The Needs of Young People who have a Sibling with Cancer.

This research focussed on exploring the psychosocial needs of young people (aged 12-24) who have a sibling with cancer. The study involved interviewing young people to find out what their needs were and using this information to develop a needs survey the Sibling Cancer Needs Instrument (SCNI). The SCNI was then piloted on a sample of young people. This allowed us to examine the types of needs experienced and to determine if these needs were being met by service providers. ThIS research was conducted by CanTeen Australia, in conjunction with the University of Western Sydney. Key Points Young people who have a sibling with cancer identified a number of needs. These needs could be grouped into 10 broad areas: peer support (from friends), peer support (from those with a similar experience), expressing and coping with feelings, involvement in the cancer experience, respite and recreation, instrumental support, attention and acknowledgement for self, sibling relationship and support, information, and access to support services. The survey data revealed that 90% of young people in this sample endorsed at least one need; 75% specified 10 or more needs; and around 50% endorsed more than half of the 80 needs on the questionnaire. On average, young people endorsed approximately 39 needs each. Needs relating to peer support (similar experience), peer support (from friends), involvement in the cancer experience, and respite and recreation, were the most endorsed. It was also found that these needs often go unmet. Seventy per cent of young people in this study indicated that at least one need was currently unmet. On average, each young person reported 10 current unmet needs. The three main areas where needs were not being met were: peer support (friends), acknowledgement and attention for self, access to support services, and sibling relationship and support. For young people aged 12-17 years there was a significant positive correlation between the number of unmet needs reported and behavioural and emotional problems - as measured by the SDQ-Total Difficulties scale. That is, the more unmet needs a young person reported, the higher their score on the Difficulties scale. The more unmet needs an 18-24 year old reported in the areas of peer support (from friends), access to support services, and instrumental support, the higher they scored on depression. Nearly 30% of 18-24 year olds were in the at risk/ clinically elevated ranges for depression - exceeding the 15-20% reported in normative data. Overall, the study revealed that young people (aged 12-24) who have a sibling with cancer report a wide range of psychosocial needs. Of concern is the positive correlation between number of unmet needs and adverse mental health scores. It is hoped that the preliminary findings reported here will be used by health care professionals to develop and evaluate needs-based programs and resources to redress these unmet needs, in an attempt to ameliorate the negative effects of living with a sibling with cancer. CanTeen last updated May, 2011 1

The importance of needs research The last few decades have seen an increased focus on researching the many ways that a young person is affected by having a sibling diagnosed with and treated for cancer. These young people are immediately required to adapt to major disruptions in their family s daily life and routine, at the same time as processing the considerable emotional stress of a cancer diagnosis in their family. Many take on extra responsibilities at home with reduced contact with their parent/s who may be too busy attending appointments and visiting the hospital. Although numerous studies have investigated these burdens, relatively few studies have focused on translating this information into addressing the psychosocial needs of young people who have a sibling with cancer. Such research is important for a number of reasons: it allows for a more detailed understanding of how young people who have a sibling with cancer perceive, experience and express their needs; and it provides direct assessment of the type, number, and magnitude of these needs, and whether they have been met. An important application of such knowledge is in the planning of better psychosocial intervention programs and resources for this group, particularly as service providers move from service-led towards needs-led practice. Finally, needsbased research can also lead to an understanding of the factors that contribute to resilience in these young people, which may help to prevent or reduce the likelihood of developing long-term mental health problems. The study conducted at CanTeen In the first part of the study, young people were interviewed about their needs. Needs were identified in eight broad areas. Findings (part 1) PEER SUPPORT (FROM FRIENDS) This domain includes the need for support from one s friends. It covers the difficulties sometimes faced with such friendships because of having a sibling with cancer, and also explores the tension between wanting to be treated normally but also needing recognition that things were no longer the same as they were before. I had no social life - I needed more time with my friends Peer Support (from those with similar experiences) This domain includes the need to spend time with, learn from and feel supported by other young people who share a similar experience with cancer. Some participants indicated that young people who have been through a similar experience are better equipped to offer appropriate and effective support. I needed to talk to someone my age and who has a sibling with cancer who has been through it and understands Information This domain includes the need for information about their sibling s cancer, particularly regarding their sibling s diagnosis, treatment, its side-effects and alternatives, rehabilitation, and recovery statistics. It also includes the need to have access to information from nurses, doctors and other health professionals, that is presented in an age-appropriate way. I wasn t told everything about what was going on Expressing and coping with feelings Participants articulated the need to be able to express how they were feeling about their sibling s cancer and about its impact on their life. Participants also indicated the need for help in coping with feelings such as sadness, guilt and anger. Seeing my brother in treatment was hard I felt guilty in a way CanTeen last updated May, 2011 2

