14.1 Introduction

Many young people seen in paediatric and adolescent gynaecology (PAG) clinics will be distressed and will be accompanied by distressed parents, carers or partners. Good multi-professional care can understand these natural and normal emotional and psychological responses. Aspects of physical development are increasingly characterised as natural variations rather than pathologies. Some previously routine PAG procedures, such as sex-affirming genital surgery, are now identified as socially motivated. All PAG practitioners need to develop a deeper understanding of those that are seeking their help to achieve optimal personal development.

14.2 A Psychologist on the Team

A PAG service should ideally have clinical or other practitioner psychologists as part of the multidisciplinary team (MDT). Others will have an associated clinical psychology service that will take patient referrals and report back. However, all gynaecologists working in PAG services or being referred young patients will need to incorporate an understanding of the psychological impact of young people’s fears about their bodies in the presence or absence of any gynaecological condition. This chapter explains specialist integrated psychological care in PAG, but its other function is to develop the depth and breadth of the gynaecologist’s psychologically informed thinking about patient care. We give advice on communicating with young people and families and signpost to useful resources.

There are different types of practitioner psychologist working within health care; for example, counselling psychologists and neuropsychologists. They have different training and consequently their knowledge and skills vary. We will be focussing on clinical psychologists who complete a 6- to 9-year training involving doctoral research, are competent in a range of psychological therapies with different client or patient groups and have extensive assessment and formulation skills. Formulation uses psychological theory and evidence to understand thoughts, feelings and behaviours, how distress arises and is sustained, and to plan for change. It provides an individual, patient-specific picture of what is ‘going on’, why, and what might make a difference. Sharing and developing a formulation with a patient and a team can be a powerful psychological intervention; it opens doors to change, adaptation and acceptance, and helps the patient to adjust and recover with the wider medical team’s understanding. Formulation shifts the patient from the passive position of having received a diagnosis and awaiting treatment or problem amelioration. This shared understanding approach can be used to meaningfully intervene with patients, their families and teams and can be applied throughout PAG and other physical health settings.

14.3 The Integrated Service Model of Psychological Care

Specialist psychology in physical health focusses the team on the mind – body interplay underpinning the patient’s overall well-being. The psychologist’s focus will be on helping the PAG team to understand the young person and their needs, including family and wider context issues. However, team function is not just a matter of linking up different experts to work together. Teams need to invest in the development of shared goals, agreed processes and ways to manage the intellectual- and emotional-relational processes involved in delivering meaningful psychological care [2,3].

The integrated psychology service model places multi-professional psychological care throughout the patient journey. The psychologist’s focus will be on promoting patients’ own understandings of their bodies and the team’s understanding of each patient. By understanding the interplay between psychological and physical health, you can work together to prevent long-term problems and to promote good adaptation and a recovery-response to illness, injury or developmental variations. See Figure 14.1.

Figure 14.1 The integrated service model of psychological care.

14.4 Whole-Service Psychological Care

The PAG psychologist can steer the psychological impact of the service for all patients, using screening tools, patient information and resources, and patient-reported experience or outcome measures (PROMs and PREMs). They can provide individual or group clinical supervision for nurses, service-wide teaching and facilitate challenging case discussions. They will bring psychological thinking to everyone’s practice, advising on the impact of language or processes and liaising with peer support organisations to foster collaboration and promote self-management. Incorporating psychological aspects within research adds great value. Also, the impact of a specialist who can focus the service on promoting staff well-being easily translates to tangible patient benefit.

