Parents' disclosure to their donor-conceived children in the last 10 years and factors affecting disclosure: a narrative review.

BACKGROUND: Disclosure of donor conception has been advocated in several jurisdictions in recent years, especially in those that practice identity-release donation. However, research on disclosure decisions has not been consolidated systematically in the last 10 years to review if parents are telling and what factors may be impacting their decisions. OBJECTIVE AND RATIONALE: Are parents disclosing to their donor-conceived children, and what factors have influenced their disclosure decisions across different contexts and family forms in the last 10 years? SEARCH METHODS: A bibliographic search of English-language, peer-reviewed journal articles published between 2012 and 2022 from seven databases was undertaken. References cited in included articles were manually scrutinized to identify additional references and references that cited the included articles were also manually searched. Inclusion criteria were articles focused on parents (including heterosexual, single mothers by choice, same-sex couples, and transsexual) of donor-conceived persons in both jurisdictions with or without identity-release provisions. Studies focused solely on surrogacy, donors, donor-conceived persons, or medical/fertility staff were excluded as were studies where it was not possible to extract donor-recipient parents' data separately. Both quantitative and qualitative studies were included. Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed and Joanna Briggs Institute Critical Appraisal Tools for Systematic Reviews were used to assess article quality and bias. OUTCOMES: Thirty-seven articles met the inclusion criteria representing 34 studies and 4248 parents (including heterosexual, single, same-sex, and transsexual parents although the majority were heterosexual) from countries with anonymous donation and those with identity-release provisions or who had subsequently enacted these provisions (Australia, Belgium, Finland, France, Hong Kong, Middle East, Spain, Sweden, the UK, and the USA) A general trend towards disclosure was noted across these groups of parents with most disclosing to their donor-conceived children before the age of 10 years. Further, the majority of those who had not yet told, reported planning to disclose, although delayed decisions were also associated with lower disclosure overall. Same-sex and single parents were more likely to disclose than heterosexual parents. There was recognition of disclosure as a process involving ongoing conversations and that decisions were impacted by multiple interacting intrapersonal, interpersonal, and external contextual and social factors. Methodological limitations, such as the different population groups and contexts from which participants were drawn (including that those parents who choose not to disclose may be less likely to participate in research), are acknowledged in integrating findings. WIDER IMPLICATIONS: This review has reinforced the need for a theoretical model to explain parents' disclosure decisions and research exploring the role of legislative provisions, culture, and donor/family type in decision-making. Greater ongoing access to psychological support around disclosure may be important to promote parent and family well-being.

Donor-linking provisions in New Zealand: counselling roles, concerns and needs.

Donor-linking where those genetically related through donor conception (e.g. donor-conceived persons (DCP), donors and siblings), or recipient parents, search for and connect with each other, is increasingly common, both in identity-release jurisdictions where donors' identifying information may be released to DCP, usually when they become adults - and in anonymous jurisdictions, e.g. as a result of direct-to-consumer DNA testing. In this paper, we explore New Zealand fertility clinic counsellors' views regarding their donor-linking roles and their concerns and needs in relation to current and anticipated service provision. Counsellors believed that fertility service providers had a longer-term responsibility to offer donor-linking services to ensure the wellbeing of all parties affected by donor conception. They perceived their role as complex and multifaceted, encompassing psychoeducation, mediation, advocacy, facilitation, relationship counselling, and therapeutic intervention. They identified significant service provision challenges however, including inadequate staffing, training, time and prioritisation of donor-linking, and inadequate legislative provisions to support practice. Counsellors called for clarity in legislation addressing different contexts of donation and providing measures to ensure the recording of and access to identifying information. They expressed a need for comprehensive, funded donor-linking services, therefore facilitating choice, and services staffed by professionally trained and supported staff.

Extended families? Contact expectations and experiences of egg donors donating to previously unknown recipients.

In New Zealand egg donation is identity-release, and donors may be known to recipients, e.g. family members/friends, or previously unknown e.g. clinic-recruited or sourced through advertising. In the case of unknown donors, New Zealand practice allows donors and recipients to meet face-to-face prior to donation in a joint counselling meeting. While contact details may not necessarily be exchanged in counselling, information-exchange and contact expectations are usually addressed. In previous papers, we explored donors' motivations and experiences of donation. In this paper, we explore donors' ideas around their role in relation to the donor-conceived person (DCP) and their expectations and experiences of information-exchange and contact. While donors did not see themselves as parents and were aware of appropriate boundaries, they described a sense of ongoing connection to DCP, often framing this in extended family terms. They desired to be kept informed about DCP, considered themselves 'on standby' for information requests or in-person contact and valued the opportunity for connection between their children and DCP. Donors were, however, cognisant of the limits to their ability to ensure information-exchange and contact and sometimes struggled with their perceived disempowered position. Meeting prior to donation may both clarify and reinforce expectations of information-exchange and contact.

