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ED Transitions Module 5: Parents and Carers

    This module is designed to help eating disorders professionals:

    • Access the information and skills needed to work alongside emerging adults with eating disorders and their carers to ensure that there is clear support in place for both parties.

    • Recognise that there can be a high level of anxiety for all those who are involved with supporting an ‘emerging adult’ through treatment.

    • Understand the complexities around confidentiality and consent to ensure that there is effective collaborative care for the patient.

    This module is part of the Eating Disorders Transitions Learning Series.

    Module 1: Setting the Scene – Definitions and Context
    Module 2: Supporting Transitions Between Services
    Module 3: Digging Deeper – Preparing For and Talking About Transitions
    Module 4: University Transitions and Emerging into the Wider World

    In a hurry? Use the buttons below to navigate through the content of this module.

    Introduction
    Parental involvement in treatment
    Confidentiality
    What do carers think?
    Communication with carers

    Please note that to avoid lengthy descriptions we will talk about CAEDS (Child and Adolescent ED services) and AEDS (Adult ED services), although we are aware that some such transitions may involve generic CAMHS.

    Introduction

    Jenny Langley, lived experience carer and author, describes two basic tenets of eating disorder treatment:

    1. Carers are entitled to be treated with respect and have their role valued and their efforts acknowledged by the care team.
    2. Carers should always be listened to and should never be excluded from a care plan particularly when the care team are assessing risk.

    Beyond these basic tenets, the wishes of the patient of course need to be taken fully into account and confidentiality wishes of all parties should be noted carefully and reviewed regularly. Relationships between carers and young people can naturally change around the time of transitions; whilst some relationships may encounter new challenges, others may improve or simply change in dynamic over time.

    Parental Involvement in Treatment

    Parental involvement in treatment will vary according to the individual circumstances, wishes, values and culture of each family but many young people and their parents will want to work together in the best interests of recovery. 

    Clinicians, family and the patient can be a strong force for change and it’s important that issues around communication are addressed at the outset of treatment and adapted along the way (depending on the stage of recovery).

    It can be especially helpful to agree early on in treatment with the young person, how they wish to have their family members involved,or not, in their treatment. The involvement of parents or any other family member in treatment is likely to be far more effective when it has been agreed and directed by the young person.

    Under the NICE Guidelines; General Principles of Care in the treatment of Anorexia Nervosa, it is recommended that families are involved during the process of assessment and treatment (as appropriate).

    Furthermore, some treatment approaches necessitate parental involvement.  This is the case in Family Therapy for Anorexia Nervosa (FT-AN) and Family Therapy for Bulimia Nervosa (FT-BN). When working with children and young people with the relevant diagnosis, therapeutic approaches that involved the family are considered the first line treatment, unless considered “unacceptable, contraindicated or ineffective”.

    For some families, this will involve parents attending appointments with the young person.  For others this will mean accessing carers support groups and/or carers skills training only.

    Occasionally, parents may want the opportunity to speak with the young person’s clinician/therapist separately.  Therapists need to be transparent with the young person about this and parents are advised to let the young person know that they have requested this and, ideally, what they will be speaking about, where it is safe to do so.  In some instances, parents may speak to a different member of the team.  Some clinicians prefer to address this by suggesting that the young person is always present when members of their support network are conversing with them.

    It is also worth considering "one-way" forms of communication wherein carers can contact clinicians with information they feel is relevant (e.g. if the service user is engaged in high risk behaviours) without the expectation of reply. Email may be an appropriate channel for this type of communication.

    All of these specificities around communication with supporters and carers need to be carefully addressed and thought through.

    Parent and carer involvement and confidentiality: the law

    Capacity

    People aged 16 years-old and over are presumed in law to have capacity to make decisions about their treatment (under Section 8 of the Family Law Reform Act 1969) .  Parents cannot override consent or refusal to treatment in competent 16/17 year-olds.  Neither can they consent on behalf of their competent 16/17 year-old.  However, in most instances, it is commonly regarded as good practice for parents or carers to be included in health care planning as they are often best placed to support the young person with their treatment.

    Parental Rights

    Mothers have intrinsic legal authority or Parental Responsibility over their children up to the age of 18 years (s3(1) Children Act 1989). This is unless someone else is appointed as a Legal Guardian via a court.  Fathers who are married to the mother also automatically have Parental Responsibility. Alternatively, fathers who are named on the birth certificate will also have Parental Responsibility. This means that where important decisions have to be taken, mothers and married fathers are legally allowed to have a say.  The law in relation to second female or male parents is different.

