519144 research-article2014

APY0010.1177/1039856213519144Australasian PsychiatryPatterson et al.

AP

Psychiatric services

A new Australian online and phone mental health support service for young people living with cancer

Australasian Psychiatry 2014, Vol 22(2) 165­–169 © The Royal Australian and New Zealand College of Psychiatrists 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1039856213519144 apy.sagepub.com

Pandora Patterson  General Manager Research and Evaluation, CanTeen Australia, Sydney, NSW, Australia Fiona EJ McDonald  Senior Research Officer, CanTeen Australia, Sydney, NSW, Australia Peter Orchard  Chief Executive Officer, CanTeen Australia, Sydney, NSW, Australia

Abstract Objective: The purpose of CanTeen’s E-Mental Health Service for Young People Living With Cancer (YPLWC) is to meet the unique psychosocial needs of young people (12–24 years) in Australia impacted by cancer (either as a patient or family member of someone with cancer). Conclusions: This online platform will provide the primary site where all YPLWC can find information, connect with others going through a similar experience, express their feelings, utilise tools for support and access professional psychosocial support services that will meet their individual needs. The overall outcome of the service will be to ensure that the YPLWC visiting the site experience optimal psychological wellbeing. Ultimately, the service’s value will be in improving the lives of young people who engage with it and the follow-on effect that this will have on their families and communities in the long-term. Keywords:  adolescent, Australia, cancer, counselling, distress, E-Mental Health Service, internet, mental health, relatives, teenager, website

Young people and mental health Mental health problems account for around 50% of the burden of disease for young people (16 – 25 years)1 and the incidence of mental illness in young people is the highest of any age group.2 With 75% of mental illness beginning before 25 years of age, coupled with the fact that this age group is less likely to seek professional help for mental health problems,1 it is essential that we improve young people’s capacity to manage adversity and increase their opportunities for accessing professional help.3

Young people living with cancer Every year around 23,000 young people (12 – 24 years) are confronted with a cancer diagnosis, whether it is their own or that of a parent, brother or sister.1, 4–6 For these young people, life becomes overwhelmingly complicated. Marginalised and vulnerable, they are at a significantly heightened risk of developing serious and sustained mental health difficulties.7 While 9% of young people (16 – 25 years) in the Australian population experience high to very high levels of psychological distress,1 more than 50%

of young people whom have been impacted by their own or familial cancer, experience the same levels of distress (McDonald F, et al., unpublished data, 2013). These young people often feel isolated and alone, believing they are the only young person in their situation. Anecdotally, this creates another barrier to help-seeking, as YPLWC assume support would not exist for someone like them. Additionally, young people who have a family member with cancer often experience feelings of guilt about their own distress, leading them to try and handle their problems themselves. The young people who have cancer: patients Young patients face significant challenges to their health and well-being, even when treatment has ended. Corresponding author: Dr Pandora Patterson, General Manager of Research and Evaluation, CanTeen Australia, L11, 130 Elizabeth Street, Sydney, NSW 2000, Australia. Email: [email protected]

165 Downloaded from apy.sagepub.com at UNIV OF NORTH DAKOTA on May 24, 2015

Australasian Psychiatry 22(2)

Survivors often report poor quality of life, poor body image, and a loss of their sense of identity and certainty about their future.8–10 Being at a critical stage of their development, a cancer diagnosis can challenge their ability to progress their lives in relation to education, work and the formation of peer relationships, leaving them feeling isolated and left behind by other young people their age.11 Due to their unique life-stage, young cancer patients often show more complex types of psychological distress that require additional long-term, time-intensive intervention.12 In one study of adolescent and young adult cancer survivors, almost one-quarter were diagnosed with depression, anxiety and/or post-traumatic stress disorder, despite being on average 13 years beyond their diagnoses.13 Adequate psychosocial aftercare for surviving patients is essential, to ensure their the quality of life;14 however, young people with cancer are disadvantaged, particularly in terms of adequate support post-treatment,15 and report that supportive care resources are lacking in their community and/or primary health services.16

Young people who have a family member with cancer: offspring and siblings Young people who have a family member with cancer report unmet needs associated with expressing and coping with feelings such as guilt, anger, sadness, anxiety, stress and helplessness.17–19 They also report needing access to counselling services,18 to be able to talk openly without upsetting people nor feeling guilty, and to cope with the added stress on their family.20 Additionally, there are reports of post-traumatic stress,21 depression,22 somatic complaints and difficulties in peer relationships.23 Offspring and siblings who become bereaved through the death of their parent or sibling experience additional loss and grief, often feeling isolated, and experiencing loneliness and distress.19,24

