Support Care Cancer (2002) 10:146–155 DOI 10.1007/s00520-001-0319-y

Pam McGrath Lydia Pitcher

Published online: 16 November 2001 © Springer-Verlag 2001

P. McGrath Leukaemia Foundation’s Psycho-social Research Program, Studies in Religion, School of History, Philosophy, Religion and Classics, University of Queensland, St Lucia Q 4072, Australia L. Pitcher Department of Haematology/Oncology, Ward 27B, Starship Children’s Hospital, Park Road, Private Bag 92024, Auckland 1, New Zealand

O R I G I N A L A RT I C L E

‘Enough is enough’: qualitative findings on the impact of dexamethasone during reinduction/consolidation for paediatric acute lymphoblastic leukaemia

Abstract The results of a longitudinal study conducted with children undergoing treatment for acute lymphoblastic leukaemia (ALL) and their families in Brisbane, Australia, indicate that the emotional impact of one of the protocol drugs, dexamethasone, is acutely distressing. The findings presented cover the second interviews with the parents and children of the first 11 ALL families to have completed the re-consolidation stage of treatment. The results indicate that the negative impact of this drug is particularly severe during the reconsolidation stage, when families are exhausted with coping with the intensity of treatment. Thus, the administration of dexamethasone is a critical point in the pathway of care for children with ALL. The emotion-

Introduction Now that long-term survival of children with acute lymphoblastic leukaemia (ALL) has become a reality, questions of quality of life and the psychological effects of the disease and its treatments have grown in importance [1, 2]. The long and invasive protocols for treatment for ALL are recognised as highly stressful for both parents and children [3, 4]. In fact, it is now known that the experience of treatment for ALL is seen as so stressful that it places the child at a greater risk for developing psychiatric morbidity than children with minor physical diseases [5]. By way of example, post-traumatic stress is now recorded as a significant psychosocial sequela of such prolonged, aggressive and high-tech treatments in childhood

al consequences of the drug are profoundly disturbing, not only for the child, but for the whole family. The findings indicate that the period when dexamethasone is being administered is an important time for providing families with emotional support and information about likely sequelae of treatment. Because of guilt and self-doubt parents will not necessarily seek help, even if it is greatly needed. Recommendations are provided as to possible ways of reducing the distressing impact of the administration of this pharmaceutical intervention. Keywords Acute lymphoblastic leukaemia · Dexamethasone · Support · Paediatrics · Psychosocial oncology

[6, 7]. Research indicates that the child patient’s appraisal of treatment intensity significantly correlates with the severity of post-traumatic stress symptoms [8]. The degree to which the child experiences treatment as “hard” can be predictive of the persistence of later post-traumatic stress symptoms [9]. The child patient’s parents are also recorded as having a much higher incidence of posttraumatic stress after ALL treatment than persons in the general population [10, 11]. Thus, it can be seen that difficult experiences during treatment can have long-term effects. In order to begin to ameliorate the psychosocial stress of treatment, detailed knowledge is required to indicate which interventions are experienced as most distressing for both the child and their parents. The results of a longitudinal study presently in progress with children un-

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dergoing treatment for ALL and their families in Brisbane, Australia, indicates that the emotional impact of one of the protocol drugs, dexamethasone, is described by parents of ALL children to be acutely distressing. The negative impact of this drug is particularly severe during the reconsolidation stage, when families are exhausted by coping with the intensity of treatment. The hope and expectation is that the information presented from the findings on the emotional impact of dexamethasone will go some way to deepening our understanding of the most stressful aspects of treatment. Recommendations are provided as to possible ways of reducing the distressing impact of the administration of this pharmaceutical intervention.

