- Volume 13 Issue 12
DOI QR Code
Quality of Life of Multiethnic Adolescents Living with a Parent with Cancer
- Ainuddin, Husna A. (Institute of Postgraduate Studies, University of Malaya) ;
- Loh, Siew Yim (Department of Rehabilitation Medicine, University of Malaya) ;
- Low, Wah Yun (Faculty of Medicine, University of Malaya) ;
- Sapihis, Musaropah (Sg Buluh Hospital, Kuala Lumpur Hospital) ;
- Roslani, April Camilla (Faculty of Medicine, University of Malaya)
- Published : 2012.12.31
Background: Research evidence suggests a debilitating impact of the diagnosis of cancer on the quality of life of the afflicted individuals, their spouses and their families. However, relatively few studies have been carried out on the impact on the QOL of adolescents living with parents diagnosed with cancer. This paper presents a sub-analysis on the impact of parental cancer (colorectal, breast and lung) on adolescents. Materials and Methods: This is a cross-sectional study on adolescents aged 13-18 years old. Upon ethical clearance obtained from UMMC Medical Ethics Committee, patients with colorectal, breast or lung cancer and their adolescent children were recruited from the Clinical Oncology Unit of University of Malaya Medical Centre. Respondents who gave consent completed a demographic questionnaire and the Pediatric Quality of Life Inventory, via the post, email, home visit or meetings at the clinics. Results: 95 adolescents from 50 families responded, giving a response rate of 88 percent. The adolescent's mean age was 16 years (ranging between 13-18 years). Adolescents with parental cancer had the lowest mean score in emotional functioning (p<0.05). Male adolescents had significantly higher quality of life overall and in physical functioning compared to female adolescents. Adolescents with a father with cancer had better school functioning compared to adolescents whose mothers had cancer. Families with household income of RM 5000 and above have significantly better quality of life compared to families with lower household income. Conclusions: Adolescent sons and daughters of parents with a cancer diagnosis show lowered QOL, particularly with reference to emotional functioning and school performance. Addressing the needs of this young group has been slow and warrants special attention. Revisiting the risk and resilience factors of adolescents might also inform tailored programs to address the needs of this neglected adolescent population.
Adolescent;quality of life;parental cancer;mother;father;colorectal;breast and lung
- Varni JW, Seid M, Smith KT, et al (2002). The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the pediatric quality of life inventory generic core scales and rheumatology module. Arthritis and Rheumatism, 46, 714-25. https://doi.org/10.1002/art.10095
- Welch AS, Wadsmorth ME, Compas BE (1996). Adjustment of children and adolescents to parental cancer: parent's and children's perspectives. Cancer, 77, 1409-18. https://doi.org/10.1002/(SICI)1097-0142(19960401)77:7<1409::AID-CNCR28>3.0.CO;2-4
- Lim GC (2002). Overview of cancer in Malaysia. Japan J Clinical Oncology, 32, 37-42. https://doi.org/10.1093/jjco/hye132
- Lindqvist F, Schmitt P, Santalahti G, Romer, Piha J (2007). Factors associated with the mental health of adolescents when a parent has cancer. Scandinavian J Psychology, 48, 345-51. https://doi.org/10.1111/j.1467-9450.2007.00573.x
- Mansour ME, Kotagal U, Rose B, et al (2003). Healthrelated quality of life in urban elementary schoolchildren. Pediatrics, 111, 1372-81. https://doi.org/10.1542/peds.111.6.1372
- National Cancer Registry Malaysia (2006). Ministry of Health Malaysia.
- National Health and Morbidity Survey (1999). Institute of Public Health, Kuala Lumpur. Ministry of Health Malaysia.
- Syse A, Aas GB, Loge JH (2012). Children and young adults with parents with cancer: a population-based study. Clin Epidemiol, 4, 41-52.
- Nelson E, Sloper P, Charlton A, While D (1994). Children who have a parent with cancer: a pilot study. J Cancer Edu, 9, 30-6. https://doi.org/10.1080/08858199409528262
- Northouse LL (1989). The impact of breast cancer on patients and husbands. Cancer Nur, 12, 276-84.