Student views on recognition and payment options for gamete donation in New Zealand.

BACKGROUND: Demand for donor gametes in New Zealand significantly outweighs the number of willing donors. Payment for donation has been suggested as a viable solution to increase the supply and attract more donors in acknowledging the time, effort and inconvenience associated with donation. AIMS: Internationally, university students are a commonly targeted group for paid gamete donation. This study aims to explore the views of university students in New Zealand to gauge their support and concerns relating to a range of options to recognise donors, including payment. METHODS: Two hundred and three tertiary students completed a questionnaire exploring their views on various forms of recognition for donation and concerns relating to payment. RESULTS: Participants indicated the greatest support for reimbursement for expenses directly related to the donation process. Payment constituting explicit financial advantage was regarded least favourably. Participants held concerns that payment would attract people donating for the 'wrong' reasons and lead to donors concealing relevant histories. Further concerns included payment increasing costs for recipients and causing disparities in access to gametes. CONCLUSIONS: The findings of this study suggest that within a New Zealand context a culture of gift-giving and altruism are strongly held principles towards reproductive donation, including among the student population. This highlights the need to consider alternative strategies to commercial models to overcome donor shortages which are in line with the cultural and legislative context of New Zealand.

Make our wellbeing a priority: donor-conceived adults call for ongoing support and conversation about their donor conception.

The experiences of donor-conceived adults have received relatively little research attention despite the increasing trend of gamete conception. In this qualitative study, ten donor-conceived adults: eight women and two men, were interviewed to explore their experience of being donor-conceived. The participants did not automatically have the right to access identifying information of their donors upon turning eighteen as they were born prior to the introduction of the 2004 Human Assisted Reproductive Technology (HART) Act in New Zealand. The overarching theme identified was a need for parents, donors, and the fertility industry to prioritise their longer-term wellbeing. To this effect, participants wanted recognition of the importance of their donor conception history for their identity, and called for early disclosure to be reinforced through open, ongoing conversations with their parents. They highlighted the need for support to process the implications of donor conception, and to search for and link with their donors. Study findings underscore the value of legislation and practices which enable disclosure in the context of ongoing openness and provide access to support for donor-conceived individuals.

We want to feel valued: eggs donors' experiences of donation.

Egg donation in New Zealand is identity-release, with donor-conceived individuals having the right to access donors' identifying information at the age of 18. It also allows donors and previously unknown recipients to meet prior to donation. Further, donation is altruistic, although reimbursement of costs is possible. In our previous paper we explored the motivations of 21 egg donors in this context and reported that they are motivated to donate as an act of personal gift-giving to recipients who may become known to them through donation, and that they do not want to be compensated for this financially. In this paper, drawing on in-depth interviews, we report on donors' experiences of the donation process and subsequent to donation. Donors understood their donations to be a significant act, both for the recipients and their families, but also for themselves, particularly given the multiple sacrifices which they willingly made. Donors wished for their gift and their role to be valued and acknowledged through being appreciated, informed, involved and supported by recipients and clinics before, during and after their donations. These findings have implications for clinical practice and care, offering insight into how best to support donors prior and subsequent to donation.

Embryo donation: Counselling practice issues and dilemmas within the context of identity-release donor programmes.

Embryo donation (ED) involves the donation of surplus embryos post family formation to others in need. Commensurate with Australian and New Zealand legislation and policy, ED is practiced as an identity-release programme shaped by four paramount principles. These include: the need to consider the longitudinal health and well-being of donor-conceived children born from assisted reproductive technologies (ART); recognition that offspring should be made aware of and be able to access information about their genetic origins; awareness that the short and long-term health and psychological welfare of other stakeholders (i.e., recipients and donors) should be ensured; and finally, that all donations are altruistic. Whilst embedded in ART legislation or professional guidelines, how these principles are operationalized through counselling in both countries remains variable. In this paper, we draw upon Australian and New Zealand research, legislation and policy shaping the counselling milieu. We highlight some of the key clinical issues that counsellors need to explore with participants of an ED arrangement and the implications of these as they apply to dilemmas within counselling practice such as counsellor roles and responsibilities.

Motivations for egg donation to previously unknown recipients: donation as a personal, relational act of giving.