Filling an important gap One-quarter of young Australians aged 14 – 25 experience a mental health problem, but only 29% of these young people contact a professional service.25 YPLWC experience higher levels of distress than their peers; thus, have a greater need for early intervention, prevention and support services. There is currently a significant gap in this area. While other organisations such as Headspace and Inspire offer support services to young people, these are not specific to YPLWC. Consequently, YPLWC often fail to recognise their mental health issues or to associate their cancer-related distress as something that could fit this label, and so do not identify with the services provided by these organisations. It is imperative to provide and promote a comprehensive service

that is targeted specifically to this group; to engage them, and to address their unmet needs and psychological distress. CanTeen’s research recommends the following: age-appropriate, psycho-oncology information; peer support; the need for counselling; and the development, or adaptation, and evaluation of psychological interventions that are responsive to YPLWC’s specific needs.18,20

Young people and technology The overwhelming majority of young Australians have access to the internet and own smart phones.26,27 Additionally, young people use the internet to seek information about mental health problems.28 A recent news article notes that: ‘Experts say apps [sic] can enhance face-to-face therapy and prevent mental illnesses from developing. The therapies are free or cheap, widely available and constantly on hand for the 3 million Australians who suffer from some form of mental disorder each year’.29 The advancement of the internet and related technology offers unprecedented opportunities to deliver online health promotion, prevention and early intervention strategies to young people.30 Many authors suggest that e-therapies assist young people with overcoming equity in both accessibility issues and the stigma that can be associated with seeking help from mental health professionals.31,32 Cancer-related services The Internet is increasingly being used for a range of online therapies for people with cancer.33–37 Recently, a cognitive-behavioural therapy online group program was developed for adolescents and young adults, following their cancer treatment.37 Adolescent cancer survivors who participated in another online intervention note that benefits included being able to interact from home, which is their ‘point of strength and comfort’.33 More recently, Sansom-Daly et al. reported on a multicentre, randomised controlled trial of a cognitivebehavioural therapy online group-based program, for adolescents and young adults, following cancer treatment.37 Young people impacted by parental cancer report being interested in online forums and instant chat for help-seeking, offering help, seeking contact outside of the website, looking for factual information and telling their stories.38 The use of teleconferencing and telephone counselling either on its own or in combination with face-to-face counselling has also been useful for people with cancer; and following their treatment, in dealing with psychosocial issues.39,40 These options are particularly beneficial for those who find accessing face-to-face support difficult, due to illness or isolation.41

166 Downloaded from apy.sagepub.com at UNIV OF NORTH DAKOTA on May 24, 2015

Patterson et al.

The E-Mental Health Service for YPLWC The E-Mental Health Service for YPLWC will see the development and implementation of a much-needed online professional psychosocial service for young people whose lives have been impacted by cancer. This service, launching in early 2014, will offer an innovative range of health promotion, prevention and early intervention strategies, to reduce the likelihood of mental health disorders in young people whose lives have been affected by cancer and those who already exhibit elevated distress levels. This platform will be a pivotal point of information and support for any young person going through a cancer-related experience, and a source of information and referral for health professionals working with this group. A Counselling Service Manager will be responsible for all aspects of clinical governance and the management of a staff of qualified counsellors with expertise in working with young people. This team will provide counselling by telephone and online: via e-mail, instant chat or in a virtual counselling room. Group counselling interventions will also be implemented both online and by telephone. Counsellors will lead online discussion forums on a regular basis, both open and topic-specific. This will be available to all YPLWC across Australia; it will be accessible 7 days per week, over extended hours. A selfadministered intervention, available by mobile application and specifically designed for YPLWC to address

their mental health needs and personal coping strategies, will also be available (Figure 1 provides the range of services). The service will be available to the target group free of charge, thus removing a common cost barrier to young people seeking help. The service has the following key objectives: 1. To raise awareness of the specific psycho social needs of YPLWC, provide information, and establish referral pathways; 2. To provide access to an online peer support community that will promote well being and reduce the risk of the YPLWC developing mental health disorders; and 3. To deliver high-quality psychosocial support services to YPLWC whom are experiencing mild-tomoderate mental health problems, including anxiety and depression. There are both challenges and opportunities for the future development of the E-Mental Health Service. It will be necessary to engage a sufficient number of users to establish a healthy, vibrant peer-to-peer community. Staff will need to engage with young people of varying ages and education levels, using a combination of communication modes, and manage the transitions between these modes. There are also potential issues concerning

Figure 1.  The E-Mental Health Service for YPLWC. E: electronic, usually in reference to online access; YPLWC: young people living with cancer 167 Downloaded from apy.sagepub.com at UNIV OF NORTH DAKOTA on May 24, 2015

Australasian Psychiatry 22(2)

anonymity and safety. Sufficient bandwidth and data allowances may be an issue, particularly for young people using their mobile phone to access the service. This can be addressed by providing text only, low data options of the service, and negotiating with telecommunication companies for provision of free access to the website. Additionally, the continued roll-out of a national Australian broadband network will provide more people with greater access.

