Contents

Part One Children and Young People's Understanding of Sexuality, Fertility and Parenting 17 1. Sexuality and Sexual Health Throughout the Childhood Sarah Andrews, Director of Passion Training and Consultancy, UK 2. The Views of the Next Generation An Exploration of Priorities for Adulthood and the Meaning of Parenthood Amongst 10-16-year-olds 33 Claire Fraser, freelance researcher, Rachel Balen, University of Huddersfield, UK, and Dorothy Fielding, University of Leeds and StJames's University...

Selfconcept body image sexual identity

Cancer has the potential to influence development of self-concept, a key task, among young people (Rowland 1990). Alterations in physical appearance, including weight changes, hair loss, amputations, placement of catheters to facilitate treatment administration, scars and alterations in skin colouration and texture, not only make children and teens feel different from peers but also may represent frightening changes in the body with an adverse impact on self-esteem. Fears that the body will...

Achieving change and improving outcomes developing successful fertility services

The final discursive practice with which we need to engage embodies another fundamental key tension. The critical emphasis of current literature on ethnicity, health and social care is perhaps understandable and has successfully highlighted the negative consequences of racism, marginalization and unequal treatment (Mason 2000). Policy and practice, however, have been less successful in translating these insights into improvements in service delivery (Atkin 2004). Consequently, practitioners...

Adam 11 years old five years after my relapse

I get upset when I think about my mum having cancer because my mum can't run and stuff. When my mum has her anniversary or check-up I get worried thinking she might get ill again and when I was nine I cried in the playground but I didn't tell anyone because my friends wouldn't understand. But it is amazing my mum survived and all her doctors thought she wouldn't make it. Something told me she was going to be okay all the way through. I think my dad loves my mum more because of what she has been...

Age

Six weeks after the final surgery, I was introduced to dilatation. Dilators at this time were glass, similar to test tubes but stronger. They were coned, phallic-shaped instruments graduating from quite small to 'average male' size. The experience was very traumatic and not how dilatation should be done. The doctor roughly inserted the dilator into the barely healed vaginal opening then removed it and repeated the process a number of times. I was told to go away and do...

Children and young people who are HIVpositive the journey forward

Studies show children with perinatal HIV infections who are ageing into adolescence are typically healthy and may have no outward symptoms of the disease (Thorne et al. 2002). The majority are on several medications (ibid.) and must confront the difficulties of adherence to a complex medical regimen. They tend to be a heterogeneous group in terms of drug history and sexual history despite their health condition, they are like their HIV-negative counterparts in that they are vulnerable to risky...

Conclusion

I have attempted in this chapter to draw together relevant research and my own experiences to enhance our understanding of the problems facing the cancer survivor and the transition to parenthood. I believe this is an area ripe for research and one that can contribute to a better psychological outcome for survivors, significantly enhancing quality of life. Improved and effective communication throughout the cancer journey, a multi-disciplinary approach to long-term follow-up, as well as...

Family illness

Life-threatening illnesses in childhood are seen as family illnesses as everyone in the family is affected when children are ill. HIV is unique both because, although not an illness as such, everyone is impacted by the condition and because more than one person in the family has it. Sometimes, every member of the nuclear family is HIV-positive. As a result, there are 'emotional' connections to the condition for everyone and every family member plays a role. Given the nature of HIV, each of...

Findings

Figure 2.1 presents composite percentage rankings for the 98 responses to the ranking exercise. We defined an ambition as 'highly important' if it was first, second or third on their list. Eighteen per cent (18) ranked the ambition 'to have children of my own' in the top three of their priorities. These responses were then analysed according to age and gender (Figure 2.2) and some differences were observed. In School Years 6, 7 and 9 this ambition was more important for boys and the reverse was...

Implications for HIVpositive children and young people

To be a teenager and to have a sexually transmitted disease that was not acquired through sexual transmission opens up a whole new arena for observation. The emotional implications have not been studied. When you are born HIV-positive, there is a feeling of having no control over your life. Nothing you did got you to be HIV-positive and nothing you can do can get you to be HIV-negative. Disclosing one's HIV status places a great strain on relationships, meaning there is no such thing as a...

Introduction

This chapter is a little different from others in this volume. It has a broader scope. Such a focus, however, makes a great deal ofsense. There is little discussion and much less research exploring ethnicity and fertility (Culley etal. 2004 National Institute for Clinical Excellence 2004). This is perhaps not surprising and represents a more general problem research rarely responds to the multi-ethnic nature of developed countries, while policy and practice struggle to engage with minority...

