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La Braise – Brussels

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  1. On ne badine pas avec l'amour….Searching for a new sexualidentity and dreaming of falling in love after a braininjury

  2. La Braise – Brussels An illustration of long-term care of severe brain injured adults

  3. La Braise Day Care Center La Braise Transports Cognitive Rehabilitation Center Resources Center Respite Service Support Service

  4. La Braise • Population concerned • Adults (18-65 yearsold) • Non-progressive acquired brain injury (head trauma, stroke, ...) • Severe bain injury (medicalcriteria+ significant impact in daily life) • Long term care/management

  5. Most frequentsequelaes • Neuropsychological • Communicational • Emotional • Behavioural • Anosognosia • Physical • Sensorial • Fatigue • Slowness


  7. Day Care CENTER Opened in August 1995 • About thirty adults (aged 18-65 years) with acquired and non-progressive brain injury (TBI/stroke) • long term day care with no restriction of duration • personal, family and social support of brain injured persons by focusing on quality of life and community outreach.

  8. Day Care CENTER • Multidisciplinary team • Group activities and individual therapies (cognitive, creative, activities of daily life, communication, emotional, physical) • Research, implementation and use of means of compensation • Working with families

  9. Support SERVICE Cognitive Rehabilitation CENTER

  10. Support SERVICE Opened in September1998 • About fourty brain injured adults and teenagers (from 12 years old) • Individual support. Concrete support in family life of the person : Administrative and/or financial assistance, housing search, help in managing the activities of daily living, home adaptations to cognitive difficulties, development of human and material aid, social and professional reinsertion.

  11. Cognitive Rehabilitation CENTER Opened in January 2002 • About tenadults (16 to 65 yearsold) withbraininjury • Day rehabilitation program funded by INAMI for a period of maximum 3 years (beyond the initial 2 years of rehabilitation) • In the presence of sufficientpotential of evolutiontowards a social, familial and/or professionalreinsertion.

  12. Objectives • Quality of life (cf Qolibri) • Maximal participation (cf CIF model) • Autonomy (cf Mhavie, satisfaction degree) • Self-confidence, revaluation of the self-image (reintegration, volunteering) • Personal, familial, social, professional fulfillment • Mourning, (re)construction of the project.

  13. Means • A comprehensive approach • The brain injured person, his family system, his past history, his path since the accident (neuro systemic approach) • An environmental approach • Practical situations, the closest to their daily life, ideally in life environment of the person • A coherent multidisciplinary approach • Within the team (educators, neuropsychologists, speech therapist, occupational therapist, physiotherapist, social worker, responsible for integration) and the broader network (external contributors)

  14. Principles • Continued feedback • Classical, ecological, observation checklist, simulations, training/internship • System of contracts, assesments, targets • Metacognition • Having the person become an expert of his injury • Impact of the group of peers • Working with family • Respect the individual pace (mourning, resilience) • Consider the affective experiences (solitude, sexuality)

  15. Service Répit pour les proches de personnes cérébro-lésées en situation de grande dépendance La Braise

  16. SERVICE RESPITE Opened in 2009 • Occasionallyrelieve relatives of braininjuredperson in situation of highdependancy (requiring the continuouspresence of a third party) • Reassuringpresenceat home, individual excursions, integration in group activities.

  17. RESOURCES Opened in september 2005 CENTER • Tool for : • Acquired brain injured persons (traumatic brain injury, stroke…) , • Their relatives, • Professionals working with them, • Public

  18. Invisible disabilitySome means to cope with everyday

  19. Parenting and Brain InjuryBeing parent when the brain injury gets the family out of balance

  20. Awareness brochure about the suffering of children with a brain injured parent

  21. Socio-professional reinsertionReturn to work after a brain injury – a possible challenge

  22. On ne badine pas avec l'amour….Searching for a new sexualidentity and dreaming of falling in love after a braininjury

  23. Expectations of the brain-injuredperson? • Need for fondness, a lasting relation, complicity, projects, trust and mutual respect. • Mutual help and support • Dialogue • Confidence • Patience • Importance of loving and being loved • Know that someone is relying upon oneself • Importance of a loving look on oneself

  24. Sexuality, ethics and handicap • Sexuality : all behaviours related to the sexual instinct and its fulfilment. • Sexuality within the relation. • Asking for sex or for love? • Sexual assistant: prostitution or service? • Ethics (moral) : non-discrimination and respect of the other

  25. Legal frame • In the Belgian law, prostitution is not an infringement by ityself. It consists in proposing or accepting, in exchange for payment or a material advantage other than affective, physical contacts of any kind, which aim at satisfying sexual needs or pleasures.

