Art Unfolds Words: Expressing Hope Through Creative Art Among Adolescents and Young Adults Who Have Advanced Cancer

Abstract

Hope's role in the care of adolescents and young adults (AYAs) who have advanced cancer (AC) is not well understood. This study aimed to conceptualize the essence of hope among AYAs who have AC based on their lived experiences and illustrate hope through verbal and artistic depictions of the AYA's lived experiences. Fifteen AYAs, aged 12 to 21 years, diagnosed with AC completed two semistructured interviews to share their lived experiences of hope perspectives in the form of a descriptive narrative and a creative-art outcome. Participants who chose to draw pictures narrated the conceptual meanings based on elements of each picture. A board-certified art therapist performed a post hoc analysis of the drawings and participants’ verbatim descriptions of their meanings. Five of the 15 AYA participants created drawings depicting their lived experiences of hope. The artistic process of mapping their cancer journey revealed distinct views of hope through nature landscapes and metaphors. Participants provided titles for their drawings such as “Over the Rainbow,” “Growth in the Valley,” and “The Light at the End of the Tunnel.” The pictures embodied the AYAs’ thoughts, perceptions, and lived experiences related to hope and its role during their cancer journey. Drawing is one simple art form that can facilitate an AYA's expression of well-being (including hope) beyond what may be verbally articulated. Creative art should be further researched as a screening tool to assess how AYAs with AC cope with an uncertain future and psychological and/or existential distress symptoms.

Keywords

hope art therapy adolescents and young adults (AYA)cancer

Get full access to this article

View all access options for this article.

References

Alligood

M. R.

(2017). Nursing theorists and their work-e-book. Elsevier Health Sciences.

Altay

Kilicarslan-Toruner

Sari

(2017). The effect of drawing and writing technique on the anxiety level of children undergoing cancer treatment. European Journal of Oncology Nursing, 28, 1–6. https://doi.org/10.1016/j.ejon.2017.02.007

Amankwaa

(2016). Creating protocols for trustworthiness in qualitative research. Journal of Cultural Diversity, 23(3), 121–127.

Appleton

(2001). Avenues of hope: Art therapy and the resolution of trauma. Art Therapy, 18(1), 6–13. https://doi.org/10.1080/07421656.2001.10129454

Baer

Kaufman

J. C.

(2008). Gender differences in creativity. The Journal of Creative Behavior, 42(2), 75–105. https://doi.org/10.1002/j.2162-6057.2008.tb01289.x

Bennett

C. R.

(2021a). A phenomenological inquiry into the essence of hope among adolescents who have advanced cancer [Unpublished Dissertation]. University of Colorado.

Bennett

C. R.

(2021b, October 29). Beyond words: Expressing hope through creative art among adolescents who have advanced cancer. Association of Pediatric Hematology and Oncology Nurses Annual Conference & Exhibit, Salt Lake City, UT.

Bentov

(1988). Stalking the wild pendulum: On the mechanics of consciousness. Destiny Books.

Blufish (2019, November 29). How age and gender can impact social media usage. AZ Big Media. https://azbigmedia.com/business/business-and-social-media/how-age-and-gender-can-impact-social-media-usage/

10.

Cara

Hills

(2020). An educator’s guide to humanizing nursing education: Grounded in caring science. Springer Publishing Company.

11.

Coccia

P. F.

(2019). Overview of adolescent and young adult oncology. Journal of Oncology Practice, 15(5), 235–237. https://doi.org/10.1200/JOP.19.00075

12.

Collette

Güell

Fariñas

Pascual

(2021). Art therapy in a palliative care unit: Symptom relief and perceived helpfulness in patients and their relatives. Journal of Pain and Symptom Management, 61(1), 103–111. https://doi.org/10.1016/j.jpainsymman.2020.07.027

13.

Doyle

McCabe

Keogh

Brady

McCann

(2020). An overview of the qualitative descriptive design within nursing research. Journal of Research in Nursing, 25(5), 443–455. https://doi.org/10.1177/1744987119880234

14.

Ebrahimpour

Mirlashari

Hosseini

A. S. S.

Zarani

Thorne

(2021). Symbols of hope on pediatric oncology ward: Children’s perspective using photovoice. Journal of Pediatric Oncology Nursing, 38(6), 385–398. https://doi.org/10.1177/10434542211041934

15.

