Issues of Assessment and Adjustment Following a Cancer Diagnosis
An ESUN Article
Editor's Note: It is my pleasure to introduce Marianne Burnell-Griffin, RN as the new editor of our column "From a Nurses Perspective." Marianne is the Clinical Coordinator of the Victorian Sarcoma Service at Peter Mac Callum Cancer Centre/St. Vincent’s Hospital Melbourne, Australia. She was born in Nagambie Victoria, Australia and raised among the wheat belt of the Mallee. Her education was completed at Mentone Girls Grammar Melbourne. She earned her nursing degree the Alfred Hospital with a post graduate year in surgical ward management and Intensive Care Nursing. Marianne also has a Bachelor of Arts with a double major in Philosophy and English Literature from Monash University in Melbourne. She has had an interesting and varied career in public relations, administration, teaching and research in addition to her nursing qualifications.
To see a world in a Grain of sand
And Heaven in a Wild Flower
Hold Infinity in the palm of your hand
And Eternity in an hour
-- William Blake --
These are some of my favourite lines from the opening of "Auguries of Innocence" by William Blake but I suspect, much more commonly recognised as words spoken by the character Lara Croft in the movie "Tomb Raider." However, they do lead one to reflect on some of the issues that people encounter in trying to adjust their world to an often unexpected and devastating change in health status. A one hour consultation can change a person’s life and in ways they may never have imagined or are able to cope with.
Although we would normally think of chronic disease as other than acute cancer care, it is defined as "disorders that persist for an extended period of time that affect a person’s ability to function normally and also have the potential to induce profound changes that result in negative effects on quality of life and well being". (Ridder et al. 2008)
The diagnosis and management of sarcomas combines a complex schedule of diagnostic imaging, three modalities of care, as well as regular reviews and surveillance monitoring. This makes it a challenge for individuals to maintain any sense of well being and normality as defined by their own perception of time and place in the world and consequently can be dealt with anywhere in the range between healthy adjustment and that which is defined as clinical depression.
In the chicken versus the egg argument, there is a presumption that depression is thought to precede poor self management. However according to Ridder et al. 2008, there is no evidence to support this. It is well recognised that a person’s underlying and pre-existing coping skills, both conscious and unconscious will determine to a large extent, how they will experience, process and modulate their way through the kaleidoscope of emotions that they encounter during this time. These can range anywhere between ambivalence to avoidance, with compromise and repression falling into the middle.
In the treatment of sarcoma, compromised physical well being due to the toxic side effects of chemotherapy in particular, or perhaps to a lesser extent radiotherapy, can lead to a range of mild forms of psychological discomfort which can include lethargy, anxiety, as well as a general sense of loss of direction in life. This may be enough to interfere in a person’s ability to maintain emotional regulation and balance. Recognition of this by healthcare professionals and treating teams can enable targeted planning in the delivery of information and support to patients; assisting them to acquire the skills required to maintain the highest quality of life possible, from diagnosis through active therapy into follow up and survivorship care, no matter which variable of patient demographic.
Comprehensive psychosocial assessment during the early stages of treatment is critical and should be considered as a priority in conjunction with the medical and physical aspects of an individual’s treatment plan. This assists the Multi Disciplinary Team and provides an understanding of psychosocial functioning and will enable targeted intervention, if necessary to take place. Emotional well being is one of the many threads that form the complex weave of total patient care. Optimum patient care dictates that this process should be reviewed regularly. An individual’s ability to reconceptualise and reprioritise internal goals and values may lead to altered changes in behaviour over time and this in turn will require re assessment and recognition by the treating team.
Given sarcoma's prevalence in the younger population, healthcare professionals need to be mindful of the particular unique needs of this group. It is a period of flux and change. Working with the Adolescent and Young Adult group requires a detailed understanding of these rapid changes that occur in the physical, cognitive, psychological, social and existential make-up of adolescents and young adults. It is imperative to recognise that such development must continue despite the diagnosis of a life-threatening illness. Therefore, the needs of young cancer patients must be considered in the context of normal development (Mulhall et al, 2004; Ellis, 1991).
In what we now consider as holistic care, it is not enough to just get the young patient through treatment. Multi-disciplinary teams must be used to help young AYA cancer patients grow into "functional" adults within society (Ritchie, 2001). Appropriate care needs to come from an understanding of how cancer diagnosis and treatment may affect a young person’s identity, self-esteem, body image, life perspectives, future prospects, distress levels, peer relationships, family dynamics and communication needs (Adolescent and Young Adult Oncology Progress Review Group, 2006).
It is our challenge to promote the development of autonomy and the ability to self manage each own individuals health care program on a very basic level through to complex psychosocial intervention. If those vagaries of thought that lead to melancholy and listlessness can be recognised, and physical well being with standing, a promotion of physical exercise and good nutrition has been proven to aid in an increase quality of life and emotional well being (Irwin et al 2008). If at all possible, maintenance of moderate to intense physical activity for at least two to three hours a week at a minimum, promotes beneficial effects which may be mediated through a reduction in body fat, and promoting beneficial changes in metabolic and sex hormones, growth factors, immune function or inflammation (Irwin et al, 2008).
As we are all individuals from differing cultural backgrounds, gender, age as well as ethnicity, there is no right or wrong way to go through this emotional and physical process. Incremental change on a daily basis underpins the philosophy that one day at a time works for patients and their families to assist in the emotional adjustment process and management of a person’s individual health care program.
Happiness is having something to love, having something to do, having something to hope for.
-- William Blake --
References
Psychological adjustment to chronic disease. Denise de Ridder, Rinnie Geenan, Roeline Kuijer and Henriet van Middendorp. vol 372. The Lancet. July 2008
Influence of Pre- and Postdiagnosis Physical Activity on Mortality in Breast Cancer Survivors: The Health, Eating, Activity, and Lifestyle Study. Melinda L. Irwin, Ashley Wilder Smith, Anne McTiernan, Rachel Ballard-Barbash, Kathy Cronin, Frank D. Gilliland, Richard N. Baumgartner, Kathy B. Baumgartner, and Leslie Bernstein: Journal of Clinical Oncology. Vol 26. Aug 20. 2008
Mulhall, A., Kelly, D. & Pearce, S., A qualitative evaluation of an adolescent cancer unit. European Journal of Cancer Care, 13, 16–22. (2004)
Ellis, J., Coping with adolescent cancer: It’s a matter of adaption. Journal of Pediatric Oncology Nursing, 8(1), 10–17. (1991)
Ritchie, M., Psychosocial nursing care for adolescents with cancer. Issues in Comprehensive Pediatric Nursing, 24, 165–175. (2001)
US Department of Health and Human Services (2006). Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. Report of the Adolescent and Young Adult Oncology Progress Review Group.
V5N5 ESUN Copyright © 2008 Liddy Shriver Sarcoma Initiative.