The Hidden Cost of Cancer: The Siblings’ Story,A Mother’s Narrative on How Three of Her Children Journeyed Through Their 14-Year-Old Sister’s 9-Month Journey From Ill Heath to Death and Beyond

Introduction

This study utilizes a mother’s narrative of how the diagnosis of cancer of one of her four children impacted the three siblings’ educational, social, emotional, and communication skills both during treatment and after her death. The aim is to draw lessons which may enable service providers to better support the siblings in families where a child is diagnosed with a chronic illness. This article is a sister study to that written by the author on the mother’s account of her 14-year-old daughter’s 9-month journey from the diagnosis of cancer to her death (Bara, 2017).

Cancer Research UK (CRUK) states that 1 in 500 children in the United Kingdom will get cancer between the ages of 0 and 14 years, which represents 0.5% of all cancers diagnosed. According to CRUK, there are more than 200 types of cancer, and treatment times range from 1 month to 3 years or more, depending on the type of cancer. During this time, families incur not only a financial cost but also physical, social, emotional, and psychological costs. Joubert, Wan, Bhatt, and Chan (2015) stated that “cancer patient management has unique characteristics compared to other chronic conditions,” in part, this is due to the complex and diverse nature of treatment and the spectrum of effects it has on the patient. Cancer treatment is complex and requires specialist centers, and depending on the cancer type, patients may be required to travel across county/state lines or international borders. Considerable periods of time might be spent in hospitals, not only for the treatment but also for the routine posttreatment monitoring of the spectrum of side effects that pediatric cancer patients incur. Appointments and treatment further contribute to the disruption in family routines and finances and can impact negatively on the whole family’s quality of life (Bara, 2017).

This article emerged from a larger study entitled “Do parents feel that the academic performance, and social, emotional, communication skills of their children with life threatening/limiting condition (LTLC), as well as their siblings, are affected by the condition?” (Bara, 2017). Using a thematic analysis (Braun & Clarke, 2006) of the larger study, it was felt that this simple case study encapsulated the issues that were presented in the wider study. The advantage of using this case study is that it enabled the researcher to look deeper into issues and better understand complicated situations (Ashley, 2017). This article highlights the fact that the mother viewed the siblings as an intrinsic part of her family’s cancer journey and she saw the impact that cancer was having on each child’s education, social, emotional, and communication skills. It is acknowledged that one should not draw generalizations from a single narrative, yet there are still merits in using this account. It not only reflects issues that were discussed by other families interviewed under this project, but this account was particularly pertinent as the sister died just 9 months after the diagnosis. As such, this case clearly illustrates the challenges that parents of chronically/terminally ill children face.

The mother acknowledged that the interview schedule allowed her a structured reflection on the journey she took with her children. The interviews could also be seen as empowering her during bereavement process; the mother clearly stated she felt lessons could be learned from her family’s experience and she wanted them shared.

The phrase cancer survivor is commonly used by professionals and people to describe a person diagnosed, living with or beyond cancer. There are two issues that arise from this study; the first is that society should acknowledge that siblings are an inextricable part of the childhood cancer journey, they will live with and beyond the diagnosis of their sibling’s cancer and may even play a key role in their sibling’s treatment, as such they should also be considered cancer survivors. The second issue is that a holistic approach should be taken by professionals in order to ensure that their needs are met when they are at a very vulnerable time in their lives. The study draws out the need for professionals to work and interact with the whole family in order to support them throughout the cancer journey. It clearly demonstrates that people’s actions can either support or exacerbate a traumatic and stressful situation. Therefore, it is vital that the professionals and friends listen to and hear what is being communicated to them. The discussion now moves on to consider the literature in this field.

Literature Review

Cancer is perceived by many as being a chronic or life threatening, therefore requiring a swift response time, and it is this that makes it a unique chronic illness (Bell & Ristovski-Slijepcevic, 2013). When a person is diagnosed and treated for cancer, he or she will go through a series of changes either physiologically or psychologically, as such, they will have a spectrum of immediate and late effects (American Cancer Society). Yet cancer survival can mean many things; clinicians commonly use it to describe a person who is 5 years postdiagnosis and who is cancer free, but this definition is challenged by physician Mullan (1985) who divided the cancer journey into three stages: acute, extended, and permanent. Cancer survivorship is not just about the length of time a cancer patient lives for but about their quality of life during treatment and beyond (Leigh, 2007). Therefore, the National Coalition for Cancer Survivorship’s (NCCS; 2017) definition of cancer survivorship will be used. The NCCS defines cancer survivorship as “living with, through and beyond a cancer diagnosis.”

