In the near future, almost every family in Ireland will be touched by cancer. The National Cancer Registry of Ireland (NCRI) expects projections in cancer incidence will result in almost 50,000 newly diagnosed cancer cases in 2020.¹ Increasingly, cancer patients are spending less time in the clinical environment, post-operative recovery is being shortened, and chemotherapy and radiotherapy treatments are commonly delivered in the outpatient setting. This results in less time being spent with healthcare professionals and more time being spent at home with family and friends. 

Family members are a vulnerable population often neglected by the healthcare system. Many family members do not have access to the expertise of oncology healthcare professionals within the clinical environment. They are reliant on what the patient or next of kin tells them, they have no medical knowledge, no training to provide physical or emotional care and they are very often unable to address their own needs.² Importantly, this may result in a negative cycle.³ If family members have unmet needs, they will be unable to meet the patient’s needs.⁴ If the wellbeing of family members continues to be unmet, ultimately, it is the patient who will suffer.

This qualitative study was performed as part of an MSc in Psycho-Oncology. The aim was to identify possible gaps in the Cancer Information Service (CIS) delivery, in particular the telephone helpline, and further enhance the support offered to family members of cancer patients. Six nurses accepted an invitation to participate in the study. Data was collected and analysed using semi-structured interviews and content analysis.

The role of the cancer helpline

Since 1983, the Cancer Information Service (CIS) has been open ‘to anyone concerned about cancer’, including the general public, the worried well, cancer patients, their family and friends, as well as healthcare professionals. The CIS aims to provide accurate, up-to-date, appropriate information and emotional support on any aspect of cancer. There are several benefits to the free-phone telephone helpline: it is not limited by geography or finances and it ensures a level of confidentiality and anonymity that no other service can provide.⁵ In 2011, there were over 22,000 enquiries to the CIS; one quarter of these calls were from family members of diagnosed patients. 

Much of the literature on cancer telephone helplines to date has examined who uses the services. Marcus et al⁵ examined the benefit of the National Cancer Institute’s cancer information service (US), Jefford et al³ performed a study within the Cancer Council of Victoria (Australia) focusing on patient needs. Reubsaet, Lechner and DeVries⁶ studied the needs of callers in general to the Dutch cancer helpline, and Manning and Quigley⁷ performed a similar study within the cancer information service in Northern Ireland. However, no study has specifically examined the needs of family members using the context of a cancer helpline. 

In 2006 the National Cancer Forum recommended that the Health Service Executive (HSE) should ensure that access to comprehensive psycho-oncology and psychosocial support is provided for cancer patients and their families.⁸ Unfortunately services in Ireland for family members affected by cancer are limited. The CIS is free, accessible, confidential and open to ‘anyone concerned about cancer’. It is the only service that is widely accessible to family members of cancer patients. 

In order to understand the service provided by the CIS, it is important to distinguish between counselling and communication using counselling skills. The CIS nurses engage in the ‘helping relationship’ and possess Rogerian counselling skills.⁹

These skills are also referred to as the ‘core conditions’; empathic understanding, respect and congruence. Terms such as ‘active listening’ are commonly used by nurses to describe these skills. Communication skills are the cornerstone of the CIS. These skills have the power to reduce fear and anxiety, increase trust and confidence, reduce uncertainty, enhance a sense of control and promote psychological adjustment.¹⁰

However, in the current healthcare system, family members rarely have the opportunity to engage with healthcare professionals and benefit from these skills. The telephone helpline bridges that gap. The nurses in the CIS are completely reliant on their own communication skills. Unlike a normal medical consultation, they cannot see the caller, they do not have access to the patient’s medical notes, they must follow the caller’s agenda and, of course, they are dependent on what the caller decides to tell them. Allowing the patient, or family member, to prioritise issues ensures that they set the agenda.¹¹ This is what Brennan refers to as good, patient-centred communication.¹²

Significance of social support

According to Cobb,¹³ “social support is information that leads individuals to believe that they are cared for and loved, are esteemed and valued, and belong to a network of communication and mutual obligation”. In 1984, Thoits declared that social support buffers the impact of life stress.¹⁴ Studies began to emerge stating that patients who were satisfied with the level of support they received from family members were significantly less anxious and depressed and more likely to adjust to their illness.¹⁵ To date, research has shown that social support positively influences the patient physiologically, psychologically and behaviourally.¹⁶

The role of the family includes providing physical care, emotional support, informational support, shared decision-making responsibility, financial and social responsibilities, adapting to change and maintaining stability within the family unit.¹⁷ Several challenges face family caregivers, including family functioning, communication issues within the family and with healthcare professionals, and information issues, such as not wanting to ‘bother’ the healthcare professionals. 

