by Dr Anne Grinyer, Director Masters Programmes, Division of Health Research, Faculty of Health and Medicine, Lancaster University
The diagnosis of life threatening illness in a child or young person is experienced as a devastating shock to the whole family; parents, siblings and wider family members are all affected as are their family relationships. The diagnosis of cancer in adolescents and young adults (AYAs) brings with it particular challenges that are related to the life stage of the young person at a transitional moment between childhood and adulthood; they are beginning to establish their independence but it is extremely fragile and thrown into crisis under these circumstances. This chapter considers how family relationships are affected: the tensions that can arise between parents and a son or daughter struggling to retain their autonomy; the negotiation of roles when the AYA has a partner or is married; the difficulty parents have in creating ‘open awareness’ about the prognosis; and finally how parents manage their own health issues under such circumstances.
Parents as carers – the impact on roles and relationships
When an AYA is diagnosed with cancer, it is usually the parents who take on the role of carers; the most common pattern is for the mother to undertake the main carer responsibilities, often leaving her paid employment in order to do so. Fathers too are of course involved, but tend less often to resign their jobs and may even work longer hours to compensate for the loss of the mother’s income and the increased expense of caring for a sick child. Both parents may also have less time to spend with their other children; this can cause internal conflict for a parent who may have to choose between being with a sick child in hospital and being at home to care for any siblings. For single parents the conflicting demands are exacerbated and can result in considerable emotional turmoil, the parent feeling that they are always in the ‘wrong place’ knowing that it is not only the sick child but also their siblings who need support and reassurance (Grinyer 2002). So already, before we have even discussed the anxieties associated with the illness itself, it is clear that family dynamics may be disrupted and roles, relationships and responsibilities affected in a far reaching way.
The struggle for independence – how parents manage the conflict
In addition to the issues raised above, perhaps the biggest single factor that impacts on family dynamics when it is an adolescent or young adult who has cancer, is the effect of their life stage. Young people between the ages of 16-24 are described by Apter (2001) as ‘thresholders’. They are caught between dependence and independence, they are in a transitional life stage in which childhood has not yet been left behind fully but neither has adulthood been reached. Even for those at the higher end of the age range who may have already left home at the time of diagnosis, the chances are that the fragile infrastructure of their lives will force a return home to be cared for by their parents after diagnosis. Those at college or university may have to abandon their courses; those in employment may have to give up their jobs and accommodation; this return to ‘dependency’ comes at a particularly challenging moment in the life trajectory of an AYA. As Brannen et al (1994) say, this is already a time when AYAs are renegotiating relationships with their parents, making new peer group and sexual relationships; and there will have been a gradual weakening of family bonds as the young people search for independence away from the supervision of their parents. So the sudden onset of life threatening illness, coupled with the likely loss of independence and the renegotiation of family relationships can be complex and challenging – this is of course exacerbated by anxieties about the health and survival of the young person.
My research on the impact on parents when their adolescent son or daughter is diagnosed with cancer (Grinyer 2002) suggests that the AYAs’ struggle to maintain independence is heightened when returning home for care and support. Having undertaken research with parents (Grinyer 2002) and with young people (Grinyer 2007) it is possible to see how the resulting tensions are experienced from both perspectives. For the parents, their ‘instinctive’ wish is to protect their son or daughter, maximise the chance of their treatment being successful and to keep them safe; yet the fear of losing independence and becoming even more marginalised from their friends and peers may propel the young people into risky ventures. Going to festivals, parties, sporting events and holidays may all be ‘unwise’ and compromise their health at certain times during their illness and treatment, but these activities can be what make life tolerable. Parents find they have to balance their concerns with their desire to support their son or daughter in living life to the full – this can be the cause of much unease. Sianne’s mother Candy talked about the anxiety she was caused when Sianne who was 20 and had rhabdomyosarcoma, wanted to attend music festivals and have holidays with her friends:
I found it terribly hard, because I wanted to protect her but at the same time give her all the encouragement I could to get out and try everything while she could. She did amazingly well including going to Knebworth [music festival] in the middle of her high-dose treatment to see her idols, Oasis, going to V97 [music festival], several holidays with her friends both at home and abroad and finally managing a week in Tenerife three weeks before she died while I remained at home in a state of sheer panic! (Candy)
While most parents felt they had managed to conceal and contain their anxieties over what they might believe to be activities potentially detrimental to their son or daughter’s health, it was sometimes the everyday, trivial exchanges that the young people found over protective. This can be seen in this quote from Steven, he was 18 when he was diagnosed with Hodgkin’s disease:
Believe it or not, people can over care. People can worry and fuss too much and that can get you down a bit. You know it’s like “I’m alright just leave me alone”…“would you like me to go and get you some tea” or “would you like me to make you this and make you that”? No I can manage myself, I’m not an invalid you know, I haven’t got two broken arms, so I’m sure I can go make myself a cup of tea or cup of coffee or whatever. But people did treat you like that at times. (Steven)
