From Parental Hopelessness to Empowerment
A paediatric cancer diagnosis requires the family to accept a different understanding of normal, a new system of comfort, and reworked methods of interaction. “Cancer in children is a phenomenon that affects not only the child with the illness, but other members of the family as well” (Svavarsdottir, 2004, p. 160). Every member of the family is impacted and every member must determine their new role within an ever changing scene.
What does it mean to be a parent of a child with cancer? The parental experience and response to childhood cancer is wide-ranging and intense. Throughout the journey, they deal with “a seamless and at times relentless maelstrom of needs and tasks. The ebb and flow of crushing heartbreak and soaring accomplishment punctuate their lived experience” (Ratliffe et al., 2002, p. 186). The parent is tested in ways that they never imagined and are put into situations that are beyond surreal. This can easily lead to feelings of hopelessness. However, the right support system, information, and coping strategies can also put parents on the road to empowerment.
Part of dealing effectively with stress is identifying it. When you recognize and understand the stress that you are experiencing, you are able to better marshall your resources to help find appropriate coping strategies and solutions. The right support system, tools, and resources, can help put parents on the road to empowerment and keep hope alive and strong.
The stress that surrounds the parents is complex and ever-changing. The following illustrate some of the challenges faced by parents who have a child with cancer:
A cancer diagnosis for your child is a moment of perfect darkness and complete unexpectedness. Upon hearing the word “cancer”, there is little chance to breathe, think, and process everything that is happening to any appropriate level of depth. As one would expect, the stress level of the entire family at the time of diagnosis is immeasurable. Feelings of terrific sadness, finding the diagnosis absolutely unacceptable, and wanting to believe that everything is a dream are just a few of the emotions experienced (Al-Gamal and Long, 2010). Parents are immediately put into the position of making life-threatening decisions with little information and must figure out how to navigate the waters of the medical system with little help. What also makes a paediatric cancer diagnosis additionally challenging is that parents are “often in the early stages of their family life cycle” (Patterson et al, 2004, p. 390) and are not only learning how to be parents, but must now learn how to be parents of a child with cancer.
Treatments for paediatric cancer are frequent, demanding, and often require extended stays in the hospital (Bayat, 2008). There are numerous tests and scans which must be done on a regular basis, and these continue long after the treatment is done to monitor the child’s health. The treatments, and even the tests, are painful for the child and can themselves cause a myriad of additional medical complications. In addition, treatment regimes can be experimental and dangerous, with unknown outcomes and impacts. Parents must wade into the waters of “acceptable risks and side-effects”, having to accept treatment pathways which may cause irreversible and long-term damage (i.e., hearing loss, infertility, impacts on growth, etc.).
Seeing your child desperately ill, watching them go through the various stages of treatment, and experiencing pain is excruciating. The realization that your child may not survive carries the most profound weight and darkness for a parent. You are placed within a situation that you have little control over, that is highly uncertain, and carries great risk (Greening and Stoppelbein, 2007). The feeling of hopelessness can be overwhelming as you fight a monster that you cannot see.
The risk of relapse is also terrifying for a parent and, unfortunately, with high-risk (stage IV) neuroblastoma, there is a 50-60% chance of relapse (Maris, 2010) and there is no cure for when the disease returns. The constant worry about relapse can be extremely difficult to manage. It is a stressor which is ever-present, is not easily managed emotionally, and it is difficult to find appropriate coping mechanisms to help ease the fear. This continual uncertainty is not only reserved for relapse – other issues such as concerns around late-effects (i.e., thyroid, hearing loss, infertility) and the return of a different malignancy will remain with a parent for an extended period of time (Patterson et al., 2004; Al-Gamal and Long, 2010).
When your child is diagnosed with cancer, a new and different life begins. This “new normal” requires taking care of your child, their siblings, your partner, your extended family, and of course yourself in new ways. Families mourn the loss of their old life, their past routines, and sense of normal. This is especially the case when the child is going through treatment, but does continue even after the therapy cycles have finished. “Parents of children with cancer face many challenges that vary over time. They need not only to face their child’s emotional reaction to the illness situation, but also their own reaction. At the same time, these parents need to be aware of how other family members, such as other children in the family, are handling the illness experience” (Svavarsdottir, 2004, p. 154).
With a strong support network, families can experience feelings of isolation and loneliness. Often, parents must limit the interaction that the family has with the environment due to their child’s fragile immune system (Bayat, 2008). Bringing home a common cold could easily mean a future hospital admission if the child develops a fever or other concerning symptoms. Hospital admissions mean that the family is separated from one another and their extended support system. However, even when it is possible to take the child or children out into public, it is often very difficult for families to do activities outside of the home that are unplanned or spontaneous since there is typically more detailed pre-planning that must be done (i.e., medication schedules) (Ratliffe et al, 2002).
