female adult person and that these childrenneeded a male role model in their lives. They did notaddress this issue if a known donor would play a rolein the life of a child. The other counsellors did notshare this point of view with regard to lesbian couples,as they felt that having two parents would compen-sate for not having a father.

The position of the donor

With intended parents of all family types, most coun-sellors discussed the position of the donor to providethem with an understanding of what this could meanfor them and to support them in talking freely withtheir child about the donor.

Most counsellors advised intended parents thatthey could best refer to the donor as ‘donor’. A fewcounsellors felt that any term could be used to referto the donor, depending on what parents themselvesfelt was the best for their child and/or for themselves.The counsellors had conflicting opinions on what torecommend to lesbian couples and single women iftheir child asked about their father. Some counsellorsadvised them to answer ‘you don’t have a father’ inorder not to confuse the child, while other counsellorsfelt that telling the child that he/she has no fathermight confuse the child and advised to answer ‘youhave a donor-father’.

When intended parents had chosen for a knowndonor, all counsellors discussed the position of thedonor in the family and how to talk about him,regardless of family type. In these cases, the counsel-lors discussed the expectations of all parties involvedregarding the position of the donor.

Guidance after DST

All counsellors except one offered intended parents ofall family types counselling once they had becomepregnant after DST or after a child had been born, butparents seldom returned to the clinic for counselling.When parents did come, some counsellors had experi-enced that they were mainly heterosexual couples andthat they generally had questions about when andhow to disclose donor conception to their child andsometimes about the position of the social father.According to these counsellors, most parents appreci-ated talking about these subjects at that stage.

Discussion

In this study, we explored the practices of Dutch coun-sellors in DST. Our findings show that counselling prac-tices were shaped by the individual counsellors, basedon their individual knowledge and clinical experience,their participation in conferences, their reading of exist-ing literature and their consultation with colleagues.Some counsellors used local counselling protocols,based on clinical practice and knowledge on implica-tions of DST. In a larger context, they were dependenton the counselling policies of the clinics, which weremainly limited to regulating access to psychosocialcounselling. All counsellors offered intended parentscounselling after DST and childbirth but recognizedthat when intended parents actually became parents,they seldom returned for counselling.

The strength of this study is that it examines thecounselling practices, or lack thereof, of all psychosocialcounsellors in all Dutch clinics that offer DST and that ituses a sequence of two valid techniques in qualitativeresearch which enhances internal validity: first, a focusgroup discussion to explore the breadth of counsellingpractices followed by individual interviews to deepenunderstanding of the experiences and opinions whicharose in the focus group discussion.

A limitation is that the study was conducted with agroup of colleagues who were partly known to oneanother, so they could have been less likely to shareinformation that might reflect on them negatively. Aconsequence may have been that actual inconsisten-cies in counselling practices were underrepresented.Although the topic of the study did contribute to theirinterest in the topic and made them motivated toexchange their ideas about their counselling practicesand this motivation also stemmed from their wishes tocontribute to more uniform counselling guidelines.

It remains unknown whether the practices ofcounsellors in other countries differ from those in the

260 M. VISSER ET AL.

Netherlands and also whether they better fulfil the wishesof parents. This manuscript could provide tools and asense of direction for how to look into this further.

The value that counsellors attached to reflecting onmale infertility, discussing secrecy and disclosure, andreflecting on the donor and his position in the familyare in line with the practice-based guidelines on psycho-social counselling on DST as developed by the BritishInfertility Counselling Association (BICA), the InfertilityCounselling Network Germany (CNG) and the Australianand New Zealand Infertility Counsellors Association(ANZICA) (ANZICA, 2012; Crawshaw, Hunt, Monach, Pike,& Wilde, 2013; Thorn & Wischmann, 2009).

Many intended parents with identifiable donorsappreciate counselling before DST, but feel it is crucialthat they are able to speak freely about topics that areimportant to them without having the feeling thatthey are being judged with possible consequences forentering the DST programme (Visser et al., 2016). Inthis respect, the actual counselling practice is not inline with the wishes of intended parents. The sameapplies to the discussion of disclosure: most counsel-lors did not discuss disclosure with lesbian and singlewomen, while parents of all family types feel this isimportant (Visser et al., 2016). Also, discussing the pos-ition of the social parent (which only a few counsellorsin this study said they did and then restricted this onlyto heterosexual couples) was valued by lesbian as wellas heterosexual parents (Visser et al., 2016).

Disclosure, the lack of a genetic tie, the position ofthe donor and possible future interaction between thedonor and child were issues that the counsellors foundmost important to discuss, which mirrors a previousstudy on counselling in gamete donation in general(Dutch Law: Wet donorgegevens kunstmatige bevrucht-ing, 2002). For the practice of counselling it also seemsvaluable to discuss the experiences of parents that feel-ings about the position and role of the donor in thefamily can change over time (Daniels et al., 2009; Dutchlaw: Wet donorgegevens kunstmatige bevruchting, 2002;Gartrell, Bos, Goldberg, Deck, & van Rijn-van Gelderen,2015; Hammarberg et al., 2008; Indekeu et al., 2013;Indekeu et al., 2014; Laruelle, Place, & Demeesterre, 2011;Salter-Ling, Hunter, & Glover, 2001; Scheib, Riordan, &Rubin, 2003; Visser et al., 2016; Zadeh, Freeman, &Golombok, 2016).

Of note is that all counsellors offered extendedcounselling once parents became pregnant or gavebirth to a child, in order to give further guidance oncoping with possible implications of having a donor-conceived child, the disclosure process and/or feelingsabout the position of the donor. In practice, hardlyany parents returned to the clinic to take up this offer.

