The Experiences of Parents of Pediatric Patients With Acute Lymphoblastic Leukemia,2 Months After Completion of Treatment

Abstract

Diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) can be a highly stressful time for the entire family. While completion of treatment may bring relief to some families, it may also bring about additional anxieties and fear. The primary objective of this article is to present an analysis of the experiences, emotional states, and support needs of parents of pediatric cancer patients 2 months after treatment completion for ALL. Using a qualitative interpretive description approach, transcripts from interviews with 17 parents from the leukemia/lymphoma program of a large urban pediatric cancer center were analyzed using N-Vivo 10 data analysis software. Parents reported simultaneous feelings of relief and apprehension, changing relationships with their health care team and the experience of returning to a life following treatment. Results highlight the need for support for parents on completion of treatment.

Keywords

pediatric leukemia psychosocial parents

Introduction

Acute lymphoblastic leukemia (ALL) is the most common form of cancer in children younger than 15 years. Significant advances in treatment have increased 5-year survival rates to approximately 90% in children younger than 15 years and to 75% for adolescents aged 15 to 19 years (National Cancer Institute, 2014). This high rate of survival has altered the ways that children and their families perceive and adjust to their diagnosis (Grootenhuis & Last, 1997) leading to increased attention to the psychosocial impact of illness on the child and family both during and after treatment (Reinfjell, Lofstad, Nordahl, Vikan, & Diseth, 2009).

Parental functioning is understood to be a significant contributor to adjustment in pediatric patients with cancer and other chronic health issues (Drotar, 1997; Guion & Mrug, 2012; Hullmann et al., 2010; Kearney, Salley, & Muriel, 2015). Studies have found that the experience of the active treatment phase for ALL is exceedingly disturbing, stressful, and disruptive for families (Ljungman et al., 2016; McGrath, 2001) leading to the expectation that finishing treatment would bring with it feelings of happiness and relief. Indeed, studies have shown that several years after ending treatment, many parents adapt well (Ljungman et al., 2014; Wijnberg-Williams, Kamps, Klip, & Hoekstra-Weebers, 2006). Some parents have reported increased closeness and emotionally supportive relationships with family members following the experience of a child’s cancer diagnosis and treatment (Williams, McCarthy, Eyles, & Drew, 2013). However, other studies have shown that parents experience extreme anxiety, depression, fatigue, and loneliness after treatment ends (Ljungman et al., 2016; Reinfjell et al., 2009; Wakefield et al., 2011). Findings have been consistent across these studies, despite a wide range of time since diagnosis (younger than 5-12 years) and time since ending treatment (2-10 years).

There is growing evidence that anxiety and depression stem from fears associated with discovering new malignancies, recurrence of medical effects of the condition and its treatment (Best, Streisand, Catania, & Kazak, 2001; Ljungman et al., 2016). While understudied, the time immediately after the end of cancer treatment is considered to be a difficult and particularly anxiety producing time for patients and families. It is a period of high stress, which some have considered as a crisis period for families (Labay, Mayans, & Harris, 2004). Parents are often given the message that lives should return to normal; however, this minimizes the psychological distress that may surface (Labay et al., 2004). During this time, families are in the process of adjusting to uncertainties regarding reoccurrence and potential long-term effects (Maurice-Stam, Grootenhuis, Brons, Caron, & Last, 2007). As well, social and emotional support to families also tends to decrease (Stam, Grootenhuis, Brons, Caron, & Last, 2006). Two months after the completion of treatment is considered to be a time of particular vulnerability, where parents may experience a significant decrease in health-related quality of life and also experience feelings of loneliness, helplessness and uncertainty (Maurice-Stam et al., 2007; Stam et al., 2006). Furthermore, at this time parents are trying to renegotiate family and peer relationships and reestablish their roles as members of their community (Labay et al., 2004). Despite growing recognition of the emotional stress, uncertainty, vulnerability, and decrease in health-related quality of life for parents of children who have completed treatment for ALL, there exists a paucity of research about parents’ experiences during this time.

This article reflects findings from a qualitative study exploring the experiences of parents 2 months after their child has completed treatment for ALL. The research questions for this study were as follows: (a) What are the experiences, feelings, and emotional states of parents of pediatric cancer patients shortly after completion of cancer therapy? (b) What supports do parents receive during this time period? Do parents experience the need for additional supports at this time?