Method

We used a mixed-methods design with 98 participants. All were pupils from seven schools in the north of England, aged from 10-16 years (mean age 12.8 years). Forty-six (47 ) were male and 52 (53 ) were female. Ninety-five per cent ofthe sample were White, two per cent Black Caribbean and two per cent Asian. Local census data confirms that these figures are representative of the local area population. Given the relatively small numbers involved, we did not ask the respondents to declare any...

Parental illness as a factor

Knowing of the advanced illness or mortality of a parent has a dramatic effect on the developing child. One study examined adolescent adjustment before and after an HIV-related parental death (Rotheram-Borus et al. 2005). Sexual risk behaviours increased after death and were sustained over the subsequent year and beyond. While the authors attribute this to adolescent developmental intimacy, it also may reflect the teens' need to 'connect' in the face of such a loss and combat ongoing feelings...

Summary

Young people with CF face the same array of sexual and reproductive health issues as otherwise healthy young people, but face additional sexual and reproductive health issues that are specific to CF. The focus here has been on fertility and the management of reproduction, but could equally have focused on other sexual and reproductive health complications of CF, such as vaginal yeast infections and urinary incontinence. While there have been significant advances in our knowledge and management...

The course of the lives of children who are HIVpositive

This particular group of children and young people have lived during two very different times. Initially there was a sentiment that children should not know their diagnosis. This was because society had not made peace with the idea of children diagnosed with a condition that was both potentially infectious and life-threatening. Currently there is more of a focus on informing children of their diagnosis (American Academy of Pediatrics 1999) and research suggests the benefits to the child and...

Then what

There is a consensus within the field ofmedical ethics that informed consent should be understood as a continuing process rather than a one-off decision captured forever by a signature on a form (Royal College of Physicians 1996). Consider the way that time might alter the manner in which a decision to preserve tissue or gametes might be perceived by the parties involved. Inevitably, the child or young person themselves will become increasingly able to grasp the complexities of their...

Freezing and longterm storage of sperm

The science that underpins successful sperm cryopreservation has been reviewed many times (see Fuller and Paynter 2004) and involves a complex understanding of physics and biology. However, in simple terms, cryo-storage is able to keep sperm in a state of'suspended animation'. The ability to keep sperm frozen in this state relies upon the addition of a cryo-protectant to the sperm sample before it is cooled to the required temperature. While there are a number of different formulations of...

Menstrual cycle abnormalities

Amenorrhoea (the absence of menstruation) may be temporary or permanent (usually of at least six months' duration). It is best classified according to its aetiology, or site of origin, and can be subdivided into disorders of the hypothalamic-pituitary-ovarian-uterine axis generalized systemic disease. The failure to menstruate by the age of 16 in the presence of normal secondary sexual development, or 14 in the absence of secondary sexual characteristics, warrants investigation. This...

Methodology

Local Research Ethics Committees' approval was obtained. Single interviews were undertaken that focused on the young men's and parents' retrospective perceptions of the content and style of communication within the family and with professionals surrounding the decision-making about, and management of, sperm storage following a diagnosis of cancer. A qualitative approach was used to allow respondents to raise issues pertinent to them (Robson 1998). Prompts were made either for clarification or...

Question four what about my children

Survivors worry greatly about their offspring's risk of inheriting cancer. Studies have shown that this is the greatest source of concern amongst survivors (American Society for Reproductive Medicine 1995 Stephen and Chandra 1998). This occurs even in situations where cancer type is not part of an inherited syndrome, despite reassuring evidence to the contrary (Green et al. 2003). At present, no increased risk of cancer in survivors' offspring has been demonstrated and yet amongst cancer...

The complexities of decisionmaking

When young people themselves, or the parents in the case of a younger child, are faced with the prospect of agreeing to a medical intervention that might preserve their reproductive options in the future, they must contend with many uncertainties. What is the status of the intervention on offer What are the potential risks and benefits of participating - or not Who is to make this momentous decision and how might they be best advised In addition, there is the potential in fertility preservation...

Discussion

The children and young people in our study indicated that their most important ambition was to have good friends. In School Years 8 and 9 (12-13 and 13-14 years) this was more important for girls than for boys. The second most important ambition was the desire to have good health. Third was to be in love with someone special and in School Year 7 this was more important for boys than for girls. The desire to have children was much less important, appearing low down on the overall rankings and...

