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Mental health

Mental health. Should be seen as a continuum, where it may have many different possible values Therefore the impact of social, cultural, physical and education can affect someone's mental health

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Mental health

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  1. Mental health • Should be seen as a continuum, where it may have many different possible values • Therefore the impact of social, cultural, physical and education can affect someone's mental health • People who are emotionally and mentally healthy have the tools for coping with difficult situations and maintaining a positive outlook. They remain focused, flexible, and creative in bad times as well as good.

  2. Why ?

  3. CF is a chronic disease • It’s a persistent, long-lasting medical and progressive condition, the present experience recalls the past one and involves the futur as well • Physical impact (disease, intrusions, devices …) • Psychological modifications and especially a narcissistic injury (body image, self-esteem …) • To cope : mecanisms of defence: • Unconscious and normal processes But mental distress can still appear (depression, anxiety, social withdrawal, OCD…)

  4. So… when the mental health is challenged • How are we going to help? • What to do, in our plan of actions, to improve your well-being ?

  5. How & Who ?

  6. Who to help ? • Winnicott said in 1947 « There is no such thing as a baby » • To improve well-being of our patients we need to : • Take care of the primary support group : • The parents • The siblings • The grand-parents • The spouses • Take care of the CF team : we are also a family • The patient is coming to the CF Centre to feel better not to talk about himself

  7. The psychologist • We need to give some sens to the reality you are going through and to help you think because too often what is at stake is death : • No magic tricks • No 911 We need time, and a good timing • The psychological distress must be helped by people who are trained for

  8. Prevention : it’s not a therapy but it’s therapeutic • The acute moments : where we see you • The newborn screening : • During and after the sweat-test • Outpatient clinic following the diagnosis (trauma, manage with the daily burden) • Hospitalization : • Systematic consultation for the patient • Support during specifics medical exams • Consultation for the parents • Quiet moments : where we don’t really see you

  9. Intervention • Supports Groups : • For patients • For the parents • For the siblings • For the team (the suffering of patients has an impact on ours) • Research : awareness • Therapeutic Education Program : « aims to help the patient and his relatives to understand the disease and the treatment, cooperate with caregivers, live more healthily and maintain or improve the quality of life. Education should make the patient able to acquire and maintain is own resources »

  10. In the reality • Mental health balances when facing life changes and traumas • Adjustment can take time & there are differences between each subject • We have to hear the subject/person not the patient • Is there any request from the subject ? If yes what does he ask for ? • Does everything falls into the « psycho-therapeutical » path ? • Does a chronic disease involves a chronic psychological support ?

  11. A long path of realisation

  12. The parents: Trauma of the diagnosis • The parents: they are the first concerned with the CF • New born screening (NBS): Trauma  grieving begins • The 5 stages of grief are: 1. Denial ; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance - In fact many people fluctuate between these different stages for many years • CF as a diagnosis can provoke a sense of powerlessness and psychological distress1 • The way the parents resolve this trauma will most certainly be a part of their possibilities to cope with the diagnosis and accept it: they will realise that they have a newborn with CF1,2 This is the first of all steps in the self-realisation of having CF

  13. Early childhood • Children aged 0–5 years: • “It is what it is”: CF does not affect socialising or education, the parents are responsible for explaining the CF • Passive position • No real burden or sense of being different • Not much concern • Parents: • Responsible for everything: physiotherapy, treatments, consultations/hospital visits, school • The burden, the trauma, the grief are theirs • It is their CF

  14. Childhood: The beginning of self-realisation • 6–11 years: • The child starts to realise that they do things that others do not • Peers start to ask questions • They will ask the parents • Feeling singular even different • Their response will depend on the way the parents have processed their trauma and where they are in their realisation

  15. Childhood: The beginning of self-realisation • Parents: • With good abilities to cope will help their child to understand their CF and the treatments, the self-realisation starts • With post-traumatic symptoms they can’t allow their child to comprehend their CF: The CF stays the parental responsibility… the child is safe and healthy: the self-realisation is repressed • Children start to ask question about their disease: Therapeutic patient education begins (related to the natural cognitive development) • Helping the patient and their relatives to understand the disease and the treatment, cooperating with caregivers, and living more healthily and maintaining or improving the quality of life • Education should make the patient able to acquire and maintain their own resources 

  16. The dilemmas of being an adolescent • Specific moment of physical, psychological and cognitive maturation • Autonomy vs reliance: for both • Parents feel deprived from the control on their child and their disease • Daily challenge: period of getting to know themselves better and becoming more of an individual • Trying to take control of their life • Making their own mind up about the life they want to lead

  17. Adolescence with CF • Access to the doubt of thought: who am I ? why me? (The parents: why us?) • Question about identity: Is CF what I have? What am I? • They talk if they want to: It’s their decision (peers, partners…), it is their CF ! • Complexification of the relations: • Family: independence vs reliance • Peer: feeling different/being different (physio, IV..) • School: non-attendance increases

  18. Early adolescence with CF: The second diagnosis • MDT: • The disease is “re-announced” to patient: they gain consciousness of being affected by a disease • Addressing the patient with and without parents • Education • Body itself : • Puberty is delayed, symptoms and treatment burden slowly increases • Sexualisation, sexuality • Testing the limit = no adherence = active process to fight the condition they can’t accept and active process to make CF theirs

  19. The middle adolescence • The body: the centre of the concern – double betrayal • Keeps changing • CF keeps progressing • The reality of being different is more and more obvious • Medical intrusions • Self-realisation is not a psychological option anymore • Denial, avoidance: start to be a major problem (adherence issues)