One young man, Philip who was 20, had (unusually) refused to return home to his parents for care after surgery for bowel cancer. Even though he was geographically separated from his parents, he expresses here the tensions that can arise when parents demonstrate their understandable concern:
It was a big problem not getting my Mum and Dad to smother me, they’d be ringing me 3 or 4 times a day to see if I was alright, I was saying I’ll speak to you tomorrow, don’t ring me again, I had to be that blunt with them. I had to just turn round and say give us a break you’re doing my head in you knowit took them a while to realise that they were smothering methem ringing me 3 or 4 times a day was getting beyond a joke[they wanted] to come up and move me out of here and take me home, I wasn’t having any of that. (Philip)
This tension between parents’ struggle to be supportive while also ‘letting go’ and young peoples’ desire for independence and autonomy was a thread that ran throughout the research with both parents (Grinyer 2002) and young people (Grinyer 2007; 2009). Coupled with this loss of independence, young people who were at acute stages of illness and who required care from their parents evocative of that given in infancy, were thrown back into situations that are summarised by Sue who cared for her son Alexander aged 22 who had been diagnosed with osteosarcoma:
So when the shattering news came that Alexander had cancer, it posed us with myriad challenges. Alexander was used to being his own man, living away from home, making his own decisions and was immensely proud of the fact that he didn’t need our help in any way. All of this was now lost. Emotionally, the situation was complicated. We had not lived together for the previous one-and-a-half years, now we were thrown back into a family situation we thought we had outgrown. Moreover, it came with trappings reminiscent of infancy: Alex was unable to walk (the primary cancer in the tibia was large and the bone about to fracture), was altogether weak and helpless and financially totally dependent on us again. This placed the whole family under considerable strain. (Sue)
Sue’s quote refers to the total dependency that can be experienced by the young adults at certain stages of their illness. This can manifest itself, as she says, not only financially but also physically. For the sexually mature young adult, and indeed for the parents, the need to provide intimate care can be distressing. Anne reflected on the difficulty she had in attending to her son Christopher’s personal needs. Though she was a doctor, the fact that he was 20 years old and her son affected her capacity to give him the intimate care he needed and, importantly, his ability to accept it, as she said: “When I was with him I could perhaps persuade him to eat but I couldn’t help him to shower, in fact the loss of any small dignity he had left.” In contrast Gabrielle, who also needed to give intimate care to her son Steve aged 24, did not feel that his dignity was compromised and reflected on her care for him as follows:“Throughout all this you never lost your dignity as a young man. You allowed me to look after your body as I had when you were a baby. I fed you, washed you, wiped you clean but you remained in control.”
These examples suggest that no assumptions can be made about how easy or difficult it will be for parents to provide intimate personal care to sexually mature young adult sons and daughters who under ‘normal’ circumstances would be inclined to be private about their bodies. These considerations raise the issue of sexual maturity and the additional challenges that this aspect of young adulthood can bring – it is to the issue of sexual relationships that we now turn.
Negotiating roles and relationships – parents and partners
Further complications relating to roles and relationships can arise from the young person with cancer having a partner or spouse; in this age group it is very likely that they will have had or be having a sexual relationship. As Brannen et al (1994) say, most parents and their children experience difficulties in discussing sex but a cancer diagnosis may result in the loss of privacy in such matters and require parents to engage with their son or daughter’s sexuality. One mother, Helen, became aware that her son Simon aged 19 had never experienced intercourse; as a result she tried to remedy this on his behalf:
Simon hadn’t even had a girlfriend; he hadn’t experienced intercourse. He and I talked about this a bit in hospital. A friend approached the local cancer information service, who have someone specialising in sexual matters and cancer. She was going to arrange a visit to a sympathetic prostitute, but Simon was never well enough. (Helen)
We can only imagine how difficult this must be for a parent, but even in situations where sexual relationships have been established prior to the illness, these relationships are likely to be fragile and to fail under the strain of the illness. Brenda, Miles’ mother said the following:
Miles’s girlfriend had to move out. After some months the inevitable happened and our son’s girlfriend who had been a tower of strength could no longer cope with the situation. For her own survival and to carry on the demands of her own career she had to move into a flat with a girlfriend. She had been a wonderful help to him and us but of course had become bowed down by the caring. (Brenda)
However, better established relationships or marriages that withstood the pressures of the illness nevertheless presented challenges; roles and relationships had to be negotiated with sensitivity if the status of the young patient’s spouse was to be recognised by health professionals – or indeed other family members. Examples from my research (Grinyer 2012) illustrate two very different scenarios. When reading these contrasting accounts it is important to be aware of the different circumstances: Bianca and Ryan had few resources of their own while Sara and Brad were better established materially; Ryan’s death took place in his childhood bedroom while Sara’s took place in her marital home; Ryan’s story relates to the relationship between an adult son and his mother while Sara’s relates to an adult daughter and her mother. Finally one account is from a ‘wife and daughter-in-law’ while the other is from a ‘mother and mother-in-law’. Thus in no way do I wish to imply any judgement about how well or otherwise the situation was managed; rather, through the use of two disparate examples, I wish to demonstrate a variety of issues that can arise for parents, their young adult son or daughter and their partners, when negotiating roles and relationships.
