We offer the chapter with a list of practical suggestions for adopting a norm-critical approach in providing health care for girls and women (Table 12.1).
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In acute hospitals in the UK, health care psychologists work within specialist health care teams including pediatric and adolescent gynecology (PAG) services. Their role with patients is to maximize function and minimize distress associated with chronic physical health conditions. In PAG, the conditions may include menstrual problems, differences of sex development, gynecological cancer, and pelvic or genital pain.
Re-engagement with preferred life goals and maintenance of relationships following body-altering illness or treatment are a typical clinical focus for psychologists. Women who have experienced genital trauma or birth complications or have been sexually abused may require psychological therapy to enable them to undergo essential medical investigations and treatment. Psychological interventions can also boost the effectiveness of medical treatments via motivational and behavior-change strategies to improve adherence to self-management.
These activities, tackle health, illness, and health care experiences at an individual and familial level. Psychological research and practice in health care has been criticized for its weak conceptualization of societal framing of human experiences [1,2]. At the simplest level, a care provider and care recipient transaction is a meeting between two social beings, typically in an unequal relationship. At another level, there is a subtle collision of two sets of perceptions, assumptions, expectations, and values. One such set of perceptions concerns social norms, that is, our preconceived ideas of what is socially acceptable. Critical psychologists (psychologists who challenge mainstream approaches) consider it imperative for care providers to be alive to the values (and value judgments) that are shaping thought and action in doctor-patient interaction and health care processes overall.
This chapter focuses on medical conditions that challenge social norms for bodily appearance and function and sexual practices. We present arguments for positioning multi-professional care for affected girls and women within a norm-critical framework. While we recognize the impact of social pressure to achieve normalcy via medical interventions, we present alternative approaches that respect diversity in body and identity and encourage PAG specialists to question conformity to gendered norms as a treatment goal. In the final section, we present the clinical management of vaginal agenesis as an example of how to offer the service differently, These principles are applicable to a range of PAG conditions including vulval appearance distress, vulvodynia, pelvic pain, or ovarian failure.
Normative Pressure
Research into sex differences, gender identity (identifying as a woman or man), and sexuality (partner choice, fantasy, activity) has continued apace since medical researchers began to focus on psychosexual development [3]. However, health professionals typically aim to modify, restore, or repair toward “normal” function, as if “functions” relating to gender and sexuality are straightforward entities. It has been argued that normal femininity and masculinity are constructed and contested realities that cannot be reliably defined [3]. In devising treatment plans, it is important to be aware of the values and assumptions embedded in the goal of treatment.
Many individuals, families, and communities may have a more flexible perspective on sex and gender than health professionals. Fluidity in gendered identification and behavior in childhood is arguably more acceptable for families and communities than is assumed by clinicians and researchers. For example, research in the relationship between prenatal hormones and gendered behavior in girls with classical congenital adrenal hyperplasia (CAH) rarely draws attention to the fact that these effects are not necessarily considered a problem by the children and their families [4]. Attitudes in the wider culture, which may be reflected in the family or the health professional’s behaviors, will affect the children’s interpretation of their gender development and influence their self-acceptance and self-esteem.
Because the development of gender identity and sexuality continues across the lifespan, medical interventions in childhood and adolescence can have unknown consequences. Norm-critical approaches offer a way of thinking about questions often taken for granted, such as What is normal? What does it mean to be a woman? What kinds of bodies can be called female? From a norm-critical perspective, it is assumed that not all girls will grow up to be women. Some girls will become transmen, who may or may not retain their female-typical anatomy. Furthermore, it is important to recognize that not all young women seek sexual relationships with men, not all heterosexual women seek to engage in coitus, and many people do not aspire to a typical sex anatomy [5].
In clinical consultations, patients react to verbal and nonverbal cues that may inhibit or encourage their own expressions and, importantly, how they should decide. Without the capacity to reflect on practice, clinicians may subtly steer their patients toward conformity to social expectations in sex and gender that lead to fear and shame for some individuals. Likewise, how a genital examination is conducted might indicate to the patient that her body is worrying.
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| Discussing elective interventions for a woman with CAH: | |
| “Would you like to be referred to a voice trainer to feminize your voice?” | “Please tell us about any concerns that you may have about living with CAH.” |
| This presumes that the patient wants to conform to gender norms. | This allows the patient to name her own concerns without preempting them. |
Without the conscious intention to reflect on language and practice, the clinician may inadvertently privilege some patients and disadvantage others. For example, in routinely introducing fertility options, the clinician is assuming that all women want to become mothers. This may valorize the wish to become mothers and diminish women who up until this point have felt disinclined toward motherhood.
