Maintaining psychosocial wellbeing for post-treatment haematological cancer survivors: Strategies and potential barriers

https://doi.org/10.1016/j.ejon.2018.11.011Get rights and content

Highlights

  • Post-treatment haematological cancer survivors have unique psychosocial needs.

  • Survivors reported social support as key to retaining their psychosocial wellbeing.

  • Those without social support struggled to find it from other sources.

  • Psychosocial support was often not discussed or provided within the health system.

  • Survivors would benefit from interventions to maintain psychosocial wellbeing.

Abstract

Purpose

Haematological cancers often require aggressive treatment which can cause both late and long term physical and psychosocial effects that can appear years after treatment ends. However there is a paucity of studies that focus on psychosocial issues among post-treatment haematological cancer survivors. This research aimed to explore the strategies used by haematological cancer survivors to maintain psychosocial wellbeing in the post-treatment period, and examine the barriers they identify to maintaining wellbeing.

Method

This research utilised a qualitative research design. Participants were recruited through the New Zealand Cancer Registry. Semi-structured interviews were conducted with 23 post-treatment haematological cancer survivors. A thematic analysis was conducted to analyse the data.

Results

The analysis identified three themes describing the strategies that enabled participants to maintain psychosocial wellbeing: inner strength; support from personal connections; support from health professionals/support organisations. Two themes were also identified describing the barriers to psychosocial wellbeing: barriers to utilising personal connections; barriers to utilising support from health professionals/support organisations.

Conclusions

Psychosocial support from others was essential in maintaining wellbeing for survivors. The participants who had ready support from family and friends reported needing less psychosocial support from other sources. However, those who needed more psychosocial support did not always receive it, or know where to find it. The key barriers to this type of support were informational gaps and not having a specific contact person to ask for help. Further research is needed to support the development of interventions to reduce psychosocial distress among this underserved group of cancer survivors.

Introduction

Haematological cancers are a diverse group of cancers, which differ markedly in their progression and prognosis, resulting in varying approaches to treatment and treatment intensity (National Institute for Clinical Excellence, 2003). The most aggressive therapies can cause both late and long term physical and psychosocial effects that can appear years after treatment ends (Klemm, 2008). It is therefore surprising that a review conducted by the authors (Raphael et al., 2017) found a paucity of studies that focus on psychosocial issues among post-treatment haematological cancer survivors. The limited evidence there is available demonstrates that haematological cancer survivors may experience a number of psychological and social problems such as anxiety and depression (Molassiotis et al., 2011), distress and poorer quality of life (Korszun et al., 2014).

Worldwide, haematological cancers are the fourth most diagnosed cancer in economically developed countries (Smith et al., 2011) and in New Zealand, where the study presented in this paper is set, approximately 1500 people are diagnosed with haematological cancer each year (Ministry of Health, 2014). A key issue for post-treatment survivors is that they are less likely than those in treatment to have frequent contact with health professionals who may be able to monitor and assist with concerns (Parry et al., 2010). Furthermore, there is evidence that limited attention is paid to psychosocial needs during follow-up appointments (Recklitis and Syrjala, 2017). Therefore it is important to identify those factors that affect psychosocial wellbeing for post-treatment survivors. The aim of this research was to explore the strategies used by haematological cancer survivors to maintain psychosocial wellbeing in the post-treatment period, and examine the barriers they identify to maintaining wellbeing. For the purpose of this study post-treatment haematological cancer survivors are considered those who had completed treatment and were currently in remission.

Section snippets

Sample

Ethical approval for this research was granted by the Southern Health and Disability Ethics Committee. (Ref: 15/STH/82). Participants were recruited through the New Zealand Cancer Registry (NZCR). The NZCR provided a data base with the names and addresses of all people diagnosed with a haematological cancer between July 2007–July 2015. Recruitment was targeted at those who had finished their primary treatment within 5 years or less. This period was chosen because it is within this time frame

Results

Interviews were conducted with 23 participants from all around New Zealand (Table 1.). Participants ranged in age from 33 to 77 years. The majority of participants were NZ European (52%), and had Non-Hodgkin's Lymphoma (61%). Participants reported being between two and eight year's post-treatment (mean 4.1 years) at the time of the interview. Eighteen participants fell within the previously discussed 0–5 year post-treatment range, and there were five participants who had completed treatment 6–8

Discussion

This study explored the strategies haematological cancer survivors use to maintain psychosocial wellbeing in the post-treatment period, and also examined the barriers they face when trying to maintain wellbeing. This paper makes an important contribution to understanding the psychosocial issues experienced by post-treatment haematological cancer survivors and their perceptions of the support they need to deal with these issues. Overall, we identified a gap in current support, particularly for

Conclusion

Haematological cancer survivors have their own set of unique psychosocial needs that carry through to the post-treatment period. Many of the participants in this study had ready support from family and friends, and those with strong support from family and friends reported needing less psychosocial support from other sources. However, those who needed more psychosocial support did not always receive it, or know where to find it. The key barriers to this type of support were informational gaps

Conflicts of interest

We wish to confirm that there are no known conflicts of interest associated with this publication and there has been no significant financial support for this work that could have influenced its outcome.

References (36)

  • R.J. Chan et al.

    Survivorship care provision for patients with hematologic malignancies: the quest for quality evidence

    Cancer Nurs.

    (2015)
  • C. Dingley et al.

    Inner strength in women recovering from coronary artery disease: a grounded theory

    J. Theor. Construct. Test.

    (2001)
  • C. Dingley et al.

    The role of inner strength in quality of life and self-management in women survivors of cancer

    Res. Nurs. Health

    (2014)
  • R. Egan et al.

    Perspectives on psychosocial and spiritual cancer support services in New Zealand

    J. Psychosoc. Oncol.

    (2013)
  • Girgis A and Lambert S. Caregivers of cancer survivors: the state of the field. Cancer Forum 33:...
  • M.M. Hennink et al.

    Code saturation versus meaning saturation: how many interviews are enough?

    Qual. Health Res.

    (2016)
  • H. Kattlove et al.

    Ongoing care of patients after primary treatment for their cancer

    CA A Cancer J. Clin.

    (2003)
  • 1

    PhD Student, School of Nursing, The University of Auckland.

    2

    Research Fellow, School of Nursing, The University of Auckland.

    3

    Professor of Health Sciences, School of Nursing, The University of Auckland.

    View full text