Elkis-Abuhoff

Gaydos

(2018). Art and expressive therapies within the medical model: Clinical applications. Routledge.

16.

Endo

(2017). Margaret Newman’s theory of health as expanding consciousness and a nursing intervention from a unitary perspective. Asia-Pacific Journal of Oncology Nursing, 4(1), 50. https://doi.org/10.4103/2347-5625.199076

17.

Fern

L. A.

Bleyer

(2018). Dynamics and challenges of clinical trials in adolescents and young adults with cancer. Cancer Journal, 24(6), 307–314. https://doi.org/10.1097/PPO.0000000000000347

18.

Fidler

M. M.

Frobisher

Hawkins

M. M.

Nathan

P. C.

(2019). Challenges and opportunities in the care of survivors of adolescent and young adult cancers. Pediatric Blood & Cancer, 66(6), Article e27668. https://doi.org/10.1002/pbc.27668

19.

Figueroa Gray

Ludman

E. J.

Beatty

Rosenberg

A. R.

Wernli

K. J.

(2018). Balancing hope and risk among adolescent and young adult cancer patients with late-stage cancer: A qualitative interview study. Journal of Adolescent and Young Adult Oncology, 7(6), 673–680. https://doi.org/10.1089/jayao.2018.0048

20.

Fitzgerald-Miller

. (2007). Hope: A construct central to nursing. Nursing Forum, 42(1), 12–19. https://doi.org/10.1111/j.1744-6198.2007.00061.x

21.

Gabriel

Bromberg

Vandenbovenkamp

Walka

Kornblith

A. B.

Luzzatto

(2001). Art therapy with adult bone marrow transplant patients in isolation: A pilot study. Psycho-Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer, 10(2), 114–123. https://doi.org/10.1002/pon.498

22.

Green

A. R.

Young

R. A.

(2015). The lived experience of visual creative expression for young adult cancer survivors. European Journal of Cancer Care, 24(5), 695–706. https://doi.org/10.1111/ecc.12269

23.

Guba

E. G.

Lincoln

Y. S.

(1989). Fourth generation evaluation. Sage Publications.

24.

Haase

J. E.

Robb

S. L.

Burns

D. S.

Stegenga

Cherven

Hendricks-Ferguson

Roll

Docherty

S. L.

Phillips

. (2020). Adolescent/young adult perspectives of a therapeutic music video intervention to improve resilience during hematopoietic stem cell transplant for cancer. Journal of Music Therapy, 57(1), 3–33. https://doi.org/10.1093/jmt/thz014

25.

Hanbali

Kotb

El Fakih

Alfraih

Ahmed

S. O.

Shaheen

Hashmi

Alhayli

Alahmari

Riash

M. A.

(2019). Improved outcome of a pediatric-inspired protocol for high-risk adolescent and young adult acute lymphoblastic leukemia patients using peg-asparaginase and escalating dose of methotrexate: Tolerability and outcome. Clinical Lymphoma Myeloma and Leukemia, 19(10), 670–677. https://doi.org/10.1016/j.clml.2019.05.004

26.

Hardin

A. P.

Hackell

J. M.

, & Committee on Practice and Ambulatory Medicine. (2017). Age limit of pediatrics. Pediatrics, 140(3), Article e20172151. https://doi.org/10.1542/peds.2017-2151

27.

Hendricks-Ferguson

. (2006). Relationships of age and gender to hope and spiritual well being among adolescents with cancer. Journal of Pediatric Oncology Nursing, 23(4), 189–199. https://doi.org/10.1177/1043454206289757

28.

Kapitan

(2011). An introduction to art therapy research. Routledge.

29.

Keegan

T. H.

Parsons

H. M.

(2018). Adolescent angst: Enrollment on clinical trials. Hematology, the American Society of Hematology Education Program Book, 2018(1), 154–160. https://doi.org/10.1182/asheducation-2018.1.154

30.

Kennedy

Lloyd-Williams

(2006). Maintaining hope: Communication in palliative care. Communication in Cancer Care, 168, 47–60. https://doi.org/10.1007/3-540-30758-3_5

31.

