Chronic grief: experiences of working parents of children with chronic

Copyright © eContent Management Pty Ltd. Contemporary .Nurse (2006--7) 23: 228-242.

Parents if children with chronic illness experience multiple stressors associated with their numerous roles. For parents who are workingfull time and carin8Jor a child with chronic illness, the stressors related to mana8in8 work and caring

if caritiq iot a child with chronic illness has been Widely investigated, the literature reveals a paucity if research on the experiences if parents who are also in Jull time employment. This paper shares qualitative findin8s if a study involvitiq interviews if twelve

responsibilities are ma8nified. Although the impact

parents who were workin8Jull time while carin8for a child with chronic illness. Data was collected through in-depth semi structured interviews and thematic analysis was then used to develop and cate80rise themes. Two intertwined themes are reported: (1) griif and (2) dealinq with pre:fessionals. In this study, parents revealed the chronic 8riif they experienced in relation to their child's condition, which

iften recurred at various sta8es C?f the child's illness. The child's initial if the 8rievin8 process, with

diagnosis wasJound to be the most stresiful part

most feelin8 their voices as parents were not being heard or valued by health prifessionals at this time. This eifJected parents' corifidence in the health care system and tri88ered the re-emer8ence if griif, a8gravatin8 an already stresiful situation. Thefindings illustrate that the 8riif experienced by these parents can be exacerbated by their dealin8s with health proiessionals.

·pJic'itttions Jor

various health prifessionals are drawn from the findings in

er to hig" . ht

avenues where8uidance and support can be provided to these Received 29 April 2006

Accepted 26 October2006

AJESH GEORGE Doctoral Student NFORCE Research Group University of Western Sydney Penrith South NSW, Australia

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MARGARET H VICKERS Associate Professor School of Management College of Business Member, NFORCE Research Group University of Western Sydney Penrith South NSW, Australia

Volume 23, Issue 2, December 2006-January 2007

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Chronic grief: Experiences of working parents of children with chronic illness

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LESLEY WILKES

Professor School of Nursing College of Health and Science Member, NFORCE Research Group University of Western Sydney Penrith South NSW, Australia

INTRODUCTION ver the last 20 years, advances in scientific knowledge and technology have resulted in an increased number of children being identified as having and living with a chronic illness (Blum 1991; Gibson 1995; Isaacs & Sewell 2003). The impact of caring for a child with a chronic illness has been widely investigated (Freedman et al. 1995; levers & Drotar 1996; Padeliadu 1998; Burke ct al. 1999; Kurnat & Moore 1999; Melnyk et al. 2001; Hcdov, Anneren & Wikblad 2002; Meleski 2002). Several studies have shown that parents who care for children with chronic illness experience greater emotional and psychological distress than parents of healthy children (Cheng & SoKum Tang 1995; Silver et al. 1998; Pelchat et al. 1999; Isaacs & Sewell 2003). These negative effects have been attributed to the high levels of stress that parents experience while caring for a child with a chronic illness. The stressors experienced by these parents are usually multiple and ongoing, with the four most stressful experiences being the time of diagnosis; the ongoing health care needs of their child; developmental transitions; and illness exacerbations and hospitalisation experienced by the child (Melynk et al. 2001). The diagnosis of a child's chronic illness can be a very stressful period for parents, evoking feelings of uncertainty and helplessness regarding the child's condition (Cheng & So-Kum Tang 1995; Silver et al. 1998; Pelchat et al. 1999).

O

BELINDA BARTON

Head Children's Hospital Education Research Institute (CHERI) The Children's Hospital at Westmead Sydney NSW, Australia