Lederberg and Holland (2011) recognize that different members of the family react in different ways to the diagnosis, treatment, and death of a family member, and they too could be defined as cancer survivors as they may live through the three stages of cancer survivor. In some instances, family members may be a direct part of the treatment process, with bone marrow donation being one example. Bone marrow donation can be a lengthy procedure leaving the donor fatigued and bruised (CRUK, 2016). There are ethical issues that surround the testing for and harvesting of tissue samples from a sibling if they are minors and, in the United Kingdom, the procedure to gain consent follows a code of practice produced by the Human Tissue Authority (2017). Bendorf and Kerridge (2011) found that donors may subsequently feel abandoned following the donation procedure, when the family’s attention shifts from them to the recipient during the recipient’s long recuperation process. They also note that the donor may feel responsible for the outcome of the transplant itself.

Childhood cancer survivors often need to be close to their parents to feel in control; moreover, they may want to see their siblings or friends regularly, but hospital or ward policy may not cater for this need (Darcy, Björk, Enskär, Knutsson, 2014). Restricted access to patients may cause real conflict between the various parties causing additional social and emotional strain for the family.

Alderfer et al. (2009) conducted a systematic review of the “psychosocial adjustment of siblings of children with cancer.” They found that one or more parents will focus predominantly on the child with cancer resulting in a decrease in social activities as the parents may not be able to take the children to these key events. Houtzager, Grootenhuis, Hoekstra Weebers, and Last (2005) found that more than half siblings aged between 7 and 18 years showed fewer “positive emotions” within the first month of their sibling being diagnosed with cancer. Both Houtzager et al. (2005) and Alderfer et al. (2009) found that females had greater social issues than males, with Alderfer et al. (2009) stating that the adolescents struggled the most. In an earlier article about siblings of cancer survivors, Alderfer, Labay, and Kazak (2003) reported that siblings can show signs of or experience problems similar to posttraumatic stress.

The act of communication has many different mediums including oral, written, and body language, and siblings may find it challenging to understand and communicate the feelings they have which may result in them keeping them hidden (Kuo & Kent, 2017). Drawing is a communication instrument that can help childhood cancer survivors communicate how they are feeling during their journey (Rollins, 2005). Art therapy is one way in which a patient can become active in their treatment process and express their feelings (Council, 1999), and it allows people to process information and their emotions (Lusebrink, 2004).

Alderfer and Hodges (2010) concluded that a holistic approach should be taken whereby the family, education providers, and clinicians should work together to create a supportive environment for the siblings, in order to support them through their readjustment to having a sibling with cancer.

Methodology

A qualitative, narrative, and free associative methodological approach was used for data collection, as it is appropriate for researching individual experiences including bereavement (Hollway and Jefferson, 2008; Goldie, 2011). Participants in this research were self-selecting via an advert posted on a social media forum, where parents of children with cancer discuss pertinent issues. The advert was posted only after permission had been granted from the forum moderators, and ethical clearance had been obtained. The names of all parties have been changed, and the locations and dates have not been stated to maintain anonymity.

The University of East London Ethics Committee approved the research project, and consent was given by the participant to use excerpts from the interviews covering all topics.

The author has experienced cancer from multiple perspectives and at different ages and stages in his life. He has been both a service user and deliverer (as an educator) and as such, he has an insider’s perspective of the issues. In his first role as a qualified teacher, he taught a child who had just lost a parent to a brain tumor and supported them through part of the grieving process. Later, in 2012, the younger of his two children was diagnosed with an aggressive brain tumor at the age of two and a half. While his daughter was going through treatment, he worked as a home school tutor working with a child who was also being treated for cancer. He met the child’s two teenage siblings and sat with the whole family at times, discussing the issues they were facing. Furthermore, the author is an active member of the childhood cancer community. He is therefore conversant with the culture, norms, and language that are used by the pediatric cancer community, and this is reflected in this article. Due to these experiences, the author identifies with Dwyer and Buckle (2009) and acknowledges that, as an insider, his life experiences shape and inform his research, making him a different type of researcher.

A case study research was conducted entitled “Do parents feel that the academic performance, and social, emotional, communication skills of their children with a life threatening/limiting condition (LTLC), as well as their siblings, are affected by the condition?” (Bara, 2017). This interview, with Jane, stood out from that study due to the age range of the siblings, the emotional demands placed on the family, and the reactions that Jane, a mother or four, recounted the reactions of three of her children to their sister’s cancer journey. The interviews took place just before the second anniversary of the child’s death, and the researcher had been in contact with Jane 3 months prior to the interviews, which were conducted over several weeks for logistical reasons. Research questions were designed and developed in order to answer the key research question, and the questions were piloted and refined with three childhood cancer parents, following the method used by Ashley (2017). Nine months after the initial series of interviews, the mother got in touch to update the researcher on the progress of the children, and this additional information was incorporated into the article.

