Sonja Goedeke

Embryo donation in New Zealand: a pilot study

BACKGROUND In New Zealand, embryo donation to others was approved in late 2005 and follows strict guidelines. To date, few donations have proceeded. Given the novelty of embryo donation and New Zealands guidelines around donation, this study explores how potential recipients in New Zealand made meaning of embryo donation. METHODS Thirteen potential recipients were interviewed regarding decision-making around embryo donation. Data were analysed thematically, identifying the major concerns that shaped their perspectives and decision-making regarding embryo donation. RESULTS The concept of genetic lineage emerged as the most important consideration. Participants viewed the embryo as a direct and permanent link between the genetic parents and the child resulting from donation. The genetic link implied ongoing responsibility, interest, care and even ownership. Participants were particularly cognizant of the need for children born from embryo donation to have access to information regarding their heritage. Wider concerns around the quality of the embryos genetic material were expressed. Neither discarding surplus embryos nor embryo donation was seen as easy options. Participants found embryo donation to be a psychologically and morally complex issue and expressed some caution about pursuing this option. CONCLUSIONS The emphasis on genetic lineage as a priority in decision-making needs to be recognized especially within contexts where guidelines emphasize donor registration and cultures are shaped by open-adoption practices and the importance of knowing ones lineage.

Building extended families through embryo donation: the experiences of donors and recipients

STUDY QUESTION How do embryo donors and recipients understand and experience embryo donation (ED)? SUMMARY ANSWER Donors and recipients regard the genetic link between donors and donor-conceived child as significant, and draw on metaphors of ED as adoption and as building extended family networks in order to manage the complex interplay of genetic, gestational and social aspects of reproduction and family-building. WHAT IS KNOWN ALREADY The uptake of embryo donation internationally is relatively low and there has been little research into the outcomes and experiences of ED for donor and recipient families. STUDY DESIGN, SIZE, DURATION Embryo donors and recipients in New Zealand were interviewed between March and October 2012 as to their understandings and experiences of embryo donation. PARTICIPANTS/MATERIALS, SETTING, METHODS Participants were recruited from across New Zealand and interviews were conducted with 22 donors (10 couples, 2 individuals) and 15 recipients (5 couples, 5 individuals). Interview data were analysed thematically to identify factors that influenced their perspectives and affected their experiences. MAIN RESULTS AND THE ROLE OF CHANCE The genetic link between donors and offspring is regarded as bestowing immutable social ties by both donors and recipients. This makes ED a difficult choice for both donors, who experience a sense of ongoing responsibility for offspring welfare, and for recipients, who may have concerns about the donor-offspring bond. Disclosure of genetic background is regarded as critical for the welfare of both the donor-conceived child as well as siblings in the donor family. Both donors and recipients draw parallels between ED and open adoption practices, and draw on extended family constructs in order to describe their relationship to each other. LIMITATIONS, REASONS FOR CAUTION Donors and recipients were interviewed at various stages of the ED process, and experiences may change over time. WIDER IMPLICATIONS OF THE FINDINGS The comparison of ED with open adoption practice and the metaphor of extended family-building both help make sense of and complicate the ED experience. These concepts help to structure expectations for the assessment for ED, the disclosure of donor conception, and the nature of relationships, information-exchange and contact. STUDY FUNDING/COMPETING INTERESTS This study was funded by an AUT University Faculty of Health Environmental Sciences research grant.

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.

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.

The Discourse of Gifting in Embryo Donation: The Understandings of Donors, Recipients, and Counselors

In New Zealand, embryo donation (ED) is “open,” allowing offspring to access genetic information. Donors and recipients meet prior to donation. Drawing on interviews with 15 recipients, 22 donors, and nine counselors, this article discusses how ED may be constructed as a form of gifting. This discourse may evoke expectations that recipients will express gratitude for the gift, including through honoring contact agreements. Donation becomes a relational practice of obligations and counter-obligations. However, the gift discourse may not adequately capture the emotional sacrifice experienced by donors. Donors describe significant attachment to their embryos, ambiguity about relinquishment, and interest in offsprings’ welfare. Furthermore, embryos may be constructed as inalienable bodily gifts resulting in children with whom the donors share immutable social ties. A discourse of ED as mutual exchange, collaboration, and extended family building may be more useful to donors and recipients in managing ED.

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.

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.

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

ABSTRACT 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.

Towards an Understanding of Embryo Donation in New Zealand: The Views of Donors and Recipients

Embryo donation (ED) involves the transfer of surplus embryos following IVF to another infertile person/s. While ED may offer a solution for couples who have embryos remaining after IVF and completion of their families, and for those affected by infertility, ED raises significant psychosocial and ethical concerns. In New Zealand, the donation decision and experience of ED is complex for specific cultural and social reasons. In this chapter, we discuss whether or not embryos are regarded as cells that constitute a resource for family-building or whether they have immutable social ties to the donors by virtue of genetic and genealogical links. We explore some of the longer-term issues involved with ED and offer a framework from which to make sense of this practice.