Use of dexamethasone in the treatment of childhood ALL Corticosteroid administration has been a fundamental component of therapy for childhood lymphoblastic leukaemia for several decades, since the initial application of corticosteroids in this context in the mid-1960s. The response of lymphoblasts to corticosteroids has emerged as a powerful prognostic [12] tool as well as a therapeutic tool for this leukaemia. Both in vivo and in vitro, the cytotoxic activity of corticosteroids correlates with the remission induction and disease-free survival [13]. Steroid responsiveness appears to depend on the concentration and function of cytoplasmic glucocorticoid receptors [14], which, when bound, result in apoptosis or programmed cell death. The sensitivity of lymphoblasts to dexamethasone has also been shown to correlate with the expression of cellular regulators of apoptosis, including bcl-2 and Bax alpha [15], and can be predictive of the chemosensitivity to other non-cross-resistant agents. Despite a good understanding of the mechanism of action of steroids, and their extensive clinical use in childhood ALL, controversy remains as to the optimal agent, dosage and schedule of corticosteroid. Dexamethasone has more potent corticosteroid (7×) and cytotoxic (6–16×) activity than equivalent dosages of prednisone [16]. In an attempt to establish whether this translates to superior disease-free and overall survival, the comparison of these two agents became the focus during the mid- to late 1990s of national ALL trials (including American, German and English groups). Retrospective comparative studies suggest that despite an increase in infective deaths with dexamethasone, superior outcome is still achieved [17, 18].

The research The material in this article has been gathered from the second stage of a longitudinal study looking at the psycho-social issues

associated with the treatment of paediatric ALL and associated haematological disorders. The Royal Children’s Hospital Foundation (1 year) and the Financial Markets Foundation for Children (4 years) have jointly funded the study. The multi-disciplinary study is conducted by a psycho-social researcher at the University of Queensland in association with research clinicians from the Paediatric Haematology and Oncology Unit of the Royal Children’s Hospital (RCH) and the Mater Children’s Hospital (MCH), Brisbane, Australia. The study is an exploration of the experience of treatment for paediatric ALL and related haematological disorders from the perspective of the sick children, their parents and their well siblings. Ethical consent to conduct the study was obtained from the University Ethics Committee and the RCH and MCH ethics committees. Participants were orally informed of their rights in research, and written consent was obtained for participation in the research. Methodology The experience of treatment for ALL is documented through qualitative research using open-ended interviews with the child patients, their parents and well siblings at key points in the treatment trajectory. There are five points of contact within the treatment protocol for the ALL children (T1 – End of Induction Remission; T2 – End of Reconsolidation; T3 – Continuation Therapy; T4 – End of Treatment Assessment; T5 – Post Treatment). The research is accruing consecutive patients, aged from birth to 16 years, who have been diagnosed with ALL or related haematological malignancies enrolled at the Banksia Ward at the Royal Children’s Hospital (RCH) and the Oncology/Haematology ward at Mater Children’s Hospital. During the initial stage of treatment the parents and siblings of these children were approached with regard to participation in the research. Most agreed to participate, and the response rate to date is 97.5%. Qualitative analysis is based on the principle of saturation of data, that is, common or reliable themes emerge when a number of participants say the same thing [19]. By the third or fourth interview it became obvious that parents were reporting very similar issues. However, as this was a longitudinal study the opportunity was afforded of following up consecutive enrolments over the first year (n=11) to affirm the original themes. Consequently, at the point of the eleventh interview a high level of confidence had been achieved as to the importance and relevance of the following issues to the families involved. The findings presented here cover the second interviews with the parents and children of the first 11 ALL families to complete the reconsolidation stage of treatment. The interviews with the parents were conducted by a psychosocial researcher with a counselling background and many years’ experience of working with families coping with a member with a haematological malignancy. The time and location of the interviews were of the participants’ choosing. The interviews were open-ended and focused on the experience of treatment as it impacted on all family members. Participants were each encouraged to tell their story from the point of pre-diagnostic symptomatology up to the present experience with treatment. The interviews were audio-recorded and transcribed verbatim. The language texts were then entered into the NUD*IST computer program and analysed thematically. A phenomenological approach was taken to the recording and analysis of the data. The aim of phenomenology is to describe particular phenomena, or the appearance of things, as lived experience [20]. The process is inductive and descriptive and seeks to record experiences from the viewpoint of the individual who had them without imposing a specific theoretical or conceptual framework on the study prior to collecting data [19, 20]. All of the participants’ comments were coded into free nodes, which were then organised under thematic headings. The principal investigator for the research project, who