When your child has cancer, your role as a parent expands to be a co-ordinator of care, a medical expert, an advocate for your child, and a systems specialist (Kratz et al., 2009). Parents must learn to shift from one role to another, often multiple times during a single day. When the family is at home, the parents are the primary care providers who are “in charge”. The parent(s) manage the child’s care, dose medications, execute health care tasks, make medical decisions, and do this while balancing all of the other challenges and family demands (Kratz et al., 2009).
However, when the family is in hospital for treatment, the parent(s) must take on a secondary role and watch as doctors and nurses perform tasks that they would typically do at home. “Finally, family dynamics change as all members of the family shift their usual roles and responsibilities to accommodate the extraordinary care burden of a medically fragile child. Families report that these changing interpersonal dynamics can be quite disruptive. This is not surprising as a large measure of personal security and identity in a family unit comes from knowing where we fit” (Ratliffe et al., 2002, p. 180).
“The situation is further complicated when parents have to assume the role of teacher and supervisor to health professionals that come into their home. This is often uncomfortable for all concerned and power conflicts are not uncommon” (Ratliffe et al., 2002, p. 180). In addition, procedures and supplies that are used in the hospital are often not the same tools that are provided to the parents when they are at home. This creates confusion and stress for the parent when they must figure out how to execute a medical task with different procedures and equipment (Ratliffe et al., 2002).
5. Healthcare System
Navigation of the healthcare system in Canada is complex, challenging, but also something worth appreciating. There are situations of immense frustration due to incompetence but there are also moments of terrific gratitude when the medical team works together to find solutions to problems. Often, the medical system is one that is full of rules and boundaries that make acting quickly extremely difficult (Ratliffe et al., 2002). However, there are moments when everything seems to fall into place. You often do not know how long it will take to get test results, how quickly a procedure will happen or when a specialized team will arrive to consult on a particular issue. It is impossible to know how fast or slow things will move and parents have to be prepared for all scenarios, at all times.
6. Parenting a Child with Cancer
Learning how to be a good parent is a wonderful challenge; however, learning how to parent a child with cancer opens up a whole host of unknowns. There are few resources available to parents to help them deal with behavioural issues, find methods of gentle discipline, and generally understand how to help your child as they deal with a wide array of emotions and experiences. Navigating these waters without any support tools is extremely daunting. Surprisingly, there has been little research done in this area and there are few tools that can be given to parents to help with the necessary evolution of their parenting style.
7. Marriage and Partnerships
Various studies have been done to examine the effect of paediatric cancer on marital relationships and partnerships. Some researchers have found that the paediatric cancer experience causes a great deal of negative stress between the partners, some have found that there is no impact, and other studies have shown that some partnerships will become strengthened by the experience (Lavee and Mey-Dan, 2003). Not surprisingly, the area of sexual intimacy is often a common issue, mainly due to fatigue. Alternatively, partners often report stronger lines of communication and the ability to view their partner more positively. As in any relationship, a partnership is a continuous journey of highs and lows.
For some, dealing with an acute illness such as cancer is simply too difficult. When your child is diagnosed, it is possible that some people around you will not be able to cope emotionally with the diagnosis and may withdraw from your support network. Relationships between family and friends can change significantly and these changes can occur with people that you never imagined. Some families may also not have the rich support networks and community that other families do. The lack of support and ability to call on people to help can create serious challenges for a family. Without a support network, there is little respite for parents which can result in mental, emotional and physical exhaustion.
When a child is hospitalized, especially during the acute treatment cycles, parents naturally want to be with their child. For some families, it is possible that one or both of the parents take some degree of leave from their workplace; however, not all families are able to make these changes due to financial concerns (Patterson et al, 2004) and/or being a single-parent household. Even within Canada where a good portion of the medical costs are covered and there are financial support systems available, there are still considerable financial implications when your child is diagnosed with cancer (Ratliffe et al, 2002). These include the purchasing of equipment, supplies, nutritional supplements, transportation and parking costs, and many other out-of-pocket expenses.
Parents of children with cancer typically suffer from extreme fatigue. This is commonly because they are never off, they constantly have to be in a state of heightened vigilance, and they are often on a daily schedule due to medications, procedures, and other care responsibilities (Kratz et al, 2009). Parents can feel guilty calling on their support networks for help when they have already asked for assistance in the past. Often times, the care for their child is very complex and may require a significant degree of training before the parents can leave the child with another person (i.e., medications, care for a central venous line, etc.). Unfortunately, there are a limited number of support venues for parents outside of their family and friends which means that parents may not get the necessary time-off to recharge and renew their spirit on a regular basis. Overall, caring for a child with cancer is an immense challenge, and is often a heavier weight than one could ever imagine (Al-Gamal and Long, 2010). Fatigue also has the ability to amplify all of the stresses that parents experience – the more fatigued a parent is, the more likely they will have challenges dealing with the stresses outlined above.