Materials and Methods

Qualitative methodology was employed in this study as it lends itself to discovering details about feelings, thought processes and emotions that are not otherwise obtained through quantitative methods (Strauss & Corbin, 1998). Specifically, interpretive description was utilized in this study as this approach is commonly employed in “smaller scale qualitative investigation of a clinical phenomenon” (Thorne, Reimer Kirkham, & O’Flynn-Magee, 2004) making it an appropriate fit for this study. In this small scale study, the phenomenon being studied was parental experiences 2 months after their child’s completion of treatment.

Participants

This study took place at a large urban Canadian tertiary pediatric cancer center and recruited parents of patients completing treatment for ALL. Inclusion criteria included parents and/or primary caregivers of children aged 1 to 18 years with a diagnosis of ALL, who were able to understand and speak English, and whose child had been treated according to current protocols for standard-risk ALL, high-risk ALL or T-cell ALL. Exclusion criteria included parents of a child with ALL who was receiving end-of-life care and parents who were identified as having preexisting serious mental health concerns.

Data Collection

Participants were purposefully recruited and approached in person by familiar staff at their child’s completion of treatment clinic appointment. Parents who expressed interest were contacted by telephone by a graduate-trained research coordinator who explained the study and obtained informed consent. Consented individuals participated in a semistructured interview, following McCracken’s (1998) well-established and in-depth interview method containing open-ended and semistructured questions. This process elicits rich description from the participants’ narratives. An iterative process informed minor modifications to the interview guide as data was collected and analyzed (Charmaz, 2006).

Data Analysis

All interviews were audio-taped and transcribed verbatim by an externally contracted transcriptionist. Interview transcripts were deidentified and analyzed using qualitative analysis methods and computer-based data management and analysis software, N-Vivo 10 (QSR International, 2012). Data analysis was conducted by a research team with both extensive qualitative research and clinical experience. The team consisted of 2 nurse practitioners, 3 senior social workers, and 1 research coordinator. Codes were assigned to the content of transcripts, and connections between codes were developed and continually expanded. Codes were constantly compared both within and across transcripts and were ultimately combined into categories and emergent themes. Rigor and methodological soundness were maintained throughout the analysis process in the following ways: (a) prolonged engagement—the research team had extensive experience working with parents of children with ALL; (b) negative case analysis—inconsistent cases relative to emerging themes were specifically sought out by the research team; (c) peer debriefing—transcripts were initially reviewed independently by team members and numerous formal and informal team discussions took place to discuss and examine emerging themes; (d) thick description—generated themes included rich descriptive accounts and direct participant quotes that illustrated contexts and circumstances of participants, findings, and interpretations; and (e) reflexivity and bracketing—bias within the research team was identified, discussed, and challenged (Corbin & Strauss, 2008; Creswell, 1998; Lincoln & Guba, 1985).

Results

The study sample comprised 17 parent participants representing 16 children, with 2 parents participating in one of the interviews. Fourteen mothers and 3 fathers participated, and their ages ranged from 32 to 47 years. The majority of participants indicated that they had a minimum of college education and that their primary income came from either their own employment or that both parents were employed. Children’s ages ranged from 2 to 13 years.

Study findings were organized into 3 primary categories: parents’ experience of juxtaposing emotions, a return to normalcy, and changes in the relationship with the health care team. Through the analysis of study data, the study team identified that a fear of relapse of their child’s leukemia permeated the majority of parents’ narratives, connecting all 3 primary themes.

Fear of Relapse

Fear of relapse was a primary concern for the majority of parents, underlying much of their descriptions about ending treatment. This fear was consistently present throughout parents’ narratives: “You don’t want to jinx yourself . . . there’s still 2½ years where, you know, there could be relapse, there could be this, and it’s scary.” This looming fear existed across all 3 thematic categories and is illustrated below.

Juxtaposing Emotions

A predominant theme found throughout parent interviews was the experience of juxtaposing emotions. Parents reported happiness, elation, relief, and gratefulness, while simultaneously feeling anticlimactic, hyper vigilant, fearful, guilty, uncertain, and lost. These contrasting emotions were reported at the immediate end of their child’s treatment as well as 2 months later. These emotions were prevalent throughout parents’ descriptions of their experiences completing treatment. The experience of feeling unexpectedly anticlimactic at the end of treatment is illustrated in a description provided by one parent:

. . . the turmoil and . . . the complete whirlwind and the earthquake that . . . shattered our lives . . . and then, you just take this little pill, like that’s it, that’s done? OK. Like it’s just so kind of anticlimactic.