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is an experienced qualitative researcher, developed the coding. The 43 free nodes related directly to the issue of the experience with dexamethasone during re-induction/consolidation are presented here. There free nodes include side effects of re-induction/consolidation, child patient’s emotions and behaviour, parents’ emotions due to side effects in child, lack of choice, history data, impact of treatment on sibling(s), dexamethasone, aggressive behaviour, coping strategies, depression, anti-depressants, relationship with partner, normalisation, difficulty of long journey, physical demands of caring for child, enough is enough, parent seeking advice or assistance, and support network of similar parents. Demographics All but 1 of the patients were from two-parent families;11 mothers and 5 fathers were interviewed. The age range of the parents was 27–45 years. With the exception of 2, all parents had other dependants (four other dependants, n=1; three other dependant, n=3; two other dependants, n=1; one other dependant, n=4), who ranged in age from newborn to 20 years. The majority (72.7%) of families had one or both of the partners in full-time employment (father full-time, n=7; mother full-time, n=3). Of the 3 mothers who were employed in full-time jobs, 2 had recently resumed their work duties as they had previously given up their jobs due to the demands of the treatment protocol; 4 mothers had also recently resumed their part-time positions. One parent was on a sole-parent pension, and 1 father who was employed full-time gave up his position to assist with the demands of the treatment protocol and the birth of the couple’s fifth child. Six of the families (54.5%) had to relocate from their home town to the metropolitan area for treatment. The 11 child patients ranged in age from 18 months to 11 years. There was a fairly even gender spread (5 girls, 6 boys). All 11 children were diagnosed with ALL, and 1 child was diagnosed with infantile ALL. The majority of the children (n=10) were on the ANZ CCSG VII protocol and 1 was on the MRC UKALL Infant 1 protocol. Seven of the children were classified as at standard risk, while 4 were classified as at high risk.

Findings During the interviews many participants referred to dexamethasone as ‘the dex’, and this term has been retained in the language texts. Emotional Impact of Dexamethasone Although there was mention of the physical side effects from dexamethasone, such as nausea, vomiting, lethargy, weight gain, and excessive eating, the parents spoke predominantly about the distressing emotional side effects. As one parent noted, “The drugs actually physically have an effect on their emotions.” Significant amongst these were report on the child’s aggressive moods/behaviours, an example of which is, He hurts his brothers and he has gone through a stage of hurting himself, his father and myself. Like nasty biting me on the thigh if I am at the sink because he is frustrated. He is either ripping a handful of hair out.... Hitting him on the back...