Respite and recreation Young people expressed the need to be involved in activities such as sports and social activities in an attempt to regain a sense of normality in their lives. This domain also encapsulates the need for occasional escapism and time out from the pressures of having a sibling with cancer. I felt deprived of having a social life; most kids are able to just go out but I had to run a house Acknowledgement & Attention for Self This domain includes the need for attention from immediate or extended family members. The family unit may now be under great stress, thereby reducing its capacity to give sufficient attention to healthy siblings. This domain also includes the need to have support from teachers, employers and the wider community. Everything special went to my sibling - some attention for me would have been good Involvement in the Cancer Experience Some participants identified a need to be more involved in their sibling s cancer experience and to not feel excluded from it. This means being informed about the situation, being involved in discussions, and actually helping out where possible. I needed to have the opportunity to be involved in discussions about my sibling s cancer and treatment Access to support services This domain includes the need to be informed about and connected to available support services. In particular, participants raised the need to have access to professional counselling services and to have more understanding from teachers and/or employers. I needed people to talk to about what I was going through. I didn t realise at the time but it would have made it easier Sibling Relationship and Support Participants expressed the need for help with issues involving their relationship with their sibling with cancer, and navigating any challenges in that relationship which may arise as a result of the cancer experience. My interaction with my brother was gone completely, I couldn t talk to him because there was no common ground anymore Instrumental Support This domain includes the need for support with daily living issues and practical matters, such as household chores, transport, and generally dealing with the changes at home that may arise throughout treatment and recovery. Me and my sister needed more help at home, we needed more constant support From this information, along with a review of the literature in this area and results from a survey of staff who work with these young people on their perceptions of their needs, a questionnaire was developed the Sibling Cancer Needs Instrument (SCNI) which contained 80 need questions. Seventy-one young people completed this measure, along with an assessment of their psychological well-being. CanTeen last updated May, 2011 3

Findings (part 2) At a glance: Nearly all young people (90%) endorsed at least one need 75% specified 10 or more needs Approximately 50% endorsed more than half of all 80 needs On average, 39 needs were endorsed per person 70% of the sample indicated that at least one need was currently unmet On average, participants reported 10 current unmet needs Needs/Unmet needs Young people identified both unmet needs and needs generally within each of the need domains. The peer support (similar experience), peer support (from friends), involvement in the cancer experience, and respite and recreation domains had the highest percentages of participant endorsement of needs. In relation to needs that were currently unmet, peer support (friends), acknowledgement and attention for self, access to support services, and sibling relationship and support had the highest endorsement. Nearly half (49.3%) of the young people in this sample indicated one or more unmet needs within the expressing and coping with feelings domain, 46.5% had one or more in the domain for attention & acknowledgement for self and access to support services, and 41% reported one or more in the domain of peer support (from friends). The top 10 needs and the top 10 unmet needs endorsed by participants are outlined below. NEEDS UNMET NEEDS Rank Item % Need a Item % Unmet b % Need a 1 Talk to peers with similar 66.2 Feelings that sibling may die 28.2 53.5 experience 2 Spend time with friends 64.8 Coping with added family 23.9 57.7 stress 3 To talk without feeling guilty 63.4 Talk with sibling about 23.9 54.9 feelings 4 Spend time with peers with 63.4 Open communication with 23.9 50.7 similar experience friends 5 Management of feelings/ 63.4 To talk without feeling guilty 22.5 63.4 behaviours 6 Support from my friends 60.6 Understanding from friends 22.5 56.3 7 Spend time with others affected 60.6 Management of feelings/ behaviours 21.1 63.4 8 Do things unrelated to cancer 57.7 Spend time alone with parents 21.1 44.9 9 Coping with added family 57.7 Talk openly without upsetting 19.7 44.9 stress people 10 Information about sibling s health 57.7 To feel as valued as my sibling 19.7 42.1 a percentage of participants for whom the item was a need b percentage of participants for whom the need was currently unmet CanTeen last updated May, 2011 4

