Skip to main content
Erschienen in: Supportive Care in Cancer 11/2016

28.06.2016 | Original Article

“Perhaps I will die young.” Fears and worries regarding disease and death among Danish adolescents and young adults with cancer. A mixed method study

verfasst von: Bibi Hølge-Hazelton, Helle U. Timm, Christian Graugaard, Kirsten A. Boisen, Cecilie Dyg Sperling

Erschienen in: Supportive Care in Cancer | Ausgabe 11/2016

Einloggen, um Zugang zu erhalten

Abstract

Purpose

A cross-sectional national study was initiated in order to evaluate healthcare services and survivorship from the perspective of Danish adolescents and young adults (AYAs) with cancer. The purpose of the paper was to examine (Q1) to what extend Danish AYAs experienced fears and worries about dying; (Q2) with whom, if anyone, they had shared those worries; and finally, (Q3) how fears and worries influenced their daily life. The emphasis will be on Q3.

Methods

A 151-item questionnaire (including two closed- and one open-ended questions about fears of death and dying) was distributed among all 15–29-year-old Danes registered with a cancer diagnosis from 2009 to 2013. A total study population of 822 persons participated. Data was analyzed using a mixed design of descriptive statistics and qualitative content analysis.

Results

Q1: Almost 80 % of AYAs with cancer expressed some worries about death; hereof, more than half of them expressed quite a bit or very much. The analysis showed significant gender differences, whereas age and duration of disease did not have any significant impact on such thoughts. Q2: One third had not talked to anybody about his or her worries. Q3: The analysis resulted in three overall categories: fear of disease and death having little or no influence (n = 100), fear influencing in various ways (n = 215), and fear of disease and death having a substantial influence (n = 75).