The interview can be considered a biographical account within the larger case study of Jane’s life story (Tedder, 2017), and it should be acknowledged that her answers were biased and subjective. The researcher and Jane shared similar cultural experiences, the culture of being cancer parents. Thus, a high level of trust was given to the researcher and a high level of respect was given to Jane (Bassey, 1999). In places the discussions transitioned from research interviews into what may be interpreted as a conversation between two parents who were sharing similar experiences. As such, the researcher was able to better understand Jane and what she was describing (Tedder, 2017). It is acknowledged that Jane may have adapted the story over time. Furthermore, the story may have changed as the questions may have challenged Jane to reassess her account and influenced future answers.

Throughout the interview process, the researcher verified with Jane if she was happy to continue, due to the personal nature of the research. She clearly explained that she was engaging in the research as a cathartic experience and she may have been selective in how she recounted her children’s experiences. The author recognizes that they have collected, interpreted, and presented data from the perspective of an insider. The author acknowledges that these circumstances not only create a position of bias, but they also allow for issues to be explored with increased depth and insight. Notes were taken during the interviews which were then transcribed, the researcher acknowledges that silences were challenging to analyze (Tedder, 2017). It could be argued that the mother’s narrative was anecdotal; however, this interview comprised part of a larger study and demonstrably highlighted the issues that parents in the wider study were discussing.

Thematic analysis (Braun & Clarke, 2006) was used to investigate the case study; this method allowed the author to identify and investigate patterns that arose from the data. Key themes to emerge from the case study were as follows:

The siblings are a fundamental part of the cancer journey and each sibling’s journey is unique.

Narrative interviews (Gray, 2009) were used to collect primary data. This method was used by Decinque et al. (2006) during their research of the support that bereaved families received after the death of a child from cancer. It is acknowledged that the aims were different, but it could be argued that the emotional experience was similar. While writing the research, the author referred to both the transcriptions and the audio recordings.

Results

Discussion

The aim of the study was to utilize a mother’s account of how the diagnosis of cancer of one of her four children impacted their siblings’ education, social, emotional, and communication skills.

The study found that the siblings were an intrinsic part of their sister’s cancer journey, and that each sibling’s own journey was unique, but there were also common themes. According to Jane, all three of the siblings faced challenges with their education, social, emotional and communication skills. These issues were either explained explicitly or implied by the mother. It was not within the scope of this article to discuss how the mother managed these issues, but it is worthy of further research. Therefore, while Susan was surviving cancer as defined by NCCS, it could be argued that so were the family.

Socially and emotionally there was an impact on all three siblings to differing degrees. The family routines that acted as a cornerstone for the children’s heath, such as eating together, attending weekly religious worship, and knowing a parent would be there to watch a school assembly, were disrupted when Susan started to get ill. The oldest sibling, Sarah, subsequently withdrew from university and placed greater demands on her family at a time when they were in crisis, so it can be argued that her social skills detrimentally changed. Tom became more socially isolated from his family during his sister’s illness and for some time after her death. Whether this was a result of the change in family routine during the cancer journey or a possible feeling of abandonment or responsibility from being her bone marrow donor (Bendorf & Kerridge, 2011), or the impact he felt directly from her illness and death, or a combination of these, was difficult to determine from the interview. It was clear that Katy suffered emotionally as she was not allowed physical contact with Susan at certain times during her treatment and, as a result of the disruption to her birthday, and she chose to withdraw to Susan’s room after her death. All of the siblings within study fell with the age range of 7 to 18 years, in line with Houtzager et al. (2005), and Jane described the siblings as having “fewer positive emotions.” As there were more female siblings than males, it is difficult to assess whether the sisters had greater social issues than the brother, as found by both Houtzager et al. (2005) and Alderfer et al. (2009), yet Jane did report that both suffered social issues to varying degrees. A seemingly simple thing like not being able plait Katy’s hair before school caused both Jane and Katy emotional distress and this may have led to a change in Katy’s behavior. The behavioral patterns of all three siblings clearly demonstrate that they had to psychologically readjust to the dynamic situation with their sister, and this links to the findings of Alderfer et al. (2009) and is clearly demonstrated by Jane not being able to attend Katy’s birthday party. It is worth noting that all three siblings may have felt socially and emotionally more isolated from both their mother, as Susan justifiably may have needed to be closest to her parents (Darcy et al., 2014).