Košir

Roškar

Wild

Bowes

(2020). Mapping the needs and psychological outcomes of Slovenian adolescent and young adult cancer patients: An exploratory mixed-method study. European Journal of Cancer Care, 29(6), e13326. https://doi.org/10.1111/ecc.13326

32.

Lee

Palmieri

Watson

(2016). Global advances in human caring literacy. Springer Publishing Company.

33.

de Lima

K. Y. N.

Santos

V. E. P.

(2015). Play as a care strategy for children with cancer. Revista Gaúcha de Enfermagem, 36(2), 76–81. https://doi.org/10.1590/1983-1447.2015.02.51514

34.

Linder

L. A.

Bratton

Nguyen

Parker

Phinney

(2017). Comparison of good days and sick days of school-age children with cancer reflected through their drawings. Quality of Life Research, 26(10), 2729–2738. https://doi.org/10.1007/s11136-017-1621-6

35.

Linder

L. A.

Bratton

Nguyen

Parker

Wawrzynski

S. E.

(2018). Symptoms and self-management strategies identified by children with cancer using draw-and-tell interviews. Oncology Nursing Forum, 45(3), 290–300. https://doi.org/10.1188/18.Onf.290-300

36.

Maher

Hadfield

Hutchings

de Eyto

(2018). Ensuring rigor in qualitative data analysis: A design research approach to coding combining Nvivo with traditional material methods. International Journal of Qualitative Methods, 17(1), 1–13. https://doi.org/10.1177/1609406918786362

37.

National Cancer Institute. (2011). NCI dictionary of cancer terms. https://www.cancer.gov/publications/dictionaries/cancer-terms/

38.

National Cancer Institute. (2020). Adolescents and young adults (AYAs) with cancer. https://www.cancer.gov/types/aya

39.

National Cancer Institute. (2021). Adolescent & young adult health outcomes & patient experience study (AYA HOPE). https://healthcaredelivery.cancer.gov/aya/

40.

Newman

(1997). Evolution of the theory of health as expanding consciousness. Nursing Science Quarterly, 10(1), 22–25. https://doi.org/10.1177/089431849701000109

41.

Newman

. (1999). Health as expanding consciousness (2nd ed.). National League for Nursing Press.

42.

Niedzwiedz

C. L.

Knifton

Robb

K. A.

Katikireddi

S. V.

Smith

D. J.

(2019). Depression and anxiety among people living with and beyond cancer: A growing clinical and research priority. BMC Cancer, 19(1), 1–8. https://doi.org/10.1186/s12885-019-6181-4

43.

Orkin

Beaune

Moore

Weiser

Arje

Rapoport

Netten

Adams

Cohen

Amin

(2020). Toward an understanding of advance care planning in children with medical complexity. Pediatrics, 145(3), e20192241. https://doi.org/10.1542/peds.2019-2241

44.

Parsons

H. M.

Harlan

L. C.

Schmidt

Keegan

T. H.

Lynch

C. F.

Kent

E. E.

X.-C.

Schwartz

S. M.

Chu

R. L.

Keel

(2015). Who treats adolescents and young adults with cancer? A report from the AYA HOPE Study. Journal of Adolescent and Young Adult Oncology, 4(3), 141–150. https://doi.org/10.1089/jayao.2014.0041

45.

Perlis

Rosenbaum

(n.d.). Creative expression and quality of life. Surviving Cancer. https://med.stanford.edu/survivingcancer/coping-with-cancer/Creativity.html

46.

Phillips

C. R.

Haase

J. E.

Broome

M. E.

Carpenter

J. S.

Frankel

R. M.

(2017). Connecting with healthcare providers at diagnosis: Adolescent/young adult cancer survivors’ perspectives. International Journal of Qualitative Studies on Health and Well-Being, 12(1), 1325699. https://doi.org/10.1080/17482631.2017.1325699

47.

Piaget

. (1952). The origins of intelligence in children. (M. Cook, Trans.). W W Norton & Co. https://psycnet.apa.org/doi/10.1037/11494-000

48.

Pinkerton

Donovan

Herbert

(2018). Palliative care in adolescents and young adults with cancer—why do adolescents need special attention? The Cancer Journal, 24(6), 336–341. https://doi.org/10.1097/PPO.0000000000000341

49.