6. Australian Bureau of Statistics (ABS). Census QuickStats. Canberra: ABS, 2011. Available at: http://http://www.censusdata.abs.gov.au/census_services/getproduct/census/2011/ quickstat/.

Conclusion

10. Zebrack B and Isaacson S. Pschosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol 2012; 30: 1221–1226.

CanTeen has a long-established reputation of striving to improve the health and mental wellbeing of YPLWC. Following significant research into the unmet needs of this group,17–19, 42, 43 the organisation has begun to strategically develop initiatives to address them. The E-Mental Health Service for YPLWC is one of these initiatives, comprising an innovative and comprehensive online platform that will provide information, peer support, a range of mental health tools and access to counselling. While it is already well recognised that young people are one of the groups that is most at risk and in need of mental health support, it is imperative to acknowledge that the large number of YPLWC are an even more atrisk sub-group. The risk for depression and anxiety demonstrate the unequivocal need for a broad, but dedicated, intervention. This service embraces a comprehensive platform specifically targeting this population; addressing their needs for information, peer and psychosocial support in an innovative, age-appropriate and clinicallyeffective way. The overall outcome of this service is to ensure that this specific group of young people experience optimal psychological wellbeing. Ultimately, the service’s value will be in improving the lives of the YPLWC who engage with it and the follow-on effect that this will have on their families and communities in the long term.

7. Young and Well Co-operative Research Centre (YAW-CRC). Engaging creativity using digital creative content production to reach, engage and connect with vulnerable young people. Victoria: YAW-CRC, 2012. 8. Kazak AE, DeRosa BW, Schwartz LA, et al. Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. J Clin Oncol 2010; 28: 2002–2007. 9. Belizzi KM, Smith A, Schmidt S, et al. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer 2012; 118: 5155–5162.

11. Barrera M, Shaw AK, Speechley KN, et al. Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer 2005; 104: 1751–1760. 12. Clerici CA, Massimino M, Casanova M, et al. Psychological referral and consultation for adolescents and young adults with cancer treated at pediatric oncology unit. Pediatr Blood Cancer 2008; 51: 105–109. 13. Seitz DCM, Besier T, Debatin K-M, et al. Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. Eur J Cancer 2010; 46: 1596–1606. 14. Van Dongen-Melman JE. Developing psychosocial aftercare for children surviving cancer and their families. Acta Oncolog 2000; 39: 23–31. 15. Thompson K, Palmer S and Dyson G. Adolescents and young adults: Issues in transition from active therapy into follow-up care. Eur J Oncol Nurs 2009; 13: 207–212. 16. Thompson K and Thomas D. A facilitated peer support and education-based survivorship group for adolescents and young adults living with cancer. Victoria: Victorian Adolescent and Young Adult Cancer Services for Cancer Australia, 2009. 17. Alderfer MA, Long KA, Lown EA, et al. Psychosocial adjustment of siblings of children with cancer: A systematic review. Psycho-Oncology 2010; 19: 789–805. 18. Patterson P, Pearce A and Slawitschka E. The initial development of an instrument to assess the psychosocial needs and unmet needs of young people who have a parent with cancer: Piloting the Offspring Cancer Needs Instrument (OCNI). Support Care Cancer. 2011; 19: 1165–1174. 19. Patterson P and Rangganadhan A. Losing a parent to cancer: A preliminary investigation into the needs of adolescents and young adults. Palliative Support Care 2010; 8: 255–265. 20. Patterson P, Millar B and Visser A. The development of an instrument to assess the unmet needs of young people who have a sibling with cancer: Piloting the Sibling Cancer Needs Instrument (SCNI). J Ped Oncol Nurs 2011; 28: 16–26. 21. Alderfer MA, Labay LE and Kazak AE. Brief report: Does post-traumatic stress apply to siblings of childhood cancer survivors? J Ped Psychol 2003; 28: 281–286.

Funding This work (E-Mental Health Service for YPLWC) was supported by the Australian Department of Health and Ageing (DoHA).

Disclosure

22. Houtzager BA, Grootenhuis MA, Hoekstra-Weebers JEHM, et al. Psychosocial functioning in siblings of paediatric cancer patients one to six months after diagnosis. Eur J Cancer 2003; 39: 1423–1432.

The authors declare that there is no conflict of interest. The authors alone are responsible for the content and writing of this paper.

23. Heffernan SA and Zanelli AS. Behavior changes exhibited by siblings of pediatric oncology patients: A comparison between maternal and sibling descriptions. J Ped Oncol Nurs 1997; 14: 3–14.