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| After identifying a fertility challenge: | |
| “You can still have children; these are your options …” | “Some people want to be parents and some don’t. We can discuss the options if and when, or not at all.” |
| This suggests to the patient that she should be interested in becoming a mother. | This opens up the topic of parenting without communicating any right or wrong in how the patient chooses. |
Some clinicians may unknowingly silence patients who do not conform to social norms or feel uncomfortable discussing them. Others may be too eager to help women yield to normative pressure, such as removing healthy and sensuous labial tissue of girls and women. It is important to be wary of the misappropriation of patient “choice” when such “choice” is a manifestation of oppressive cultural values for women [6]. Interventions to meet social expectations may be doomed to fail, as idealized genitalia are not surgically altered genitalia [7,8].
Accepting Diversity
To consider the bodies of girls and women as diverse and functioning differently is to recognize the possibilities for fulfillment of their potential. Clinicians, parents, and individuals might usefully think about how the body can function as it is and what adaptations in behavior, attitude, or expectation can optimize function.
Communicating with Parents
Raising resilient children who competently manage health and development issues rests heavily on parenting. The style of communication between parents and health professionals, following the diagnosis of a childhood condition, makes a significant difference in parents’ ability to understand the medical process ahead and to foster their child’s well-being through that process [9,10]. Focusing primarily on intervention and modification at this stage suggests there is a need to “right a wrong.” This is far from helpful when communicating with parents about the day-to-day problems that they and their child may face.
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| Reaching a diagnosis and planning care with parents: | |
| “Now we have a diagnosis, we will introduce you to our surgeons and psychologist to talk about treatment.” | “Now that we know more about you and your baby, let’s discuss how our team can support you all now and in the future” |
| This presumes that treatment is a priority for the service and immediately puts parents under pressure. | This ensures that the welfare of the baby and family is the central focus of the service |
Consultations with parents concerning an infant who is different can be highly emotional, and the medical information that resonates with parental emotions is more likely to be remembered. How a condition is explained forms the basis of the parents’ narratives about their child [11]. Extreme emotions can prevent parents from having a thorough discussion about their child’s care plan and making clear-headed decisions as discussed in chapter 5. Parents should therefore be encouraged to take notes and be given information leaflets to keep for later, for example, when explaining their decision to the child. Ideally their relationship with the multidisciplinary team (MDT) will enable parents to express concerns, seek specific information, and be open to thinking about normative pressure that may be influencing them.
Privacy without Shame
Parents’ primary aims for their children typically include happiness and self-worth. This often includes a wish that their child will love and be loved. Because relationships with the primary caregivers are a training ground for loving and caring relationships throughout life, many parents know that the child and her body should be respected and cherished by them, and by the child. This tacit knowledge of the importance of a positive relationship with one’s body, no matter how unwell or atypical it is, can sit confusingly alongside concerns about teasing or stigma. Parents whose child is “different” in any way may be concerned for the child, and may feel highly anxious. Clinical consultations can support parents in finding ways to show their child that she and her body is acceptable and lovable, as well as providing strategies for reducing parental anticipatory anxiety. These can involve working out with parents some practical things they can do with their child including cognitive-behavioural strategies.
It is useful to discuss the difference between privacy (teaching the child that she has the right to share aspects of her body with trusted persons) versus secrecy (teaching the child that her medical condition must be kept secret). Emphasizing secrecy can foster shame and anxiety in the person concerned [12]. It is important to ascertain whether the parents believe that the child’s difference must be kept secret. If parents have negative feelings about their child’s diagnosis and believe that information must be withheld from the child, direct psychological intervention can be helpful.
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| Talking about diverse bodies: | |
| “You must talk to your child about her diagnosis. She can still be discrete about her private parts and the fact that she can’t carry a baby. She can tell it all to the special person when she is in a trusting relationship.” | “Learning about how everyone’s body is different and about how bodies work are important aspects of growing up for all of us. The conversations you and your child have about this will help her know that she is loved and her body is loveable.” |
| This could be understood to emphasize secrecy (and, implicitly, shame) rather than learning, self-discovery, and pleasure. | This emphasizes supporting the child to get to know and appreciate her own body and accept human diversity. |
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