This parent reported simultaneous feelings of anxiety and relief 2 months after treatment:

. . . You know, I am breathing a little bit better . . . but I’m still, you know, I’m still very anxious, I would say. And not that I don’t trust that everything happened but you know, like I say, I don’t, I believe that he won’t relapse . . . but you don’t want to miss the signs.

In addition to feelings of relief and anxiety, this parent expressed feelings of uncertainty and hesitancy regarding the potential for relapse in her child. For this reason, she remains alert to signs that would signify a relapse.

Another parent mirrored these sentiments, at one point stating: “. . . I’m feeling a little better, like when you see your child getting better . . . It helps,” while later noting:

I feel like if I keep him on guard . . . we’re not out of the woods, we’ve still gotta watch him . . . he’s gotta eat better, he’s gotta sleep, his energy needs to stay high, you know, then we’ll be fine. If I go oh yeah, we’re fine, everything’s fine, then I feel like that’s a relapse waiting to happen.

This parent described feeling “better,” however still feeling the need remain cautious and attuned to potential signs of relapse.

Some parents predicted that feelings of fear will always have a place in the background of their minds, even if they coexist with more positive feelings:

. . . as a parent, I don’t think you’re ever going to be OK . . . there’s a part of you that’s always going to be scared . . . people think about it less and less, but it’s still always in the back of your mind . . . I always try to be, not happy 100%, but just be a little bit 1%, be reserved . . . if he says something, oh I feel tired I’m gonna be a bit worried.

Feelings of happiness along with worry signify an everpresent fear of relapse among parents.

Return to Normalcy

The theme of returning to “normal” following the end of their child’s treatment was experienced in a variety of ways among the parents, with a range of definitions of what “normal” meant for them. Some spoke of a return to a similar life to what existed prior to their child’s treatment. Some parents spoke of a “new normal” that included issues that did not exist in their lives before their child’s cancer diagnosis. Other conceptualizations of a “new normal” included new perspectives on life that had developed after experiences with their child’s cancer.

One parent described the experience of returning to “normalcy” following treatment:

Getting your life back, it’s like coming up for air after being held underwater for so long . . . you just come to that knowledge that you’ve put in a lot of hard work for the past 2½ years and now you look forward to . . . gaining back some of your normal life.

Another parent spoke about their own anxiety as being repressed and not readily apparent during the child’s active treatment. This may have been experienced as a shift in what was “normal” for this parent during the child’s treatment: “I’m prone to anxiety attacks . . . while (child) was going through treatment, I didn’t have any anxiety attacks . . . it happened before and then they started up again.” Parents also spoke about entering a new normal, as explained by one parent: “. . . we are like programmed . . . no, you can’t do that. Do this, you can’t do that . . . now it’s like, a whole new world.” This parent also described shifting her parenting focus to issues of adjusting to posttreatment life: “. . . now that she’s off treatment . . . she feels better, she has 10 times more energy, but all of a sudden you’re having to step up like the discipline . . . so it’s kind of new challenges.”

Parents also spoke about developing a new perspective on life:

It gives you a whole new perspective on life . . . unless, you know you have a close family member or a friend or anything like that, who’s gone through this and you’ve seen the steps that they’ve had to take, to get from your darkest moment to your brightest moment . . . life has just got this whole new meaning.

Hanging over parents’ narratives of entering a new normal, seems to be a shadow of a fear of relapse and an adjustment to life with this omnipresent fear.

Relationship With the Health Care Team

Some parents spoke about the change in relationship with their health care team once treatment ceased. A number of parents felt that support continued to be available, whereas others felt that the continued support they needed was not necessarily able to be accessed. Some felt end of treatment questions went unanswered and that support ended abruptly. Some parents were conflicted in their feelings, as they did not want their desire for continued support to limit care delivery to families just beginning or in the middle of their child’s treatment.

One parent spoke of feeling continually supported by her health care team:

The hospital staff is still there for you, the nurses are still there for you, your clinic nurses are still there for you . . . whenever there’s a fear or something . . . you can always contact them and they’ll always take that time to sit down with you and talk to you . . .

Another parent spoke about the change in relationship with the health care team:

So this might sound weird but maybe it felt like, you know, we were special . . . because of the circumstances, and so maybe the notion of, you’re not special anymore, (child)’s not going to be you know, rushed to the front of the line if she gets a cold; like here’s a phone number to call anytime, night or day, if (child) gets a fever. You know, it’s those things . . .