Conclusions

The majority of AYAs had experienced fears and worries about dying, but one third of them had not talked to anybody about those thoughts. It is an important clinical point that young age does not preclude fears and worries about dying in AYAs with cancer.
Literatur
4.
Zurück zum Zitat Meleis AI, Sawyer LM, Im EO, Hilfinger Messias DK, Schumacher K (2000) Experiencing transitions: an emerging middle-range theory. ANS Adv Nurs Sci 23(1):12–28CrossRefPubMed Meleis AI, Sawyer LM, Im EO, Hilfinger Messias DK, Schumacher K (2000) Experiencing transitions: an emerging middle-range theory. ANS Adv Nurs Sci 23(1):12–28CrossRefPubMed
5.
Zurück zum Zitat Hølge-Hazelton B (2011) Inquiries of discomfort: cancer experiences in young adulthood. Qual Stud 2(2):118–130 Hølge-Hazelton B (2011) Inquiries of discomfort: cancer experiences in young adulthood. Qual Stud 2(2):118–130
7.
Zurück zum Zitat Keegan T, Lichtensztajn D, Kato I, Kent E, Wu X-C, West M, Hamilton A, Zebrack B, Bellizzi K, Smith A (2012) Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. Res Pract 6(3):239–250. doi:10.1007/s11764-012-0219-9 Keegan T, Lichtensztajn D, Kato I, Kent E, Wu X-C, West M, Hamilton A, Zebrack B, Bellizzi K, Smith A (2012) Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. Res Pract 6(3):239–250. doi:10.​1007/​s11764-012-0219-9
8.
Zurück zum Zitat Statens Serum Institut. Cancerregisteret. Tal og analyse. (2015). Statens Serum Institut. Cancerregisteret. Tal og analyse. (2015).
9.
Zurück zum Zitat Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975–2000. (2006) NHI Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975–2000. (2006) NHI
11.
Zurück zum Zitat Siegel R, DeSantis C, Virgo K, Stein K, Mariotto A, Smith T, Cooper D, Gansler T, Lerro C, Fedewa S, Lin C, Leach C, Cannady RS, Cho H, Scoppa S, Hachey M, Kirch R, Jemal A, Ward E (2012) Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin 62(4):220–241. doi:10.3322/caac.21149 CrossRefPubMed Siegel R, DeSantis C, Virgo K, Stein K, Mariotto A, Smith T, Cooper D, Gansler T, Lerro C, Fedewa S, Lin C, Leach C, Cannady RS, Cho H, Scoppa S, Hachey M, Kirch R, Jemal A, Ward E (2012) Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin 62(4):220–241. doi:10.​3322/​caac.​21149 CrossRefPubMed
12.
Zurück zum Zitat Bergenholtz H, Jarlbaek L, Hølge-Hazelton B (2015) Generalist palliative care in hospital—cultural and organisational interactions. Results of a mixed-methods study. Palliat Med. doi:10.1177/0269216315619861 PubMed Bergenholtz H, Jarlbaek L, Hølge-Hazelton B (2015) Generalist palliative care in hospital—cultural and organisational interactions. Results of a mixed-methods study. Palliat Med. doi:10.​1177/​0269216315619861​ PubMed
13.
Zurück zum Zitat Boisen KA, Boisen A, Thomsen SL, Matthiesen SM, Hjerming M, Hertz PG (2015) Hacking the hospital environment: young adults designing youth-friendly hospital rooms together with young people with cancer experiences. Int J Adolesc Med Health. doi:10.1515/ijamh-2015-0072 Boisen KA, Boisen A, Thomsen SL, Matthiesen SM, Hjerming M, Hertz PG (2015) Hacking the hospital environment: young adults designing youth-friendly hospital rooms together with young people with cancer experiences. Int J Adolesc Med Health. doi:10.​1515/​ijamh-2015-0072
16.
Zurück zum Zitat Docherty SLKM, Maslow GR, Santacroce SJ (2015) The adolescent and young adult with cancer: a developmental life course perspective. Semin Oncol Nurs 31(3):186–196CrossRefPubMed Docherty SLKM, Maslow GR, Santacroce SJ (2015) The adolescent and young adult with cancer: a developmental life course perspective. Semin Oncol Nurs 31(3):186–196CrossRefPubMed
17.
Zurück zum Zitat Creswell JW (2014) Research design, qualitative, quantitative, and mixed methods approaches. 4. ed. edn. SAGE Publications, Thousand Oaks, CA, Los Angeles Creswell JW (2014) Research design, qualitative, quantitative, and mixed methods approaches. 4. ed. edn. SAGE Publications, Thousand Oaks, CA, Los Angeles
20.
Zurück zum Zitat Vaismoradi M, Turunen H, Bondas T (2013) Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study, vol 15. doi:10.1111/nhs.12048 Vaismoradi M, Turunen H, Bondas T (2013) Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study, vol 15. doi:10.1111/nhs.12048
22.
Zurück zum Zitat Mulhall A, Kelly D, Pearce S (2004) A qualitative evaluation of an adolescent cancer unit. Eur J Cancer Care (Engl) 13(1):16–22CrossRef Mulhall A, Kelly D, Pearce S (2004) A qualitative evaluation of an adolescent cancer unit. Eur J Cancer Care (Engl) 13(1):16–22CrossRef
23.
Zurück zum Zitat Grinyer A (2009) Life after cancer in adolescence and young adulthood: the experience of survivorship. Routledge Grinyer A (2009) Life after cancer in adolescence and young adulthood: the experience of survivorship. Routledge
24.
