CHAPTER 5 -‐ STUDY I 84
5.5 STUDY I RESULTS ‐ SUPPORT FOR EMBRYO DONATION/DOUBLE DONATION
5.5.2 HOW DO PARENTS ADDRESS THE NEED FOR ADDITIONAL SUPPORT? 183
The majority of parents would benefit from additional support to address their disclosure-‐related issues. Whilst to some extent their need for further support is similar, how disclosing and non-‐disclosing parents address their needs differs. Disclosers were extremely resourceful at seeking out alternative forms of support, whereas non-‐disclosing parents did not seek out any additional support, and were unaware of the support that is actually available. Therefore this section predominately focuses on disclosing parents, resulting in four themes:
1. ACCESSING A PRIVATE COUNSELLOR
I. To discuss implications of using donated eggs II. For emotional support
III. To explore disclosure
2. LINKING WITH OTHER DONOR-‐CONCEIVED FAMILIES
I. Emotional support
II. Sharing ideas and information III. So that children do not feel different
3. DONOR CONCEPTION NETWORK RESOURCES
I. Workshops
i. Convinced to tell
ii. Prepared for how to disclose
II. Books
i. Not suitable for every family type ii. Unsuitable for young children
4. CREATIVE SOLUTIONS TO LACK OF SUITABLE RESOURCES
I. Adding extra information into existing books II. Creating a photo book
THEME 1: ACCESSING A PRIVATE COUNSELLOR
Whilst the majority of parents did not perceive clinic counselling as useful, the fact that several parents accessed private counselling reinforces the perceived value of counselling per se. Those who independently arranged counselling, were all disclosing parents, and accessed these sessions prior to ED/DD treatment, or after they found out that their treatment was successful. Three subthemes identified the reasons why parents sought these sessions:
Parents, who accessed independent counselling prior to treatment, did so to discuss issues related to using donated eggs, or for emotional support:
To discuss implications of using donated eggs
This was specifically relevant for SMCs who were relatively comfortable with the idea of using donated sperm; however, the addition of using donor eggs was a more complex decision because they had not previously considered that they would be required. They wanted to explore this via counselling, to ensure that they felt comfortable before starting treatment:
When I found out that I would need egg donation, for me that was, as I said, the big decision, so I sought out a, erm, a local counsellor...a fertility counsellor …. she was brilliant. D/ SMC/twin sons-‐3 (AB/DD/A)
I remember the counsellor saying to me, you know, whatever you do, you’ve got to be comfortable with the decisions you make, because you…if you’re not, you’ll transmit that to him. D/SMC/son-‐8m (AB/DD/A)
This reiterates that for some parents, the use of DD/ED treatment is viewed as a highly significant one that requires considerable thought and exploration.
For emotional support
Almost all parents described how infertility had an impact on their emotional well-‐being, which led some disclosers to seek support from someone ‘impartial’
I was perhaps becoming conscious that <my friends> didn’t want a blow-‐ by-‐blow account of, you know, of every little up and down along the way. ... I think the counsellor made a really important role in being that sort of objective, outside of the family support. D/SMC/twin sons-‐3 (AB/DD/A)
I would see her fortnightly and it was just an offloading, just so I could talk and get upset and I did get a bit depressed at one point. D_/SMC/twin daughter and son-‐2 (AB/DD/A)
To explore disclosure
Parents, who sought counselling after successful treatment, did so to explore disclosure. Like non-‐disclosing parents, they also experienced worries regarding sharing information with their children:
I was going through the whole, ‘ah, if its sperm and egg how do I tell them? What do I tell them?’ you know, it’s more complicated because then it, it’s not just a sperm donor but, you know explaining the egg donor although I'm actually there. D/SMC/twin sons-‐3 (AB/DD/A)
She was marvellous and I think also hearing from her about stories about people she was dealing with who completely you know, screwed up
breaking down because they found out late about their own parentage and I didn’t want that to happen to <child> and I wanted to be as clear from the start as possible. D/MC/daughter-‐7 (UK/ED/A)
Overall, independent post-‐treatment counselling clarified two main aspects. First, debating the negative consequences of non-‐disclosure helped them to realise that disclosure was the right decision for them. Second, discussions on how they could talk to their child about their conception prepared them for this future event. Prior to treatment, independent counselling was accessed by SMCs only, and not by HCs. Due to needs pre-‐treatment being related to emotional aspects, this could be because couples went through the treatment together, so can support each other emotionally, whereas SMCs do not have this shared experience. All family types accessed post-‐treatment counselling when their attention shifted to aspects related to disclosure, as such disclosure-‐related issues impacted both SMCs and HCs.
