Katie Spaeth Hanover College

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

2. Introduction • 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: • 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.) • Age/developmental level • Understanding and ability to reason regarding illness varies with cognitive development (Bibace & Walsh, 1981; Koocher, 1984)

5. Introduction (con’t.) • 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 • What services are offered to the pediatric patient and their family by Child Life professionals in hospitals? • What is the relationship between these services and the services recommended by existing research? • What limitations are experienced by Child Life departments today?

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

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

9. Method (con’t.) Questionnaire • What types of therapeutic services does your department offer for the pediatric patient? • Does your department conduct a standard evaluation/assessment of families prior to the start of services? If yes, please describe. • How do you approach the discussion of prognosis with the following: patient, parents, siblings? • 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: • Established range of categories • Tabulated frequencies in each category • 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?) • 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?) • 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?) • Seen as medical responsibility (6/10) • physician discussing prognosis with patient and family • 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?) • Funding (m=1.88); identified by 8/10 • Availability of appropriately trained professionals (m=2.29); identified by 7/10 • Acceptance of department (m=2.57); identified by 7/10 • Available Space (m=2.6); identified by 5/10

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