Raybin

. (2021). Pediatric quality-of-life outcomes with creative arts therapy in children with cancer (SCI938). Journal of Pain and Symptom Management, 61(3), 689–690. 10.1016/j.jpainsymman.2021.01.099

50.

Raybin

J. L.

Krajicek

. (2020). Creative arts therapy in the context of children with cancer: A concept analysis. Journal of Pediatric Oncology Nursing, 37(2), 82–90. 10.1177/1043454219878397

51.

Rosa

K. C.

(2016). Integrative review on the use of Newman Praxis relationship in chronic illness. Nursing Science Quarterly, 29(3), 211–218. https://doi.org/10.1177/0894318416647776

52.

Rosa

Horton-Deutsch

Watson

(2018). A handbook for caring science: Expanding the paradigm. Springer Publishing Company.

53.

Rosenberg

R. B.

(2014). “Somewhere Over the Rainbow” from Jewish perspective. https://www.mycentraljersey.com/story/life/faith/2014/12/10/somewhere-rainbow-jewish-perspective/20104523/

54.

Sansom-Daly

U. M.

Wakefield

C. E.

(2013). Distress and adjustment among adolescents and young adults with cancer: An empirical and conceptual review. Translational Pediatrics, 2(4), 167. https://doi.org/10.3978/j.issn.2224-4336.2013.10.06

55.

Smith

Fogarasi

Lustberg

M. B.

Nekhlyudov

(2021). Perspectives of adolescent and young adult cancer survivors: Review of community-based discussion boards. Journal of Cancer Survivorship, 16, 1079–1089. https://doi.org/10.1007/s11764-021-01098-4

56.

Smith

L. A.

Critoph

D. J.

Hatcher

H. M.

(2020). How can health care professionals communicate effectively with adolescent and young adults who have completed cancer treatment? A systematic review. Journal of Adolescent and Young Adult Oncology, 9(3), 328–340. https://doi.org/10.1089/jayao.2019.0133

57.

Snyder

Rand

K. L.

Sigmon

D. R.

(2002). Hope theory: A member of the positive psychology family. In Snyder

C. R.

Lopez

S. J.

(Eds.), Handbook of positive psychology (pp. 257–276). Oxford University Press.

58.

Srolovitz

Borgwardt

Burkart

Clements-Cortes

Czamanski-Cohen

Ortiz Guzman

Hicks

M. G.

Kaimal

Lederman

Potash

J. S.

(2022). Top ten tips palliative care clinicians should know about music therapy and art therapy. Journal of Palliative Medicine, 25(1), 135–144. https://doi.org/10.1089/jpm.2021.0481

59.

Temple

W. J.

(2018). Inspiring hope—a physician’s responsibility, translating the science into clinical practice. Journal of Surgical Oncology, 117(4), 545–550. https://doi.org/10.1002/jso.24887

60.

Terry

Hayfield

Clarke

Braun

(2017). Thematic analysis. In: The Sage handbook of qualitative research in psychology (pp. 17–37). Sage Publications.

61.

Wilson

E. O.

(2017). The origins of creativity. Liveright Publishing.

62.

Wolfson

J. A.

Richman

J. S.

Sun

C. L.

Landier

Leung

Smith

E. P.

O’Donnell

Bhatia

(2018). Causes of inferior outcome in adolescents and young adults with acute lymphoblastic leukemia: Across oncology services and regardless of clinical trial enrollment. Cancer Epidemiology, Biomarkers & Prevention, 27(10), 1133–1141. https://doi.org/10.1158/1055-9965.EPI-18-0430

63.

Woodgate

R. L.

West

C. H.

Tailor

(2014). Existential anxiety and growth: An exploration of computerized drawings and perspectives of children and adolescents with cancer. Cancer Nursing, 37(2), 146–159. https://doi.org/10.1097/NCC.0b013e31829ded29

64.

Younas

Parveen

(2017). Finding patterns of meaning: Margaret Newman’s theory of health as expanding consciousness. Creative Nursing, 23(4), 207–214. https://doi.org/10.1891/1078-4535.23.4.207

65.

Zebrack

Kwak

Sundstrom

(2017). First Descents, an adventure program for young adults with cancer: Who benefits? Supportive Care in Cancer, 25(12), 3665–3673. https://doi.org/10.1007/s00520-017-3792-7