  20. Late adolescence/beginning of the adulthood • Focus on transition from pediatric to adult service • The patient has now realised that he has CF (doesn’t mean it is accepted) and starts to realise one has to take care of oneself • The parents realise it as well, which can also complicate transition • Parents & patients: Another grief, another renouncement

  21. Adulthood with CF • Having CF involves other people: • What life? with whom? allowed to be engaged in a couple… and what if I die..? • Guilt of the burden they put on the companion/spouse • Having children… and what if I get worse, can’t take care…die? • Acceptance is a daily challenge because life brings new challenges everyday: • Couple • Parenting • Social and work • Lung transplant • End-of-life

  22. Psychosocial challenges impact mental and emotional wellbeing in patients with CF 1. Quittner AL, et al. Curr Opin Pulm Med. 2016;22(2):187–91; 2. Conway S, et al. J Cyst Fibros. 2014;13 (Suppl 1):S3–22; 3. Ernst MM, et al. Child Adolesc Psychiatr Clin N Am. 2010;19(2):263–83. • Adherence to multiple daily treatments • Depression and anxiety • Resentment of peers • Reduced health-related quality of life (HRQoL), fatigue • Co-morbidities • Impact of CF on fertility and reproduction • Planning for the future, life goals • Leaving home, changes in education/employment • Physical limitations • Stigma

  23. Psychosocial challenges impact mental and emotional wellbeing in patients with CF 1. Quittner AL, et al. Curr Opin Pulm Med. 2016;22(2):187–91; 2. Conway S, et al. J Cyst Fibros. 2014;13 (Suppl 1):S3–22; 3. Ernst MM, et al. Child Adolesc Psychiatr Clin N Am. 2010;19(2):263–83. • Limited independence • Self-management/self-care • Lifestyle issues, e.g. alcohol, drugs • Maintaining healthy nutrition • Transition • Disclosure • ‘Feeling different’ to peers • Social isolation • Inability to socialise with other people with CF • Starting romantic relationships, intimacy • Deterioration and end-of-life care

  24. International guidelines on depression and anxiety in CF • Guidelines developed by Cystic Fibrosis Foundation (CFF) and European Cystic Fibrosis Society (ECFS) for screening and treating depression and anxiety • Providing recommendations for prevention, screening, clinical assessment, and psychological and/or pharmacological interventions

  25. Psychological symptoms in CF impact healthcare utilisation • Retrospective chart review of matched adolescents with CF (N=40), with and without a depressive disorder diagnosis • Strong association between depression with greater healthcare utilisation Snell C, et al. Pediatr Pulmonol. 2014;49(12):1177–81. Addressing mental health needs may help to improve health outcomes and reduce the need for medical services

  26. Patients Patients Caregivers Caregivers Prevalence of anxiety Prevalence of depression High rates of depression and anxiety are observed in patients with CF and their caregivers The International Depression Epidemiological Study (TIDES study) • Screening of >6,000 patients with CF, aged ≥12 years, and >4,000 parent caregivers from nine countries in Europe and USA Clinically elevated scores (%) Elevations were two to three times those reported in community samples Depression assessed using either the Centre for Epidemiological Studies-Depression Scale (CES-D) or the Hospital Anxiety and Depression Scale-Depression (HADS-D); Anxiety assessed using the Hospital Anxiety and Depression Scale-Anxiety (HADS-A). Quittner AL, et al. Thorax. 2014;69(12):1090–97.

  27. ICMH guidelines recommend providing preventative, supportive interventions to promote effective coping skills Quittner AL, et al. Thorax. 2016;71(1):26‒34. The CFF/ECFS International Committee on Mental Health (ICMH) in CF recommends that all individuals with CF and their caregivers are offered “ongoing education and preventative, supportive interventions, such as training in stress management and the development of coping skills, aligned with appropriate developmental stage and disease events”

  28. Encouraging habits that promote good physical and mental health, including exercise, good nutrition and sleep hygiene Determining ways to balance the demands of CF with education, work and pleasurable activities, to make life more satisfying and meaningful Using behavioural approaches to reduce the risk of stress, e.g. in those undergoing medical procedures Recommended preventative care strategies for depression and anxiety in CF Providing support in a sensitive and empathic manner Paying attention to individual and family functioning • The CFF/ECFS ICMH in CF recommends:

  29. The best psychological evolution • Renunciation: • Of being like others, doing things like others, to be as free as others, to be loved, and love like others • Acceptance: • Live in limits of the possible, integrate a new life, taking responsibility in their treatments, arising a new normality, to be loved, and love like others • All life is a constant and perpetual transition, but it is more challenging when you have an evolving, long-lasting disease • Living with CF, realising it, accepting it: is often experienced as traumatic and provoke PT symptoms • Transition from childhood to adulthood is a long journey • Self-realisation of having CF need support and it all starts with supporting the parents

  30. Burden : how to help you all? • To attempt to choose a setting conductive to communication with and understanding the patient • Allowing adequate time for questions from the patient and the family • Explore the patient’s current understanding of CF and if they are using available support • Inquire about emotional reaction: how are the patient and their family feeling? • Respect that the time of the psyche is not the same as the medical one: • The patient and family need time to process the new diagnosis, to regulate the affects and internalise the evolution of the disease, and the reorganisation of their life • They used to think they understood or even hoped to control CF and they are constantly reminded that they don’t

  31. Conclusion • Our task is to be a witness for the patient to “remember” him who he is, to help him to give a sense to what he is going through and to be a trusty reference to help him in his way to be himself • The better we know you all the better we can support you

  32. « … so really, good luck for everything and take care of yourself because nobody can do it for yourself even with the best will in the world ! » 

  33. Thank you for your attention

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