What is Turner Syndrome

Turner Syndrome is a common genetic condition found in approximately 1 2000 live female births. A syndrome means a collection of features and for those with TS this includes a combination of characteristic physical features and a complete or partial absence of the second sex (X) chromosome in some or all cells (Saenger et al. 2001). Described and named by Henry Turner (1938), nearly all those with the syndrome have short stature and insufficiently or non-functioning ovaries and thus face future...

Sexual health

Sexual health was defined by Mace, Bannerman and Burton (1974) as a capacity to enjoy and control sexual and reproductive behaviour in accordance with social and personal ethics freedom from fear, shame, guilt, false beliefs and other psychological factors inhibiting sexual response and impairing relationships freedom from organic disorders, diseases and deficiencies that interfere with sexual and reproductive functions. (p.10) While other definitions have been explored since then, this one...

Riskbenefit analysis

The prize that beckons at the end of the trail that starts with diagnosis is not hard to describe. The medical treatment programme on which the young person is due to embark may ensure their survival at the cost of several significant side-effects. One price that the individual may have to pay is that their reproductive capacity may be permanently impaired. Cryopreservation offers the promise of being able to bank tissue or gametes pre-operatively so that the individual's reproductive...

Legal framework

The Human Fertilisation and Embryology Act entered the UK statute books in 1990 and was implemented on 1 August 1991. It covers the majority of, though not all, assisted conception treatments and requires that centres providing such treatments or carrying out proscribed research should be licensed and inspected annually. It set up a regulatory body - the Human Fertilisation & Embryology Authority (HFEA) - with the function of inspecting centres and issuing licences, producing a Code...

Life ambitions

Research has begun to focus on children and young people's priorities for adulthood. Roberts and Sachdev's (1996) UK study examined young people's (12-19 years) social attitudes amongst the wealth of data generated were findings about ambitions. Fifty-nine per cent of their participants rated their most important life ambition (ranked first or second) as being happy, while 27 per cent wanted to have a family. Good health was important for 24 per cent of the sample, closely followed by having a...

Developmental considerations

When post-pubertal adolescent males are invited to provide semen samples for storage it is probably fair to assume that most will have the cognitive capacity to consent. As the technologies associated with cryopreservation and potential re-implantation of genetic material develop, younger patients will be in a position to benefit from storage of tissue. Should parents then make ethical decisions on their child's behalf or can minors still be included in the choices to be made about their future...

Restoration of fertility

At present our ability to preserve and store ovarian cortex is far ahead of the development of the methods that are needed to realize the fertile potential of this tissue. Two approaches are being explored at the present time. To date, the most viable clinical option for fertility restoration in girls and young women after ovarian tissue cryopreservation is centred around orthotopic or heterotopic autografting of cryopreserved tissue (Figure 5.1). Indeed there have now been a number of reported...

The structure of the book

While there is an increasing literature that acknowledges sexuality in adults with physical impairments or health conditions, there is a marked lack of writing about childhood or adolescent sexuality and fertility issues. Contrast this to the burgeoning industry that surrounds teenage sexual health but which uses a narrow definition of sexual risk-taking and limited underpinning understanding of teenage sexuality and results in a concentration on pregnancy avoidance and reduction in sexually...

Identity diversity and difference young peoples experience of fertility difficulties

Understanding barriers to providing responsive and equitable service provision for minority ethnic populations suggests further themes relevant to our debate. Ethnicity is a notoriously difficult concept to define and conceptual confusion sometimes occurs (Bradby 2003). In some ways, the multi-faceted nature in which we have come to understand 'ethnicity' has advantages as we attempt to tackle disadvantages and discrimination (Chattoo, Atkin and McNeish 2004). If nothing else, it reminds us of...

Bethany five years old four years afier my relapse

'Mummy, Megan's grandpa died yesterday and she is very sad. She cried in class and Miss gave her a cuddle.' Bethany's face is pinched and worried and my heart lurches ominously. 'Cancer. He was very old.' She pauses and I know she wants to ask more. 'Mummy, you had cancer didn't you ' 'So .are you going to die soon ' Then she looks at me and her lip is trembling and her eyes are brimming with tears and my heart breaks for her. 'My friend said you will die like Megan's grandpa because you had...

Research or treatment

There is a sound scientific basis for the belief that cryopreserved tissue taken from young people prior to treatment for childhood cancer might allow them to beget their own children in the foreseeable future. However, there are many more links to be demonstrated in the evidence chain before these procedures can achieve the status of an established treatment. So the honest way to describe the interventions on offer might be promising, but experimental (Grundy etal. 2001a). This is precisely...