even goes and attacks the eldest child. His father’s arm was bruised really badly from like the shoulder down to the elbow. Most of that is covered in a long thin bruise where he’s constantly been beaten by him. The predominant descriptive used was ‘aggressive’, though parents also used words such as ‘foul mood’, ‘awful’, ‘horrible’, ‘cranky’, or ‘out of control’. Parents noted that the aggressive and dramatic change in the children’s behaviour came about in a short period of time, You know, like morning [the child] was this lovely little child [laugh]. And by the afternoon, Holy! Yeah! [The child] was just, yeah, dreadful! The children were described as being in a very demanding, dependent, frightened and confused emotional state, where they would scream for hours out of frustration, for example, Screaming and wanting our attention... there is very little happiness on his behalf. He’s so out of whack, he’s so confused and frightened. And he’s just like a mixed up jigsaw puzzle that hasn’t got all the pieces there. Parents indicated that they found the behaviour very sad to watch as they could see the child’s lack of control of the situation, making statements such as, “He’s just pathetic. And it’s very sad,” or, “I found it extremely sad to watch this poor child so frustrated within himself.” There were also indications that the children themselves were aware of their out of control behaviour, for example: He knew he was doing it because he said to my friend, “I’m not a very nice brother. Sometimes I be mean to her [sometimes I am mean to my sister].” The demanding and aggressive state was exacerbated for the parents by the fact that the children did not sleep because of the constant hunger keeping them awake at night, for example: And [the child] hasn’t slept either. ’Cause, you know, they get really hungry and wake you up like five times a night. Typically parents reported only getting about an hour and a half of sleep at night, waking as many as five times a night. We were only getting about an hour and a half of sleep a night. Stayed up all night with the child. One minute he wants his father and was sort of hitting me and bashing his head... Um, he wasn’t sleeping during the day. He was in a lot of pain. He was anxious and was just up and down all night.

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For some children this aggressive hyper-arousal was associated with incessant talking, usually about food or eating: You have no idea how he could talk... Ohhh, incessantly, non-stop, the whole time... all about food. That is all he would speak about.... He was making it up. It was almost like he was... I was worried that he was kind of like hallucinating. Like it’d be at 1 and 2 o’clock in the morning. He’d be talking about what he could have for breakfast. And he would make up big stories, like one time he wanted to go to the desert. And he wanted... this story just kept progressing. You could see the mind ticking over. By the end of the story he was riding on back of snakes in the desert.... so yeah, it was just incredible. The children appeared obsessed with food, as they not only talked incessantly about it but spent a great deal of time eating, which in turn caused emotional problems because of body changes. It’s eating from being on these tablets, and see that was hard for her. She’s on a diet at the moment. The children were reported to not be able to concentrate or focus on a task (with the exception of eating): Just no motivation, no concentration. Doesn’t know what he wants to do. Very um, just not with it. Just not with it. Just couldn’t concentrate and [pause] only wants to eat. That’s the prime objective. The children were also described as experiencing depression or depressive symptoms, associated with lethargy, as a result of the drug. Parents described the children on dexamethasone as being ‘mostly tired’, ‘down in the dumps’, not wanting to do anything including not wanting to go to school, lacking the energy for or interest in previous pursuits, and thus, just lying around doing nothing all day, for example: [The child] is mostly tired. And at home actually feeling pretty down and depressed.... Just no motivation, no concentration, doesn’t know what [...] wants to do. Yeah, it is like frustration, doesn’t know what to do.... Just sort of displace[d] anger. Um, um, would just curl up and cuddle the pillow. And she was lying down in the bedroom and she didn’t want to move. She wanted me to be with her. Sometimes she didn’t want anyone around her but she wanted me to be with her.... She stayed like that for probably another 2 weeks after that when she was on Dex. The child’s changed physically appearance contributed to the depressed state:

