Top

Gepubliceerd in:

01-04-2015 | Original Paper

Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer

Auteurs: Peter Lewis, Julie Mooney-Somers, Christopher F. C. Jordens, Ian Kerridge

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 4/2015

Abstract

Many young people with cancer have a parent or parents who care for them during their hospitalisation and treatment, and remain an important part of their lives after the ‘crisis’ has passed and young people have moved into survivorship. This qualitative study explored the impact of cancer diagnosis, treatment and survival during adolescence and young adulthood on the practice and experiences of parenting. We conducted focus groups with a total of 22 parents of young people diagnosed with various cancers between the ages of 11 and 19 years old. The results indicated that parents advocated for their offspring in different ways at different points of the cancer journey. Parents used their parental knowledge of their offspring to secure a medical diagnosis and treatment, developed medical knowledge to advocate for appropriate treatment within the medical system, and then used parental and medical knowledge to advocate for their offspring’s successful psychosocial survival. In this final point in the journey, parents entered social worlds from which they would normally be absent and some went to great lengths to ensure their offspring were not socially disadvantaged.

vorige artikel Factors that may Facilitate or Hinder a Family-Focus in the Treatment of Parents with a Mental Illness

volgende artikel Parental Acceptance, Parental Psychological Control and Psychological Symptoms Among Sexual Minority Adolescents

Abrams, A. N., Hazen, E. P., & Penson, R. T. (2007). Psychosocial issues in adolescents with cancer. Cancer Treatment Review, 33, 622–630.CrossRef

Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469–480.CrossRefPubMed

Australian Institute of Health and Welfare. (2011). Cancer in adolescents and young adults in Australia. Cancer series no. 62. Cat. no. CAN 59. Canberra: AIHW.

Bjork, M., Wiebe, T., & Hallstrom, I. (2005). Striving to survive: Families lived experiences when a child is diagnosed with cancer. Journal of Pediatric Oncology Nursing, 22, 265–275.CrossRefPubMed

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRef

Casillas, J., Kahn, K. L., Doose, M., Landier, W., Bhatia, S., Hernandez, J., et al. (2010). Transitioning childhood cancer survivors to adult-centered healthcare: Insights from parents, adolescent, and young adult survivors. Psycho-Oncology, 19, 982–990.CrossRefPubMed

Clarke, N., McCarthy, M., Downie, P., Ashley, D., & Anderson, V. (2009). Gender differences in the psychosocial experience of parents of children with cancer: A review of the literature. Psycho-Oncology, 18, 907–915.CrossRefPubMed

Corey, A., Haase, J., Azzouz, F., & Monahan, P. (2008). Social support and symptom distress in adolescents/young adults with cancer. Journal of Pediatric Oncology Nursing, 25, 275–284.CrossRefPubMed

Elcigil, A., & Conk, Z. (2010). Determining the burden of mothers of children who have cancer. DEUHYO ED, 3, 174–181.

Enskar, K., Carlsson, M., Golsater, M., Hamrin, E., & Keuger, A. (1997). Parental report of changes and challenges that result from parenting a child with cancer. Journal of Pediatric Oncology Nursing, 14, 156–163.CrossRefPubMed

Erikson, E. (1968). Identity, youth, and crisis. New York: W.W. Norton and Co.

Evan, E. E., Kaufman, M., Cook, A. B., & Zeltzer, L. K. (2006). Sexual health and self-esteem in adolescents and young adults with cancer. Cancer, 107, S1672–S1679.CrossRef

Flurry, M., Ullmann-Bremi, A., & Spichiger, E. (2011). Experiences of parents with caring for their child after a cancer diagnosis. Journal of Pediatric Oncology Nursing, 28, 143–153.CrossRef

Gibson, F., Edwards, J., Sepion, B., & Richardson, A. (2006). Cancer-related fatigue in children and young people: Survey of healthcare professionals’ knowledge and attitudes. European Journal of Oncology Nursing, 10, 311–316.CrossRefPubMed

Grinyer, A. (2002). Cancer in young adults: Through parents’ eyes. Buckingham: Open University Press.

Grinyer, A. (2003). Young adults with cancer: Parents’ interactions with health care professionals. European Journal of Cancer Care, 13, 88–95.CrossRef

Grinyer, A. (2006). Caring for a young adult with cancer: The impact on mothers’ health. Health and Social Care in the Community, 14, 311–318.CrossRefPubMed

Grinyer, A. (2007). Young people living with cancer. Maidenhead, England: Open University Press.

Grinyer, A. (2009). Contrasting parental perspectives with those of teenagers and young adults with cancer: Comparing the findings from two qualitative studies. European Journal of Oncology Nursing, 13, 200–206.CrossRefPubMed

Han, H.-R., Cho, E. J., Kim, D., & Kim, J. (2009). The report of coping strategies and psychosocial adjustment in Korean mothers of children with cancer. Psycho-Oncology, 18, 956–964.CrossRefPubMedCentralPubMed

Hodgkinson, R., & Lester, M. (2002). Stresses and coping strategies of mothers living with a child with cystic fibrosis: Implications for nursing professionals. Journal of Advanced Nursing, 39, 377–383.CrossRefPubMed

Holmbeck, G. (2002). A developmental perspective on adolescent health and illness: An introduction to the special issues. Journal of Pediatric Psychology, 27, 409–415.CrossRefPubMed

Horowitz, A. D., & Bromnick, R. D. (2007). “Contestable Adulthood”: Variability and disparity in markers for negotiating the transition to adulthood. Youth and Society, 39, 209–231.CrossRef

Illich, I. (1976). Limits to medicine. Medical nemesis: The expropriation of health. London: Penguin.