- Northouse LL, Cracchiolo-Caraway A, Appel CP (1991). Psychologic consequences of breast cancer on partner and family. Seminars in Oncology Nur, 7, 216-23. https://doi.org/10.1016/0749-2081(91)90035-N
- Plomin R, Asbury K, Dip PG, Dunn J (2001). Why children in the same family are so different? Nonshared environment a decade later. Canadian J Psychiatry, 46, 225-33.
- Reinfjell T, Diseth TH, Veenstra M, Vikan A (2006). Measuring health-related quality of life in young adolescents: reliability and validity in the Norwegian version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and quality of life outcomes, 4(61).
- Rueden U, Gosch A, Rajmil L, Bisegger C, Ravens-Sieberer U (2006). Socioeconomic determinants of health related quality of life in childhood and adolescence: Results from a European study. J Epidemiol and Community Hlth, 60, 130-5. https://doi.org/10.1136/jech.2005.039792
- Varni JW, Burwinkle TM, Berrin SJ, et al (2006). The pedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Developmental Med and Child Neurology, 48, 442-9. https://doi.org/10.1017/S001216220600096X
- Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P (2002). The PedsQL in pediatric cancer: reliability and validity of the pediatric quality of life inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer Care, 94, 2090-106.
- Varni JW, Burwinkle TM, Seid M, Skarr D (2003). The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambulatory.
- Varni JW, Limbers CA, Bryant WP, Wilson DP (2009). The PedsQL Multidimensional Fatigue Scale in type 1 diabetes: feasibility, reliability, and validity. Pediatric Diabetes, 10, 321-8. https://doi.org/10.1111/j.1399-5448.2008.00482.x
- Varni JW, Seid M, Kurtin PS (2001). PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical care, 39, 800-12. https://doi.org/10.1097/00005650-200108000-00006
- Gazendam-Donofrio SM, Hoekstra HJ, van der Graaf WT, et al (2007). Family functioning and adolescents' emotional and behavioral problems: when a parent has cancer. Ann Oncol, 18, 1951-6. https://doi.org/10.1093/annonc/mdm373
- Gilbrar O (1998). Coping with threat: implications for women with a family history of breast cancer. Psychometrics, 39, 329-39.
- Gkoltsiou K, Dimitrakaki C, Tzavara C, et al (2008). Measuring health-related quality of life in Greek children: psychometric properties of the Greek version of the Pediatric Quality of Life Inventory(TM) 4.0 Generic Core Scales. Quality Of Life Res: An Int J Quality Of Life Aspects Of Treatment, Care And Rehabilitation, 17, 299-305. https://doi.org/10.1007/s11136-007-9294-1
- Grant KE, Compas BE (1995). Stress and anxious-depressed symptoms among adolescents: searching for mechanism of risk. J Consult Clinical Psychology, 63, 346-59.
- Harris CA, Zakowski SG (2003). Comparisons of distress in adolescents of cancer patients and controls. Psycho Oncology, 12, 173-82. https://doi.org/10.1002/pon.631
- Helseth S, Ulfsaet N (2003). Having a parent with cancer. coping and quality of life of children during serious illness in the family. Cancer Nur, 26, 355-62. https://doi.org/10.1097/00002820-200310000-00003
- Huizinga GA, Visser A, Van der Graaf WTA, Hoekstra HJ, Hoekstra-Weebers J (2004). The Impact of parental cancer and the family: a review of literature. Cancer Treat Rev, 30, 683-94. https://doi.org/10.1016/j.ctrv.2004.06.001
- Huizinga GA, Visser A, Van der Graaf WTA, Hoekstra HJ, Hoekstra-Weebers J (2011). Family orientated multilevel study on the psychological functioning of adolescent children having a mother with cancer. Psychooncology, 20, 730-7. https://doi.org/10.1002/pon.1779
- Iman SS (2007). Depression Anxiety Stress Scale (DASS): Revisited. The 4th International Postgraduate Research Colloquium Bangkok, Thailand: IPRC Proceedings, 184-96.