Indeed, Clements and colleagues (1990) confirmed that 70% of parents reported that diagnosis was one of the most difficult periods during their child's chronic illness (Clements, Copeland & Loftus 1990). Parental responses to the diagnoses varied and commonly included: shock; disbelief; denial; anger; feelings of guilt; decreased self-worth; and a lack of confidence (Bendel et al. 1994; Eakes 1995; Vickers 2005a, 2005b,2006). Many parents also experience grief and! or sorrow as they struggle with various aspects of their child's chronic illness (Clubb 1991; Atkinson 1994; Eakes 1995). Often, the uncertainty associated with chronic illnesses creates situations where there is no predictable end to the loss they experience and no opportunity for resolution or closure to resolve the grief (Titelman & Psyk 1991; Atkinson 1994). This unresolved grief associated with ongoing loss has been labelled as delayed grief, chronic grief and even chronic sorrow (Olshansky 1962; Buschman 1988; Clubb 1991; Phillips 1991; Lindgren et al. 1992; Eakes 1995; Vickers 2005a, 2005b, 2006). Olshansky (1962) who first introduced the term 'chronic sorrow' observed this phenomenon in parents of children with severe mental retardation and viewed this as a natural response for parents confronted with grieving a loss that was never ending. He defined 'chronic sorrow' as pervasive sadness that was permanent, periodic, and potentially progressive in nature (Ols-


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han sky 1962). Since then, the concept of chronic sorrow has been applied to various situations. Chronic sorrow was shown to be periodic and progressive in parents of children with mental retardation (Winkler et al. 1981). Later, Mallow and Bechtal (1999) found that parents of children with developmental disabilities experienced chronic sorrow when their child was initially diagnosed. These findings concur with those of Damrosh and Perry (1989) involving parents of children with Down's syndrome. Other studies have highlighted triggers for the re-emergence of feelings of chronic grief and/ or sorrow (Winkler et al. 1981; Fraley 1986; Clubb 1991; Eakes 1995; Norwington 2000; Vickers 2005a, 2006). These triggers include the discovery of new medical problems; unending care giving responsibilities; the unpredictable nature of the child's illness; the potential for complications; and uncertainty about the child's future. Many parents also experience recurrent and/ or chronic sorrow when their child struggles to attain age-appropriate milestones especially when they realize the difference and delays that exist between their child and other healthy children (Melnyk et al. 1997; Lowes & Lyne 2000; Vickers 2005a, 2005b, 2006). These studies have also shown that parents experience many other emotions in addition to sorrow such as anger, fear, frustration, helplessness and other emotions which are characteristic of grief reactions. Although the literature highlights the numerous challenges facing parents of children with chronic illness, there is a paucity of research on the experiences of these parents who are also working full time. The main limitations of the existing studies has been the lack of focus on parents who are workingJull time as most have either not stressed this criteria (Cuskelly et al. 1998; Thyen, Kuhlthau & Perrin 1999; Einam & Cuskelly 2002; Hedov et al. 2002; Leiter et al. 2004) or have lacked clarity as to whether the parents are working full time or part time (Lewis et al. 2000). Other limitations have been the focus on specific chronic conditions only

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(Freedman et al. 1995; Shearn & Todd 2000); limited sample size (Vickers et al. 2004; Vickers 2005a; 2006); and the lack of any generalizable findings. The few studies that have tackled this area of family life have shown that, for parents who are working, the stressors involved in caring for a child with chronic illness are exacerbated. Various challenges confronting these parents have been identified. These include the need for parents to modify their working arrangements by becoming self employed; moving from private to public sectors; rearranging work schedules; reducing working hours; or ceasing work (Hirst 1985; Barnet & Boyce 1995; Freedman et al. 1995; Leiter et al. 2004; Vickers 2006). Other challenges include the difficulty in locating affordable and appropriate child care and obtaining employment that is flexible and fitted with their child's school hours (Crowley 1990; Van den Heuvel 1993; Kilmartin 1996; Bianchi 2000). Unfortunately, very little has been reported about the experiences of grief and/ or sorrow among parents who are working full time. In a study involving children with developmental disabilities, fathers who were employed full time experienced an array of emotions ranging from sorrow at the time of diagnosis to frustration and resignation (Mallow & Bechtel 1999). More recently, the existence of grief among full time working women caring for children for chronic illness has been found to be ongoing, recurrent and multiple sourced (Vickers 2005a, 2006). Working mothers reported 'doing it all' as they shouldered the burden of caring for a child with chronic illness while working full time (Vickers et al. 2004; Vickers and Parris 2005; Vickers 2006). The study aims to further explore the experiences of grief and/or sorrow in parents of children with chronic illness who are working full time. Greater knowledge about the difficulties and challenges facing these parents will help in identifying avenues where greater support can be provided.



