Mental health of children with chronic illness

This open access review http://m.adc.bmj.com/content/100/4/308.full looks at trials of mental health intervention for children in physical illness.
Physical illness is,  as PMHA members will know,  a risk factor for mental health problems,  with around 20% having diagnosable conditions,  and many more suffering broader mental health problems.
The trouble is that there are almost no trials done in physical illness. In part this is understandable- liaison mental health services are small and under-resourced, the population is highly variable, and the symptoms are affected by complex factors which discourage the application of a single treatment modality.
However there are good reasons, precisely because of this complexity,  for thinking that treatment may need to be adapted to this group. Without more trials,  though,  we will never know.

Community paediatricians and mental health: left holding the baby?

PMHA research,  as well as countless conversations with colleagues, has revealed that a growing proportion of community paediatrics is now concerned with managing emotional and behavioral presentations. People worry that they are ill prepared for the complexity of cases coming through,  and by the withdrawal of CAMHS under financial pressure from areas where they used to be active. It is a testament to the dedication and humanity of paediatricians that they have not shirked the challenge,  but serious questions still need to be answered:

  1. What should be the scope of mental health work undertaken in community paediatrics?
  2. How can paediatricians who are practicing in this area ensure they can make a difference,  and be safe?
  3. How do we ensure that specialist CAMHS remain engaged where they are required?



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Guest blog! Lisa Murphy on communicating with adolescents

It was a great privilege to be invited to speak at the Paediatric Mental Health Association winter meeting in January on the topic of communication with adolescents. Not only was it great to get the opportunity to share some key messages from young people who use CAMHS services – but it was also very interesting to hear from paediatricians who work with young people on the difficulties they may face when trying to communicate with adolescents.
A number of those present raised the issue of developing a rapport with young people, getting them to understand their mental health and the importance of maintaing it. Interestingly, these were similar to the issues which young people have raised during previous discussions on communication – they often raise the issues of rapport, and of not having a full understanding of what is going on with them and why their treatment is important.

The key messages which I feel most important to share following our discussion are:
Ask the young person how they would like to be addressed: don’t assume name on record. Asking them what they would like to be called shows a respect for their identity that will help establish trust and rapport.
Often first name terms is best for communication: doctors may be concerned that this will distort their relationship, or will seem unprofessional – but young people are more likely to respond to someone they view as on their own level. However, if this doesn’t feel natural to you don’t force it, as a young person will know if you’re pretending to be something you’re not!
Focus on the young persons needs/desires: ask what they want to get out of a treatment or a session, or even what they want in general – this may give a insight into what is troubling them. It can also give a positive place to start at, and allows the physician to work backwards from the young person’s goal.
Don’t assume that because a young person has dealt with a traumatic event or long term physical health problem that they are going to be able to deal with a new, smaller problem. Sometimes a young person is walking a fine line with their mental health, and something seemingly insignificant can tip them in the wrong direction.
It can be difficult to talk about yourself to a complete stranger: sometimes it might be best to ask a young person about their friends, ‘Do any of your friends take drugs/self harm/tell you they feel down?’ etc etc. The young person may then talk about their ‘friend’ as a method of talking about themselves.
Don’t try too hard to emulate youth language etc, as it can actually be more alienating to a young person. Acting like yourself and being relaxed in your role makes a young person more likely to open up and feel comfortable.
Know when to use the family: while parents being present can make a young person more limited in talking, they can also be a useful supportive aid in a consultation, especially with a professional they don’t know. It is important the young person gets a chance to speak to their doctor alone, but do ask if they’d like a relative or friend to be there, even for first session.
Ask about physical manifestations: a young person may not know what ‘anxiety’ feels like, so ask specifically ‘has your heart ever felt like it was going very fast and you didn’t know why?’ Or ‘have you ever found it hard to breathe all of a sudden’.
Always give them the last word – every single consultation needs to end with the questions: ‘Do you understand everything?’ and ‘Do you have anything you would like to ask?’

Once again I can’t thank Max Davie and the rest of the PMHA team enough for inviting me to come and join your meeting, and to all those in attendance for being so welcoming and engaged in all aspects of the discussion. I hope that you all found it as useful as I did, and that you continue to use and share these messages from young people in your practice every day.

Building resilience in children and young people: talk by Alys Cole-King

Important to build resilience in yourselves before you can do so in others. This can decrease stigma in others if you do it openly.