THEME 2: LINKING WITH OTHER DONOR-‐CONCEIVED FAMILIES
A second way that disclosing parents address their need for additional support is by making contact with other families who have donor-‐conceived children via the DCN or online forums, such as ‘Fertility Friends’ and ‘Infertility Network’. Three sub-‐themes identified how contact with donor-‐conceived families was beneficial:
Emotional support
Like independent counselling, emotional support from other parents was also accessed only by disclosing SMCs, who sought this pre-‐treatment, or once a pregnancy was established, in an attempt to ‘bond’ with other parents going through treatment at a similar time, and to share treatment-‐related worries:
We were all going the treatment at the same time and that’s why fertility friends was great because we you know you kind of bond. D/SMC/sons-‐3 and 2 (AB/DD/A)
Certainly from talking to other, you know, people on Fertility Friends.. we’re really quite nervous when they were pregnant about how they were going to feel about having a donor egg baby, and you know, we could all sort of reassure each other. D/SMC/daughters-‐5 and 2 (AB/DD/IA)
Sharing ideas and information
Linking with other parents provides a platform for information sharing about issues of disclosure, particularly from parents who have been through a similar situation, which is considered the ‘best’ source of information and knowledge:
Other women in the same situation as me but particularly those that are a little bit further on as their children are a bit older have become probably the BEST sort of information and knowledge around talking to the children in particular. D/SMC/twin sons-‐3 (AB/DD/A)
Sharing experiences and making comparisons also served to reassure parents about the responses and reactions of their children:
I'm very lucky that… got two good friends, who have used donation to conceive, but I feel quite lucky in that we can actually chat to each other and sort of compare our children's responses, and compare what we're doing at the moment and how that's going. D/MC/son-‐5 (UK/ED/I)
Non-‐disclosers have not established relationships with other parents who have donor-‐conceived children, but thought that these links would be constructive
because they considered the experiences of parents who have been through the process to be more meaningful than discussions with counsellors as both members of this non-‐disclosing couple describe:
We need to get it from people who have actually been through that process...get their positive and negatives. How they’ve dealt with it, you know... how they’ve gone about that why they’ve made the decisions that they’ve made…. ND/FC/son-‐3 (UK/ED/I)
Somebody who’s been through this before. It’s going to be more beneficial to us than somebody per se, counsellor sitting there you know going… to give you all the time in the world but they’re not going to know because they’ve not been through it. ND/MC/son-‐3 (UK/ED/I)
So that children do not feel different
Support groups were also potentially of benefit to children. Disclosers hoped that providing an opportunity for children to know other families conceived in a similar way would minimise the chance of children feeling ‘unusual and
‘different’’:
He's going to be unusual..his story will be very different to other children's stories. Which is why it's really important for me and we do have a network and he sees other children in the same position. D/SMC/son-‐5 (AB/DD/A)
I think it’s so important for the children to know that a come across other children from similar circumstances...to know there’s other children like them and they can meet them and see them it’s not just them. D/MC/son-‐ 4/daughter-‐2 (AB/DD/A)
Some non-‐disclosers gave ‘difference’ as a reason for non-‐disclosure, but
contact with other donor-‐conceived families would establish reference points to reassure parents and their children. However, as identified in other research (Blyth et al., 2013), parents in this study were largely uninformed by their fertility clinic about the existence of support groups, and generally found them by independent research.
THEME 3: DONOR CONCEPTION NETWORK RESOURCES
As well as providing an opportunity to meet other donor-‐conceived families, parents who accessed DCN received disclosure support and advice. Two types of resources prepared and facilitated disclosers to be open with their children
DCN Workshops
As discussed in 3.2.3, DCN run several workshops intended for donor-‐conceived parents; most disclosing parents in this study attended at least one of these.
‘Convinced us we needed to tell’
Workshops were usually attended during pregnancy in order to explore
information disclosure. Some attendees said that the workshop convinced them to disclose to their child:
I think when we went to that weekend it really convinced us we needed to tell, you know, any child we might have and how important that was.