Parents also reported feeling disappointed, having unanswered questions when their child’s treatment ended, particularly from their health care teams:

I expected to get more information about what’s gonna happen at that appointment [after treatment appointment] but we were a little bit . . . disappointed that we don’t get much…cause the doctor thinks it’s OK, so it’s very normal, it’s very easy, off is off . . . I wanted to know what gonna happen, if there’s a relapse, are we gonna see, what symptoms are we gonna looking for, so sort of questions me and my husband, we prepare a lot of questions for that appointment but, it wasn’t really, got most of them answered . . . We were disappointed.

Another parent explained the feelings of her husband at the end of treatment, specifically feeling lost with lack of direction:

it’s like you’ve been in jail for a long time and you get out of jail, and you’re kind of like, you don’t know where to go, what to do, and you know . . . And it’s that feeling of, you know, what can I do? Like, where am I going? Lost, feeling . . .

She later described her own need for direction as well: “. . . you’re getting out of jail and you’re let go and . . . you’re wandering around . . . If someone would just lead you a bit.”

Some parents expressed that treatment ended very abruptly: “You stop treatment cold turkey, it’s weird”; “There’s a general sense that, you know, you take that last little pill and boom, yeah, it’s all good now, right?”; “I would say we were advised enough but it still felt like, you know, being thrown out of the nest a bit, like you know, a sink or swim feeling?” Parents also spoke of both desiring support but not wanting to take staff away from families who may just be beginning their treatment journey:

Sometimes it’s not like the cancer that’s forefront, it’s some other issue that it’s related to, it’s the side effects and the impacts and the life that you now have, but . . . you know how thinly spread everybody is, you don’t want to take away that person from somebody who’s just started.

The data highlights parents’ perceptions of unmet needs following the end of their child’s treatment, including a gap in provision of guidance, information and support from their health care team as they transition off active treatment. The theme of desire for continued connection with the health care team was evident through many parent narratives, yet again appears to be associated with a persistent fear of relapse for parents.

Discussion

While literature is expansive related to the long-term impacts of cancer treatment on patients and their families, much less is known about the time immediately following the end of treatment. In particular, the experience of parents of children finishing leukemia treatment remains relatively unexplored. The completion of treatment and the accompanying posttreatment phase may signify relief, joy and freedom for patients and their parents while also representing a time of uncertainty and fear. This study aimed to understand these experiences during a specific time period for families: 2 months after the completion of a child’s treatment for ALL. Findings from this study align with findings from related research about experiences at the time of cancer treatment completion and during the following months and years, for both parents and patients from adult and pediatric populations. The experiences of parents in this study are also similar to those of children, adolescents and adults found in other research (Arnold, 1999; Björk, Nordström, Wiebe, & Hallström, 2011; Haase & Rostad, 1994; Hobbie et al., 2010; Jackson, Scheid, & Rolnick, 2013; McKenzie & Curle, 2012; Norberg & Green, 2007; Norberg & Steneby, 2009).

The majority of participants in our sample indicated that the time between their child’s completion of treatment and 2 months after was filled with mixed emotions. Many parents in our study expressed juxtaposing feelings of elation, gratefulness, and happiness while simultaneously expressing fear, guilt, and uncertainty on their child’s completion of treatment. These contrasting emotions appeared to grow out of a pervasive fear of relapse, mirroring previous research on ending cancer treatment (Arnold, 1999). In fact, Arnold (1999) found that ending treatment may be considered a time of true crisis. Fears related to relapse, negative effects from treatment, no longer feeling that one is proactively fighting cancer and feeling unprepared and uncertain during this abrupt transition are experiences that individuals and families have described in the post treatment phase (Arnold, 1999; Björk et al., 2011; Hobbie et al., 2010; Mckenzie & Curle, 2012; Norberg & Green, 2007; Norberg, Lindblad, & Boman, 2005; Parry, Morningstar, Kendall, & Coleman, 2010; Rivero-Vergne, Berrios, & Romero, 2010). Parents in Mckenzie and Curle’s (2012) study described being “in limbo” (p. 650) and feeling as if the end of treatment was not the true end to their family’s cancer journey. They felt the need to manage the unknown, while facing an increased sense of hypervigilance toward their children and feeling abandoned in coping with their mixed emotions. This fear of recurrence in the posttreatment phase is among the most prevalent concerns for those completing treatment (Simard et al., 2013). This fear extends to families of children completing treatment, as they, too, are left feeling uncertain as they navigate “uncharted territory” (Björk et al., 2011, p. 167).