Moreover, insufficient resources, lack of planning and lack of continuity of care within the healthcare system are further examples of the barriers many caregivers are faced with on a daily basis.¹⁸

Most researchers agree that there are three main forms of social support available; practical, informational and emotional.¹² The enormity of these responsibilities cannot be over emphasised and it is not surprising that caregivers regularly suffer from uncertainty about the future, communication issues, lack of support, and a fear of loneliness, helplessness and disruption to their lifestyle.¹⁹ Caregivers suffer physically, psychologically, socially and spiritually and they commonly state that they lack support in at least one of these key areas of their lives.²⁰ Considering that a patient’s well being is positively enhanced by the perceived level of social support they receive²¹ it is likely that future research will further indicate the vital role social support plays in the patient’s welfare.²²

Findings and recommendations

The findings of this qualitative were presented in three main themes. For the purpose of this article, I have focused on key findings:

Responding to the family discussed the role of the CIS in meeting the support needs of family members, as well as reflecting on the benefits of the service and any gaps perceived in it. Particular emphasis was placed on the communication skills of the participants as a benefit of the service.

“… it can’t be emphasised enough I suppose, that you’re actually providing support from the minute you answer the call in terms of somebody listening to them… that’s the core role…”

The participants seemed particularly proud of the service they provide and clearly portrayed the unique role the helpline plays in meeting the support needs of family members. 

“You know, to have that anonymity… and the confidentiality of the phone, to be able to just talk to somebody. To be able to verbalise their thoughts, is a huge release for any person…that’s a service that we do offer.” 

However, the study underscored the independent structure of the CIS; there appeared to be frustration with the wider healthcare system and this, in turn, exposed the limitations of the CIS. 

“It’s not a gap in our service but I wish that… there was more counselling available and more psycho-oncology services in all the hospitals.”

These findings highlight a real potential for the CIS, HSE and other voluntary bodies to work alongside each other to provide a more comprehensive service for patients and their families. McAuliffe and Joyce propose that in an Irish setting, good healthcare services exist at local level while highly technological and scientific procedures exist at national level.²³

This model has been applied to the Australian Cancer Information Service, ensuring psychosocial care is delivered at a national level. Cancer nurses and allied professionals staff the service. Callers are individually assessed and their psychosocial issues categorised according to a level:

• Level 1 psychosocial issues are addressed by the helpline staff
• Level 2 are referred to appropriate support groups and centres
• Level 3 and 4 are referred to specialist counselling services attached to the helpline
• Level 5 are referred to an external mental health professional.²⁴

The inadequate co-ordination of services in Irish healthcare, both mainstream, complementary and community based is a major weakness.²⁵ However, this model could be applied to an Irish setting considering that the CIS is already in place and support groups, centres, counselling services and psycho-oncology services already exist throughout the country. 

Contextualising support needs summarised the three main support needs of family members – emotional, informational and practical. This finding also explored how the CIS meets these needs.

“It’s a complete package of trying to give the right information in the right way and sometimes it’s not actually even about the information. Sometimes it could be just a supportive, caring voice on the phone when someone is distressed.” 

The participants reported that these needs often overlap and were difficult to define. Lastly the participants exposed the emotional element of their work and the significance of their communication skills.

“I suppose I would see my role in being as supportive as I can be to that person, to that caller and I suppose for me support is, you know, it involves the emotional support; it involves the informational support; it’s all tied up together.”

The CIS includes the National Cancer helpline in Ireland and this is the first study to be performed using the telephone helpline. It is hoped that in addition to achieving the study’s aims, this study has also demonstrated the usefulness of (a) performing a study within the context of the CIS and (b) highlighted the potential for further studies. 

Assessing the emotional impact produced some conflicting results around the significance of social support and the role of family dynamics. The participants revealed the depth of the support needs of family members and the emotional element of their work.

“Sometimes they just need emotional support at that very minute, they need to cry, they need to just release what pent up emotions they may have had.”

The participants clearly understood the complexity of social support, the significance of family dynamics and the emotional impact of a cancer diagnosis on family members. Some participants possessed particular insight into the general impact of cancer on the family, but most recognised the family’s need for support and the role of the helpline in meeting those needs, particularly at the end of life. 

“We get a lot of calls like that, you know, how to manage patients at home.”

It is well acknowledged that caregivers require the greatest amount of information and support when the patient is discharged home at the end of life.²⁶ The Irish Cancer Society’s Night Nursing service is acknowledged by the Department of Health in the Report of the National Advisory Committee on Palliative Care,²⁷ but perhaps there is also a place for the Society, namely the CIS, to work alongside organisations such as the Irish Hospice Foundation and the Care Alliance to meet the support needs of family members of cancer patients, specifically at the end of life. 

