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Research Trends For Stress In Parents With Children With Cancer

Research Trends For Stress In Parents With Children With Cancer

How Parents Cope When They Have Children With Cancer

There is no doubt that this is a devastating experience. Your children with cancer is every parents’ worst nightmare.  Understanding this fact seems intuitive and therefore, researching stress in parents of children with cancer could be arguable.  Your child being diagnosed with cancer would be overwhelming.  What new facts could possibly be brought to light when this is such an intuitive fact.

But there is true value in researchers endeavouring to develop a full understand of how that stress manifests.  Common forms of distress reported by carers of children with cancer include depression, anxiety, caregiver burden, impact on family function, anxiety, perceived poor and depression, distress, disruption to daily routines, impacts on employment, reduced health and considerable financial impacts.  But when does the greatest stress occur?  For example, is the greatest stress experienced at diagnosis or does it extend in to the chronic phase?  Does the stress improve or does it continue for the long haul?  The list of negatives is easy, but are there any positives that come from this?  The research explored here is important as it will formulate the appropriate timing for when to seek help, what is commonly experienced by others – what is “normal”.

How Resilient After Caregivers Of Children With Cancer

The first1of three pieces of research that reveal some insights into the common experiences of stress.  The researchers aimed to identify psychological and quality of life impacts of 89 newly diagnosed children with cancer and their caregivers and their ability to adjust over a six month period.  Unsurprisingly, they found a marked decline in quality of life after diagnosis of cancer in a child.  However, what this study revealed was that parents and children display adjustment and recovery over a six month period.  While quality of life indicators did not match those of their “normal” or control group counterparts, they showed noticeable improvement.  Parents showed less depression and improved competence at six months.  This research hints at one of the most amazing skills that consistently is seen amongst this group: caregivers of children with cancer have the most remarkable capacity to adjust and adapt.

Do Stress Levels Improve At Any Time After Diagnosis?

So what is clear that stress levels do show some improvement.  However, they are higher than those of the control group.  So, does the stress resolve or continue to bubble along?  The secondarticle that we examined included a group of 90 caregivers of children with cancer, specifically brain tumours.   They tested the adjustment of those caregivers whose child is undergoing active treatment (on-treatment) versus the adjustment of those caregivers whose child is not undergoing active treatment (off-treatment).   They believed that the stress continued well into the off-treatment phase of caregiving.

The results showed a clear: the on-treatment group reported greater anxiety, depression and greater impact on family functioning.  However, both groups were identified as having high levels of stress in their post-traumatic symptoms and experience high levels of uncertainty.  Parents of both groups were found to internalise their feelings of caregiver burden.  Both groups reflected considerable feelings of ongoing social and financial impact.

On the positive side, this phenomenal group of people showed considerable resiliency and increased adaptability.   Again, this indicates that carers of children with cancer develop a sense of mastery with the demands relating to care.  This indicates that “some caregivers experience unexpected benefits such as increased acceptance, empathy and appreciation, a more positive self-view and repriorization as a result of the cancer experience”3.

The results of this study suggest that parents and caregivers should be targeting long term acceptance of uncertainty and anxiety.  Understanding that caregivers demonstrate strong resiliency and adaptability is important.  The ongoing and late psychological impact of caregiving for a child with cancer could easily be overlooked so it is important to identify this so that support can be sought, even when parents are in an off-treatment phase. This is important to focus on the positive outcomes and alleviate the negative outcomes.

What Sorts Of Reactions Did Most Parents Have To Caregiving?

This lead us to consider that, indeed, there are negatives and positives to this caregiving experience.  Our thirdpiece of research aimed to explore these positive and negative reactions with a study of 198 parental caregivers.  The authors theorized that positive reactions and burdens were both a part of the caregiving experience.  They found that the experience is a highly complex one.  On the positive side, parents experienced high caregivers’ esteem, reflected by feelings of reward, satisfaction and considerable family support.  On the negative side, financial burden was common, due to medical expenses and lost income from reducing or ceasing work.  Also, it was common that parents allowed their health to be impacted as they were likely to put their health as a secondary priority to that of their child’s.

Acknowledging the importance of the positive outcomes of the caregiver experience as well as negative is vital.  Parents and caregivers are hopefully comforted by the fact that there are some positives to this devastating situation.  Recognise the negative experiences that are universal and take action as early as possible.  Action might take many forms: seek counseling, social support, take a break, look after your own health.  But take action.  Accept that the stress, burden, anxiety and depression is common and generally ongoing, although not nearly as intense as the initial post-diagnosis phase.  What these researchers have truly done is simple: they have identified the enemy.  And, as the great Sun Tzu has said…

If you know the enemy and know yourself, you need not fear the result of a hundred battles.

 

 

References
 
1. Tsai, M. T., Hsu, J., Chou, W., Yang, C., Jaing, T., Hung, I., Liang, H., Huang, H. & Huang, Y. (2012). Psychosocial and emotional adjustment for children with pediatric cancer and their primary caregivers and the impact on their health-related quality of life during the first 6 months.  Qual Life Res.  22,  625-634
2. Hutchinson, K. C., Willard, V. W., Hardy, K. K. & Bonner, M. J. (2009). Adjustment of caregivers of pediatric patients with brain tumors: a cross-sectional analysis.  Psycho-Oncology. 18, 515–523.
3. Rodday,A. M., Pedowitz, E. J., Mayer, D. K., Ratichek, S. J., Given, C. W. & Parsons, S. K. (2012).  Parental Caregiving of Children Prior to Hematopoietic Stem Cell Transplant.  Research in Nursing & Health.  35(4), 328-339.
 
Are you the parent caregiver of a child struggling to understand what is normal? Share your concerns and how your experience relates to these researchers’ findings
 
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Nic Nash-Arnold has been nursing for twenty years. She has nursed thousands of patients, mainly in the operating theatre. Nicole has worked in both public and private hospitals in Queensland. Ten years ago, she left the “coal face” of nursing and moved into a Nurse Educator role and then a series of senior and executive hospital administration roles. Nic has always believed in the empowerment with education. That might be empowering nurses to provide better care or patients to take better care, but education is always the centre of the solution. Google 
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