    Confidentiality & Information Sharing

    The same duty of confidentiality applies to young people (and children) as it does to adults.  However, young people are often happy for information to be shared and many will assume information will be shared, having been used to this.  Furthermore, most parents want to be able to support their child’s treatment and welcome guidance from professionals.

    It is good practice to ask the young person if and what information they agree can be shared, and with who.  For example, some young people are happy for parents to know what the care plan is but they want to communicate this themselves and they do not want parents to know what is talked about in one-to-one sessions.  Others feel comfortable with parents knowing some content of one-to-one sessions, perhaps where it is considered conducive to their recovery or circumstances, and want this conversation to take place within an appointment.  Others are happy for parents and staff to talk directly, in which case it is advisable to agree with parents that they let the young person know what is being discussed and why.

    The young person’s wishes and consent in relation to confidentiality (and their carers’ wishes where applicable) should be recorded within their notes so that it can be easily seen by other professionals.  It can also be helpful to set an alert within the system notes that this decision is reviewed regularly as situations can change rapidly during treatment. It is important to note that the same universal limits to confidentiality apply to under 18’s as over 18.  That is, where the young person’s safety or the safety of another person may be at risk, it may be necessary to break confidentiality.

    [Animated roleplay video explaining confidentiality to a young person and to an adult - content TBC]

    What do carers think about confidentiality?

    Jenny Langley suggests that there are a number of ways carers can be involved in their loved one’s treatment even when consent is not given.
    These could include:

    1. Respecting consent whilst maintaining connections with parents and carers (e.g. implementing “one way” comms wherein parents can agree to send teams information they feel is relevant about their loved one whilst understanding they will not receive information back)
    2. Providing information on who in the team is in charge of the overall care plan.
    3. Informing carers about who is providing day to day care, including meal support.
    4. Explaining what different professionals do and how often they provide either 1:1 sessions, group sessions or other types of support and therapy.
    5. Outlining how often risk is assessed and what the parameters are.
    6. Outlining how often the review meetings are held.
    7. Invitating carers to Care Planning meetings.
    8. Providing practical support and information to help develop compassionate communication skills with their loved one.
    9. Proving information about the diagnosis, and prognosis.
    10. Having conversations with parents and carers about consent.
    11. Having conversations with service users about consent and the implications for their carers.
    12. Having conversations with parents and service users to clarify circumstances where high risk situations may necessitate changes to how confidentiality preferences are observed.

    Additionally, in cases where consent for information sharing is not given, it may be possible for parents to be assigned a clinician not involved in the care of the service user in question as a point of contact. This clinician can give generic advice and listen to concerns from the parent or carer, whilst the service user remains reassured that confidentiality is being respected.

    Withdrawing consent - Lived Experience Carer Quote

    Hover your mouse over this card to see what carers have said.

    "Inform carers if/when consent is withdrawn – otherwise they can be dangerously deceived that all is well because they believe services would have told them if there was deterioration/serious risk (as per an earlier agreement, for which consent has since been withdrawn)"

    Understanding the boundaries of consent - Lived Experience Carer Quote

    Hover your mouse over this card to see what carers have said.

    "The care team should ascertain what information carers already know, as any such information should not be treated as confidential. If you can provide a concise written summary of what you know already this can be extremely helpful. It is good practice for each care team to have a separate file for carers and your list could be a useful prompt for a file to be set up at the earliest stage. In addition, carers have the same rights to confidentiality as the patient and so information you provide should not be repeated to the patient unless you give permission"

    Planning for crises

    A key concern for carers is often knowing what to do in a crisis situation, which can seem especially daunting if they perceive communication with the care team is impacted by confidentiality. It is crucial that carers are always given clear advice on what to do in an emergency:

    • Advice on managing the behaviour in the home and wider community, particularly in a crisis situation, and how to seek crisis support both in and out of usual working hours.
    • Contact details of the care co-ordinator and assurance that when you make contact you will get a response.

     

    Planning for emergencies - Lived Experience Carer Quote

    Hover your mouse over this card to see what carers have said.

    "One of the things carers struggle with most is what to do in an emergency and very often the guidance is “if you are worried go to A&E”. Try to establish at an early stage if the service has an out of hours helpline, who your main point of contact is, and what to do if it is an emergency that would be better dealt with by a specialist mental health team who knows your loved one, rather than A&E who will not be equipped with your loved one’s medical history or care plan."

    Recognising why carers may feel unhappy or aggrieved

    Carers are often put under immense pressure as a result of the illness experienced by their loved one. The transition period brings additional complexities and concerns for parents who may feel that any hard-won progress in terms of accessing CAEDS treatment may be at risk. On top of this, changes in confidentiality may feel like another barrier being put up by the 'system', making helping their loved one even more difficult.