14.5 Staff Well-being

We know that when we fail to prioritise staff well-being we compromise effective care. Burnt-out staff risk providing depersonalised care [Reference Maslach and Leiter4] that is associated with lower-quality outcomes and increased risk of harm to patients from errors [Reference West, Huschka, Novotny, Sloan, Kolars and Hanermann5]. Organisational cultures that primarily focus on efficiency can engender a sense of threat in staff that can limit compassion by lowering clinicians’ sensitivity to patient suffering and their motivation to address the suffering that they do become aware of [Reference Gilbert6]. Low compassion is associated with higher utilisation of resources and health care costs both because lower-quality care tends to be more expensive in the longer term and because clinicians that do not establish an understanding of patients’ lived experience may be more reliant on avoidable testing and onwards referrals. Conversely, there is increasing evidence that teams with a culture of compassion are more effective. If patients feel cared for, their health outcomes are better [Reference Trzeciak, Roberts and Mazzarelli7]. Psychologists can play a major role in supporting staff to foster a culture of compassion and to become adept at practices and conversations that enact it.

14.6 Targeted Psychological Care

Within an MDT, a clinical psychologist can plan points along a care pathway where standard episodes of psychological care can be offered. These could be for every patient on a specific treatment path. For example, upon diagnosis of primary ovarian insufficiency (POI), patients could be given the opportunity to meet with the psychologist or a psychologically trained and supervised specialist nurse. This would have the specific aim of helping the young woman adapt, prepare for and get used to the lifelong consequences of the diagnosis and the possible personal responses, including a form of grief that can accompany an awareness of lost opportunities compared to previous expectations. Simultaneously, the patient’s parents/carers might welcome advice on how best to support the young person, manage their own loss, and be signposted to support and self-management organisations. The PAG team psychologist could develop the offer of support, including co-designing information materials if none exist, providing clinical supervision for nurses, designing and evaluating pathways such as vaginal dilatation, developing and utilising specialist nurses’ skills and coordinating the outcomes evaluation. Facilitating and evidencing routine patient involvement in decision-making is another aspect of targeted psychology provision. Involvement in decision-making places a person as an active contributor to their care. Being sure that the treatment is wanted by the patient, based on their understanding of the range of possible outcomes, including knowing how to help reach the best point using self-care is a great goal. Such patient and health professional concordance is more likely when patients and their parents are given flexibility and choice in shared decision-making [9,10].

In a well-developed PAG service, the psychologist would provide training and clinical supervision to the gynaecology specialist nurse who could then deliver psychologically informed care, only referring to the psychologist if they assess the need for focussed specialist psychological therapy. This type of proactive multi-professional care provides a compassionate, high-quality, whole-person service response to a life-altering diagnosis.

14.7 Focussed Psychological Care

Some patients have specific psychological vulnerabilities that mean that the PAG diagnosis, treatment or even assessment and tests may trigger a more profound distress. A response to managing a long-term condition or a new diagnosis that shocks, might interrupt a patient’s usual functioning. Some patients with no medical condition may present with a dissatisfaction with the normal development of their vulva. Others may experience a complicated grief reaction towards a diagnosis involving infertility, a shame reaction to learning about having internal testes, XY karyotype or in relation to managing vulval dermatitis. Some patients will be disappointed if you conclude that their concern, such as distress about the size or shape of labia, does not require physical treatment. In these situations a period of focussed psychological therapy can achieve greater psychological flexibility, enabling them to move to a stage where the targeted and service-wide psychological care is adequate or they can be discharged from the service.

In each of these situations, halting PAG care while sending the patient to generalist Child and Adolescent Mental Health Services (CAMHS) or Improving Access to Psychological Therapies (IAPT) services would be a disservice. Specialist psychological assessment and intervention that can work closely with nursing and gynaecology colleagues can provide knowledgeable, timely care that is acceptable to the patient, as part of her established care pathway. A clinical psychologist with specialist PAG knowledge who is part of the PAG team can advise you on how best to support the patient in line with the psychological work undertaken and can support you and the rest of the team to meet individual patient needs in the interest of optimal PAG outcomes. A clinical psychologist has skills in a range of therapies and interventions to draw on with patients, depending upon specific need and individual assessment. They can also swiftly assess risk of harm including suicidality or can help you sign-post to rapid response services if needed. They can also liaise with mental health service providers if a patient has ongoing mental health needs that do not directly pertain to their PAG condition. Occasionally, this will involve working with, or referring to, psychiatry colleagues while providing guidance on managing mental health comorbidities alongside gynaecological care.