She had so much change in her appearance. She got very depressed with it. She’d look at herself in the mirror and say, “Well who am I?” Some of the children responded to the depressed state by sleeping a lot of the day: [The child] just slept for 2 weeks. I just could not wake [the child] up... would not get off the couch. [The child] would eat and then just go back to sleep. So there was 2 weeks of sleeping before we even knew there was a problem. Parents noted that the younger children regressed in their development, with toddlers starting to no longer walk or needing feeding whereas previously they had been eating independently. Parents reported that because of the aggressive/depressive state their children were emotionally withdrawn and distant and would not communicate as they had previously. Typical descriptions were that the child ‘doesn’t talk’, ‘wouldn’t speak’, or ‘just says nothing’, for example: Doesn’t act like her. She’s very angry, very aggressive and she just doesn’t speak. She hasn’t been speaking, she just says nothing. She sits down and doesn’t want to know you, she doesn’t want to speak to you. I mean she can go whole days without speaking to me at all. It’s weird. Yeah, if I pestered her and kept on at her to speak to me, she’d just probably hit me, lash out at me and say “go away!”. You know and scream loudly.. Oh! It’s terrible. For some parents their child was almost a void. Parents explained that it felt as if the child was ‘just gone’, as if the drug ‘just takes the child way’, or as if, ‘no one is there.’ Parents reported being frightened by the sense that the child had ‘started to lose their spirit’, and reported thinking, ‘if we lose this there is nothing left.’ As one parent stated, It was really frightening because I thought we’d lost her. You know, she’d gone. And um, obviously it isn’t, it’s just dexamethasone. The seriousness of this state was associated with a sense of dying: And um, she was depressed the whole time. She was down, she was losing weight... it was like she was dying (in a whispered voice). [The child] wanted to die... she didn’t think she was actually dying, she just wanted to go.... she just wanted to die because she didn’t like being the way she was. [Interviewer: You mean she was so sick of it all that she wished she could die?] Yep, that’s right. Such a state is very difficult for parents to endure and challenges their sense of hope:

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Your hopes actually hit rock bottom when they are like that. I just used to get this feeling of a holocaust victim.

Predictable pattern The parents were quite clear in expressing their observation that the emotional behaviour was clearly drug related because of the predictable pattern: [The child] has 5 days every month at the moment. So today is day 5 of another stint of dexamethasone. Oh we can see, you can tell. If you drew a graph you can see exactly when she’s taking it. And then when it hits, it definitely affects their character. Ah, nearly damn instantly, I think. A bit amazing. The effect of the dexamethasone was seen to reverse soon after the child was no longer taking the drug: You know eventually as soon as you got off the old Dex [things would settle down]. And yes, it subsided when the tablets had obviously gotten out of [the child’s] system again. Harder than the first It was noted that the re-induction/consolidation phase was much harder to experience and cope with then the first stage of treatment. This stage was described in terms such as ‘just horrendous’, ‘the worst’, ‘the hardest phase’, ‘really hard’, ‘just dreadful’, ‘as bad as if not worse than induction’, or ‘the strongest treatment dealt with’. As one parent stated: You know, I would say [the child] would have been at his worst that I’ve seen.

child’s] body is saying, “look don’t give me any more. I’ve had enough.”’ Parents indicated that their children were also expressing clear messages that they were exhausted with coping with the ordeal, that ‘enough is enough’: [The child] kept coming up with “Didn’t want to have leukaemia any more.” This is what happens in re-induction.... And [the child] said, “When am I ever gonna feel better again?” [The child] had never said that since the day we got to the hospital. Exhausted from the first induction Part of the reason for the feeling of exhaustion was the ‘burn out’ from already having had to deal, physically and emotionally, with the first stage of treatment. It is like, you know, we’ve done this and I’ve had all this go wrong. But enough’s enough. [The child] is just sort of feeling exactly the same thing.... So, you know, I think you can adapt to the leukaemia but the, it is all the rest of the stuff that I’m finding harder. It was noted that the child was weaker in health because of induction and more at risk of losing their ‘spirit’. Also, the second time around parents were more aware of the difficulty they would have to endure: You actually do know what it is like. Which is worse. Ignorance is bliss. And you already had all the previous experience. And then there was a gap between the two and you sort of feel... well that is good we’ll never have to go through that again. But then you go through something that’s almost the same. And it went on for a longer period of time than induction. Other complications of/with dexamethasone

Coping exhaustion – enough is enough Statements were made to indicate that both the parents and children were being pushed beyond their threshold of coping: The only thing is, I’m getting to the stage that I just think for [the child] enough is enough.... I just think enough is enough. Like how much more has this kid got to go through, you know. And every week you’ve got to deal with something more, and something more. And, you’re watching them go through and suffering all the extra things. Like going through re-induction [the child] was not well. And I used to think, ‘Oh gosh, [the

There were ample reports of other complications associated with dexamethasone or of other conditions that the parents and the children had to cope with during this period which significantly added to the stress of the situation, for example insulin-dependent diabetes. Examples of the other side effects the children were coping with include, [The child] was as sick as a dog. She had a blood infection, ended up with chickenpox. She developed ulcers in her mouth, which extended right through to her rectum and anus. So that she couldn’t even do a bowel motion without.... She got a fungal infection all over her back and body. It was abysmal.