D/MC/daughter aged 2 (AB/DD/A)
Information on how to talk to children
Attending workshops also helped parents to consider how to talk to their child in the ‘right’ way, again highlighting the perception that there is indeed a correct way to discuss disclosure:
It’s all about – when you’re a parent of donor-‐conceived children – learning how to say things in the right way … you can practice all this language, this is sort of what the DCN sort of invite you to do. D/SMC/son aged 8 months (AB/DD/A)
Parents also reported that these workshops helped to prepare them how to answer their children’s future questions:
The reason that I go to all the meetings and the, you know, is to, you know, so that I'm as informed as I can be so that when he does come to me with the difficult questions. D/SMC/son-‐6 (AB/ED/A)
These findings are reflective of research by Crawshaw and Montuschi (2014)
that found that attending workshops encouraged disclosure where parents were unsure, and prepared parents with advice on the practicalities of early disclosure.
DCN Books
As discussed in 3.2.1, DCN have a range of books designed for parents to read to their children, which parents generally think are useful. However, there were two reasons why some parents were unsatisfied with the books available:
Not suitable for every family type
Parents felt that the selection of books were not always applicable for their particular situation, and as this mother explains, she would like it if books were available to cover all family types:
From a user’s point of view those-‐those books are INCREDIBLY useful and it would be it would be amazing if there was one specific to every
circumstance. So for example, my girls are my girls are donor egg and donor sperm. But the only books available were about donor egg. D/MC/daughters-‐6 and 4 (AB/ DD/A)
Unsuitable for young children
At the time of the interviews, DCN books attempted to cover a variety of different family types all in the same book43. As a result, parents had to skip
through irrelevant pages; something that parents deemed was an unsuitable approach for young children:
The one we’ve got flips between a twin scenario they the they try to be all things to all erm users and if you’re telling a child a story you can’t have a page that erm says if you’re twins turn to page whatever because a child wants to look at every page of the book… and that doesn’t quite work that side of it. D/MC/daughters-‐6 and 4 (AB/DD/A)
43DCN have since created a new set of books whereby parents can enter details online
Other findings on sperm/egg donation families also found that parents were disappointed by, or frustrated with the lack of resources available (Lalos et al., 2007; Mac Dougall et al., 2007). However, as discussed in 3.2.1 there are a plethora of books available, of which parents were largely unaware. This could be avoided if counsellors provided intended parents with a list of suitable books that they could utilise.
THEME 4 -‐ CREATIVE SOLUTIONS TO LACK OF SUITABLE RESOURCES
Parents applied creative approaches to construct a personalised story for children, as illustrated by two sub-‐themes:
Adding extra information into existing books
First, the addition of extra information, or adaptation of current books, allowed parents to create a suitable story that covered the family structure and donation type specifically relevant to their children. This mother describes how adding extra material into an existing DCN book helped to convey important
information about her children’s conception:
It doesn’t talk about erm going abroad and … they didn’t they didn’t have one for lesbian parents with double donation so we just sort of had to add that into the story. D/MC/son-‐4 and daughter-‐2 (AB/DD/A)
Creating a photo book
Second, the creation of a personalised photo book provided a unique tool to help children to understand their ED/DD conception. The benefit of this is that it can be used to explain details relating to donor conception that might be missing from DCN books, and can tell the exact story that parents wish to share. This mother explains how she uses this book:
When I first made it they were FASCINATED by it, they wanted to read it every night. They mostly just wanted to look at the picture of me with the big fat tummy. Er, and they liked the airplane, there’s a picture of an airplane as I sort of fly off to the clinic. D/SMC/twin sons-‐3 (AB/DD/A)
Section summary and adoption comparisons
Disclosers sought support to address their needs, whereas non-‐disclosers did not, and their needs remained present. One prominent difference between disclosing ED/DD parents and adopters was that several ED/DD parents
accessed independent counselling because they considered ED/DD treatment a ‘big’ decision, and to help them to decide whether or not to disclose. Adopters did not seek this support, which implies two things. First, all adopters were advised to disclose during their adoption training and were made aware of the benefits of being open, whereas ED/DD parents were not. Second, adopters were acquainted with the consequences of non-‐disclosure, whereas some ED/DD parents were less familiar with this.
Some disclosers designed photo books to help their children to understand details about their conception. This approach is similar to LSBs used by adopters; however, adopters were encouraged to use LSBs as a disclosure method, but ED/DD parents were not advised of the benefits of visually
representing donor conception. Peer support was deemed important, however, adopters sought this to share experiences with other parents in a similar position to them, whereas ED/DD parents were inclined to pursue support for reassurance and advice regarding disclosure. This reinforces that ED/DD parents have a greater need for disclosure related support, compared to adopters.