    Navigating barriers - Lived Experience Carer Quote

    Hover your mouse over this card to see what carers have said.

    "Carers are often at their ‘wits end’ by the time their loved one actually gets to see a mental health professional. They may have watched helplessly as their loved one has deteriorated and become more and more entrenched in their eating disorder behaviours. They are likely to have done much research and discovered that early intervention is crucial, but then had to face up to the stark reality that the NHS is so under resourced that crisis care is all that can be offered. All they want to do is help their loved one, but the system seems to them to be feeding the eating disorder, not treating it. This process can be lengthy and go on for many months."

    Worrying about risk - Lived Experience Carer Quote

    Hover your mouse over this card to see what carers have said.

    "Carers can also face problems with information sharing. They might notice that their loved one’s physical condition is deteriorating fast but their child might not realise how unwell she /he is and might not want professionals to be contacted. If they contact services their loved one might then accuse them of breaching her/ his trust and confidentiality. This is a judgement call and difficult to handle for all. Carers can base their judgement on their knowledge and intuition and explain their reasoning to the mental health team and later to their loved one. The safety of the patient, psychologically and physically is the most important issue and discussions and decisions must include all those involved in providing care, in a transparent fashion."

    ‘There were a lot of missed opportunities. A bit of support/training for parents (and KNOWING consent had been withdrawn) might have kept my daughter out of hospital.’Carer
    "They should listen to the parents. We wasted a lot of time getting nowhere. If something is not working, approach it from a different angle."Carer

    Key points to remember

    • Issues around confidentiality can pose significant dilemmas for clinicians.
    • It is important to consider why the family has contacted you to share information and take this seriously.
    • The issue of confidentiality needs to be weighed up with a risk assessment, particularly if the family member shares something worrying eg increasing suicidal risk for the patient.
    • Ensure your service has a leaflet on confidentiality

    Communication with carers

    When talking to parents and carers, remember that it is an extremely anxiety provoking time for all involved. They may not be in a place to be able to communicate in a measured way and might need a lot of support and reassurance.
    Parents and carers are often invited to psychoeducation and communication skills workshops. Some of the principles that are taught within these sessions also apply to our approach and communication style towards the young person and their families.

    Some key points to remember when communicating with patients and carers (7 Cs):

    Calm

    Ensure the setting is not stressful

    Counsel

    Listen and check that you have understood rather than jumping in to give advice

    Curious

    Explore the concerns/emotions that lie below the surface of the eating disorder symptoms (fear, social rejection, sense of inadequacy)

    Compassion

    Provide warmth and security

    Collaboration

    The importance of working with your loved one at their pace

    Clever

    Name and identify emotions that are below the surface

    Compensate

    Build a positive resource to counter the threat bias

    Within the treatment of eating disorders, motivational interviewing (MI) is a communication tool that is regularly used to ‘enable the person to take up their own argument for change’. MI is useful for Clincians to use with patients and carers.

    We encourage Clinicans to use the ‘OARS’ to enhance communication and improve listening:

    Image of oars skills

    Jenny Langley has produced some excellent training videos on the ‘OARS’. Whilst these are aimed at carers, they may also be interesting and informative for clinicians.

    For more explanation on Open Questions watch:

     

    For more information on Affirmations watch:

     

    For more information on Reflections watch:

    Another technique used to communicate with patients and carers is ‘PACE’. This is a tool derived from attachment based parenting:

    Playful

    Adopt a stance where you try to focus on your own emotional posture - being relaxed, loving and giving a sense of enjoying being in the other person's presence.

    Accepting

    This is about creating the opportunity and spcae for your loved one to share their emotions, wishes and feelings. It is about demonstrating that you are okay to hear, and be around whatever difficult experience they are going through, and that this is okay.

    Curious

    Demonstrate interest and ask questions to better understand, and to know more about what is going on for your loved one. Try to do this in a manner without judgement. This can help both of you better know what is happening.

    Empathetic

    This is about acknowledging the emotion that is present, and sharing your understanding of that feeling (even feeling it yourself) for your loved one. This demonstrates that they do not have to experience difficult feelings alone.

    Additional resources for carers

    It is very important that carers are offered information and skills to enable them to communicate effectively with their loved one. Note that the carer most involved in care may well be a sibling or friend. There may also be a language barrier for carers, so it is important to offer translation services or a translator if available.

    Here are some resources that may be useful for carers:

    Useful websites on emerging adulthood:

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