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It was the bone pain that was concerning because nothing was relieving it. You know we’d give [the child] morphine and you know, before the 6 hours were up [the child] would be screaming. You know, “Take this pain away!” And [the child] couldn’t walk. This was exacerbated by the reactions to other drugs administered during re-induction, for example: Dry retches and vomits after it initially. [The child] gets temps. from the ARA-C. I mean [the child] gets a lot of bone pain from the vincristine. Parental reactions The stress of coping with this stage in treatment is considerable. Parents spoke about their ‘own little panic attacks’ or the fact that they ‘did start to lose the plot.’ As one parent stated: We must have reached that absolute peak where she was absolutely terrible. She couldn’t bear herself and we couldn’t bear her. All of the parents talked about how they had little choice but to try to keep positive and just accept and deal with the situation. The experience was referred to as a ‘nasty journey’ where all the parent could do was just keep “plodding along doing what we have to do.” The journey metaphor was extended to ideas of ‘weathering the storm and waiting for it to go away’ or ‘looking forward to being another step closer to finishing.’ This was very difficult, as can be seen from the statement: But ultimately what are you going to do? Stick your head in a bucket and forget it all?... you can’t do that. And everyone says, “Oh how do you cope?” I mean you have to. You don’t have any alternative. But it was getting bad, so bad, that I was thinking if it went on for much longer I would have to just go cuckoo. Spiritual beliefs were important for some in learning to accept and deal with this situation: “On a personal level I think faith. Ahh, a religious perspective I suppose had a significant impact there.” Some, quite uncharacteristically, sought pharmacological assistance through anti-depressants: I just started taking anti-depressants... I would have never, a year ago, thought that I would ever, ever, ever, possibly even need to. Because I always thought I was mentally strong.... It is a situational depression.

Looking to maintenance Parents talked about how they kept the thought of moving to the maintenance stage in mind as a form or reassurance, as ‘the light at the end of the tunnel’: Well, that is it, yes. So you’re seeing this stage as if you can just get through the next blip you can then get into maintenance stage. After doing all of this the maintenance will be so much easier. Seeking professional support Some of the parents sought professional support, including consulting psychiatrists, psychologists, paediatricians and nurses, to help them cope with the situation: Well I saw the paediatrician. We saw him and he said some kids get quite psychotic on these drugs. He thought that is what was happening. [The child] is going to see a psychiatrist over it. The parents who obtained psychiatric help were very satisfied with the results: I went in there feeling like a mental, like someone who was mental. And you know, I was only in there half an hour with him. And I come out thinking, Oh, wow, this is so easy. And then you go and see him [the psychiatrist]. And then it is just so easy. Oh, yeah, its just these levels of serotonin. He explains and you think, “Ohhhhh, it’s so easy. There’s nothing wrong with me at all.” In particular, parents who were prescribed and used antidepressants for their children express a high degree of appreciation for this intervention: Yes, it [anti-depressant] is good. Yeah, Oh absolutely! Oh I couldn’t have survived without it. I couldn’t have done the thirty days of Dex without that [anti-depressant]. Not for nothing. Nuh! Nuh! And then he [the psychiatrist] gives you this little half a tablet each day and it just works like a charm. Oh, [laughs] it was just so easy to fix in our case. I mean I understand that with others it is not that easy. But in our case all I needed was this little half a tablet each day.... It was [names anti-depressant], yeah, an anti-depressant. He [the psychiatrist] explained how it is a very precise drug that only attacks the serotonin levels that your body needs. It is not addictive. There wasn’t a sign of aggression in the whole 30 days. Normalisation – talking to other parents The parents were keen to find out from other parents whether they were also experiencing the extreme behav-