Egg donation has becoming increasingly common however there is a shortage of donors in many countries, including New Zealand. Research regarding motivations to donate in the context of New Zealand's open-identity and altruistic donation policy and practice is, thus far, limited. This in-depth qualitative study comprised interviews with 21 women to examine their motivations in donating to recipients previously unknown to them. Donors valued parenthood highly and had become aware of the fertility struggles of other women through their own experiences, those of friends or family, or through online personal accounts or advertising. The ability to select recipients and build a comprehensive picture of them, such as through reading recipient profiles or meeting them in person, as is possible in New Zealand, deepened their identification with recipients and thus their empathy and desire to help. They resisted commercial models, positioning themselves as by nature altruistic and regarding their donations as expressions of solidarity and acts of personal gift-giving to specific others who became known to them through donation. Donation was interpreted as a socially relational process, setting up expectations around relationships and ongoing connection. Such understandings have implications for recruitment as well as ongoing experiences and support needs.

Brief Report: Investigating Temporal Factors in the Context of Parenting an Autistic Child.

The current study was a secondary analysis of cross-sectional data collected in New Zealand. Parents (n = 291) of an autistic child completed an online survey that included temporal/demographic questions relating to the parent and child, and parent ratings of the child's core ASD symptoms, their parenting stress, and psychological well-being. Child and parent ages were related to ASD core symptoms, parenting stress, and psychological well-being, the parent-child age gap was not. Diagnostic delay was only positively associated with parent depression and negatively associated with child communication impairment. Findings indicated that temporal variables can be predictive of parent well-being and child autism symptoms. The findings suggest that focusing interventions on communication abilities may have positive impacts parental mental health.

Fertility stakeholders' concerns regarding payment for egg and sperm donation in New Zealand and Australia.

New Zealand and Australia are countries which currently prohibit donor payment and require open-identity forms of donation. This study explored the concerns of fertility stakeholders regarding payment which would constitute financial reward for gamete donation, and factors predicting such concerns. A total of 434 participants from across New Zealand and Australia completed an online survey anonymously. Participants included those with infertility and treatment experience, donors, recipients, donor-conceived people and clinic professionals. Results indicated that participants' concerns related to their assumptions about the type of donor motivated by financial reward, and the possibility that, if paid, donors might conceal information relevant to treatment and the donor-conceived person. Furthermore, participants were concerned about increasing recipient costs. Participants with personal experience of infertility held stronger concerns overall. Professionals expressed concerns of clinical relevance, such as the withholding of donor information relevant to treatment outcomes. The lowest levels of concern were expressed in relation to payment devaluing the meaning of human life. Qualitatively, themes highlighted concerns regarding payment enticing the 'wrong' type of donor, increased cost to recipients, and concern about the wellbeing of donor-offspring. Collectively, such concerns must be understood against the New Zealand and Australia open-identity donation context which enables the possibility of contact between donors and offspring. These findings indicate that donor recruitment campaigns need to account for different stakeholder concerns, and consider ways to address donor shortages effectively while remaining compliant with legislative requirements.

Stress and distress in New Zealand parents caring for a child with autism spectrum disorder.

The aim of this cross-sectional study was to identify predictors of the mental health of parents of a child with autism spectrum disorder (ASD). A convenience sample of 658 parents residing in New Zealand completed an online questionnaire. Participants responded to questions probing parent and child characteristics, child ASD severity (the Autism Impact Measure: AIM), parenting stress (the Autism Parenting Stress Index: APSI), and parent mental health (the General Health Questionnaire: GHQ-28). The results indicated that the majority of the parents in our sample have reached clinical levels of psychiatric distress, in particular anxiety. Parent and child characteristics were poor predictors of parental mental health problems. Parenting stress, however, was found to be a significant predictor, also acting as a mediator variable between child ASD symptom severity and parental mental health problems. Our findings are interpreted in relation to their significance to clinical practice.

The Cold Shoulder or a Shoulder to Cry on? Mechanisms of Formal and Informal Social Support in the ASD Parenting Context.

The underlying mechanisms by which social support exerts its (typically) positive effects on parental wellbeing are still being investigated in the autism spectrum disorder (ASD) context. Parents (n = 674) of a child with ASD responded to questions probing parenting stress, parent psychological health, their child's ASD symptoms, and the types of social supports they were currently utilising. Hierarchical multiple linear regression analyses examined whether social support moderated or mediated (or neither) the relationships between: (a) parent-rated child ASD symptoms and parenting stress, and (b) parenting stress and parent psychological health. The main findings were that none of the mediating models reached statistical significance, while 7/20 moderation analyses were significant, though significance was dependent upon how social support was operationalised.