METHOD Philosophical framework Phenomenology was deemed the most appropriate methodology for this study because it involves understanding and describing the lived experiences' of participants as interpreted by participants themselves (De Laine 1997; Vickers 2001; Creswell 2003; Mertens 2005). As this study aimed to gain insight and describe the livid experiences of parents who are working full time and caring for a child with chronic illness, this approach helps in eliciting rich, in depth data about the various issues facing these full time workers. This is particularly important since there is a lack of research about this aspect of family life. The research methodology chosen for this study was Van Marien's (1990) hermeneutic phenomenological inquiry. This philosophical approach enabled the research to be conducted from an interpretive paradigm which suited the main aim of this study. This methodology also enabled easy collection and thematic analysis.

Recruitment For inclusion in this study, parents were required to be working full time or equivalent, caring for a child 18 years and under with a chronic illness, living in a capital city or metropolitan area of Australia, and could read and understand the written English language. For this study the term 'full time or equivalent' was used to include parents who were selfemployed, undertaking multiple part-time/ casual roles, full-time study, or in the full-time permanent paid labour force. Chronic illness was defined as a significant illness or disability, which may be physical, emotional or cognitive and continues for at least six months, requiring ongoing medical intervention (pharmacological or other treatment, visits to medical practitioners, or hospitalisation) to treat acute episodes and/ or ongoing problems (Vickers et al. 2004; Vickers 2005a, 2006).

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Purposive sampling was used to select parents for the study. Parents were recruited between August 2005 and March 2006 using two approaches. The first approach involved recruiting potential participants using a modified referral technique (Vickers, 2001; Watters & Biernacki, 1989). This technique involved the study investigator asking associates and friends (intermediaries) if they knew anyone who might be willing to participate in the study. Interested participants were provided the contact details of the study investigator. This approach ensured the recruitment was at arms length and prevented respondents from being pressured into participating. The second approach involved recruiting participants from a large children's hospital in Sydney, Australia. Flyers containing the aim, purpose and inclusion criteria of the study were strategically placed in various locations around the hospital. Potential respondents were invited to contact the study investigator to obtain further information. The study investigator provided a brief outline about the nature and scope of the study to all participants. Information sheets and consent forms were then mailed to potential participants. Participants then contacted the study investigator to arrange an interview time and place.

Ethics Ethical approval to conduct the study was granted by The Children's Hospital at Westmead and the University ofWestern Sydney Human Ethics Research Committees.

Data collection In-depth, semi-structured interviews were conducted in most cases in the participant's home. Each interview was audio-taped and lasted for approximately 90 minutes. Prior to the commencement of the interviews, signed informed consent was obtained and brief demographic details about the child and the parents were collected.


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FINDINGS

During the interview, parents were asked about their lived experience with special attention directed to the identification of areas where potential support was required. The interviews were conversational in nature, the flow of which was governed by the participant and were guided but not restricted to the following focus areas: caring responsibilities; getting carers; financial implications; family and partner relationships; dealing with professionals; work life; current employment conditions; grief; sources of information; and practical needs. Probing and story telling were used to encourage parents to talk more about their experiences. Probing is frequently used in indepth interviewing to help respondents provide accurate information and to refine and complete their answers (Sarantakos 1998) whereas story telling is used to help participants depict their feelings through narrations, allowing them greater latitude in answering questions (Minichiello et al. 1995). 'Note taking' was also utilized after the interview to record the researcher's interpretations and personal experiences of the interview as well as to capture the participant's body language and visual responses (Minichiello et al. 1995). This complemented the data collected and added to its accuracy and completeness.