Like those in our sample, Mckenzie and Curle’s (2012) participants reported a range of mixed emotions that oscillated between feelings of normalcy and feeling that cancer will never fully disappear. Parents’ contrasting emotions were described as having a “fluidity” (p. 651) by which parents moved between these extremes, again echoing the narratives of parents in our study. Conflicting sentiments have also been found in research focused on children and adolescents as they complete treatment. Haase and Rostad (1994) described children as having, “two faces-one of celebration and hope, and one of uncertainty and fear” (p. 1490) when completing treatment. Children were happy and grateful to have completed treatment, while also experiencing fears of relapse that were consistently present in some form. Adolescents in Duffey-Lind et al.’s (2006) study reported similar emotions ranging from elation to abandonment after treatment. This “balancing act” of simultaneous feelings of relief, happiness along with fear and uncertainty that is illustrated in the narratives of participants in this study as well as those in similar research, points to the precarious nature of this transitional period.

Some parents in our sample shared that the relationship with their health care teams changed at the end of their child’s treatment. The period of active treatment is a vulnerable and challenging time for the entire family unit, and parents may rely heavily on the support of their health care teams for guidance and support. When treatment ends, parents may experience loss, anxiety, a greater burden of responsibility for the child’s care and a desire to remain connected to their medical team (Hobbie et al., 2010; Labay et al., 2004; Rivero-Vergne et al., 2010). Participants in our sample who struggled with this shift experienced an abrupt and “cold turkey” end to familiar routines and support from the team. This was particularly evident to some parents when reflecting on the greater degree of support from medical teams received at the start of treatment, a finding also represented in previous research (Parry et al., 2010). Parents may feel contradicting feelings about the decrease in the health care team’s involvement in their child’s care and may be faced with managing and balancing these feelings (Parry et al., 2010). Some parents in our sample reported feeling lost, unsupported, and unprepared to independently care for their child. Adult leukemia and lymphoma survivors have reported similar feelings of abandonment, loss of a “safety net” (Arnold, 1999, p. 21), feeling unsupported and unprepared at the end of treatment, and having difficulty managing the loss of relationship with the health care team (Arnold, 1999; Parry et al., 2010). Children completing cancer treatment have also expressed a desire to maintain a relationship with their health care team, while simultaneously acknowledging that the relationship was changed (Haase & Rostad, 1994). Again, this desire for continued support from health care teams implies a hesitancy to move forward without the reassuring support and medical expertise of the team.

Parents also spoke of their experience with “normalcy” in the months following the end of cancer treatment. Some spoke of hoping to return to their previous lives, and some acknowledged the existence of a new normal with new issues to face and new perspectives on life, echoing similar research on re-entering and adapting to life after cancer treatment (Arnold, 1999; Björk et al., 2011; Haase & Rostad, 1994; Norberg & Green, 2007; Norberg & Steneby, 2009; Patterson, McDonald, Zebrack, & Medlow, 2015). For instance, Björk et al. (2011) indicated that families were “returning to a changed ordinary life” (p. 165). Similarly, Duran (2013) related the concept of posttraumatic growth to those who have had childhood cancer and their family members, with individuals developing greater appreciation and a new perspective on life stemming from their traumatic experiences with cancer and treatment. Parents in our sample reported changes in their own focus, changes in family dynamics, and changes through returning to daily activities previously put on hold while the child was in treatment. The transition to posttreatment life is not necessarily seamless for all families, and involves managing new uncertainties more independently. Supporting families in adapting to these new circumstances is an area of need for health care teams to pay attention to and to address.

Research has connected parents’ assessments of their child’s health to parental well-being, thus demonstrating the need to continually support parents into the posttreatment phase and throughout subsequent life changes (Svavarsdottir, 2005). Hobbie et al. (2010) advised that health care teams consider parental anxiety and fear of relapse when developing educational interventions for families with a child completing treatment. Teams should be attuned to the nature of parents’ concerns, whether they are related to current or past issues, and this should guide their intervention protocols (Norberg et al., 2005). This is particularly critical as parental stress has been shown to affect the long-term daily functioning of children who have had cancer (Hile, Erickson, Agee, Annett, 2014). Furthermore, symptoms of posttraumatic stress in parents may exist well into the posttreatment phase with 17% of participants in Norberg et al.’s (2005) study experiencing symptoms of intrusive thoughts and images once their children had completed treatment. Hall, D’Este, Tzelepis, Lynagh, and Sanson-Fisher (2014) noted the importance of providers identifying cancer survivors who may be at risk of experiencing unmet needs once cancer treatment has ended; it is equally important for parents of children completing treatment to be identified and accommodated as well.