Bianca and Ryan: Bianca and Ryan met at university and married while she was still an undergraduate and just after he had graduated. To some extent their marriage was precipitated by the seriousness of Ryan’s illness – he died only six weeks later at (nearly) 22 from osteosarcoma. Because they could not afford their own accommodation, when Ryan became very ill they lived in Ryan’s mother’s home until his death. Bianca’s account of the experience focuses on the difficult relationship between her and Ryan’s mother who became very possessive of him towards the end of Ryan’s life. Despite what Bianca described as a longstanding ‘tempestuous’ relationship between Ryan and his mother, Bianca experienced her as being ‘competitive’ about who did what for Ryan. Bianca also felt excluded by the health professionals involved in Ryan’s care who tended to talk to his parents rather than to her as his wife. The need for Ryan’s mother to be ‘in charge’ continued after Ryan’s death and she said: ‘His mum and I fell out and we don’t particularly speak any more’. Bianca’s age (20) and her relatively new status as his wife seems to have contributed to her feelings of disempowerment in relationship to Ryan’s care both at home and in discussions with health professionals. This situation seems to be rooted in Ryan and Bianca’s age and life stage, had they been an older better established couple, Bianca’s status as his wife is likely to have been recognised and honoured by the professionals and her ability to withstand his mother’s need to take control might have been greater.
Pat and Sara: Pat’s account of her daughter Sara’s illness and death also demonstrates the challenge of renegotiating roles and relationships. Sara had been married for less than two years when she died aged 26 in her marital home from a desmoplastic small round intra-abdominal blue cell tumour. It was her wish to die at home with her husband and her cat and she was able to achieve this. During the period approaching her death, Pat and Sara stayed close and would discuss her husband Brad and his relationship with the family. However, at one point Sara said: “I can no longer be in the middle of this. I cannot be your mediator. You have to talk to each other.” Pat says that from that point on this is what happened and while it was not always easy emotionally, they did not always agree and ‘weren’t always in sync’, they found a way to make it work. Pat describes her need to accept that Brad was Sara’s primary care giver, it was difficult for her to give up that role to Brad but in her account she acknowledges that this is what Sara wanted. Sara’s sister Jenny sometimes found it problematic that Brad as ‘gatekeeper’ could stand at the bedroom door and tell her that Sara had gone to bed for the night and she couldn’t go in to say ‘good night’; but Pat describes this as being a ‘hard role’ for Brad and he was simply passing on what he believed were Sara’s wishes. In so far as any death can be described as a ‘good death’ Pat says that Sara’s was and that Sara “invited us in, in the way that she could. That was an incredible gift”. The result has been that 10 years after Sara’s death, Pat and her family still have a good relationship with Brad.
So what can we learn from these two different situations? It is understandable that when the young person has a partner or spouse tensions may arise. The partner/spouse will naturally feel that they are the person who should be in the role of primary care giver and consequently the person whom the health professionals should regard as ‘next of kin’. It is however, equally understandable if parents are alarmed at the prospect of exclusion and marginalisation under such circumstances. Nevertheless, we can see that on-going relationships, after the illness is over or the young person has died, are shaped by relationships during the illness. Bianca is no longer on good terms with her mother-in-law and her account suggests they have little if any contact; while in contrast Pat and her family are not only still in contact with Sara’s husband Brad, they have maintained a good relationship having shared the goal of supporting Sara in the fulfilment of her wishes.