References

24. Balk DE. The self-concept of bereaved adolescents: Sibling death and its aftermath. J Adolesc Res 1990; 5: 112–132.

1. Australian Institute of Health and Welfare (AIHW). Young Australians: Their health and wellbeing 2011. Canberra: AIHW, 2011. 2. McGorry P, Parker A and Purcell R. Youth mental health services. InPsych Magazine. Australian Psychological Society, August 2006; 28: 8–12. 3. Burns J, Ellis, LA Mackenzie A and Stephens-Reicher J. Reach out: Online mental health promotion for young people. Counsel Psychother Health (The Use of Technology in Mental Health Special Issue) 2009; 5: 171–190. 4. De Vaus D. Diversity and change in Australian families: Statistical profiles. Melbourne: Australian Institute of Family Studies, 2004. 5. Australian Institute of Health and Welfare (AIHW). Australian cancer incidence and mortality books. Canberra: AIHW, 2011.

25. Australian Bureau of Statistics (ABS). National survey of mental health and wellbeing: Summary of results. Canberra: ABS, 2007. 26. Australian Communication and Media Authority (ACMA). Trends in youth media use. Canberra: Australian Government, 2013. 27. Young Action and Policy Association New South Wales (NSW). YAPA and SIMplus Mobile release: Newspoll data on young people and mobile phone use. Surry Hills, Australia: Youth Action and Policy Association NSW, 2004. 28. Burns J, Davenport TA, Durkin LA, et al. The internet as a setting for mental health service utilisation by young people. Med J Austral 2010; 192: S22–26. 29. Begley P. Treatment of mental health needs a sound application. Melbourne: The Age, 2013.

168 Downloaded from apy.sagepub.com at UNIV OF NORTH DAKOTA on May 24, 2015

Patterson et al. 30. Burns JM and Morey C. Technology and young people’s mental health and wellbeing. In: Bennett DL, Towns, S., Elliott EJ and Merrick J (eds) Challenges in adolescent health: An Australian perspective. Victoria, BC, Canada: Trafford Publisher, 2009.

37. Sansom-Daly UM, Wakefield CE, Bryant RA, et al. A systematic review of psychological interventions for adolescents and young adults living with chronic illness. Health Psychol 2012; 31: 380–393.

31. Christensen H and Hickie IB. Using e-health applications to deliver new mental health services. Med J Aus 2010; 192: S53–56.

38. Giesbers J, Verdonck-De Leeuw IM, Van Zuuren FJ, et al. Coping with parental cancer: Web-based peer support in children. Psycho Oncol 2010; 19: 887–892.

32. Rickwood DJ, Deane FP and Wilson CJ. When and how do young people seek professional help for mental health problems? Med J Aus 2007; 187: S35–39.

39. Marcus AC, Garrett KM, Cella D, et al. Can telephone counseling post-treatment improve psychosocial outcomes among early stage breast cancer survivors? Psycho Oncol 2010; 19: 923–932.

33. Cantrell MA and Conte T. Enhancing hope among early female survivors of childhood cancer via the internet: A feasibility study. Cancer Nurs 2008; 31: 370–379. 34. Ginossar T. Online participation: A content analysis of differences in utilization of two online cancer communities by men and women, patients and family members. Health Communicat 2008; 23: 1–12.

40. O’Brien M, Harris J, King R, et al. Counselling and psychotherapy research: Linking research with practice. Counsel Psychother Res 2008; 8: 28–35. 41. Gotay CC and Bottomley A. Providing psycho-social support by telephone: What is its potential in cancer patients? Eur J Cancer Care 1998; 7: 225–231.

35. O’Connor-Von S. Coping with cancer: A web-based educational program for early and middle adolescents. J Ped Oncol Nurs 2009; 26: 230–241.

42. Patterson P, Millar B, Desille N, et al. The unmet needs of emerging adults with a cancer diagnosis a qualitative study. Cancer Nurs 2012; 35: E32–40.

36. Zulman DM, Schafenacker A, Barr KLC, et al. Adapting an in-person patient-caregiver communication intervention to a tailored web-based format. Psycho Oncol 2012; 21: 336–341.

43. Patterson P, McDonald FE, Butow P, et al. Psychometric evaluation of the Offspring Cancer Needs Instrument (OCNI): An instrument to assess the psychosocial unmet needs of young people who have a parent with cancer. Support Care Cancer 2013; 21: 1927–1938.

169 Downloaded from apy.sagepub.com at UNIV OF NORTH DAKOTA on May 24, 2015

A new Australian online and phone mental health support service for young people living with cancer.

The purpose of CanTeen's E-Mental Health Service for Young People Living With Cancer (YPLWC) is to meet the unique psychosocial needs of young people ...
3MB Sizes 0 Downloads 0 Views