1. An Exploratory Study of Therapeutic Services Offered to Children with a Terminal Illness and Their Families Katie Spaeth Hanover College

2. Introduction n Child Life professionals –work within healthcare setting –focus on emotion/developmental needs of patient and family –reduce stress associated with healthcare –promote positive coping for patient and family –employ play and communication to reduce factors leading to psychological maladjustment

3. Introduction (con’t.) Factors affecting patient: n Family relationships –87% of families with terminally ill child have failed to cope sufficiently –50% of families having lost child to cancer had one member necessitate psychiatric care (Binger, 1984) –Research suggests initial assessment can identify families at risk for psychological problems (Christ & Flomenhaft, 1984; Koocher, 1984) poverty; limited intellectual ability; preexisting psychological problems

4. Introduction (con’t.) n Age/developmental level –Understanding and ability to reason regarding illness varies with cognitive development (Bibace & Walsh, 1981; Koocher, 1984)

5. Introduction (con’t.) n Knowledge patient poses of prognosis/death –Patients told “benign lies” sensed alarm in parents and professionals (Vernick & Karon, 1965) –Open discussion with patient negatively correlated with levels of depression (Kellerman, Rigler, & Siegel, 1977) –Information regarding illness improved psychological adjustment and lowered levels of anxiety (Koocher & O’Malley, 1981; Koocher, 1984)

6. Research Questions n What services are offered to the pediatric patient and their family by Child Life professionals in hospitals? n What is the relationship between these services and the services recommended by existing research? n What limitations are experienced by Child Life departments today?

7. Method Participants n 40 professionals contacted; 10 participants from 7 separate institutions; all female n time in position 1-25 years (m=8.49) n time in field 4-31 years (m=15.04) n 10 with Bachelor’s Degree; 5 with Master’s Degree; 1 with Ph.D; 2 CCLS

8. Method (con’t.) Procedure n Open-ended questionnaire developed based on literature review n Participants contacted using Child Life Directory and Internet search n Questionnaires sent to participants via email

9. Method (con’t.) Questionnaire n What types of therapeutic services does your department offer for the pediatric patient? n Does your department conduct a standard evaluation/assessment of families prior to the start of services? If yes, please describe. n How do you approach the discussion of prognosis with the following: patient, parents, siblings? n Which of the following are significant limitations in your department: funding, available space, trained professionals, youth of field, acceptance of department?

10. Method (con’t.) Data Analysis For each question: n Established range of categories n Tabulated frequencies in each category n Examined findings for: –similarities –interesting exceptions –relationship of findings to research

11. Results/Discussion Services provided for pediatric patient (What types of therapeutic services does your department offer for the pediatric patient?) n Play therapy: medical and free/expressive (9/10) –Many other services were provided, play was most prominent –provides education on illness, procedures/surgery –lessens anxiety –increases psychological adjustment

12. Results/Discussion (con’t.) Family Assessment (Does your department conduct a standard evaluation/assessment of families prior to the start of services?) n Majority of departments do not conduct family assessment (3/10 respondents do; 7/10 do not) –developmental assessment rather than family –suggests lag in acquiring new information

13. Results/Discussion (con’t.) Discussion of prognosis (How do you approach the discussion of prognosis with the following: patient, sibling, parent?) n Seen as medical responsibility (6/10) –physician discussing prognosis with patient and family n Parents prepped by Child Life (7/10) –professionals work with parents to educate them about their child’s illness, questions that may be asked, etc.

14. Results/Discussion (con’t) Departmental limitations (Which of the following are significant limitations in your department: funding, space, trained professionals, youth of field, acceptance?) n Funding (m=1.88); identified by 8/10 n Availability of appropriately trained professionals (m=2.29); identified by 7/10 n Acceptance of department (m=2.57); identified by 7/10 n Available Space (m=2.6); identified by 5/10

15. Conclusions n Progress has been made n Professionalization of field needs to continue n Child Life professionals more involved n Future research