This research focussed on exploring the psychosocial needs and psychological health of young people (aged 12-24) who have been impacted by the death of a parent or a brother or sister from cancer. The qualitative study identified a number of areas of need. Five of these were common to both bereaved offspring and siblings. An additional three areas were identified for offspring. The research was conducted by CanTeen Australia, in conjunction with the University of Western Sydney. Key Points Young people who have had a parent or sibling die from cancer identified a number of needs. These needs could be grouped into 5 broad areas: support and understanding from others; being able to both express and cope with emotions; having space and time to grieve; to talk to others who have had a similar experience; and being able to spend time with family members. For young people who have had a parent die from cancer, 3 additional need areas were identified: information relating to diagnostic and prognostic issues; time out; and practical assistance. It was also found that these needs often go unmet. Overall, siblings reported that 47% of their needs were not met; offspring 43%. The areas in which unmet needs were highest related to support and understanding from others and expressing and coping with emotions. Psychological distress scores were elevated in this sample of young people. For bereaved siblings, approximately of those aged 12-17 were in the at risk/clinically elevated ranges for emotional and behavioural problems (as measured by the Strength and Difficulties Questionnaire-Total Difficulties: SDQ-TD), and 29% of 18-24 year olds were in the at risk/ clinically elevated ranges for depression (as measured by the Depression, Anxiety, Stress Scale DASS-21) - exceeding the 15-20% reported in normative data. For bereaved offspring, approximately of those aged 12-17 were in the at risk/clinically elevated ranges for emotional and behavioural problems. For those aged 18-24, 39% were in the at risk/clinically elevated ranges for depression, 50% for anxiety and 36% were in the at risk/clinically elevated ranges for stress far exceeding the 15-20% reported in normative data. Time since bereavement did not affect the number of needs or unmet needs reported, supporting the notion that the death of an immediate family member may continue to have an impact years after the event. CanTeen last updated October, 20 1
The importance of needs research Although young people, defined by the World Health Organisation as individuals 10 to 24 years of age, can be quite resilient when faced with potentially traumatic events, the death of a parent or sibling is considered one of the most stressful life events that a young person can experience - primarily because nothing, up to that point, has prepared them for the feelings of anger, sadness, loneliness, disbelief and guilt that may accompany such a loss. Young people often describe themselves as the forgotten mourners, as family and friends rally to support the grieving partner, or the grieving parents. Cancer-related deaths bring with them their own unique set of circumstances that make it difficult for young people to cope: the prognosis is often uncertain at the time of diagnosis; remission does not signal cured, and there is the ever-present fear of relapse; treatments are usually intensive with adverse side effects, and they often cause physical changes; the disease itself frequently takes a progressively deteriorating course; and dealing with the illness and the possibility of impending death may span a considerable period of time. Thus, the loss of a family member to cancer is best viewed as a series of events that occur before, during and after death, rather than as a single stressful event. It has been consistently reported that such an experience may place a young person at greater risk for depression, anxiety and other expressions of dysphoria, not only in the year following the death but indeed well into adulthood. Direct research into the psychosocial needs of these young people is important as it allows for a more detailed understanding of how young people perceive and experience the death of a parent or sibling. An important application of such knowledge is in the planning of better psychosocial intervention programs and services for this group. The study conducted at CanTeen Young people were asked about their needs in regard to the death of either their parent (n = 62), or their sibling (n = 32). Offspring participants consisted of 12 males and 50 females, with a mean age of 15. The average time since death of their parent was 2 years. Sibling participants consisted of 13 males and 19 females, with a mean age of 14. The average time since death of their brother or sister was 4 years. Five areas of need were identified for both bereaved siblings and offspring. An additional three areas were identified in relation to young people who had lost a parent to cancer. CanTeen last updated October, 20 2
Findings Overall, of the needs identified by siblings 47% were reported as unmet, and for offspring, 43%. The most salient areas of unmet needs related to support and understanding from others (siblings reported 54% of their needs as unmet; offspring 45%); and expressing and coping with feelings (siblings reported 54% as unmet; offspring 44%). For siblings, parents were considered to be the most helpful in regard to providing information and support, but 34.5% indicated a need for more of each. In the offspring sample, parents were found to be the most helpful for information, and other Members of CanTeen were the most helpful in regard to support. However, in line with the sibling participants, 37.1% indicated that they needed more of both. A description of each of the need themes is outlined below and they appear in order from most mentioned to least mentioned. Self expressed needs of bereaved siblings and bereaved offspring 1. Support and understanding from others: encompasses the need to feel supported by one s own peer group in particular, and from parents, health