Limitations

This study occurred within a large, urban pediatric cancer center and therefore may not be representative of the experiences of parents with a child receiving cancer treatment in smaller or rural health care settings. In addition, it may have been beneficial for participants to be interviewed at later dates in order to gain a deeper understanding of the precise needs of parents 2 months posttreatment in comparison with their needs at other phases. Participation in this study was limited to English speaking parents, thus excluding the experiences of non-English speaking participants. This study focused on parents’ experiences as a whole and not on the impact of children’s individual ages or specific family characteristics. An area of further research may explore the impact of child’s age or certain family characteristics on parental experience at the end of a child’s treatment for ALL.

Implications for Practice

Treatment for pediatric ALL involves intensive therapy lasting 2½ to 3½ years. Due to current rising survival rates of pediatric ALL, the majority of patients will complete therapy and transition to a post therapy period. This has been described by family members as a difficult time of transition with a looming threat of recurrence of disease hanging over. The results of this study have highlighted that parents of children completing treatment for ALL often have mixed and complex emotional responses that can fluctuate, be inconsistent, and variable among families. Health care providers could benefit from understanding variations in parental response, not only during a child’s active treatment phase (Kearney et al., 2015) but at the end of treatment as well.

While not described in detail during analysis, parents spoke of a desire for increased posttreatment information in the form of booklets, pamphlets, or “Frequently Asked Questions.” Literature discusses initiatives including Cancer Survivorship Plans (Hewitt, Greenfield, & Stovall, 2006; Jackson et al., 2013; Stricker & O’Brien, 2014) and the Passport for Care targeting children who have completed cancer treatment (Poplack et al., 2014). The Institute of Medicine recommends that Cancer Survivorship Plans s include a summary of an individual’s diagnosis and treatment, a clear plan for follow-up and referrals and resources for support (Hewitt et al., 2006; Jackson et al., 2013; Stricker & O’Brien, 2014). Similar models of posttreatment support would be beneficial for parents of children completing treatment and similarly relevant to this current population of parents of children completing cancer treatment.

An initial step for providers is to recognize parents’ supportive needs at the end of their child’s treatment given the complex nature of this time period. Assessment of potentially vulnerable parents may involve collaboration with mental health members of the professional team to identify parents that may be at risk for issues with adaptation and coping posttreatment and proactively provide support and psychoeducation. For example, Duran (2011) piloted the Parental Worry and Attitudes Toward Childhood Cancer scale to measure parents’ concerns about recurrence of their child’s cancer with the ultimate goal of intervention development for parents in need. Proactive strategies to avert distress may include staff discussions with parents about what to expect emotionally after active treatment ends and psychoeducation sessions to support parents in their transition. As noted by one parent, “They almost need to sit down and say OK, welcome to your new life again.”

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors gratefully acknowledge funding support from the Garron Family Comprehensive Cancer Centre.

Author Biographies

Barbara Muskat is the Director of Social Work at the Hospital for Sick Children. She is also an Assistant Professor, status only, at the Factor-Inwentash Faculty of Social Work, University of Toronto. Barbara has also maintained a clinical practice for many years.

Heather Jones is a Paediatric Nurse Practitioner with the Leukemia/Lymphoma Section in the Division of Haematology/Oncology. Heather’s clinical focus is on supportive care and symptom management, as well as providing collaborative care to children and families coping with the devastating diagnosis of a malignant disease.

Sonia Lucchetta is senior social worker with the Leukemia/Lymphoma and Stem Cell Transplantation Program in the Division of Haematology/Oncology. Sonia’s clinical focus is on providing family centred care to children diagnosed with cancer and their families within an interdisciplinary framework.

Wendy Shama has been a social worker in the Leukemia/Lymphoma program at SickKids for the past 23 years. She maintains a large clinical caseload as well as being actively involved in training Master students, running programs, presenting at national and international conferences and research.

Sue Zupanec completed her Masters in Nursing, Nurse Practitioner-Pediatrics at the University of Toronto. Sue has worked as a Nurse Practitioner in the ambulatory Leukemia/Lymphoma Program since 2001.

Andrea Greenblatt is a Clinical Research Project Coordinator in the Department of Social Work at the Hospital for Sick Children and is currently working towards obtaining her PhD at the Factor-Inwentash Faculty of Social Work, University of Toronto.

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