Jenks, C. (1996). The post modern child. In J. Brannen & T. O’Brien (Eds.), Children in families: Research and policy (pp. 13–25). London: Farmer Press.

Kelly, D., & Gibson, F. (2008). Cancer care for adolescents and young adults. Oxford: Blackwell.CrossRef

Kerridge, I., Lowe, M., & Stewart, C. (2013). Ethics and law for health professionals. Sydney: The Federation Press.

Kitzinger, J. (1995). Introducing focus groups. British Medical Journal, 311, 299–302.CrossRefPubMedCentralPubMed

Kratz, L., Uding, M., Trahms, C., Villareale, N., & Kieckheffer, E. (2009). Managing childhood chronic illness: Parents perspectives and implications for parent-provider relationships. Family, Systems, and Health, 27, 303–313.CrossRef

Lewis, P. (2013). Growing up with cancer: A qualitative study of the impact of cancer illness and treatment on the experience of growing up. Unpublished doctoral dissertation, University of Sydney, Sydney.

Lewis, P., Jordens, C. F. C., Mooney-Somers, J., Smith, K., & Kerridge, I. (2013). Growing up with cancer: Accommodating the effects of cancer into young people’s social lives. Journal of Pediatric Oncology Nursing, 30, 311–319.CrossRefPubMed

Long, S., & Marsland, A. (2011). Family adjustment to childhood cancer: A systematic review. Clinical Child and Family Psychology Review, 14, 57–88.CrossRefPubMed

Norberg, A., & Green, A. (2007). Stressors in the daily life of parents after a child’s successful cancer treatment. Journal of Psychosocial Oncology, 25, 113–122.CrossRefPubMed

Pope, C., & Mays, M. (1995). Qualitative research: Reaching the parts other methods cannot reach: An introduction to qualitative methods in health services research. British Medical Journal, 311, 42–45.CrossRefPubMedCentralPubMed

Quinn, S. (2005). The long-term psychosocial effects of cancer diagnosis and treatment on children and their families. Social Work in Health Care, 39, 129–149.CrossRef

Samson, A., Tomiak, E., Dimillo, J., Lavigne, R., Miles, S., Choquette, M., et al. (2009). The lived experience of hope among parents of a child with Duchenne muscular dystrophy: Perceiving the human being beyond the illness. Chronic Illness, 5, 103–114.CrossRefPubMed

Schwandt, T. A. (2000). Three epistemological stances for qualitative inquiry: Interpretivism, hermeneutics, and social constructionism. In N. K. Denzin & Y. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 189–211). Thousand Oaks: Sage.

Schweitzer, R., Griffiths, M., & Yates, P. (2011). Parental experience of childhood cancer using interpretive phenomenological analysis. Psychology and Health, 27, 704–720.PubMed

Shepherd, E. J. W., & Woodgate, R. L. (2011). A journey within a journey: The lived experience of parents who do not live near their child’s tertiary cancer centre. Journal of Pediatric Oncology Nursing, 28, 231–243.CrossRefPubMed

Tomes, N. (2007). Patient empowerment and the dilemmas of late-modern medicalisation. Lancet, 369, 698–700.CrossRefPubMed

Wakefield, C., McLoon, J., Butow, P., Lenthen, K., & Cohn, R. (2011). Parental adjustment to the completion of their child’s cancer treatment. Pediatric Blood Cancer, 56, 524–531.CrossRefPubMed

Whyte, F., & Smith, L. (1997). A literature review of adolescence and cancer. European Journal of Cancer, 6, 137–146.CrossRef

Williams, S., & Calnan, M. (1996). The ‘limits’ of medicalisation?: Modern medicine and the lay populace in late modernity. Sociology of Science and Medicine, 42, 1609–1620.CrossRef

Williams, L. K., McCarthy, M. C., Eyles, D. J., & Drew, S. (2013). Parenting a child with cancer: Perceptions of adolescents and parents of adolescents and younger children following completion of childhood cancer treatment. Journal of Family Studies, 19, 80–89.CrossRef

Wyn, J., & White, R. (1997). Rethinking youth. Sydney: Allen and Unwin.

Young, B., Dixon-Woods, M., Findlay, M., & Heney, D. (2002). Parenting in a crisis: Conceptualising mothers of children with cancer. Social Science and Medicine, 55, 1835–1847.CrossRefPubMed

Titel: Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer
Auteurs: Peter Lewis
Julie Mooney-Somers
Christopher F. C. Jordens
Ian Kerridge
Publicatiedatum: 01-04-2015
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 4/2015
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-013-9896-x

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 4/2015

Parents’ Perceptions About Their Child’s Illness in Pediatric Cancer: Links with Caregiving Burden and Quality of Life

Parents’ Perspectives Towards the Diagnosis of Autism: An Italian Case Study Research

Retention in a Parenting Intervention Among Parents Involved with the Child Welfare System

Negative Maternal and Paternal Parenting Styles as Predictors of Children’s Behavioral Problems: Moderating Effects of the Child’s Sex

Katherine Ellison: Buzz: A Year of Paying Attention

Family and Individual Factors Associated with Turkish Immigrant and German Children’s and Adolescents’ Mental Health