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iour in their children under treatment. An example of such investigations is as follows: [The other child] was no different. [The mother] said [the child] would just talk obsessively about food and would take everything possible from the pantry to school, although [the child] was only going to school for half the day. You know it was just like being obsessed about running out of food and, you know, starve. And you kind of felt, well then that is okay. You knew it was the drugs and that it was short lived.

eryone else’s kids have ADD and that sort of thing, but never yours. And like here is me giving my child anti-depressants. That is what I felt at first. An important reason for assuming so much self-blame is that parents feel guilt and discomfort in being involved in a treatment process where they are part of inflicting distressing and painful procedures on their child, rather than protecting them. As one mother explains: Usually children know mummy can make me feel better. But with [a leukaemic child] there is nothing you can do.

Parents blaming themselves

Impact on the family

Not all parents sought support or reported feeling comfortable with expressing the difficulty they were experiencing during this stage. There is evidence that one important reason for this is that parents were, to a large degree, blaming themselves for the child’s behaviour. The sense of self-doubt and self-blame can be seen in the following texts:

The stress of the situation was not felt just in the parent–sick child dyad but rather reverberated throughout the family. As one parent explained, “It was that bad. I did think for a long time that we might end up with a well child, but with a destroyed family.” The accumulated stress of both the first two stages was beginning to be experienced:

I went to the psychologist and of course for two weeks before my appointment I’m thinking what kind of a mother takes [her child to a psychiatrist]? What is wrong with me? And when I went back to the psychologist he [described the side effect of dexamethasone] and I said, Oh, thank goodness [laugh] because I was, you know, really worried. What am I doing to this child to make this behaviour?

I just feel [my partner and I] just have not had any time for over 12 months now. And it takes its toll, you know. It, it’s very draining. Very draining. Towards the end of the re-induction stage we sort of started to fold. It was too much.

It was a great relief to these parents to find out that others were having the same experience with the drug: I think talking to [another parent from the hospital], and she is feeling exactly the same as I’m feeling. You know, you sort of think, “Oh yeah, it’s the rest of the world... not us, we’re all right.” Her child was the same. Yeah! Yeah! It is good to hear that too [that other parents find this stage difficult too]. I kept thinking, “Oh gee, I wonder if this is just [my child].” Some looked back in retrospect and saw that they should have sought help: Yeah, I felt... I was kind of down.... But, no, I didn’t [seek help]. I probably should have phoned somebody. Even those that did seek help found accepting antidepressants challenging: At first I was very concerned because, like I mean, my family has never had anything to do with depression. So these drugs, are sort of... I mean ev-

The siblings, as well, were experiencing their own problems because of the intensity of the re-induction stage of treatment. Part of the problem was the debilitated state of the child patient, who either could no longer play or was the cause of emotional stress in the sibling relationship because of aggressive or depressive behaviour. [The child patient] hurts siblings and has gone through a stage of hurting self. Either ripping a handful of hair out of [sibling]’s head, hitting.. or attacking. Another problem was the lack of attention siblings received because the parent was so absorbed in the demands of treatment with the sick child. Once we got back into re-induction it was full on. And I was never home and it [the sibling’s unhappy behaviour] came out again. And then [the sibling] started swearing and calling me bad names, and all the things that [the sibling] never ever does. Because [the sick child] is so demanding [the sibling] is suffering. [The sibling] has gone back to not trusting me again... you have to go backwards again. You feel you have conquered all that. It is hitting you right back in the face, like you know [the sibling] was having trouble at night time, crying and screaming and that in her sleep. And it was

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all because of this [what was happening medically]. Because [the sick child] was extremely demanding, I didn’t have time to cope with [the sibling]. Physically didn’t have any more time in my day. I was doing my best, it just wasn’t enough at the time.