Eight females and three males participated in this study. The ages of the parents ranged from 30 to 50 years with an average age of 42. All parents worked full time (or equivalent) with eleven of the parents having partners who also worked full time. Two respondents had to care for another adult as well. Parents had being caring for their child with chronic illnessfor varying periods ranging from 2 to 18 years. The children were aged from three to 18 years and had diverse chronic conditions including: lobar holoprosencephaly; cerebral palsy; Duchennemuscular dystrophy; renal failure; spina bifida; Marfan's syndrome; hydrocephalus; neurofibromatosis type 1 (NFl); attention deficit hyperactivity disorder (ADHD); and metachromatic leukodystrophy. Several themes emerged from the thematic analysis of the data including caring responsibilities; issues with carers; money; relationships; work life; work place; grief; dealing with health professionals and information. As the focus of this paper is on grief, two intertwined themes are reported here: (1) grief; and (2) dealing with health professionals. Described here are the parents' lived experiences. Exemplars from the analysed text with pseudonyms for the parents' names are used to illustrate themes.

Data analysis

Grief

All interviews were transcribed verbatim and then analysed using thematic analysis (Van Manen 1990). Transcripts were read line by line and coded using NUD*IST Vivo software (NUD*IST Vivo 2003). Significant statements from each transcript were extracted, meanings formulated and then organised into various themes. Evidence of these themes was explored in each of the transcripts. Sub themes were also identified. The study investigators coded each transcript individually and a consensus of the final list of themes and sub themes was made. This process added to the rigor of the analysis.

Eleven of the twelve parents interviewed talked about the grief they experienced with regard to their child's condition. They described a range of grief-related feelings, especially those associated with receiving their child's initial diagnosis. They recounted various situations and circumstances where these feelings recurred, many of them in relation to the medical advice they received or the response of health professionals around them. The only participant who did not recall any experience of grief was a stepfather who was caring for a child with spina bifida from his second marriage.

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Chronic grief Experiences of working parents of children with chronic illness

Grief at diagnosis The time of the child's initial diagnosis was the most frequently mentioned situation where parents experienced grief. Parents described an array of grief-related feelings at this juncture including: shock; anger; confusion; sadness; fear; guilt; and denial. The most common reaction reported was shock, especially when diagnosis occurred at the time of birth when parents had high expectations for their child and least expected anything to go wrong. This is depicted in the following quote from Susan who had a child born with a birth defect of the brain: You're off this high euphoria of having a baby and you are tired because you might have been expressing or feeding and that sort of stuff. And then on top of that I was expecting to go home, so I was really excited as well, and feeling tired and drained ... Then the doctors came and talked to me and said, 'Look, there is something else wrong. We have done the blood tests and we need to ask you some questions because you can't take your baby.' And I was just like devastated. (Susan)

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bel' anything anybody tells you. You are just like, stunned. (Kate) A few parents reported going into denial, refusing to accept their child's diagnosis: I think at that stage I was, like, in denial that there was anything wrong with him. I just wanted to take him home and look after him and that was that. (Leanne) Others expressed their confusion and need for further explanation. Rose asked to see the doctor at a time when she needed to understand what was happening. Her shock was clear: I knew what hydrocephalus meant but all I knew about hydrocephalus was the kids that live in an institution who are profoundly, profoundly intellectually impaired. And it took me a long time for that to kind of match up; that I had had a baby that had a problem and, you know, 'Do you want to see the doctor?' 'Yeah, get me the doctor'. And I can remember this bearded face kind of looking at me going, 'Well, your baby's got hydrocephalus, you know.' And I'm going, 'Oh, f-k. What?' (Rose)

Kate experienced similar shock when she saw her new born baby for the first time and was told he had spina bifida. Unfortunately, her grief was exacerbated by her dealings with the health professionals at the time:

David, who had a child with cerebral palsy, expressed his anger and grief in response to the way in which his son had been initially diagnosed and provided with care. He blamed the hospital system for his son's condition:

They brought him over and said, 'We have got just a small problem.' And I was like, 'Yeah?' [Kate is sounding uncertain). And they opened up the wrap and showed me his back and there was just this little fleshy lump and I went, 'Right,' thinking, 'Well, what is it, you know?' And he said, 'He has got spina bifida.' And I went, 'OK' [Kate raises her hands in front of her as if shocked and confused and not feeling OK at all) ... At this stage I still didn't know what it was. What were the implications? ... You don't remem-

Why we are saying negligence is because they knew pretty well he was a premature baby when he was in the eleventh day. They thought he was doing fine and they took out the breathing apparatus ... What happened, there was a duct between the heart and the lungs which is not closed. It created a blood vent from the heart to the lungs, lungs to the mouth and then to the brain. So that has caused the problem ... They took the decision without informing us and when this all happened they said it was a clinical issue. Let's