Psychological health For young people aged 12-17 years there was a significant positive correlation between the number of unmet needs reported and behavioural and emotional problems - as measured by the SDQ-Total Difficulties scale. That is, the more unmet needs a young person reported, the higher their score on the Difficulties scale. There was also a strong negative correlation between more unmet needs and lower scores on the Prosocial scale of the SDQ. This indicates that the more unmet needs a 12-17 year old sibling reports, the less they engage in prosocial behaviour. Conclusions and recommendations At a glance: The majority of young people surveyed expressed Overall, the study revealed that young people (aged 12-24 years) who have a sibling with cancer report a wide range of psychosocial needs. The preliminary findings reported may be used to inform service providers in the development and evaluation of needs-based programs to redress these unmet needs, and thus ameliorate the negative effects of living with a sibling with cancer. varied needs during this period of their lives, with over 75% indicating 10 or more needs. Psychosocial areas that were most salient included the domains of peer support (similar experience), peer support (from friends), involvement in the cancer experience, and respite and recreation. These results indicate that it is important to provide support and services to these young people in order to foster greater communication and interaction with peers; to alleviate the pressures of their sibling s diagnosis and treatments by providing time out and recreational activities so that the young person regains For young people aged 18-24 years mental health was measured using the DASS-21 (Depression, Anxiety, Stress Scale) and a significant positive correlation was found between Depression scores and unmet needs in the areas of peer support (from friends), access to support services, and instrumental support. That is, the more unmet needs a young person reported in these areas, the higher their scores on the Depression subscale. Of note, nearly 30% of 18-24 year olds were in the at risk/clinically elevated ranges for depression - exceeding the 15-20% reported in normative data. a sense of normalcy in their life; and to help them feel informed and included in their sibling s cancer experience, not just a bystander. The need for both information about their sibling s cancer and available services were also highlighted as key areas, suggesting that age-appropriate booklets and or web based material would be beneficial. A psycho-educational program within the education setting that sought to inform school friends of the impact of having a sibling with cancer may help to lessen distress at school for the young person. Importantly, the study also revealed that these needs are often not met. Around 70% of participants indicated they had one or more unmet needs, and on average, young people reported 10 unmet needs. The domains with the highest endorsement of unmet needs were peer support (friends), acknowledgement and attention for self, access to support services, and sibling relationship and support. Nearly 50% of the latter domain s items were rated amongst the top 25 most unmet need items. These needs underscore the importance of enhancing the young person s capacity to both give and receive emotional support with their ill sibling. Providing a group or program where the sibling has the opportunity to both interact with their ill brother or sister, and perhaps share their feelings in a safe environment, would assist with meeting their need for improved relating. The most commonly-rated need item as unmet was for CanTeen last updated May, 2011 5

help dealing with the possibility that my sibling might die, which points to the role that psychological services could play in better supporting these young people. These findings are particularly pertinent in light of the pattern emerging from the unmet needs assessment and psychological distress scores. For both the 12-17 and 18-24 age brackets there was a positive correlation between number of unmet needs and adverse mental health scores, and a higher than normal proportion of 18-24 year old participants at-risk of psychological problems. Targeted interventions towards these areas of need are warranted. This study takes an important step towards redressing the dearth of research regarding the identification of the psychosocial needs of young people who have a sibling with cancer through direct needs-based research. Assessment of whether or not these needs are currently being met will also assist in program and intervention development, with the view to promote health and wellbeing outcomes for young people who experience the protracted illness of a sibling with cancer. For further information contact: Dr Pandora Patterson National Research, Evaluation & Social Policy Manager pandora.patterson@canteen.org.au OR Dr Fiona McDonald Research Officer fiona.mcdonald@canteen.org.au Where to next? The development of a sensitive, psychometrically rigorous unmet needs measure for young people who have a sibling with cancer will have clinical application (for example, enabling treating professionals to accurately estimate unmet needs in order to provide a tailored, relevant service and monitor the progress of the young person); and research application (forexample, in providing a reliable and valid outcome measure for evaluating the effectiveness of relevant interventions). Therefore, an important next step in the development of the SCNI as a research and clinical tool is to further examine the construct validity and reliability of the instrument. Currently, a study is underway to further assess these properties, using a broader community sample. This research is being conducted by CanTeen Australia, in conjunction with the University of Sydney. [Source: Patterson, P., Millar, B., & Visser, A. (2008). The Needs of Young with Cancer: Report on the CanTeen National Member Survey for Sibling Members. CanTeen: Australia] CanTeen last updated May, 2011 6