Impact of Stress:
Parents spend a great deal of time trying to accept their new situation and come to terms with what is happening in their lives as they journey through paediatric cancer. There are past, present, and future concerns – wishing for the life before diagnosis, the ever-present worry about your child’s health, reflecting on the unfairness of treatment, worrying about what could happen, being angry for all that has been taken away and sacrificed, and feeling an overall sense of sadness (Al-Gamal and Long, 2010). With all of the different stresses, it is far too easy to fall into a hollow of hopelessness. “Uncertainty about the future, thoughts that the treatment may not work, or a relapse may occur all serve to increase parents’ feelings of hopelessness. All these issues affect their coping strategies. These unknown events and feelings of despair and hopelessness increase the anxiety and depression levels of the parents and affect their plans and hopes for the future” (Bayat, 2008, p. 250).
It is normal that parents will feel worry and sadness, but it is important for parents to be attentive to the possibility that these challenges could become clinically significant. Research has shown that parents of children with cancer experience a high degree of distress, depression, and anxiety, especially in the first year after diagnosis (Greening and Stoppelbein, 2007). If a parent feels that they, and/or their partner, have reached the threshold of a disorder such as depression, it is important to find professional help. A good place to start is with the family Doctor.
The list of stresses that a family experiences is significant. The family’s ability to process, address, and cope with these stresses can have a great impact on the child’s and the family’s quality of life. The way that the family decides to respond to these stresses will impact each member of the family unit. “Family responses, in addition to adverse effects, may also be positive and adaptive, and can potentially buffer or protect the child and other family members from negative psychosocial sequelae. Effective parental coping, for example, was found to protect children from feeling hopeless following treatment for cancer” (Patterson et al, 2004, p. 391). However, and as one would expect, ineffective parental coping can have a negative impact on the child and the entire family as a whole.
The task of creating a protective world around your child is a formidable task. Trying to remain strong and present for your child, while seeing them ill and in pain, is sometimes impossible. However, the process of finding coping strategies, ways to manage the fear, and methods to take positive action can help to find that tipping point which keeps you from falling into the world of helplessness (Ratliffe et al., 2002). This process can help to power your own internal energy, and reveal strengths that you never knew you had. “For example, parents noted their child demonstrated increased compassion, tolerance, and maturity beyond their years. Regarding themselves, parents described an increased appreciation for what is really important and clarity about life’s meaning, personal growth and discovering inner strength they never thought they possessed” (Kratz et al., 2009, p. 309). The task of finding beauty in the cancer journey is not without its challenges, but it is possible.
People experience and deal with stress in various ways. Finding the most effective coping strategies must be done on an individual basis – what works for one person may not work for another. The following are examples of coping strategies (Kratz et al., 2009; Patterson 2004):
- Changing your way of thinking to be positive, hopeful, and focused on the present.
Finding faith and placing trust in your beliefs.
- Seeing good in the journey.
- Adjusting expectations.
- Trying to have a sense of humour.
- Releasing your emotions.
- Celebrating small achievements.
- Caring for your personal needs.
- Knowing that your emotional well-being will impact the child’s and the entire family’s emotional status.
- Seeking professional help from your family Doctor, Social Worker, Psychologist, or Psychiatrist.
- Working to maintain some normalcy in life.
- Advocating for the child.
- Being knowledgeable about the disease, treatment, and procedures (i.e., learning the language of the medical system).
- Being organized and keeping records. Write everything down — all medications, doses, dates of procedures, decisions made, etc.
- Being prepared for various situations (i.e., long clinic visits).
- Developing strong partnerships with the people who care for your child and ensuring that these relationships are built on mutual trust and collaboration.
- Knowing when to be more forceful in having a decision made.
- Focusing on providing a good quality of life for your child and your family as a whole.
- Finding activities which bring you a sense of outlet and satisfaction. Try to integrate them into your life whenever possible.
- Connecting with other families who have a similar diagnosis and learn from them.
Supporting other families that you come to know and share your journey with them.
- Fostering the connections you have with family and friends.
- Finding online resources, newsgroups, and websites.
- Keeping a journal.
- Fundraising for a representative charity.
- Taking a role in advocating for your cause on a broader level.
- Finding a physical activity that can act as an outlet for negative energy (i.e., running).
- Eating well and sleeping.