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Ajesh George et al. face it, today this could have been avoided ... Now you can see that our entire lives have changed. (David)

diagnosis of NF 1, because her son's diagnosis wasn't confirmed until after twelve months of medical tests:

Several parents experienced fear and confusion at the time of diagnosis due to the uncertainty that prevailed at the time of birth. Both Molly and Kate who had children with spina bifid a sensed something was wrong at the time of birth but did not know the extent of the problem. Fear of the unknown aggravated an already stressful situation and made their experience of their child's diagnosis even more traumatic. For these women, the information about their child's condition that was hidden from them served to exacerbate their experience of grief. This is illustrated in the following quotes:

The grieving took so long because it was twelve months of constant prodding and poking and trying to find out what it was ... There is a benefit from having a label and having a diagnosis because as soon as you get the label you can get the management plan in place, whereas if you don't have a diagnosis, you don't know what you're managing. You don't know what you're dealing with. (Leanne)

They opened me up. I had a spinal block so I was awake during the caesarean. And the doctor went, 'Oh, my God, I am so sorry.' I said, 'What?' The doctor said, 'I am so sorry. The doctors will be here to talk to you soon.' And they just grabbed Lennie and went. And I had no idea so I was petrified. 'What is going on?' And he just kept saying, 'I didn't know. I am so sorry.' (Molly) I knew something was wrong because, when I had him, they took him over there, like over that way, and they started fussing about and doing all this. And I am thinking, 'What is happening over there?', you know. In the meantime somebody is here talking to me, but I can remember thinking, 'Something is not right.' (Kate) A few parents pointed out that the longer it took to diagnose their child's condition, the more painful it was for them, thus exacerbating their grief. It was harder for these parents to deal with the grief without a definite diagnosis and not knowing what they were dealing with. Leanne found it easier to cope with her daughter's diagnosis of ADHD than with her son's

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Chronic grief Ten out of the twelve parents interviewed evidenced chronic grief. Chronic grief was defined as pervasive sadness, and/or other emotions commonly associated with grief, that is permanent, periodic, and potentially progressive in nature (Eakes 1995). Some parents confessed that they would never be able to overcome the grief. Others admitted they often pondered what their life could have been like if circumstances had been different. Of interest, all ten of these parents reported their grief being triggered by multiple factors. These factors included hurtful comments from other people, being asked to repeat the child's medical history, facing the reality of the child's condition, hearing stories about death, the deterioration of the child's health, and uncertainty when going for tests and medical appointments with their child. Many parents commented on thoughtless remarks from friends, family members, other parents and even strangers that frequently triggered feelings of grief for them. Comments that may have seemed innocent to these people were very often hurtful and upsetting for parents: I guess the heartbreak that made that worse was that my ex-husband, as soon as we walked out of the doctor's office, said he wanted another child. So that hurt. That hurt and I wouldn't give him another one, because


Chronic grief: Experiences of working parents of children with chronic illness no child was going to replace Lionel. For him to say that was like a slap in the face and he was going to ignore Lionel. (Jane) I can remember a man coming to quote for the awnings on the outside of the house for the bedrooms for the summer and Nadia was asleep. The she woke up so I went and got her and he said, 'Oh, what's happened there?' And I said 'Oh, you know this is how my child was born.' 'Oh, that's the devil at work. That's the devil working there. God picks special people.' ... And I guess it is times like those kind of things where you maybe grieve. (Rose) However, this insensitivity also emanated from the medical profession. Continuously being asked their child's 'storv' was another source of grief for some parents. Whether it was doctors who wanted to know the child's medical history or acquaintances that were curious about the child's condition, parents were forced to recall heartbreaking events like diagnosis and birth which often brought back feelings of grief. Michelle and Jason, who were husband and wife (interviewed together), had two children diagnosed with a terminal genetic disease: )

