Birth family health history: adopters' perspectives on learning about their child's health inheritance.

Author:Hill, Catherine M.
Position:Report
 
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Introduction

The focus of medical advice where children are to be adopted is to ensure that full information about the child's future health risks is shared with prospective adopters so that they can commit themselves to the child with the best possible understanding of that child's known life risks. In particular, medical advisers to adoption agencies have a responsibility to gather and interpret information about the child's extended family. This responsibility is outlined in the Adoption Act Regulations 2005:

The adoption agency must obtain, so far as is reasonably practicable, the information about the health of each of the child's natural parents and his brothers and sisters (of the full blood or half-blood) ...

Birth parents of children in need of adoption have often suffered from physical or mental illness, learning difficulty or substance misuse (Hill, 2009). These difficulties may be of direct relevance to the child, either through risks of genetic inheritance or adverse early parenting environments. Ideally, birth parents give their consent for their health information and that of their extended family to be shared with adopters in the interests of the child's future. The BAAF Parental Health Form (Form PH) and Consent Form provide a vehicle for social workers to obtain and share this information.

However, in reality birth parents may be difficult to engage or absent. Where this is the case, doctors are placed in a difficult situation as they may nonetheless have access to this information from multiple sources: verbally from the child's social worker, from expert reports and from the child's medical records. Professional guidance promotes a duty to maintain the confidentiality of medical information and to withhold third-party information without the expressed consent of the party to whom this information belongs (Department for Education and Skills, 2006). The exception to this rule is where sharing of this information could be interpreted as being 'in the public interest', although it is unclear as to what this constitutes in this particular circumstance. Agency medical advisers are regularly faced with the dilemma of being in possession of important information about birth families but of lacking explicit consent to share this information with prospective adopters (Palmer, 2008). The aim of this survey was to furnish the debate with an important missing dimension, namely the perspective of adopters. Specifically, we aimed to understand the experiences of adopters in learning about their adopted child's birth family history and their views on the relevance of this information to themselves and their adopted child.

Method

The opinions and experiences of adoptive parents were sought in January 2008. A questionnaire was circulated to about 200 adoptive parents who were staff, volunteers or trainers for Adoption UK (a national self-help charity run by and for adopters). A notice was also placed on the message-board of Adoption UK's online community, comprising about 12,000 registered users (of whom some half to two-thirds are adoptive parents). The questionnaire comprised quantitative questions regarding the age of the adopted child, year of adoption and the nature of information received by the adopters about the birth parents. Semi-structured questions sought evidence and opinions on adopters' personal experiences and views.

Analysis

Quantitative data were anonymised and entered into an SPSS (v16) spreadsheet. Descriptive statistics were derived for continuous data. Data were categorised for age (less than two years versus more than two years) at adoption and year adopted (1998-2008 versus earlier than 1998) and categorical group differences were explored using a chi-square (Fisher's Exact) test. Text responses to semi-structured questions were analysed using a framework approach (Pope et al, 2000), with themes archived using a word-processing programme. Themes derived from content analysis were further refined and agreed between the two authors using an iterative approach. Data from quantitative and qualitative analyses were integrated or 'triangulated' in order to best understand the adopters' experiences (Tashakkori and Teddlie, 1998).

Results

Forty-five adoptive parents responded, representing the adoption of 57 children. Adoptive parents reported on experiences of adoptions spanning 20 years from 1987 to 2008. Twenty-eight children were adopted between 1998 and 2008 and 29 prior to that date. The average age of children when placed was 3.3 years (range one month to 11 years). Twenty-three children were aged one year or less at the time of adoption and 34 were aged two years or more. The age of the child at the time of survey was on average 12 years (range 1-23 years).

Aspects of birth parent health information available to adopters

One of the most striking findings was that overall, information was available for less than 50% of birth fathers. This was a common theme in responses:

Case 47: Uncertainty about our son's paternity has left a huge gap in knowledge about his paternal background and history ... We are left to cope with his psychological problems with only partial knowledge of his birth family history.

Questions were asked relating to three dimensions of health information: physical health, mental health and lifestyle. For both birth mothers and birth fathers, information about mental health was less frequently available than information about physical health and lifestyle (see Figure 1).

[FIGURE 1 OMITTED]

Although information about parental mental health was rarely available, adopters frequently identified difficulties relating to their child's emotional and behavioural well-being. Importantly, they identified that lack of information about birth parents had left them questioning to what extent their child's difficulties were genetic or could be explained by the child's early environment.

Case 47: Major psychological/emotional problems experienced in adolescence ... Aspects of his personality and psychological functioning may be partly determined by his genetic make-up, but lack of medical history, especially on his father's side, makes it difficult to determine how important genetic factors might be.

One respondent noted that the information may also be relevant to a child's lifestyle choices as they grow up:

Case 13: ... there have also been questions about his mental health and the levels of alcohol usage. My child has wanted to know about this repeatedly as she looks at her own lifestyle and health.

Opportunity to meet a medical adviser to discuss the child

Adopters were only given the opportunity to meet the medical adviser for a third of the children in this study. This was significantly more likely to have taken place for adoptions from 1998 onwards, 13/28, compared to earlier adoptions, 6/29 (Fisher's Exact p = .039), reflecting the increasing trend for face-to-face counselling with the medical adviser prior to linking. In only eight of these cases did the adopters feel that the doctor was able to share all relevant information with them. One respondent was very satisfied with the information available:

Case 21: The medical adviser was very helpful and answered our questions very satisfactorily. There was some question about the birth mother having ADHD and the medical adviser had already spoken to an expert in this field and had arranged that we could go to see this expert if we required. We found this whole experience to be very helpful and reassuring.

However, a more common perception was that the level of information was inadequate:

Case 42: The adoption medical was out of date at the time of placement, which the matching panel did not notice. Also, the adoption medical adviser appears not to have been given all the information required.

One adopter identified the difficulty of not knowing what questions to ask of the medical adviser despite having access to the information, highlighting the importance of skilled counselling at this time:

Case 50: As far as I know, I do not think that information was held back from us at the time our son was placed as I was allowed to look through files very thoroughly. What I did not have was enough knowledge to ask really detailed medical questions. I don't think our social workers at the time had enough of this knowledge either to adequately advise us.

Many respondents noted the difficulty of distinguishing whether information was complete, indicating lingering concerns about missing detail in their child's family history:

Case 35: I believe we received most of the information we needed from our child's social worker, foster carers and therapist, though it's not always possible to know what else we could or should have been told.

Some adopters expressed frustration about the lack of effort made in securing family history data for children:

Case 10: It seemed to be quite acceptable that there was little information about the birth father, even though at that stage he was fully accessible and available for personal information to be sought.

Case 54: My GP and health authority lost our daughter's records at the point of sending them back to do the name change post-adoption and no one took responsibility for finding them, each saying the other had them and telling me to follow up. They were also very casual about the importance of the records ...

Others noted that information was shared only after the child had been placed:

Case 42: Relevant information was not revealed about the birth mother's health and lifestyle until after placement ... only ten months after placement did I finally receive the background medical and lifestyle information of the birth mother which meant that my child was at risk of blood-borne viruses.

Interestingly, when an adoption order has been granted, adoptive parents have the opportunity to access their child's medical records which may contain birth family data:

Case 9: Once we adopted our son I...

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