How to work with cancer parents and their children; experiences from the Turku model.

1. The Turku Model. Psychosocial support to cancer patients and their families. Parenthood and parenting. How to work with cancer parents and their children; experiences from the Turku model. Århus, January 26th, 2006 Florence Schmitt, 2006

2. Main guidelines (1) • Family approach vs. individual approach • Child centred • Integrative: a set of different theories is needed • Eclectic: Theories and Techniques are carefully chosen according to the specific needs of the patient and his family Florence Schmitt, 2006

3. Main guidelines (2) • Medical World • Adult patient and adult spouse • Child and siblings • Developmental aspect of individuals and of the family as a system Florence Schmitt, 2006

4. Family system • - individual level • previous knowledge • - level of trust • - trans-generational history Medical system -the oncologist as a person -the illness, onset and outcome -the context -culture in the organisation Broader context society, values norms, culture Florence Schmitt, 2006

5. Medical World • The features of the disease - onset: acute vs. chronic - course: progressive, constant, relapsing, episodic - level of uncertainty and handicap • Knowledge about psychopathology • Knowledge about medication • Knowledge about the culture of the medical system Florence Schmitt, 2006

6. grand father grand mother grand father grand mother parental couple Couple relationship father mother siblings Florence Schmitt, 2006

7. Adult/Parent • The ill adult patient is also a parent • Working with the desire to bee a good parent • Parenthood/parenting • Reflective functioning ( P. Fonagy) Florence Schmitt, 2006

8. Child/sibling • Age and stage of development • Own personal temperament • Genetic capital • Meaning that children give to what happens to them: reflective functioning in children • Only child vs. child and siblings Florence Schmitt, 2006

9. Developmental aspects • Developmental aspects of family members and of the family as a system • Multigenerational patterns • Belief systems • Culture • Communication in the system between family member and with outsiders Florence Schmitt, 2006

10. Key Concepts • The key concepts for the integration of all this aspects are parenthood and parenting - it is a need to make a distinction between parenthood and parenting - this distinction is relevant for classifying perceptions, structuring observations and planning interventions in clinical work Florence Schmitt, 2006

11. couple relationship Father Mother parenting parenthood relationship relationship Shadow of illness Child individual in-put interaction in-put Florence Schmitt, 2006

12. Determinants for parenthood (1) • Refers to the inner world of the parent/psychic change in the mind of the individual, who becomes a parent (cf. D.Stern) • Transition to parenthood • Representation of self as a parent • Representation of the child • Quality of attachment Florence Schmitt, 2006

13. Determinants for parenthood(2) • Previous knowledge: non-verbal, non-semantic, experiences of being hold/care • Individual features/personality • Impact of illness on parenthood • Parenthood has to be seen as a process rather than as a state (child makes us parent/ adoption/ “maternal instinct”) Florence Schmitt, 2006

14. Determinants for parenting • Refers to the external world: behaviour/ what can be seen • The “working parental couple” • Socio-economical factors • Communication • Question; does parenting reflect parenthood? Relationship between parenthood and parenting? Quality of reflective functioning and resilience Florence Schmitt, 2006

15. Context in which parenthood and parenting are realized • Culture • Values and norms in society • Social support and available resources • Resilience • Helping systems Florence Schmitt, 2006

16. Working with cancer ill parents and their children (1) • Attitude • Shift from disease centred approach to parenthood/parenting approach. The “patient” is a mother or a father. • Shift from the individual level to the family level • When you are on the family level chose the point of view of the child and ask, “if I would be the child of this person, what would I like to happen to him/her, which would be good for me?” Florence Schmitt, 2006

17. Working with cancer ill parents and their children (2) • Techniques • Join the child the patient has once been, a long time ago • Stretch your imagination in order to catch the child’s experiences • Familiarize yourself carefully with the files of the patient • Ask always and first what the patient wants to do for his/her child Florence Schmitt, 2006

18. The work in Turku • 1.5.02-30.04.04: 2063 new patients 678 patients were under 54 years. 134 patients were found to have children. • Started the 1st of May 2002 until April 30th 2004 • 134 patients were personally contacted. 14 patients refused. 85 patients participated in the research (70%). • 45 families were seen in counselling, 24 families in the standard counselling and 17 families in the need-specific counselling • 4 families were seen in need-specific counselling, but are not belonging to the research sample. Florence Schmitt, 2006

19. The Turku Model of Psychosocial Support for cancer patient • Joining the family and establish a strong therapeutic alliance • Providing time and space separately for children and parent to elaborate on cancer • Providing time and space for sub-systems (couple/siblings) to elaborate on cancer • Validation of children’s feeling and thought • Helping parents to see their children’s emotions and needs • Decreasing feelings of guild and facilitate communication • Emphasizing the uniqueness of each family experience, enhance hope • Accompany the family members on their journey through loss and grief Florence Schmitt, 2006

20. How does it work? • First session for the parental couple or the whole family • Second session for the whole family • Third session a) siblings together b) parents/single parent • Fourth session: individual session for the children • Fifth session: whole family • ½ year later follow-up session Florence Schmitt, 2006

21. Bibliography • Rolland, J.S. (1984) Toward a psychosocial typology of chronic and life-threatening illness. Family Systems Medicine, 2; 245-263 • Rolland, J.S. (1987a) Chronic Illness and the life cycle: a conceptual framework. Family Process, 26; 203-221 • Rolland, J.S.(1987b) Family illness paradigms: evolution and significance. Family Systems Medicine, 5 467-486 • Rolland, J.S.(1990) Anticipatory loss: a family systems developmental framework. Family Process, 29:229-244 • Rolland, J.S.(1994) In sickness and in health: the impact of illness on couple’s relationship. Journal of Marital and family Therapy, 20:327-349 • Rolland, J.S.(1999) Parental illness and disability: a family systems framework. Journal of Family Therapy, Vol. 21(3), pp.242-266. Florence Schmitt, 2006

22. THANK YOU FOR YOUR ATTENTION Florence Schmitt, 2006