Resilience is the ability to cope with adversity. Not toughness, stiff upper lip. It’s good mental well-being and resourcefulness.
Analogy of a tree in a hurricane is useful, bends not breaks.

Resilience is not a dichotomy, have it or not. Small degrees of improvement, slowly build.

Personal resilience built by respect, care

Suicidal thoughts quite common, but no-one talks about it. Taking about it will not make someone want to do it, but particular methods may be copied.

Identification of suicide risk currently very poor.

Self harm connected to suicide, although not invariably. Often an expression of distress which is temporarily relieved.

Adolescents are vulnerable to taking ‘small things’ as massive issues.

Resilience associated with optimism, self-esteem, gratitude, emotional awareness, flexibility, problem solving ability, self regulation.

One thing better is worth doing. External motivators e.g. pledges, social pressures, can help.
Gadget free time.
Mindfulness application in families needs to include self compassion. Your inner voice needs to be kind as much as possible.

Suicide prevention requires: awareness, compassion, skills, governance.
Professionals need to lose their fear of suicidal people. Need consistent assessment framework applied across professions.For pediatricians, awareness, triage, co- create, effectively refer,  common language are key.
Human factor errors important.  E.g. good assessment leads to poor documentation.
Suicidal thoughts can be classified into passive, active, dangerous and dangerous and imminent.
Talking through scenario can be beneficial.

Connecting with People is a not-for-profit organisation formed to develop and deliver training packages for a range of sectors, including healthcare, social care, statutory bodies and communities.Our modular training includes bite-size suicide awareness and prevention courses and we have also developed resources and training for young people, professionals and the wider community

http://www.connectingwithpeople.org/healthcare-front

 

Child trafficking and exploitation: Laura Franklin talk

Portsmouth currently biggest port for trafficking into UK. Needs coordinated national response.

Human trafficking has several elements
Movement, control, purpose.

Last year 1746 cases referred to national agency.
Sexual exploitation most prevalent form
22% of total are children, 40% sexually exploited

60% of children go missing after care. Only one centre for trafficked children exists. Placement depends on individual needs.

Estimate 10000 victims in the UK

Some examples: Vietnamese children in cannabis plantations
Arrested and treated as criminals not victims

Trafficking may be external (cross border) or internal

Sexual exploitation a common purpose

Not an immigration issue, an organised crime issue.

Parents cannot consent to trafficking or exploitation

Different to people smuggling

Multiple forms of exploitation. Forced labor, sexual, domestic service
Multiple means of control including use of drugs, deception, debt bondage, removal of documents

Very hard to detect.

Modern slavery helpline open to all: 08000121700

Video
Modern Slavery is closer than you think:
http://youtu.be/Jv1H_fAoOG4

Indicators: any sign of abuse
Rarely leaving house
Lots of chores
A&e attendance with workplace injuries
Unusually long hours
No identity documents
Truancy
STI, prevented from being seen alone
Poor accommodation
Prepared story of origin

Multi agency response required. Need for reception centres, mental health input.

Substance using adolescents: Dickon Bevington talk

Hard to work with people who don’t want to work with you. Stressful and worrying

Recommended Michael Ungar and John Weisz

Quality of service more important than number of services. Vulnerable young people can feel overwhelmed by numbers of contacts

Alternative model of multi modal worker supported by others. This support needs strong structure

Team structure helped by aggregation of marginal gains.

Networking complexity
Family system, social ecology, local service ecology, political context

Negative feedback about professionals is a way of help seeking, but corrosive to local joint working.
Respect for local practice and expertise

Mentalising is a framework for bringing perspectives together. It’s a process of wondering, reflecting on what current needs are.

Csibra and Gergely: epistemic trust
There needs to be formation of a bond by understanding the particular situation of the person in front of you.  Then teaching, persuasion can occur.

Mentalising is born in attachment.
Therapeutically, you need to ‘get’ the person before you can make progress.
The job of a therapist is to show ‘I’m changing my mind about you not I’m trying to change you’

When contacting someone, important to mark the task. Mentalising had to start with us.
Never in a set balance, constant movement around tensions.

Consider levels of dis agreement, explanation, intervention, responsibility

If this summary tantalises you, Dickon’s slides are in our Member’s area

 

Michelle Koh: psychosocial impact of life limiting illness in adolescence

Michelle presented three cases of palliative care in adolescence.

Makes point that direct anxiety about death, suffering, direct molecular effects, and family dynamic issues all contribute to difficulties.