The Study

Our study focused on responses from a population of children and young people in mainstream education rather than specifically from those receiving medical treatment for illness, living with a health condition or disability or receiving special education. This sample was chosen in order to provide some benchmark information since discussions about infertility and possible fertility preservation options sometimes have to be entered into at a time of diagnosis that is, before any psychological,...

Background

There are a number of incidences where young patients may wish to protect and or preserve their future fertility. Fertility preservation may, for example, be advocated in girls and adolescents undergoing surgical interventions where the ovaries must be removed as a consequence of abdominal trauma. For adolescents and young women who have a familial history of premature ovarian failure, it may be foolhardy to delay child-bearing (Conway 2001 Davis etal. 2000). These patients may elect to...

My path to parenthood

As adolescent and young adult cancer survivors age and mature, they appear to lack critical information necessary to make informed choices about family planning including regarding their cancer and its treatment types and dosages of treatment in some cases, even the type of cancer they had and knowledge about potential long-term physical effects (Kadan-Lottick etal. 2002). Given that there is a general lack of knowledge about the anatomy and physiology of reproduction among adolescents in...

Not the purview of the paediatrician

Coming to recognize HIV-positive youth as sexually interested and active imposes a struggle for both health and mental health providers in paediatrics A 12-year-old denied any interest in sex when talking to herdoctor. The team was taken by surprise when they received a call from the school saying the 12-year-old was found having oral sex with a peer. Perhaps due to their own discomfort or disbelief that children should be sexually active, providers may overlook or deny signs that suggest...

Many unanswered questions

In the process of understanding the development of sexuality and intimacy in relationships for HIV-positive children, many areas worthy of assessment and exploration emerge. Among the questions for enquiry are 1. Do you think about sexual behaviour differently if you grow up knowing that your parent is HIV-positive 2. What are children's feelings for parents from whom they contracted the condition 3. Do you think about sexuality differently if you grow up HIV-positive 4. Is it influenced by the...

Fertility

Prior to starting my own chemotherapy treatment, my doctor informed me that I most likely would become infertile from the drugs that would cure my cancer. Being so focused on living and (not) dying, I was not really thinking or worrying about having children later. However, my doctor suggested sperm-banking as the answer to my probable treatment-induced sterility Suggesting that sperm-banking is the answer to infertility is like saying that chemotherapy is the answer to cancer. There is an...

Jane Davies

There are many, many different reasons for infertility and here is my family's experience. It will resonate with some of you and not with others. So hold that in your mind as I tell you my story We found out by chance that our son was almost certainly infertile when he was just 16. We were told by the experts not to tell him because, they said, 16 isn't a good time to tell a young man that he's probably infertile. Now I absolutely agree with them that it isn't a good time, but is 17 any better...

Sarah Clough

Mum and Dad told me I had Turner Syndrome when I was 15. They had just found out themselves. My first reaction and gut instinct was 'What man will want me now ' Mum and Dad reassured me that any man worth his 'salt' would want me for me not for what I may or may not be able to give him. So the process of coming to terms with infertility had begun. OK, so I was infertile but did it change me I had Turner Syndrome but was I really that different Yes, deep down I was, my chromosomes were...

Psychosocial development in young people with CF

Growing up with a chronic illness such as CF has both a physical and emotional toll on young people's psycho-social development. The growth and pubertal delay common in CF has been shown to have a negative effect on young people's self-esteem and body image and other people's perception of their age and development (Sawyer etal. 1995). This is further complicated by the other obvious physical markers of CF, such as surgical scars, the visibility of permanent intravenous access ports and body...

From Early Adolescence to Adulthood

Edited by Rachel Balen and Marilyn Crawshaw Jessica Kingsley Publishers London and Philadelphia Front cover artwork Arrow by Dan Savage 'The arrow to the left-hand side of this piece depicts the arrow that was drawn on my leg for the operation. That such a rudimentary method was employed by the doctors prior to a major operation seemed to me to be rather basic. As I found out more information about my condition, I began to reflect on my own life. This self-reflection is symbolized by the use of...

Development of sexuality and sexual identity

Sexuality is a dynamic concept and is about much more than sexual activity and sexual orientation alone. It includes what being male or female means to us and how we express our gender how we feel about our bodies, about our appearance and about physical pleasure whom we are attracted to and what we choose to do about it and, if we have intimate relationships, how we behave with our partners. Our ability to reproduce comes from our sexual behaviour and our feelings about our sexuality and...