One reason might be that the guidance before treat-ment is not offered separately from screening and thatthey do not feel safe. In cases where parents wouldappreciate being offered extended counselling onthose issues, this is regrettable. Another reason mightbe that the clinics remind them of their treatmentwhich belongs to a different phase of their lives.

In a few studies, parents expressed their wish forprofessional support when raising their children (forexample to cope with the disclosure process) but didnot know where to go for such guidance (Lalos,Gottlieb, & Lalos, 2007; S€oderstr€om-Anttila et al., 2010;Visser et al., 2016). Over the last two decades, studieshave been conducted on parents’ (non)-disclosure totheir donor-offspring, which reveal that keeping DST asecret creates pressure and strain in their families; thatparents do not regret telling their children about theirgenetic origins. Compared to non-disclosing families,mothers who have disclosed donor conception haveless frequent and less severe arguments with theirchildren; disclosure at a young age gives morepositive family relationships and that there is morepositive family functioning when parents share donor-conception with their child (Daniels et al., 2009;Daniels, Grace, & Gillett, 2011; Daniels, Lewis, & Gillett,1995; Ilioi, Blake, Jadva, Roman, & Golombok, 2017;Isaksson, Skoog-Svanberg, Sydsj€o, Linell, & Lampic,2016; Landau, 1998; Leiblum & Aviv, 1997; Lycett,Daniels, Curson, & Golombok, 2004; Paul & Berger,2007; Rumball & Adair, 1999; Scheib et al., 2003).

Sharing donor-conception is not easy, since weknow that parents are uncertain how to deal with dis-closure, that disagreement and uncertainty preventsthem from telling and that the way parents sharedonor-conception with their child depends on theirmindset before DST (Blake, Jadva, & Golombok, 2014;Blyth & Hunt, 1998; Crawshaw, 2008; Daniels et al.,2011; Indekeu et al., 2013; Leiblum & Hamkins, 1992;Nordqvist, 2012; S€alevaara, Suikkari, & S€oderstr€om-Anttila, 2013). Most of these studies call for profes-sional assistance for parents to share donor-conceptionwith their child. Parents choosing an identifiable donorshow neutral to positive feelings regarding their deci-sion (Gartrell et al., 2015; Scheib et al., 2003). Mostchildren with an identifiable donor wish to receiveinformation from him to learn about the donor andthemselves. They wish to receive information abouthis motivation, his ancestry and his family relationshipsto have a better understanding of themselves andtheir identity (Beeson, Jennings, & Kramer, 2011; Hertz,Nelson, & Kramer, 2013; Jadva, Freeman, Kramer, &Golombok, 2009; Mahlstedt, LaBounty, & Kennedy,

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2010; Rodino, Burton, & Sanders, 2011; Scheib, Riordan,& Rubin, 2005; Turner & Coyle, 2000).

A recent opinion paper stated that disclosure anddirective counselling on disclosure cannot be justifiedbecause of a lack of empirical evidence on the well-being of children when parents share donor-conception(Pennings, 2017). This point of view has been chal-lenged by others providing evidence that donor-offspring and their families benefit from openness,although, for obvious reasons, donor-children of non-disclosing families cannot be studied (Crawshaw et al.,2017; Golombok, 2017).

When eligibility screening is separated from guid-ance, intended parents can be encouraged to come forcounselling on coping with the challenges of subse-quent parenthood, but the clinics and counsellors needto be clear about their conflicting roles as gatekeepersand providers of guidance (Benward, 2015; Braverman,2015; Crawshaw & Montuschi, 2014; Freeman et al.,2014; Indekeu et al., 2013; Norr�e & Wischmann, 2011).Since we know that parents may appreciate the avail-ability of counselling after childbirth on issues like howto talk openly with their children about genetic andsocial relatedness, and about the donor and possiblefuture contact, not-clinic based counselling by inde-pendent specialist counsellors might be helpful becausethe parents do not return to the clinics. Organizing out-reach platforms for peer support, networks for parentsand their families and specialist guidance, as in the UKand Australia, may be an important step forward inthis respect.

Implications for clinical practice andfuture research

Counsellors base their counselling on their individualknowledge and clinical experience and are dependenton the counselling policy of clinics, which is worri-some. More awareness and reflection are needed onhow to prevent large practice variation regarding thecontent of counselling, to separate screening fromguidance and to develop specialist counselling afterDST for parents of all family types. In this respect,empirical knowledge about the wishes of (intended)parents and of donor-conceived offspring is a key toimproving counselling practices in DST, to meet thevarying needs of the (intended) parents.

This might ultimately lead to evidence-based guide-lines specifically designed for DST, which is the way for-ward, as counselling in DST requires specificknowledge, such as knowledge about the implicationsof one parent being a social but not a genetic parent,the disclosure process and the process on the evolving

position of the donor for the child and the family.Despite current literature and acknowledgement of theimportance of psychosocial counselling in DST by insti-tutions, such as ASRM and HFEA, evidence-based guide-lines have not been developed so far, resulting in largevariations in counselling practices as demonstrated byour results. Although the recent ESHRE guidelines on‘Routine psychosocial care in infertility and medicalassisted reproduction’ do offer clear information forclinicians treating infertile patients and help them torecognize when patients need specialized psychosocialcare, they do not offer any recommendation for psy-chosocial care for men and women opting for DST(Gameiro et al., 2015).

Acknowledgements

We are grateful to all the colleagues for their valuable contri-bution to this study.

Disclosure statement

The authors report no conflicts of interest.

ORCID

Marja Visser http://orcid.org/0000-0003-1338-9812

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