In the eye of the holder: Parents ’ experiences of coping with child ’ s eating disability

1. In the eye of the holder:Parents’ experiences of coping with child’s eating disability Rivka Tuval-Mashiach Bar Ilan university Israel QRMH3rd Conference, Nottingham 2010

2. Collaborators Yael E. Landau, (MA) Fortu Benharroch (MD), Varda Gross-Tsur (Ph.D) Neuropediatric Unit, Shaare Zedek Medical Center, Jerusalem, Israel

3. Parenting a child with disability • Having a child diagnosed with a long-term condition can be a major source of stress and anxiety for parents (Hopia et al., 2005, Gnehm, & Landolt, 2007). • Parents’ role may be disrupted by feelings of anxiety, fear, distress and guilt and they may feel a lack of control over the situation (Meshkani & Bavarian, 2005).

4. Attachment Theory • The young child needs to develop a relationship with at least one primary caregiver for social and emotional development to occur normally. • Within attachment theory, infant behavior associated with attachment is primarily the seeking of proximity to an attachment figure in stressful situations (Bowlby, 1969). • Originally, feeding wasn’t perceived to be related to processes and to quality of attachment.

5. The feeding relationship “The complex of interactions that takes place between parent and child as they engage in food selection, ingestion, and regulation” (Satter, 1986, p. 353). Both child and parent come to the feeding environment with predispositions and abilities that are further shaped over time as the history of interactions builds.

6. Prader-Willi Syndrome (PWS) • A genetic disorder • Mild to moderate intellectual disability. • Excessive appetite, frequently associated with overeating behavior. • This overeating behavior frequently leads to obesity, which can be severe and lead to serious health problems.

7. PWS and Food Issues • In early infancy, the feeding problems are characterized by ineffective suck and failure to thrive. • In the preschool years there is a dramatic change the children become obsessive eaters and pathologically obese. • Parents know that the overeating can be harmful, toxic and induce premature mortality and that they should control their child's eating behavior.

8. Research questions The conflict between the wish to nourish and the negative ramifications of eating in children with PWS is hypothesized to impact attachment processes and the dyadic interaction of the child and his/her parents. Objectives: 1. Exploring experiences of parenting a child with PW. The feelings, difficulties, and challenges associated with raising the child. 2. Understanding the impact of feeding and food issues on the child-parent relationship as perceived by the parents.

9. The study • 18 parents of 10 children with PW were interviewed. • 10 mothers and 8 fathers. • Child’s age between 1-7 years. • Methodology: Semi-structured in –depth interviews. • Analysis: categorical-content analysis (Lieblich et. Al, 1998).

10. Findings • The Perspective of Time: Themes of parental experiences emerged as relating to three different life stages: the first year, present day coping and concerns for the future.

11. Attachment in the first year • The first stage of diagnosis was experienced as a crisis by all, but descriptions of attachment differ- either a stronger or weaker attachment. • "the serious worry over her made my connection to her even closer, a certain need to protect her." • "I was overwhelmed with papers describing the illness, describing PWS children like monsters that will grow up to become enormous tanks of food”. • "In the beginning it was all mechanical. Like how a mother is supposed to behave. I didn't feel anything, with my eldest it was different, the connection of a mother, the love... In a way she looked lifeless, and I didn't know if I should connect to her or… if she would live tomorrow or not.

12. Finding alternatives • "The first connection you make with your child, when she is born, is when you feed her, nurse her. You are the source of all that the baby needs…. Julie could never nurse. You have to find an alternative connection – eating is not the center of life."

13. The here and now-How Parents View Their Child Today • Most parents expressed a genuine parental love, connection and adoration to their child. Many stated that they love all their children equally, and that they see their child as an individual, not in the shadow of the PWS syndrome. • A number of parents noted a different relation to their child, knowing that s/he has developmental difficulties.

14. "It is like leading a normal life and there is a cloud above of you all the time. Sometimes it is black, sometimes blue, and sometimes you don't see it at all, and you know that it is there all the time. I have learned to live by the day. She (daughter) is incredible, full of happiness, funny, curious, sweet…"

15. Confronting the future • Most parents were very worried about the future. • Food Issues • Social Adjustment • Future Level of Independence

16. Confronting the future-Food issues • Developing strategies and feeding limitations at home. • Food issues and their effect on the quality of the parent-child relationship.

17. Fears of the future “All of a sudden it dawns on you that food is not only a problem but a real threat. You feel like a policeman. It’s a catch 22. On the one hand you feed your child and he has to eat and grow and all the time you know that in the future eating will become a serious problem”.

18. Another look at the relation between mother-child relationships & feeding • A study on the experiences of mothers of daughters with chronic eating disorders.

19. Similarities and differences • Parents in both samples described guilt, fears, enhanced preoccupation and care. • All described a feeling that the illness, especially in relation to food issues impacts their relationship with their child. • A clear focus on the “Here and Now”- fears of the future. • Differences- more hope in PWS parents, more anger in mothers of anorexics, different experiences of guilt.

20. Summary and Discussion • PWS, and especially feeding issues, create a serious challenge to the parent-child relationship. • This relationship is intersubjective and constantly developing. • Parents described normal aspects of raising a child with PWS, but at the same time preoccupation and concern regarding food colored their description. • A conscious preference to focus on the here and now. • Fears of the predicted future.

21. Implications • At the first stage- Allowing parents the time to adjust to the new situation- delivering information gradually. • Identify parents who are finding it difficult to emotionally attach to their infant, and help them to adapt. • Instructions about food and feeding and a continuous dietary advice, even from toddler years, can positively affect the parent's sense of order and control over the PWS child's health.

22. Limitations • Wide age spectrum in the PWS study. • Only mothers in the ED study. • Different children ages in the two samples. • No reference to parent’s gender.

23. Thank you for listening!

24. Attachment and feeding “The major point I want to make is that sucking and rooting are indeed precursor attachment behaviors that may become tied into the attachment system if a baby is allowed much initiative in attaining the breast, but they do not necessarily become tied in…On the other hand, we must not conclude that the kind of interaction that takes place between an infant and his mother is irrelevant to the kind of attachment relationship that develops… For the first two or three months of life, feeding occupies a major proportion of the time that the infant is awake and in interaction with his mother. (Ainsworth, 1972, ).

26. תחושת ההישאבות לתוך ההתמודדות עם המחלה מייצרת לעיתים התנהגויות קפדניות ודקדקניות, ייחודיות להתמודדות עם הפרעת האכילה. האמהות מתארות לעיתים עיסוק מעט כפייתי במצבה של הבת, עיסוק העשוי לשקף באופן סמוי את הזדהותן הפנימית העמוקה עימה: • "כל החיים זה ריצה ובדיקה מה היא אכלה.. נגיד אני שמה אגוזים על השולחן, כן? אז אה.. אני סופרת אותם ואחרי זה אני רואה כמה נעלמו אז אני הולכת וחוקרת כל אחד כמה הוא אכל, לבדוק אם היא באמת אכלה או לא.. והצורך הזה לבדוק הוא לא עובר.."(איילה).