professionals and teaching staff. A sense of anger and frustration was induced when these were found to be lacking. I needed friends to understand, not just to tell me that it was going to be alright, not just patronise me (when mum was sick) because they couldn t deal with it. I felt like I was helping them deal with it, while I needed the help dealing with it. Female, 19, offspring I needed my friends to try and understand. When I am feeling down my friends don t get it, they want to just carry on with their own stuff, and it makes me angry when they go on about their fathers and how much fun they had at the weekend doing stuff with them. I am different from them, they haven t had to deal with anything bad in their life. Male, 14, offspring I needed my friends at school to acknowledge what was happening/had happened to my sister and my family it felt like they were just ignoring the issue, even though they probably just didn t know what to say. Male, 23, sibling I needed support from family because my dad was always at work, my mum was very emotional and very upset and I was the only one that could help. Male, 15, sibling I needed teachers at school to understand that I really couldn t concentrate on anything. It is difficult to focus on what is going on at school when your head is full of other stuff. Male, 14, offspring 2. Expressing and coping with feelings: young people expressed feeling grief, anger, confusion, guilt, depression and loneliness and indicated a need for help in processing these emotions in a healthy way. I needed something to get this anger out [that] would help. Female, 20, sibling I needed to learn to continue to have fun, to grow and develop without feeling guilty. There were times where I never thought that I would smile again, times where I thought my heart had been lost along with my sibling. I needed to laugh and be a teenager again. Female, 20, sibling I needed help in dealing with the emptiness I feel people all around me talk about their mums and it hurts to hear them say it. Female, 19, offspring I needed help in learning about grief and how to deal with it every day. I had never grieved to this extent before and I thought I was going nuts. Female, 20, offspring I needed help dealing with the depression that comes along with all the events that have happened in my life leading up to the death of my mother. I can t get rid of all the sadness and bad feelings that I have. Female, 16, offspring CanTeen last updated October, 20 3
3. Space and time to grieve: young people expressed a need to be able to grieve in their own time and space, and in their own way. I needed to be left alone and just given time by myself. I m not really one to show emotions so I preferred to cry with no-one around. Female, 14, sibling I needed time to grieve and deal I felt like I was pressured to move on. Female, 16, sibling I needed time to myself, when I m alone I can t be judged and I wouldn t have a thousand people asking me if I was okay when I clearly wasn t. Female, 19, offspring I needed to be able to grieve. I couldn t do it in front of my family I needed a comfortable environment to cry. Female, 20, offspring 4. To TAlk to people who have had a similar experience: this theme refers to the need to be able to talk with others who had been through a similar experience. There was a sense that only others who had experienced the death of a sibling or parent could truly understand and hence ameliorate the sense of isolation felt. I needed to talk to people who had actually been there, done that if you haven t been through it you really don t understand it and it was frustrating talking to people who thought they understood. Female, 14, sibling I needed to meet other people in my situation, and just talk about all stuff. Female, 17, sibling I needed to talk to other people whose parents had passed away it helped me to cope better and talk about my feelings because they knew what I was going through. Female, 13, offspring I needed to talk to people my own age who knew what I was going through it helps you feel better, that you re not alone. Female, 16, offspring 5. Time with family: young people expressed the need to spend more time with their family both before and after the death of their loved one. There was a longing for more time with their deceased sibling or parent, and a sense of loss that time can never be recovered. I needed more time alone with mum and dad. Mum and dad had a lot of support and it was hard to get them on their own. Female, 12, sibling I needed my brother of course, but we can never have him back. Male, 17, sibling I needed more time with mum. Mum wasn t sick for too long before she died, too many people became selfish and just worried about their time with her. I feel I didn t get the chance to say goodbye and bond. Female, 18, offspring I needed a mother. I was just entering my teenage years. My physiology was changing. I didn t know half the stuff I needed to. Female, 18, offspring In addition, the following 3 themes were expressed by young people who had lost a parent to cancer. 6. Information: young people expressed a need for information about cancer in general (types and treatments) and to be informed of developments in their parent s prognosis so as not to be kept in the dark in the time leading up to the death of their parent. I needed to be informed of my mother s condition, even if they were for the worse so I could prepare myself to say goodbye. Female, 16 I needed to have some information about what may happen to me. I am a woman, if my mum had breast cancer, how can I stop or minimise my chance of getting it. Female, 20 CanTeen last updated October, 20 4