Support for recognition and payment options for egg and sperm donation in New Zealand and Australia.

STUDY QUESTION: To what extent do infertility clinic patients, fertility industry professionals and members of the public support different forms of payment and recognition for egg and sperm donation? SUMMARY ANSWER: While participants expressed support for reimbursement of expenses for both egg and sperm donation, payment constituting explicit financial advantage was regarded less favourably although potentially necessary to address donor gamete shortages. WHAT IS KNOWN ALREADY: In both New Zealand and Australia, commercial inducement for the supply of gametes is prohibited. This prohibition has been argued to contribute to limited availability of donor gametes with the effect of increasing waiting lists and/or the pursuit of potentially unregulated cross-border reproductive care by domestic patients requiring donor gametes. STUDY DESIGN, SIZE, DURATION: The study was a mixed methods study drawing on data from a questionnaire completed by 434 participants from across New Zealand and Australia between November 2018 and March 2019. PARTICIPANTS/MATERIALS, SETTING, METHODS: Stakeholders involved in donor-assisted conception (past and present infertility patients, gamete recipients and donors), fertility industry professionals and members of the public were recruited following online advertisement of the study. All participants spoke English and primarily identified as Caucasian. Participants anonymously completed an online questionnaire gauging their support for a range of recognition and payment options. Dependent samples t-tests were used to probe for differences in support of recognition and payment options in relation to egg and sperm donation. Linear regression models were used to determine factors predicting support for the different options for both egg and sperm donation. Thematic analysis was used to identify main themes in free text question responses. MAIN RESULTS AND THE ROLE OF CHANCE: Broadly, there was agreement that donors be reimbursed for medical expenses, travel time, unpaid time away from work relating to treatments and out-of-pocket expenses directly related to the gamete donation process, with greater support suggested for egg versus sperm donors. Items gauging support for non-material recognition and tokens of thanks for donations were not significantly different between egg and sperm donation programmes (P > 0.05) nor rated as highly as reimbursement alternatives. Lowest ratings of support were indicated for the outright payment or reward of donors for the supply of their gametes, options that would leave donors in better financial positions. Qualitatively, themes valuing gamete donation as ideally relating to gifting were identified, although counterbalanced in opinion by concepts of fairness in reimbursing gamete donors for their costs. Where payment over and above the reimbursement of costs was supported, this was related to pragmatic considerations of limited supply of donor gametes. LIMITATIONS, REASONS FOR CAUTION: This study used a cross-sectional design and consequently causal inferences cannot be made. Additionally, participants particularly professional fertility staff, were required to self-report on politically sensitive and legal issues with the potential for social desirability response bias. Snowball sampling may have led to participation of like-minded individuals, thus limiting generalizations of findings. WIDER IMPLICATIONS OF THE FINDINGS: In a climate of global commercialization of reproductive medicine, limited donor gamete availability and rising incidences of cross-border reproductive care, the findings of this study can be used as a basis for further discussion between regulators and professional industry stakeholders with respect to shaping ethical policy and practice relating to donor conception. STUDY FUNDING/COMPETING INTEREST(S): No external funds were sought for this work. None of the authors have any competing interests to declare. TRIAL REGISTRATION NUMBER: N/A.

The Types and Functions of Social Supports Used by Parents Caring for a Child With Autism Spectrum Disorder.

The challenges faced by parents caring for a child with Autism Spectrum Disorder (ASD) can amplify parenting stress, though the impacts of these challenges can be alleviated by social supports. A sample of 674 parent volunteers completed a survey probing the types of social supports currently being used, what function (i.e., tangible, emotional, financial, informational) they judged them to perform, and how each of the utilised supports reduced parenting stress and was considered helpful. Results indicated that informal social supports and social media were perceived as more helpful than formal supports, which were typically perceived in a neutral manner by parents. Overall, the study indicates that addressing the support needs of parents of a child with ASD remains a priority.

Brief Report: Parent's Assessments of Their Care-Related Stress and Child's ASD Symptoms in Relation to Their child's Intervention History.

Parenting a child with autism spectrum disorder (ASD) can be stressful. Understanding parent's perceptions of their stress and their child's ASD-related symptoms is important for both the well-being of parent and child and for other reasons, such as intervention adherence and diagnostic accuracy. We report parent (N = 570) ratings of both their ASD Care-Related Stress scores and their child's symptoms in relation to the child's exposure to five mainstream ASD interventions. Differences across intervention history in the way parents perceive their child's symptoms and rate the stressfulness of performing ASD-related parenting duties were found.

