Launch of Facts4Teens Psychosocial Oncology Rounds, April 17, 2014

Transcription

1 Launch of Facts4Teens Psychosocial Oncology Rounds, April 17, 2014 Presenters: Catherine Dunlop, Ph.D., DVATI, Art Therapist Karen Janes, RN, MSN, Professional Practice Leader, Nursing BC Cancer Agency

2 Overview Background Team Rationale for the Website to the Website What s Next

3 Coping with Cancer Emotional Support Cancer and the Family Cancer in My Family: My Anything but Ordinary Journey Launched in Fall 2009 Children 6 12, includes resources for parents/caregivers, health professionals and school counselors Facts4Teens Launched in Spring 2014 Background Adolescents 13-19, includes resources for parents/caregivers

4 Development of Facts4Teens Started in June 2011 Donor-funded Design process included: focus group and research with a family, and consulting with young adults who had gone through the experience as a teen Name explained: acronym FACT Facts/Feelings About Cancer for Teens Background

5 Sara Prins Hankinson, Art Therapist, BCCA Patricia Nitkin, Clinical Counselor, BCCA Karen Janes, Professional Practice Leader, Nursing, BCCA Gina Mackenzie, Provincial Director, Clinical Operations, Psychosocial Oncology & Practice Leader, Counselling & Psychiatry Services, Operations, BCCA Catherine Dunlop, Art Therapist, BCCA Martina Collins, Communications Specialist, PHSA and Raised Eyebrow (designed wire frames) Team

6 To address an unmet need: Rationale By providing web-based, psycho-social support for adolescents who have a family member with cancer And including facts about cancer and also a place for sharing stories, art, and feelings

7 New cases for all cancers, by age group: (Canadian Cancer Society s Advisory Committee on Cancer Statistics, 2013) age range 51,900 new cases (2013 estimate) 27.7% of total new cases Parental cancer effects on teens: Changes in familial roles (care-giving, housework, income generation) (Kucukoglu & Celebioglu, 2012) Possible anxiety and depression Rationale

8 Rationale Shifting from a deficit to a strengths perspective (Buchbinder, M., Longhoffer, J. & McCue, K., 2009) Acknowledging that children of cancer patients deal with: disruption of family roles and routines, temporary loss of ill parent due to symptoms and side effects, and threat of permanent loss Families demonstrated creative resilience in their capacity to incorporate cancer care into new family traditions, habits and practices. (p.213) By focusing on such changes in family life instead of psychosocial dysfunction, researchers may help families to prevent difficulties rather than just respond to them. (p.214)

9 Normalization strategies involving children in medical care (mitigating fears about medical technology), sharing information and making time for children to ask questions about cancer treatment In the context of adolescent development Rationale concerned with achieving independence from parents (developmentally normal conflict with parents) focused on adopting lifestyle and social skills consistent with their peers intense emotions in the process of individuating from the family

10 Children cope best with cancer in the family when they can: assimilate facts and feelings receive emotional and educational support Rationale Adolescents use intellectual mastery as a coping mechanism; information gathering makes them feel more confident (Adams-Greenly et al, 1986) Teens may have little knowledge or understanding of cancer at the time of their parent s diagnosis (Finch & Gibson, 2009) Having someone to identify with aids in feeling supported; recommendation for including case vignettes in material written specifically for the age group (Finch & Gibson, 2009)

11 Rationale Adolescents are the primary users of the Internet, spending more time online than adults and young children A recent study (Giesbers et al, 2010) investigating the use of a Dutch website providing peer support for children (12+) with parental cancer found two main functions: Outlet for exchanging feelings and experiences Resource for gathering information and facts Factors that help young people with parental cancer cope (Maynard et al, 2014): Having and understanding information about parent s cancer diagnosis Sharing feelings about the parent s cancer diagnosis Maintaining a sense of normalcy, at home and outside the home

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14 Facts & Feelings my questions get the medical facts feelings Stories & Art 3 stories: a wrench in my plans; lessons learned through grief; talking helps 3 examples of art: Maria s art, Dimitri s art, Sophia s art Stuff that Helps friends family school healthy living resources For Parents / Caregivers supporting teens accessing resources handouts online resources

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16 Also on home page five [square brackets] [anger] why me? Links to Feelings page (under Facts & Feelings) [creativity] expressing yourself Links to Stories & Art page [friends] at first they didn t know what to say Links to Friends page (under Stuff that Helps) [take care] I feel better when I go for walks Links to Healthy Living page (under Stuff that Helps) [learning about cancer] my questions about cancer; get the cancer facts here Links to Facts & Feelings page

17 About this site: Life can be intense! As a teenager, you ve got friends, school, relationships, sports and lots more to keep up with. Cancer in your family is the last thing you need in your life right now. But, it happened. So we ve created this website to help you cope with the changes in your life the best you can. Here, you ll find lots of information about cancer and its treatments, as well as taking care of yourself. You ll also find artwork and stories from other teens that have gone through this as well.

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53 What s Next Include interactive space where teens can upload their own art & stories for possible posting on page (after review) Consider linking to Cancer Chat Canada site (online forum) Questions/suggestions? Catherine.Dunlop2@bccancer.bc.ca x672184

54 References Adams-Greenly, M. Beldoch, N. & Moynihan, R. (1986). Helping Adolescents Whose Parents Have Cancer. Seminars in Oncology Nursing, 2(2), pp Buchbinder, M. Longhoffer, J. & McCue, K. (2009). Family Routines and Rituals When a Parent Has Cancer. Families, Systems & Health, 27(3), pp Canadian Cancer Society s Advisory Committee on Cancer Statistics. (2013). Canadian Cancer Statistics Toronto, ON: Canadian Cancer Society. Finch, A. & Gibson, F. (2009). How do young people find out about their parent s cancer diagnosis: A phenomenological study. European Journal of Oncology Nursing, 13, pp Giesbers, J, Verdonck-de Leeuw, M., va Zuuren, F.J., & van der Linden. (2010). Coping with parental cancer: Web-based peer support in children. Psycho-Oncology, 19, pp Kucukoglu, S. & Celebioglu, A. (2012). Effects of Difficulties Experienced by Adolescents Who Have a Parent with Cancer on Their Psychological Condition. Coll. Antropol. 36 (3): Maynard, A., Patterson, P., McDonald, F.E. & Stevens, G. (2014). What is helpful to adolescents who have a parent diagnosed with cancer? Journal of Psychosocial Oncology, 31 (6), pp