Jason: Another thing I find, all the time, having

to tell everyone the story again. Just like when you go to Admission, you know, the next doctor that comes along. You are just repeating yourself time and time again. Michelle: And it used to be the birth ... that shouldn't have anything to do with it now, we have got the diagnosis that it is genetic, you know. 'Don't keep asking me about that.' ... Every time we came into Casualty, it was the same, over and over. And I said to them, 'Can't you get the information? Can't you read this first, then go and speak to the parent?' Because it is just re-hashing the same stuff and it is frustrating. (Michelle and Jason)

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Interestingly, one parent even avoided socialising with people due to the barrage of questions he had to face about his child, which often left him feeling guilty: Personally, once fine. Second time, fine. But if you are constantly asked the things ... they create a sort of guilt in you ... So that is the reason why we try to purposely avoid any of the social circles. (David) For parents of children with terminal illnesses, having to face the reality of their child dying was a major source of grief. These feelings seemed to be exacerbated in cases involving a gradual deterioration in the child's condition. Michelle and Jason also discuss this issue together: Michelle: You know, you have a child. Especially,

you have all these hopes and dreams. Jack was five and a half. He was walking, talking, writing his name. He was riding a bike Jason: Playing tennisMichelle: Doing all that type of stuff and then to get told that your son is going to die in six years and he will end up bed ridden, tube fed ... and you just think, 'God, what have I done?' (Michelle and Jason) For Jane who also had a child with a terminal condition, encountering situations and even listening to stories that involved death brought back feelings of grief for her: I get upset, you know. I can't go to funerals, because I see myself. I can't watch heart wrenching shows on TV where someone has got an illness and they are going to die. I can't watch them. I break down and cry. (Jane) Taking the child for tests and medical appointments was another stressful ordeal for some parents. As Leanne revealed, at the back of her mind she always imagined that something awful


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would be discovered about her son's condition. This uncertainty and constant worry about the child's illness often triggered grief-related feelings for her: Definitely grief. And it is probably when you have to go for the tests each time; that is when it starts to worry you again ... Like, like on the weekend, when he had to have a CAT (computerised axial tomography) scan for hitting his head, I thought, you know, 'They could accidentally find something awful.' (Leanne)

Dealing with health professionals Notably, eight out of the ten parents who talked specifically about grief voiced their dissatisfaction with health professionals. Poor communication during diagnosis, not being taken seriously and insensitive remarks were some of the issues that frustrated and hurt these grief-stricken parents and which would have aggravated their already fragile emotional state.

Poor communication Most parents found the communication of the child's diagnosis was inadequate. Parents reported that, when breaking the news, some doctors were inconsiderate and unhelpful. Michelle shares one such example: Yeah. He [the doctor] rang and told us. And I said, 'Well what is it?' He told me what it was. I asked him to spell it and I said, 'Well, how do I find out about it? What does it mean?' He said, 'Go on the Internet.' (Michelle) Furthermore, some parents reported receiving insufficient information about their child's condition. Leanne confirmed the lack of information, saying: They sort of really tried not to tell you too much at first ... It felt a little bit like I was kept in the dark. (Leanne)

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Other parents were provided with an overload of information. Molly shares her experience, and frustration: You know, five doctors were giving me all this information. I didn't have a bloody clue. You know, what a stupid way to do it. (Molly) Further, there were no perceived supports in place to help these parents deal with the situation. Very few of these parents were offered any counselling services to help them deal with the grief they were experiencing: They should have on hand a counsellor or a psychologist. Because what they are breaking, I mean the news they are breaking is going to cause shock and grief. And in my case, I didn't have any of that. It was like, 'OK. Go home now and think about what you are going to do.' (Vicky) You never really had a chance, I suppose, to get used to the idea, to know what it is about. What does, what does it mean? Is he going to live? Is he going to die?You know, I never saw any counsellors. I never saw, never saw any social workers; never saw anyone. (Kate) The few parents who did see counsellors were unhappy with the services provided and the long waiting list that existed. Some reported comments from counsellors to be rather insensitive and often did not provide any solace to these parents. Of concern, one parent even had to battle the bureaucracy of the hospital in order to speak to someone: Tom was in Oncology because he was having a transplant. We didn't fit into the Oncology 'square'. We were a Neurology patient. So, when we had to, when I said I wanted to speak to a counsellor, 'Well, you can't have our Oncology counsellor because you are not