Coping and care-related stress in parents of a child with autism spectrum disorder.

BACKGROUND AND OBJECTIVES: Parenting a child with Autism Spectrum Disorder (ASD) is challenging and can result in elevated levels of parenting stress. This study investigated the relationship between parent-ratings of their child's ASD symptoms and two conceptually different measures of parenting stress: One specific to the ASD context and the other a general stress measure applicable to the broader caregiving context. Additionally, the influence of coping style on the relationship between child's ASD symptoms and parenting stress was investigated. DESIGN AND METHODS: Using an internet survey, parents (N = 178) caring for a child with ASD reported on coping strategies, completed two measures of parenting stress, and assessed their child's ASD symptoms. RESULTS: Parenting stress increased with severity of the child's ASD symptoms, but the strength of this relationship depended on whether a general or disorder-specific measure of parenting stress was used. Regression analyses indicated that some coping strategies moderated the impact of ASD symptom severity on the parent's care-related stress, but moderation depended on how stress was conceptualized. CONCLUSION: This study reinforces the importance of identifying the coping strategies of parents of children with developmental disorders, and highlights the consequences of using different conceptual approaches to measure parenting stress.

Symptom severity, caregiver stress and intervention helpfulness assessed using ratings from parents caring for a child with autism.

This exploratory study assessed the relationships between autism spectrum disorder symptoms, caregiver stress and intervention helpfulness, using parent ( n = 182) ratings. Advocacy and intervention-related tasks were rated more stressful than support tasks (e.g. toileting, mealtimes), indicating that advocacy is emerging as a major caregiver task for parents. Deficits in prosocial behaviours were perceived to have the highest impact on the child's function. No difference was found between mean helpfulness ratings across the six representative interventions taken from the New Zealand context. Differences in care-related task stress across intervention choices were better explained by differences in symptom severity, suggesting that impairment drives intervention choice. Limited evidence was uncovered suggesting that intervention helpfulness moderates the relationship between core autism spectrum disorder symptoms and parent stress.

Documenting and Understanding Parent's Intervention Choices for Their Child with Autism Spectrum Disorder.

Understanding why parents choose some interventions but not others for their child with autism is important for a number of reasons. Estimating the proportion of evidence-based interventions engaged, identifying the agencies influencing parental decisions, and elucidating the barriers or reasons leading to intervention rejection or discontinuation can result in better service provision. New Zealand parents (n = 570) of a child with autism reported what interventions were being engaged, and why some interventions were engaged but not others. Funding was a major determinant of intervention engagement, while medical professionals exerted the most influence. Sources of support were not related to intervention engagement, but parental perceptions of their child's symptom severity were. Finally, non-engagement does not necessarily reflect parental opposition to an intervention, but rather the existence of barriers.

Predictors of Satisfaction with Life in Parents of Children with Autism Spectrum Disorder.

This study examined the relationships between autism spectrum disorder (ASD) symptoms, care-related activities, and satisfaction with life (SWL) in 184 parents caring for a child with ASD in New Zealand. The relationships between coping styles and SWL were also examined. The parents' SWL scores indicated they were slightly dissatisfied with their lives. A stepwise linear regression showed three predictors (care-related health problems, carer esteem and financial difficulties) explained 47% of the variance in SWL scores. Several coping styles were associated with lowered SWL, and only emotional support was related to increased SWL. The regression model provides a focus for monitoring parental wellbeing, and stresses the importance of recognition and support for the substantial responsibilities parents of children with ASD face.

The Fate of Unused Embryos: Discourses, Action Possibilities, and Subject Positions.

Although in vitro fertilization (IVF) has offered hope to those struggling with infertility, it has also had some unintended consequences, including the fate of embryos that may be "surplus" to requirement following IVF treatment. The number of embryos in storage across the world is high, creating a dilemma for patients who need to make disposal decisions, as well as presenting an administrative and practical dilemma for clinics. Research has suggested that patients' views of the status of their embryo/s may affect their disposal decisions, and yet the nature of the links between views of the embryo and decisions to either donate or discard remain unclear. In this article, we engage in a discursive analysis of literature on disposal decisions. We discuss the range of ways in which embryos may be constructed, and demonstrate how these discourses make available or constrain particular action possibilities, and offer particular subject positions for patients. The analysis highlights the complexity of the relationship between embryo status and decision making, and may assist clinicians in supporting and guiding patients' decisions.