Finding the right coping strategies is about finding some degree of peace within yourself; however, it is also about reclaiming a level of control within your life that was lost with your child’s diagnosis. The medical system can also play a significant role in assisting the parent to gain back some control and self-confidence. It is about empowering parents to be an active member of their child’s care team and be engaged in a collaborative team that is built on mutual respect, trust, and collective decision making (Dellve et al., 2006). “Inviting the parent to take an active role in their child’s care and into a partnership can build confidence, competence and a robust sense of parental self-efficacy” (Kratz et al., 2009, p. 311). In order for a parent to feel confident in their role as a part of the care team, they must believe in their own capabilities and feel confident that they are able to be an effective member of the process. This is achieved through proactive support, reliable information and good team experiences. When parents are confident about their role, they will take greater degrees of responsibility in their child’s care, be better equipped to navigate the health care system, and often become more comfortable in their new parenting situation (Kratz et al., 2009; Dellve et al., 2006). As an example, SickKids Hospital in Toronto introduced Family Centred Rounds in 2009, originally as a pilot program on a satellite oncology ward. It was such a great success that it was instituted through all of paediatric oncology/haematology in 2010.
Allowing the parents to be a part of the care team is a significant change within the medical system. When parents are included as part of the care team, they are more likely to trust the other team members and the care that is being provided to their child. It is also a different role for the care professional – they must be one of the team instead of being “the expert” (Ratliffe et al., 2002). Parents must be given the knowledge, skills, resources necessary to properly understand the disease, the basic nuances of the hospital system, and strategies such as effective negotiation and decision making (Dellve et al., 2006). “In today’s health care culture, parents are critical members of their child’s health care team, especially when the child has ongoing health concerns. Effective collaboration between the parent and health care professional is the cornerstone to successful outcomes in this new approach to managing chronic conditions” (Kratz et al., 2009, p. 304).
Being a parent of a child with cancer is an incredible challenge. The experience has the power to illuminate every one of your weaknesses and strengths simultaneously. If you didn’t know already, it quickly makes you realize who you are and who you want to be. The road is long, and it is easy and natural to feel a sense of hopelessness. There are tools and supports to call on; there is also the responsibility of the healthcare system to help instil parental empowerment by inviting parents to be part of their child’s care team. In total, it is a complex system of many parts and pieces that must come together to protect a child, create meaning, and realize the power of hope.
Thank you very much to our guest editor, Dr. Karen Palmer M.D., FRCP(C) in Victoria, B.C.
Al-Gamal, E., and Long, T. (2010) Anticipatory Grieving Among Parents Living with a Child with Cancer. Journal of Advanced Nursing. Vol. 66, No. 9, pps. 1980-1990.
Bayat, M., Erdem, E., and Kuzucu, E.G. (2008) Depression, Anxiety, Hopelessness and Social Support Levels of the Parents of Children with Cancer. Journal of Pediatric Oncology Nursing, Vol. 25, No. 5 (September/October), pps. 247-253).
Dellve, L., Samuelsson, L., Tallborn, A., Fasth, A., and Hallberg, L.R.M. (2006) Stress and Well-Being Among Parents of Children with Rare Diseases: A prospective intervention study. Journal of Advanced Nursing, 53(4), pps. 392-402.
Greening, L., and Stoppelbein, L. (2007) Brief Report: Pediatric Cancer, Parental Coping Style, and Risk for Depressive, Posttraumatic Stress, and Anxiety Symptoms. Journal of Pediatric Psychology, 32 (10), pps. 1272-1277.
Kratz, L., Uding, N., Trahms, C.M., Villareale, N., Kieckhefer, G.M. (2009) Managing Childhood Chronic Illness: Parent Perspectives and Implications for Parent-Provider Relationships. Families, Systems and Health, Vol, 27, No. 4, pps. 303-313.
Lavee, Y., and Mey-Dan, M. (2003) Patterns of Change in Marital Relationships Among Parents of Children with Cancer. Health and Social Work, Vol. 28, No. 4, pps. 255-263).
Maris, J. M. (2010). Recent advances in neuroblastoma. The New England Journal of Medicine, 362, 2202-2211.
Patterson, J.M., Holm, K.E., and Gurney, J.G. (2004) The Impact of Childhood Cancer on the Family: A qualitative analysis of strains, resources and coping behaviours. Psycho-Oncology, Vol. 13, pps. 390-407.
Ratliffe, C.E., Harrigan, R.C., Haley, J., Tse, A., Olson, T. (2002) Stress in Families with Medically Fragile Children. Issues in Comprehensive Pediatric Nursing, Vol. 25, pps. 167-188)
Svavardottir, E.K. (2004) Caring for a Child with Cancer: A Longitudinal Perspective. Journal of Advanced Nursing, Vol. 50, No. 2, pps. 153-161.