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a Cancer, you are Neurology. So you have to speak to them.' Like, who cares? I mean, God, I am in your ward just give me someone to speak to! Like that was, I found that really

his name. And then I just wrote him ff H o '" e was just rude ... Yeah, insensitI've e . II . . ' speCIa y to be working as a paedIatrician. (Leanne)

frustrating. (Michelle)

I had one doctor who told me she was ugly ... When she was three months old, he said to me, 'She has course features.' He said, 'In layman's terms, that means she's ugly.' And I looked at him, and I thought I just was stunned ... I have no confidence in him as a practitioner. I wouldn't go back to him because that's his bedside manner. (Cynthia)

Not being taken seriously Most parents in this study voiced their frustration at not being listened to or taken seriously by health professionals. Whether it was during a diagnosis or when their child's condition deteriorated, the general consensus from respondents was that health professionals were not listening to them. Rose's comments make the point; she said they were not 'hearing my voice as a parent and not valuing what I say as a parent'. Five parents recounted situations where their concerns about their child were neither heard

In summary, most parents' experienced chronic grief which was multi-sourced emanating mainly from the time of their child's diagnosis. This re-emergence of grief was attributed to various factors including their interaction with health

nor acknowledged, nor were they involved in the decision making processes about their child. Their valuable experience caring for their own child was ignored:

professionals. The unsupportive and insensitive attitudes of health professionals exacerbated the grieving process for many of these working parents, aggravating their already stressful lives.

It's about trusting us as parents; that we're actually not all idiots. Just because we've got a retarded kid doesn't mean that we're retarded . (Rose) You know, a lot of doctors are like that. You say to the doctors, 'This is happening to my child. I want you to do something.' 'Well, what would you know?' 'Well, I live with him everyday and I do know!' (Molly)

Insensitive remarks Some parents recalled situations where doctors were rude and insensitive towards them. Doctors made remarks that were hurtful and inappropriate without any consideration to these parents. These encounters were traumatic for some parents as it aggravated their grief and tarnished their confidence in health professionals: He was more interested in making a joke about his large head and making a joke about

DISCUSSION The findings of this study have revealed similarities as well as differences with other studies. This study has confirmed previous findings that parents of children with chronic illness do experience grief that is recurrent and ongoing (Eakes 1995; Kraft & Kraft 1998; Mallow & Bechetel 1999; Lowes & Lyne 2000; Melynk et al. 2001; Scornaienchi 2003; Vickers 2005a, 2006). Further, this study has demonstrated that the time of initial diagnosis was one of the most stressful periods for these parents, evoking an array of grief-related feelings like shock, anger, confusion, guilt, sadness, fear and denial. These responses to diagnosis are similar to findings from others studies (Canam 1993; Stevens 1994; Tanner, Dechert & Friedman 1998) and illustrate that grief is often experienced differently, by different people and should not be regarded as a uniform process (Noppe 2000; Bonanno & Kaltman 2001; Vickers 2005a, 2006). However, this study has also revealed that the


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phenomenon of chronic grief and sorrow experienced by most of these parents was not just bound to the diagnosis of the child. Although other studies have identified triggers like unending care giving tasks, discovery of new medical problems, health care management crises and developmental transitions as the most common source of chronic grief (Winkler et al. 1981; Eakes 1995; Mallow & Bechtel 1999; Norwington 2000), for most of the parents in this study, the recurrence of grief was triggered by hurtful comments from people and the requirement to constantly repeat their child's history. These results confirm Vickers' (2005a, 2006) study, which also identified insensitive comments as a significant and routine trigger for the re-emergence of chronic grief among working mothers. However, this study illustrates more specifically the impact of insensitivity when it comes from health professionals. Another issue that emerged from these findings was the impact that health professionals had on the emotional state of these parents. Experiences with health professionals, such as not being taken seriously or being the recipient of insensitive remarks about their child, frustrated, hurt and angered parents, and aggravated their grief. This lack of support from health professionals has been highlighted in earlier research. Studies have found that the knowledge gained by individuals through their experiences with chronic illness were often ignored by health professionals, especially in the decision making process (Paterson, Russell & Thorne 2001; Thorne, Paterson & Russell 2003; Henderson 2006). Although researchers have found that the experience of living with a chronic illness is critical to the development of expert disease management, very rarely are such individuals involved in a mutually satisfactory partnership with health professionals (Jayne 1993; Paterson & Sloan 1994; Ellison & Rayman 1998; Henderson 2006). In addition, studies have also highlighted the insensitivity that health professionals have towards the grief and anxiety that parents expe-