- Larson R, Wilson S (2004). Adolescence across place and time: Globalization and the changing pathways to adulthood. In R. Lerner and L. Steinberg Handbook of adolescent psychology. New York: Wiley.
- Lewis FM, Hammond MA (1992). Psychological adjustment of the family to breast cancer: a longitudinal analysis. J Am Women Assoc, 47, 194-200.
- Lewis FM, Hammond MA (1996). The father's, mother's and adolescent's functioning with breast cancer. Family Relation, 45, 456-65. https://doi.org/10.2307/585176
- Lewis FM (1996). The Impact of Breast Cancer on the Family: Lessons Learned for the Children and Adolescents. In Cancer and the Family, Baider L, Cooper C, De-Nour A (eds). Wiley: New York, 271-87.
- Major DA (2003). Utilizing role theory to help employed parents cope with children's chronic illness. Hlth Education Res, 18, 45-57. https://doi.org/10.1093/her/18.1.45
- House JS (1974). Occupational stress and coronary heart disease: a review and theoretical integration. J Hlth and Social Behavior, 15, 12-27. https://doi.org/10.2307/2136922
- Witt W, DeLeire T (2009). A family perspective on population health: the case of child health and the family. Wisconsin Med J, 108, 240-5.
- Armsden GC, Lewis FM (1994). Behavioral adjustment and self esteem of school age children of women with breast cancer. Oncology Nur Forum, 21, 39-45.
- Berkes A, Pataki I, Kiss M, et al (2010). Measuring healthrelated quality of life in Hungarian children with heart disease: Psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and the Cardiac Module. Health and Quality of Life Outcomes, 8(14).
- Compas BE, Worsham NL, Epping-Jordan JE, et al (1994). When mom or dad has cancer: markers of psychological distress in cancer patients, spouses and children. Hlth Psychology, 15, 167-75.
- Compas BE, Worsham NL, Epping-Jordan JE, et al (1996). When mom or dad has cancer: II. Coping, cognitive appraisal and psychological distress in children of cancer patients. Hlth Psychology, 15, 167-75. https://doi.org/10.1037/0278-6220.127.116.11
- Costas-Muniz R (2012). Hispanic adolescents coping with parental cancer. Support Care Cancer, 20, 413-7. https://doi.org/10.1007/s00520-011-1283-9
- Endler NS, Parker JDA (1990). Multidimensional assessment of coping: a critical evaluation. J Personality Social Psychology, 58, 844-54. https://doi.org/10.1037/0022-3518.104.22.1684
- Erickson SR, Munzenberger PJ, Plante MJ, et al (2002). Influence of sociodemographics on the health-related quality of life of pediatric patients with asthma and their caregivers. J Asthma, 39, 107-17. https://doi.org/10.1081/JAS-120002192
- Faulkner RA, Davey M (2002). Children and adolescents of cancer patients: the impact of cancer on the family. Am J Family Therapy, 30, 63-72. https://doi.org/10.1080/019261802753455651
- Felder-Puig R, Baumgartner M, Topf R, Gadner H, Formann AK (2008). Health-related quality of life in Austrian elementary school children. Medical Care, 46, 432-9. https://doi.org/10.1097/MLR.0b013e3181648e95
- World Health Organization (2012). Accessed at 10/6.2011. Availabe at http://www.who.int/maternal_child_adolescent/news_events/news/2012/lancer_adolescent_health/index_html.
- Associations between Quality of Life and Marital Status in Cancer Patients and Survivors vol.15, pp.13, 2014, https://doi.org/10.7314/APJCP.2014.15.13.5287
- Developing a Scale for Quality of Life in Pediatric Oncology Patients Aged 7-12 - Children and Parent Forms vol.16, pp.2, 2015, https://doi.org/10.7314/APJCP.2015.16.2.523
- Perceived Stress, Parent-Adolescent/Young Adult Communication, and Family Resilience Among Adolescents/Young Adults Who Have a Parent With Cancer in Taiwan vol.41, pp.2, 2018, https://doi.org/10.1097/NCC.0000000000000488