Conclusion

Family members have a right to their own support, their experience should be considered independently of the patients and they too should be recognised as legitimate ‘care recipients’.² In 1976, Cassel stated that ‘‘it seems more feasible to attempt to improve and strengthen the social supports rather than reduce the exposure to stressors.’’²⁸ While considerable emphasis is placed on cancer prevention programmes worldwide, projections confirm that cancer incidence is likely to increase in the future.¹ Now is the time to invest in the psycho-social wellbeing of cancer patients and their families. It is hoped that this study has contributed to this.  

References

1. Trends in Irish cancer incidence 1994-2002 with predictions to 2020. National Cancer Registry of Ireland 2006. Retrieved from www.ncri.ie/pubs/pubfiles/proj_2020.pdf
2. Blum K, Sherman DW. Understanding the experience of caregivers: a focus on transitions. Seminars Oncol Nurs 2010; 26(4): 242-258
3. Jefford M, Black C, Grogan S et al. Information and support needs of callers to the cancer helpline, the Cancer Council Victoria. Eur J Cancer Care 2004; 14: 113-123
4. Surbone A, Zwitter M. Communication with the cancer patient, information and truth. Ann NY Acad Sciences. Academy of Sciences, New York 1997
5. Marcus AC, Garrett KM, Kulchak-Rahm A et al. Telephone counselling in psychosocial oncology: a report from the cancer information and counselling Line. Patient Education and Counseling 2002; 46: 267-275
6. Reubsaet A, Lechner L, DeVries H. The Dutch cancer information helpline: experience and impact. Patient Education and Counselling 1996; 28: 149-157
7. Manning DL, Quigley P. Understanding the needs of people using a cancer information service in Northern Ireland. Eur J Cancer Care 2002; 11: 139-142
8. A strategy for cancer control in Ireland. National Cancer Forum and Department of Health and children. The Stationary Office; Dublin, 2006
9. Nelson Jones R. The theory and practice of counselling. Cassell publishing; London, 1995
10. Baile WF. Communication and interpersonal skills in cancer care. (Audio podcast) 2010. Retrieved from www.ipos-society.org/education/core_curriculum/en/Baile_comm/player.html
11. Twycross R. Introducing palliative care. 4th ed. Radcliffe Medical Press; Oxford 2003
12. Brennan J. Cancer in context: A practical guide to supportive care. University Press; Oxford 2004
13. Bloom JR. The role of family support in cancer control. In: Baider L, Cooper CL, Kaplan De-Nour A (eds). Cancer and the family. 2nd Ed. John Wiley & Sons LTD; Chichester 2000: 55-68
14. Thoits PA. Explaining distributions of psychological vulnerability: Lack of social support in the face of life stress. Social Forces 1984; 63(2): 453-481
15. Neuling SJ, Winefield HR. Social support and recovery after surgery for breast cancer: Frequency and correlates of supportive behaviours by family, friends and surgeon. Soc Sci Med 1988; 27(4): 385-392 
16. Keeling DI, Price PE, Jones E et al. Social support: some pragmatic implications for health care professionals. J Adv Nursing 1996; 23: 76-81
17. Lederberg MS. The family of the cancer patient. In: Holland JC (ed).Psycho-Oncology. University press; Oxford 1998: 981-991
18. Hudson PL, Aranda S, Kristjanson LJ. Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. J Palliative Med 2004; 7(1): 19-25 
19. Hinds C. Suffering: a relatively unexplored phenomenon among family caregivers of non-institutionalized patients with cancer. J Adv Nursing 1992; 17: 918-925
20. Glajchen M. The emerging role and needs of family caregivers in cancer care. J Supportive Oncol 2004; 2(2): 145-155
21. Helgeson VS, McUmber AL. Social environment and cancer. In: Holland JC, Breitbart WS, Jacobsen PB et al (eds). Psycho-Oncology. 2nd Ed. Oxford University Press, New York 2010
22. Kiecolt-Glaser JK, Robles TF, Heffner KL et al. Psycho-oncology and cancer: psychoneuroimmunology and cancer. Eur Soc Med Oncol 2002; 13(Suppl 4): 165-169
23. McAuliffe E, Joyce L. A healthier future? Managing healthcare in Ireland. Institute of public administration; Dublin 1998
24. Hutchison SD, Steginga SK, Dunn J. The tiered model of psychosocial intervention in cancer: A community-based approach. Psycho-Oncol 2006; 15: 541-546
25. Department of Health and Children. Report of the expert group on resource allocation and financing in the health sector. The Stationary Office, Dublin 2010
26. Dubenske LL, Wen K-Y, Gustafson DH et al. Caregivers’ differing needs across key experiences of the advanced cancer disease trajectory. Palliative and Supportive Care 2008; 6: 265-272
27. Department of Health and Children. Report of the National advisory committee on palliative care. The Stationary Office, Dublin 2001
28. Thoits PA. Conceptual, methodological, and theoretical problems in studying social support as a buffer against life stress. J Health Soc Behav 1982; 23: 145-159