Zurück zum Zitat Nass SJBL, Demark-Wahnefried W, Fasciano K, Ganz PA, Hayes-Lattin B, Hudson MM, Nevidjon B, Oeffinger KC, Rechis R, Richardson LC, Seibel NL, Smith AW (2015) Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop. Oncologist 20(2):186–195. doi:10.1634/theoncologist.2014-0265 CrossRefPubMedPubMedCentral Nass SJBL, Demark-Wahnefried W, Fasciano K, Ganz PA, Hayes-Lattin B, Hudson MM, Nevidjon B, Oeffinger KC, Rechis R, Richardson LC, Seibel NL, Smith AW (2015) Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop. Oncologist 20(2):186–195. doi:10.​1634/​theoncologist.​2014-0265 CrossRefPubMedPubMedCentral
25.
Zurück zum Zitat Woodgate RL (2006) The importance of being there: perspectives of social support by adolescents with cancer. J Pediatr Oncol Nurs: Off J Assoc Pediatr Oncol Nurs 23(3):122–134. doi:10.1177/1043454206287396 CrossRef Woodgate RL (2006) The importance of being there: perspectives of social support by adolescents with cancer. J Pediatr Oncol Nurs: Off J Assoc Pediatr Oncol Nurs 23(3):122–134. doi:10.​1177/​1043454206287396​ CrossRef
28.
Zurück zum Zitat Bury M (1982) Chronic illness as biographical disruption. Sociol Health Illn 4(2):167–182 Bury M (1982) Chronic illness as biographical disruption. Sociol Health Illn 4(2):167–182
29.
Zurück zum Zitat Corbin JM, Strauss A (1991) A nursing model for chronic illness management based upon the trajectory framework. Res Theory Nurs Pract 5(3):155–174 Corbin JM, Strauss A (1991) A nursing model for chronic illness management based upon the trajectory framework. Res Theory Nurs Pract 5(3):155–174
30.
Zurück zum Zitat Miedema B, Hamilton R, Easley J (2007) From “invincibility” to “normalcy”: coping strategies of young adults during the cancer journey. Palliat Support Care 5(1):41–49CrossRefPubMed Miedema B, Hamilton R, Easley J (2007) From “invincibility” to “normalcy”: coping strategies of young adults during the cancer journey. Palliat Support Care 5(1):41–49CrossRefPubMed
31.
32.
Zurück zum Zitat Adler NE, Page AE (2008) Cancer care for the whole patient: meeting psychosocial health needs. National Academies Press Adler NE, Page AE (2008) Cancer care for the whole patient: meeting psychosocial health needs. National Academies Press
33.
35.
Zurück zum Zitat Graugaard C (2015) Perspectives on disease and sexuality. Nord Psychiatr 14:19–21 Graugaard C (2015) Perspectives on disease and sexuality. Nord Psychiatr 14:19–21
37.
Zurück zum Zitat Kwak M, Zebrack BJ, Meeske KA, Embry L, Aguilar C, Block R, Hayes-Lattin B, Li Y, Butler M, Cole S (2013) Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study. J Clin Oncol Off J Am Soc Clin Oncol 31(17):2160. doi:10.1200/JCO.2012.45.9222 CrossRef Kwak M, Zebrack BJ, Meeske KA, Embry L, Aguilar C, Block R, Hayes-Lattin B, Li Y, Butler M, Cole S (2013) Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study. J Clin Oncol Off J Am Soc Clin Oncol 31(17):2160. doi:10.​1200/​JCO.​2012.​45.​9222 CrossRef
38.
Zurück zum Zitat Handberg C, Lomborg K, Nielsen CV, Oliffe JL, Midtgaard J (2015) Understanding male cancer patients’ barriers to participating in cancer rehabilitation. Eur J Cancer Care 24(6):801–811. doi:10.1111/ecc.12358 CrossRef Handberg C, Lomborg K, Nielsen CV, Oliffe JL, Midtgaard J (2015) Understanding male cancer patients’ barriers to participating in cancer rehabilitation. Eur J Cancer Care 24(6):801–811. doi:10.​1111/​ecc.​12358 CrossRef
41.
Zurück zum Zitat Harlan LC, Lynch C, Keegan T, Hamilton A, Wu XC, Kato I, West MM, Cress RD, Schwartz SM, Smith A, Deapen D, Stringer SM, Potosky AL (2011) Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE study. J Cancer Surviv-Res Pract 5(3):305–314. doi:10.1007/s11764-011-0173-y CrossRef Harlan LC, Lynch C, Keegan T, Hamilton A, Wu XC, Kato I, West MM, Cress RD, Schwartz SM, Smith A, Deapen D, Stringer SM, Potosky AL (2011) Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE study. J Cancer Surviv-Res Pract 5(3):305–314. doi:10.​1007/​s11764-011-0173-y CrossRef
42.
Zurück zum Zitat Zebrack B, Block R, Hayes-Lattin B, Embry L, Aguilar C, Meeske K, Li Y, Butler M, Cole S (2013) Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer 119(1):201–214. doi:10.1002/cncr.27713 CrossRefPubMed Zebrack B, Block R, Hayes-Lattin B, Embry L, Aguilar C, Meeske K, Li Y, Butler M, Cole S (2013) Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer 119(1):201–214. doi:10.​1002/​cncr.​27713 CrossRefPubMed
Metadaten
Titel
“Perhaps I will die young.” Fears and worries regarding disease and death among Danish adolescents and young adults with cancer. A mixed method study
verfasst von
Bibi Hølge-Hazelton
Helle U. Timm
Christian Graugaard
Kirsten A. Boisen
Cecilie Dyg Sperling
Publikationsdatum
28.06.2016
Verlag
Springer Berlin Heidelberg
Erschienen in
Supportive Care in Cancer / Ausgabe 11/2016
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-016-3322-z

Weitere Artikel der Ausgabe 11/2016

Supportive Care in Cancer 11/2016 Zur Ausgabe

Update Onkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.