Talking about the cancer and making decisions about treatment
Particular challenges relate to how parents talk about the diagnosis and prognosis and manage discussions about the cancer with this age group. Because AYAs are ‘technically’ adults there can be an assumption on the part of health professionals that they will be intellectually and emotionally mature enough to hear the information, process it and make decisions accordingly. This may well be the case; many 16 year olds are indeed mature and can deal with complex and challenging information. Nevertheless, even for the older end of the age range, to assume a direct relationship between maturity and chronological age can be misleading and parents may believe it is in their son or daughter’s best interest to act as the interface between them and the health professionals. However, this can become problematic, particularly with the older AYAs who may wish to take control of the dialogue. Examples from my research (Grinyer 2002; 2007, 2012) suggest that the degree of openness and ‘honesty’ that individual families and young people can handle varies enormously and will relate not only to pre-existing relationships but may also be affected by the fluctuating levels of maturity of the AYAs who may seem strong, independent and autonomous one minute and vulnerable and needy the next. We have already seen how fragile their newly found ‘independence’ is; likewise their emotional resilience and ability to manage the challenge of life threatening illness may be inconsistent.
Parents may understandably try to protect their son or daughter from the prognosis, this may stem from the illness having been diagnosed in early adolescence or childhood – at what point do parents begin to be open about how serious the cancer might be? Joe had been ill since he was 13 and made a number of unexpected recoveries from serious relapses over the subsequent 7 years, as a result his mother Clare had never seen the need to talk to him about the implications; as she said:
It wasn’t as if… We weren’t lying to him. You know, if he’d have asked those questions, whatever he asked we were honest with him all the way through. I wouldn’t tell him that he’s going to get better… We might say… “Well we just don’t know”, and that was the truth of it to be honest, because we didn’t know, because we were told so many times that he was really ill and he got over it, and he was well… In the end you think, well you don’t know who to believe… (Clare)
However, towards the end of his life, this lack of openness led to disagreements and even confrontations with the health professionals about what Joe ‘should’ be told and caused great distress to his parents. This raises questions about how conversations can develop and mature from those appropriate to a 13 year old to those more befitting a young adult. At what point on the trajectory might the dynamic change and the AYA take more control and responsibility and be trusted with difficult information? However, concealing the truth from AYAs does not apply only to the younger age group, in another example, Brenda refused to tell her son Miles he was dying despite the fact he was 23 at the time of diagnosis. She believed that: “it was the only way to get him through it. Had he not been confident of a cure he could never have got through the dreadful weeks of chemotherapy, radiotherapy, and isolation treatment he had to endure”. This stance led to a “constant battle” with the medical staff and despite “winning her case” she was always worried that “a well-meaning medic would tell him that his was a hopeless case”.
Clearly under such circumstances talking about the cancer takes place in a very limited and constrained way, the parents constantly afraid that distressing information might be divulged; but in this age group the AYAs are entitled to attend medical consultations without their parents and many choose to do so. This can cause great anxiety as parents may be concerned that their son or daughter will not ask the ‘right’ questions or will not understand the implications of the diagnosis. One such example is that of Steven, who at 18 was working as a heavy goods vehicle apprentice when he was diagnosed. However, he said his diagnosis of Hodgkin’s disease ‘might as well have been in Swahili I hadn’t got a clue what he meant. I thought “oh all right, yes big deal, give me a course of antibiotics” ’. Although he had not wanted his mother at the consultation when he was given the news, she was the first person he contacted afterwards and she went straight to the hospital to speak to the doctor on Steven’s behalf. This again demonstrates the fiercely protected but fragile independence, so typical of the age group, and the careful path that has to be trodden by parents who need to honour this stance while at the same time protecting their son or daughter and ensuring that they receive the best treatment and care.
Parents’ management of their own health problems
During the course of what may be a lengthy period supporting their son or daughter through cancer treatment, parents may experience ill health themselves. This can be triggered or exacerbated by the stress of the illness or it may be unrelated; nevertheless it presents an additional concern and complication that must somehow be incorporated into the already demanding and complex family situation. My work in this area, particularly in relationship to mothers’ health (Grinyer 2006) suggests that:
There is an impact on the mother’s health that results in unspecific, low-grade and chronic psychological and somatic symptoms which the mothers rank as a low priority. The mothers’ attempts to appear to be managing may serve to mask their own health needs from health professionals whose primary concern is the health of the son or daughter. (2006:311)
This is not to say that fathers are unaffected, however it tends to be the mothers who undertake the majority of emotional and physical labour associated with care and this can take a toll on both physical and emotional health. Nevertheless, there was a tendency for mothers to absorb low-grade physical and emotional ill health and prioritise their son or daughter’s care. The mothers’ illnesses were regarded by them as ‘normal’ ill health in contrast to their son or daughter’s cancer which was regarded as ‘real illness’. The mothers tended to conceal the extent of their ill health from their family and from health professionals to worry about ‘later’ when the crisis of their son or daughter’s cancer was in the past – there was ‘no space’ for them to be ill as well. This related to both emotional and physical illnesses, however, to some extent the boundary between the two under such circumstances is artificial (Grinyer 2006); even accidental injury can be caused by stress if fatigue and depression result in a lack of concentration (Charmaz 1997).