  26. Behaviours forbidden by the law • Recruitment – running or renting a house of prostitution • Exploiting the the prostitution of others • Street walking • Advertising prostitution

  27. Factorsinfluencing the affective and sexual life of the brain-injuredperson and his/herpotentialpartner

  28. 1. The sequelae 2. Comparison with the life before the accident 3. Changes in the roles and expectations of the couple 4. Lack of communication in the couple 5. Difficulties establishing emotional relations 6. Images conveyed by society and education

  29. Physicalsequelae • Fatigue • Hemiplegia / hemiparesia,… • Limitations of movements • Changes in body sensations (insensitivity or hypersensitivity, pain) • Not wanting to show one’s body • No longer being able to satisfy one’s needs and the needs of the partner • Fear of deceiving the partner / oneself

  30. Cognitive sequelae • Memory problems • Slowing of the thought • Attention problems • Judgement problems • Loss of initiative • Language problems (understanding, expression)

  31.  Fear to be exploited (memory problems, financial)  Fear of not being respected  Fear of being unable to say « no »

  32. Emotional and behavioural sequelae • Difficulties accessing emotional experiences • Difficulties expressing emotional experiences • Behavioural changes : • disinhibition (hypersexuality) • inhibition (hyposexuality, apathy) • lack of emotional control

  33. All these changes result in • Lack of self-esteem • Shame, feeling of guilt, helplessness • Sadness, withdrawn attitude, depression • Expressing the anger caused by the handicap through agressivity towards the others • Anxiety • Disruption with oneself and with the other

  34. Modified self-image • De-sexualized body in hospital environment • Body broken up, transformed vulnerable • Difficulties recognizing oneself • Changes of the self-image and the image given to others • Looking for recognition in the eyes of the other • The personal values are challenged: no longer loving oneself, no longer being able to be loved by the other

  35. Comparison with the life before the accident • Comparison of performances, experiences, with those before the accident • Believe that the relation of the couple before the accident is anyway acquired • The history before the accident influences the current emotional and sexual life

  36. Changes in the roles and expectations of the couple • The partner has a role of caregiver, to the detriment of his role as spouse • The body cared for is no longer « eroticized »  loss of intimity of the couple  sometimes loss of sexual identity • Ambivalent feelings between partners (guilt, shame, recognition) • Difficulties to communicate to the other one’s feelings and expectations from him

  37. The partner becomes a caregiver • No longer being at an equal level • No longer walking at the same pace…

  38. Lack of communication in the couple • New expectations are not explicitely expressed • Fears • Unsaid • Incomprehension • Gap between the partners  lonely together, separations, divorces

  39. Suffering of spouses and partners (Kreutzer 94, Linn 94, Perlesz 2000) • Behavioural problems – agression, disinhibition – are major factors of distress(Linn 92) • Disruption of the life, depression, social withdrawal, inversion of the roles in the couple (Rosembaum et Najenson 1976) • 3 to 5 times more separations and divorces(Wood, 97) • Loss of the main emotional and relational support of the spouses: disturbance of the sexuality, the communication with the partner, the social role of the couple

  40. Difficulties entering into a relationship with the other and maintaining an emotional relation • Refuse a new relation • To avoid suffering  • To avoid an unpleasant encounter  • Because of the weight of the handicap   LONELINESS

  41. Images conveyed by society and education • Worship of the image and the look • Competitiveness • Performance  « The ideal image » is even more difficult to reach after the accident  Risk of misunderstandings and frustrations

  42. Some solutions

  43. Propose rewardingactivities, of public utility, to brain-injured people • Transport • Pay attention to the need of emotional relations of the brain-injured patients • Support to families and partners • Training of existing services Specific support services with an additional mission of « leasure »

  44. Conclusions

  45. Pay attention to the real request of the person • Do not normalize • Sex without love = ? • Love and food have the same vital importance for our health and our survival (Ko Tseu)

  46. Do not loose hope • Encounters are still possible… One must trust life, because one is still alive • It is important to be loved, such as I am now; that someone shares, exchanges, shows me by gestures and attentions that I exist and that I matter …

  47. There are alsonice stories… • Certain adults found a family and become parents after the accident…

  48. Thanksto all people from La Braise, who have accepted to sharetheirinnermostthoughts.