I needed more information on mum s journey. And the fact she was terminal, I had no idea until 3 weeks before she died. Male, 22 7. Time out: refers to the need for occasional escapism and time out from the pressures of their parent s illness. I needed a break there were times when it just got too much and I just wanted to give up and hope it was a nightmare. Female, 19 Psychological health Bereaved Siblings Approximately 40% of 12-17 year olds were in the at risk/clinically elevated ranges on the SDQ-TD and nearly 29% of 18-24 year olds were in the at risk/clinically elevated ranges for depression (as measured by the dass- 21) - exceeding the 15-20% reported in normative data. Bereaved Offspring For bereaved offspring, 56% of those aged 12-17 were in the at risk/clinically elevated ranges for emotional and behavioural problems. For those aged 18-24, 39% were in the at risk/clinically elevated ranges for depression, 50% for anxiety and 36% were in the at risk/clinically elevated ranges for stress far exceeding the 15-20% reported in normative data. I needed time away from my family and the emotional tension. Female, 20 8. Practical assistance: young people noted a need for help with household chores and other responsibilities that they had assumed. I needed help with household chores, help dealing with family members it was my responsibility to look after the chores and pick up the pieces for everybody else and not be able to worry about myself. Female, 23 At a glance: For both groups, needs relating to support and understanding from others, and expressing and coping with their emotions were the most commonly mentioned. Bereaved siblings indicated that 47% of their needs were unmet and bereaved offspring 43%. The preliminary findings reported may be used to assist both health care professionals and concerned family members in the provision of services and support to care for young people who have experienced the death of an immediate family member. CanTeen last updated October, 20 5
Conclusions recommendations Bereaved young people expressed varied needs during this period of their lives, the most salient being the need for understanding and support (primarily from peers), assistance with dealing with their feelings, and having time and space to grieve. Importantly, the study also revealed that these needs are often not met, particularly in the areas of support and understanding from others, and expressing and coping with feelings. These findings are significant in light of previous research which suggests that young people rely heavily on avoidance and denial as ways of coping with grief, and hence may appear as though they are coping well. Young people tend not to talk about their grief, especially with their parent(s), in an effort to protect them from further pain, but this serves only to heighten their own sense of isolation. The theme of support and understanding from others was commonly mentioned in relation to both school friends and teachers, suggesting that the implementation of psychoeducation programs, within a school setting, addressing issues of chronic illness, grief and bereavement would be beneficial. The second most common need related to expressing and coping with emotions. One way to help is in the provision of both individual and family grief counselling where needed, assisting in the expression of emotionality associated with the death and providing an opportunity to learn healthy ways of coping. Honest communication surrounding the impending death of a parent or sibling would also assist the young person to prepare and to spend more time with the dying family member. This is important as several participants spoke of the regret involved in not being able to go back. Education programs that sought to inform parents and young people alike of family communication strategies, and that empowered parents to talk openly with their children would be beneficial. Further, the need to talk to others who had been through a similar experience was also a salient need and was reported by over one-third of all participants as being unmet. Given that effective peer support requires an awareness of one s own and others feelings, and the ability to constructively express such thoughts and feelings, the provision of opportunities and programs that teach young people how to do peer support may help. For bereaved offspring, practical assistance may also help to ameliorate the grieving process. In the present study this need was unique to those young people who had lost a parent to cancer, suggesting that they were undergoing a realignment with adult roles in response to their changed circumstances. Interestingly, the time that had passed since bereavement did not affect the number of needs or number of unmet needs that young people reported, supporting the notion that the loss of a parent or brother or sister may continue to have a profound impact on the individual for years after the event. Of concern is the higher than normal proportion of young people at risk for psychological distress. Thus it is imperative that intervention based programs with a mental health focus are implemented for these young people. CanTeen last updated October, 2010 6
It is hoped that needs-based research such as this can foster a greater understanding of the challenges that young people face when someone in their family dies, and alert health care professionals to areas where assistance is required in an effort to lessen the impact of this loss and promote better mental health outcomes. Recommendations Development of a psycho-education program for use in the education system, dealing with chronic illness, grief and bereavement Provision of individual and family counselling where needed Development of programs to assist in communication strategies Development and evaluation of interventions addressing self-perceived needs Development of a program that teaches young people how to do peer support Development and validation of a needs-based measure, to allow service providers to prioritise and target interventions aimed at identified needs Longitudinal research that seeks to examine the impact of the death of a family member from the palliative stage through to the post-death period For further information contact: Dr Pandora Patterson National Research & Evaluation Manager Pandora.Patterson@canteen.org.au OR Dr Fiona McDonald Research Officer Fiona.McDonald@canteen.org.au CanTeen last updated October, 2010 7