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Volume 23, Issue 2, December

rience in the early disease stages (Hodges & Parker 1987). However, a significant finding of this study is the association of these parent's experiences with health professionals and the potential of these experiences in reactivating or triggering grief. Ironically, health professionals are often viewed by families as a central source of support (Robinson 1987; Burke & Kauffman 1990) when they can also be the source of grief. Although this study highlights the correlation between dealing with health professionals and the recurrence of grief, it is an issue that is under researched and requires further investigation. This study also showed the multiple sources of grief that these parents have to endure while both working and caring for their child. These findings confirm and extend the work ofVickers (2005a, 2006), suggesting that for these parents, dealing with grief that is multi-sourced, particularly grief triggered by interacting with health professionals, can be extremely challenging, especially considering the additional stressors they face trying to balance their dual roles. What is also evident is that these parents are lacking much needed emotional support to help them through the grieving process.

IMPLICATIONS Health professionals have a unique opportunity to make a difference in the lives of these parents. This study has highlighted several areas where health professionals can provide gUidance and support to parents caring for a child with chronic illness. Recognising the existence of chronic sorrow and grief for these people and that these feelings may be exacerbated during their interactions with health care professionals should be seen as worthy of routine consideration in clinical practice. Recognition that such a problem exists may be a first step in enabling health care professionals to provide more appropriate support. The time of a child's diagnosis is critical and can evoke intense grief reactions. This crucial period requires the implementation of clinically

2006~January 2007

Chronic grief: Experiences of working parents of children with chronic illness appropriate interventions that may potentially ameliorate the potential triggers for grief and chronic sorrow. At this juncture, health professionals need to offer timely counselling services where parents can share their feelings. Also, the provision of useful information about their child's health as soon as possible in an honest, direct, factual, and compassionate way, is essential as reflected in the recent work by Monterosso et al. (2005). Further, awareness of the significant grief experienced by these parents, not just at the time of diagnosis, but at other times when interacting with health professionals, as well as the various potential triggers for such grief, can help health professionals provide anticipatory guidance and interventions that may be helpful. Health professionals need to be more considerate when interacting with grieving parents by avoiding insensitive remarks, valuing parent's concerns, and involving them in the decision making process.

STUDY LIMITATIONS This study attempted to provide an insight into the experiences of parents of children with chronic illness who are working full time. One of the limitations was the use of 'purposive sampling' which resulted in a small number of participants. In addition, identifying the target population via 'snowballing' technique precluded the benefits of random sampling. These limitations mean that the results may not be a true representation of the larger population. Furthermore, the involvement of more male participants could have revealed a broader range of difficulties and challenges facing these parents. Nevertheless, these qualitative interviews have resulted in rich narratives of their lived experiences.

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has shown that the grief experienced by these parents is multi sourced and can be aggravated when dealing with health professionals. However, further work is needed to investigate the range of emotional responses that these parents experience while managing their working and caring responsibilities. In particular, larger studies that explore the patterns of grieving in these parents are essential for health professionals to develop instruments that can be used to identify parents at risk, as well as clinically appropriate and sensitive supportive strategies.

Acknowledgement Funding to support this project is gratefully acknowledged from the Australian Research Council, the University of Western Sydney and The Children's Hospital Education Research Institute (CHERI).

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ADVANCES IN CONTEMPORARY TRANSCUL.TURAL. NURSING Edited by John Daly & Debra Jackson, University of Western Sydney Dedicated to Madeleine Leininger ISBN 0-9750436-1-7; xiv + 190 pages; softcover; October 2003 Now in its fifth printing, this special issue of Contemporary Nurse is available for adoption in 2007 health care courses. Co-ordinators of the following courses are invited to request an evaluation copy: • • • •

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