E.g. in DMD cognitive development shows unusual cognitive and social skills

Family refusal to talk about feelings exacerbates difficulties.

Useful for clinician to put death out there as a concept, and see the response.

Families very concerned about physical reality of death. Professionals need to engage with this.

You can control symptoms and pain but not suffering.

Some families desperate for death to happen at home, for others need to be in a hospital. Key is respect for views.

Long term illness can rob the child of a peer group.

Story of a bright, willful boy who got fed up with dialysis. Team resources this, boy signed own care plan. Rapid deterioration but manages to make it to 18th birthday and buy a round of drinks!

Paradoxically uplifting story demonstrates primacy of respect for patient self definition.

Children’s journeys through grief, with Jacqui Stedmon

Attachment serves add a biological basis for all forms of grief.

4% of children lose parent before 18

Interventions need to be carefully targeted, but evidence base is poor.

The assumption that bereavement is bad has hampered progress; many children are very resilient. 2/3 do well after loss of a parent.

Bereavement a potent trigger to attachment system. (See slides)

The stages of grief narrative remains dominant, but isn’t the whole truth. More useful is an oscillation between loss orientated and restoration orientated activities.

Continuing bonds model (Silverman) rejects the idea that the end point of grief is to break the bonds with the dead person. Accommodates children’s grief in an uncritical and helpful way.

Meaning making a important part of the cognitive work of grief. A punctuation (saying goodbye) can be helpful.

Lack of evidence but experience suggests that children have a distinct individual path through grief

Trauma can interfere with grief process as person revisits traumatic memories. Triggers can be quite trivial.

Details matter in making sense.

Viewing the body can be helpful if the child chooses. Choices need to be given in a neutral way.

Peer groups can be prepared to deal with a bereaved child.

Two broad types of complicated grief in children
Traumatic and delayed or inhibited

Seems to be quite a bit of somatisation after inhibited grief, all aberrant behaviors can be linked to grief.

Assessment and understanding should include consideration of family relationships.

Disenfranchised grief, not accepted by others or self, can come out in physical symptoms.

Slides will be posted shortly. 

Virtual hospice with Bettina Harms and Becky Hepworth

Isle of Wight team.
No physical hospice available on the island. Often isolated from the mainland. Ferry required, which is expensive, and not always available.
People want to be with families, not remote.
Aim was to provide the care of a hospice without the building.

Brings existing services together with additional resources

Without the service respite access was poor.
Lack of counselling support after death
Lack of clear choice of place of death

Feeling of all services serving own population important driver for brining them together. Passion of local people invested in their own populations.  Pilot by existing hospice not successful as too far, so local services joined forces.

Commitment to home care. Training from mainstream hospice. Additional resources for children’s community nursing including respite. Support from adult services, third sector.

Physical room found in adult hospice, as a fall back, and actually used for after death care, requiring considerable negotiation and training, but now improving confidence.

Family voices important, guiding principle of service.

Bereavement with Su Laurent and Tracy Dowling

Tracy talked about the process of preparing for death, the questions (what will he look like? Will he need an ambulance?) that she asked, and the planning and listening from the team. Vital meeting in her kitchen.
Trivial things matter in this situation. Planning for details of different contingencies, including an ambulance directive for which hospital he was to be taken to. Importance of ongoing relationships and things being done by familiar people.
Impact, both positive and negative, on younger brother. Planning and discussion with siblings.
Importance of fitting language to the audience. A lot of people prefer direct language e.g. dead rather than lost or in heaven.
Advanced care planning is key, and is not death planning.
Death takes its time, often far longer than any of us expect. Weekends are especially tough during these last days. Doing things for ‘piece of mind’-we need to ask whose piece of mind?
Importance of medicine leaving the room, dropping off the trappings of medical care.
After death.
Bereavement hurts, physically and the exhaustion is worse than the exhaustion of over work experienced during dying. Often the complete withdrawal of care is devastating.
Numbers and anniversaries are important and become a way of counting and marking bereavement.
People say things to add positivity. E.g. back to work, have another baby, it’s a blessing. Language of moving on can be unhelpful. People also avoid the bereaved. Talking about the child as a person is valuable.
Bereavement team’s role: mainly to get parents together. Hearing the stories of others can give you examples of what not to do, as well as what to do.
Differences in how people are treated depending on how child died. Unexpected death in some ways better, but often complex feelings of guilt. Every bereavement is different and heading each other’s stories is valuable.