Years old 18 months after my relapse

I sit with my friends waiting for my kids' races. Last week my scans were clear - no cancer anywhere. Today I am celebrating with my friends so our ice-box contains strawberries and a bottle of wine. I overhear a bored dad saying, 'I hate sports day, don't you ' Immediately I think back to last year when my cancer was at its worst and I sat through sports day crying for the children I might not see grow up. But now things are different and I am 'all-clear'....

Future developments in fertility preservation in males

Although the cryopreservation of ejaculated (or surgically recovered) mature spermatozoa remains the mainstay of fertility preservation in males, there are a number of areas of current research which, if successful, could revolutionize fertility preservation. The first is based on an approach to try and actually prevent the death or damage to the population of stem (sperm-producing) cells in the testis that typically occurs following exposure to radiation or alkylating agents (see above)....

Unintended Catharsis Through Intended

As an artist, I was already using images of myself before I experienced illness at first hand. However, this took on a new dimension when, during my second year of a Fine Art degree, my diagnosis and treatment for testicular cancer necessitated a period of leave from university. During chemotherapy, I kept a sketchbook of pencil drawings in which I recorded much of the emotion and trauma of my treatment. When I had completed my treatment, I created a body of work based on my experience. I used...

Life tasks and challenges in adolescent and young adult cancer survivors

The end of cancer treatment, returning to school or work, leaving home, dating, starting a family and or a career and establishing regular and appropriate health care are all important stages of young adult cancer survivors' lives. These life stages carry with them the potential for new understandings of cancer's impact, new worries or concerns, and new challenges to physical health and abilities. It may be that at certain life transitions some survivors find their worries realized, find it...

Mllerianuterine anomalies

Uterine anomalies occur in between 3 and 10 per cent of the fertile female population and are often discovered by chance during coincidental investigations for infertility They have usefully been classified by the American Society for Reproductive Medicine into five groups. Women with uterine anomalies are usually asymptomatic, unless there is obstruction to menstrual flow, when cyclical pain may be experienced. While infertility per se is rarely caused by uterine anomalies, they may be...

Young people citizenship and disadvantage understanding fertility and ethnicity

We start by exploring how received ideas of legitimacy and interpretation inform engagement with minority ethnic people who have fertility problems. 'Institutional racism' has recently become a popular explanation for the inability of services to respond to the needs of an ethnically diverse society. In the UK context this can be attributed directly to the Macpherson Enquiry (1999) into the death of Steven Lawrence.1 Macpherson provided the term with moral authority, which found legal...

My experience of living and coping with CAH

As a female with salt-wasting CAH, growing up was quite traumatic. My parents knew very little, as doctors had simply told them I would need steroid replacement for life in order to stay alive and that they could 'fix me surgically' for the genital ambiguity. While doctors were allowed to examine, poke and prod intimate parts of my body, no explanation was given to me other than 'Take the tablets, have the surgery, don't ask questions, don't tell anyone anything and don't touch, everything will...

Abnormalities of female genital tract and intersex disorders

Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH or Rokitansky Syndrome) occurs in 1 5000 female births and may be associated with renal tract anomalies (15-40 ) or anomalies of the skeletal system (10-20 ). Girls have spontaneous development of secondary sexual characteristics as ovarian tissue is present and functions normally. The external genitalia have a normal appearance but the vagina is short and blind ending. Hormone treatment is not required as ovarian oestrogen output is normal and...

Preservation of oocytes

The current options available to preserve the fertility of young patients, irrespective of their diagnoses, are limited. The methods used include assisted reproductive techniques such as in vitro fertilization (IVF), which enable collection and freeze storage of embryos before myeloablative4 cancer treatment (Atkinson et al. 1994). However, assisted reproduction is costly and stressful, carries no guarantee of success, may create 'orphan embryos' if the woman dies and requires that the patient...

Openness sex education and sexual health services

Parents and teachers are often nervous about addressing the sensitive and potentially embarrassing subject of sex education. While some adults may fear that once young people know that sexual intercourse exists they will immediately rush off to try it, the evidence is to the contrary (Kirby 2002). Those countries that appear to offer the most effective sex education have the lowest teenage pregnancy rates and a higher average age for the start of sexual activity (Alan Guttmacher Institute...

Intersex disorders

Intersex conditions consist of a 'blending' or mix of the internal and external physical features usually classified as male or female Creighton and Minto 2001 . Prevalence is difficult to ascertain due to different definitions of the condition, although range between 0.1 and 2.0 per cent Blackless et al. 2000 . These are very rare conditions and must be managed in centres familiar with them. A multi-disciplinary team MDT that includes paediat-ric surgeons, urologists often paediatric and adult...