The communication skills of the siblings adapted to the situation in order for them to cope with the situation. It could be argued that Sarah was causing additional pressure and stress on her family, conversely it could be argued that she was communicating her distress by her very actions and as such keeping her true feelings hidden (Kuo & Kent, 2017). Both Tom and Katy chose to isolate themselves in the house at various stages during and after Susan’s cancer journey, which may have been their way of keeping their feelings hidden. Jane explained how Katy drew, using art to express her feelings, which may have allowed her to process how she was feeling and understand her emotions (Lusebrink, 2004).

Susan was diagnosed at the end of the academic year and died half way through the next academic year. Two of the three siblings’ education was impacted in varying degrees by their sister’s illness and subsequent death. Upon reflection, the word “education” should be replaced with the phrase “impact on the siblings’ educational experience” as all three were not only in different educational establishments but also in different stages of their education. The common theme was that all were impacted. Sarah, the oldest, left her studies and returned home for the duration of her sister’s illness, this resulted in her degree taking one extra year to complete, and moreover, her peers would have moved on requiring her to develop new relationships. Tom’s school reported a change in his behavior, while this may not have affected his academic performance, but this could have impacted how his teachers and peers interacted with him. Katy, the youngest sibling and closest to Susan, presented no change in her academic performance. This could have been as a result of support systems being in place in both her primary and secondary schools which may have preempted any issues and in line with Alderfer and Hodges’s (2010) suggestions in terms of providing a supportive environment for the siblings. While one should not assume anything from a small-scale study, it might be surmised that the siblings’ academic performance may not have been impacted due to the time in the academic year that Susan was diagnosed, treated for, and died of her cancer.

What the parents and siblings witness and experience are a fundamental part of the cancer journey. The family’s rights and needs should be recognized, acknowledged, and considered by all parties who encounter them; this includes hospitals, charities, schools, employers, and any organizations that the family is part of. The whole family’s voice should be listened to both individually and as a group. Each person’s feelings and needs should be considered, not only in the short term but also over the long term. Once the child with cancer has either survived the cancer as per the standard medical definition of five years or the child has passed away, the family will still carry on, thereby making each member a survivor.

The term cancer survivor is owned by the patient, but from the findings of this research, it is clear that siblings are also cancer survivors. They are living with, through, and beyond the diagnosis of cancer, and in this study, Tom, by donating his marrow, became an integral part of his sister treatment. Therefore, when looking the impact of cancer, one must look at the social, emotional, and educational impact that cancer has on the siblings in the short, medium, and long terms, and a multidisciplinary approach and plan should be developed to support siblings between the ages of 0 to 18 years. A review should be conducted on each sibling at the start of their sibling’s diagnosis. Their social, emotional, psychological, physical, and educational performance should be baselined, and this baseline must be reviewed regularly in order to ensure the siblings are progressing at the same level if not at a higher level prediagnosis. This may provide early intervention for any issues that may arise, not only helping the child but also reducing the cost that the diagnosis of cancer brings to the family and wider society.

Conclusion

Due to this intensity, the siblings had to transition between having a healthy sister to one that was very ill and subsequently dying within 9 months. This had a significant impact on the siblings’ educational, social, emotional, and communication skills.

As the numbers of children and young adults being diagnosed with cancer increases, so the number of siblings being affected by cancer goes up. The challenges, issues, and traumas the siblings face may largely go unnoticed and unrecognized and can lead to additional strains and costs being put on the stakeholders who work with them. It is vital that a holistic approach should be taken when a child or young adult is diagnosed with cancer, and systems should be put in place to support the siblings throughout the cancer journey and beyond.

It is the author’s belief that when society recognizes a child’s diagnosis, they should also properly acknowledge and accept the pressure the whole family is under. A flexible action plan should be rapidly developed and implemented in order to support the whole family throughout the cancer journey. The action plan should be reviewed on a regular basis in order to ensure that support is in place during critical transitional periods to reduce the effects that the cancer journey is having on the siblings and family, thereby improving the quality of lives of the whole family.

I will allow Jane to finish this article with a quote regarding the family’s journey:

When Susan was alive and well we were very family oriented and had picnics, family bike rides, played board games together, etc. After Susan died it became incredibly difficult to do things together as a family because the sheer act of getting together as a family was a painful reminder of Susan’s absence.