Discussion It was the emotional rather than the physical side effects that were reported to be the most distressing aspects of the administration of dexamethasone during the re-induction/consolidation stage of treatment for ALL. As Fig. 1 shows, the most disturbing emotional problems were reported to be related to the aggressive, confused, depressive, and lethargic psychological states the children endured during their reactions to the drug. The children were described as becoming exceedingly demanding, dependent, confused and withdrawn during their exposure to the drug. They were seen to be unable to concentrate or focus on any activity, with the exception of an obsession with talking about or eating food. Parents experienced the children’s emotional states as very demanding, and this was exacerbated by the fact that the children were up all night eating and did not sleep. Some parents reported that this was to a worrying degree and that the child’s emotional state confronted them with a sense of death and hopelessness. All of this was happening at a time when all members of the family were exhausted with the prolonged treatment process. The re-induction/consolidation stage was seen to be far more difficult than the earlier treatments. Parents and children were reported to have been pushed to the limits of their endurance. This was partly because they were now exhausted and depleted from the physical and emotional demands of earlier treatments. They were also stressed by having to cope with concurrent side effects from other drugs administered at the same time during this treatment phase and from other complications from dexamethasone. All the parents talked about how they had little choice but to try to keep positive and just accept and deal with the situation. Some, uncharacteristically, turned to anti-depressants. A strategy that assisted parents was to think to the future to the maintenance stage, when the pressure of treatment would lessen to some degree. Another effective strategy was to turn to other parents with children going through the same stage of treatment to find out whether the reaction in other children was similar. Parents gained a great deal of comfort through the process of normalisation from discussions with other parents. Some parents did seek professional support from psychiatrists, psychologists, paediatricians, and nurses. Those who did were very satisfied and greatly appreciat-

Fig. 1 Emotional impact of dexamethasone during reinduction / reconsolidation for acute lymphoblastic leukaemia

ed the assistance of anti-depressants for their children. However, not all parents sought help, professional or otherwise, in spite of the difficulties they were experiencing. There was evidence that one of the important reasons for this is that parents were, to a large degree, blaming and doubting themselves for the children’s behaviour. An important reason for assuming so much selfblame is that parents feel guilt and discomfort in being involved in a treatment process where they are part of inflicting distressing and painful procedures on their child, rather than protecting them. The impact of this distress was felt by all family members. It had important repercussions for the partner relationship and for the siblings. Stress, tension and a

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lack of time to attend to individual needs were felt by all.

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Recommendations

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The findings from this study indicate the time of the administration of dexamethasone should be recognised as a critical time for families coping with treatment for ALL. These families will require support and sensitive care. The following recommendations are made with regard to informed and appropriate care: ●

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This point in treatment needs to be prioritised as a critical point at which families are vulnerable to excessive distress. Parents need to be well informed ahead of time about the serious psychological sequelae of the drug. Parents need to be reassured as to the normality of the psychological reaction under the circumstances. Parents need affirmation of their struggle to cope. Counselling and pharmacological interventions may be needed, and access to psychological/psychiatric services should be routinely offered.

Contact with other parents should be fostered, if desired, and ample written information provided in order that parents may be helped to normalise their experience. A clear timetable for the treatment protocol should be routinely provided to parents so that they can plan their present schedule, appreciate the time-limited nature of the difficult experience, and anticipate the relief of the maintenance stage.

Conclusion The insights provided by this group of parents about their experience of caring for their child during treatment with dexamethasone indicate that the emotional impact of this drug significantly affects all members of the family at a time in the treatment cycle when they are all feeling that ‘enough is enough.’ The vulnerability of families coping with the impact of this drug should be acknowledged and responded to with compassion. Acknowledgements I would like to express my appreciation for the work of the research assistant for this project, Mrs. Nicole Huff.

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