The price to be paid for such stoicism is illustrated by the account of one mother, Sue who ‘kept going’ while ignoring her own health needs during her son Paul’s illness, as she said she didn’t have the time to be ill while caring for him and described herself as “presenting a controlled front”. However, after Paul had died, and her responsibilities for caring for other sick family members had also passed, her blood pressure ‘went crazy’ and she started having chest pains. She had to take a year off work and cried for 3 months. She said: “This was the worst thing I had ever experienced.” She subsequently took early retirement on health grounds. This example illustrates well the gap between how a carer feels and how she appears, the strain subsequently resulting in emotional collapse (Lloyd 1999). We cannot know if the outcome for Sue might have been different if she had felt able to seek help for her own health needs during her period as a carer, but it is possible that she would have been able to circumvent the complete collapse she experienced had she sought and received more support for her own health needs.
So it seems that while parents’ tendency to downplay their own health problems is very understandable, it is not necessarily the most helpful strategy in the long term. If parents’ health is attended to at an early stage, this may mean that appropriate support and intervention can be accessed that may prevent ‘normal’ low-grade illnesses becoming ‘real’ and more serious illnesses. Thus it is not only in the parents’ own interests to be open about their health problems, it is also in their sick son or daughter’s interests and that of the wider family in the longer term.
This chapter has looked at a number of issues facing parents when caring for a young adult with cancer. Because cancer is relatively rare in the age group, most families will not know anyone else who has been in this position and many health professionals will not have cared for other AYAs with cancer. As a result when parents face these difficulties, tensions and disruptions to family dynamics they may believe that it is because they are failing in some way; yet it is much more likely that they arise from their son or daughter’s age and life stage. It is important therefore to emphasise that the challenges reported in this chapter by parents and their sons and daughters, are unsurprising under the circumstances. It is also unsurprising that parents’ own health may suffer and that it not only needs attending to but deserves to be attended to.
It is my hope that the personal testimonies of the parents and young people cited in this chapter can reach and ‘speak to’ those undergoing this most distressing experience, perhaps by offering a glimpse of the different perspectives – the ‘mirror image’ presented by parents and AYAs – each might understand the other better; and also for parents to know that they are not alone in their struggle and what they may perceive as their ‘failings’ if the family experiences crises or their own health is compromised is unsurprising under these circumstances. Finally, as the Teenage Cancer Trust (TCT) Parents’ Guide says:
Listen to them
Give them guidance but don’t take over
You will be amazed at how strong you can be
Apter, T. (2001) The Myth of Maturity: what teenagers need from parents to become adults, New York: W.W. Norton and Co Inc.
Brannen, J., Dodd, K., Oakley, A., and Storey, P. (1994) Young people, health and family Life, Buckingham: Open University Press.
Charmaz K. (1997) Good Days, Bad Days: The Self in Chronic Illness and Time , 2nd edn. Rutgers University Press, New Brunswick,
Grinyer, A. (2002) Cancer in young adults: through parents’ eyes, Buckingham, Open University Press.
Grinyer, A. (2006) Caring for a young adult with cancer: The impact on mothers’ health, Health and Social Care in the Community, 14 (4): 311-318.
Grinyer, A. (2007) Young People Living with Cancer: implications for policy and practice, Buckingham, Open University Press.
Grinyer, A. (2009) Life After Cancer in Adolescence and Young Adulthood: Late Effects and Long Term Survivorship, Oxford, Routledge.
Grinyer A. (2012)Palliative & End of Life Care for Children & Young People: Home, Hospice, Hospital, Oxford, Blackwell.
Lloyd L. (1999) The wellbeing of carers. In: N. Daykin &L. Doyal (Eds) Health and Work, pp. 54–70. Macmillan, London.
TCT, A Parents’ Guide: tackling teen cancer piece by piece (undated), Teenage Cancer Trust, London, UK.