Title

Defining concerns, unmet needs and support preferences for haematology cancer survivors: An exploratory study to inform intervention development

Document Type

Report

Publisher

University of Notre Dame Australia

Place of Publication

Fremantle, Western Australia

School

School of Nursing and Midwifery

RAS ID

22520

Comments

Originally published as:

Monterosso, L., Taylor, K., Platt, V., Krishnasamy, M., White, K., Lobb, E., ... Joske, D. (2016). Defining concerns, unmet needs and support preferences for haematology cancer survivors: An exploratory study to inform intervention development. Final report. Fremantle, Australia: University of Notre Dame.

Abstract

1.1 AIMS

•To establish the unmet needs and preferences for support of individuals diagnosed with leukaemia or lymphoma, 6 to 30 months post-treatment completion.

•To establish the unmet needs and preferences for support of individuals diagnosed with multiple myeloma, between 6 months and 4 years post diagnosis.

1.2 METHODS

Four focus groups were conducted; two with lymphoma and leukaemia (LL) participants, and two with multiple myeloma (MM) participants. The main topics explored in the focus groups included informational, psychological, emotional, social, practical and spiritual needs; and suggestions for key components to include in a post treatment survivorship model of care. Focus groups were digitally recorded following written consent from individual participants. Data from focus groups was transcribed verbatim and manually analysed using thematic analysis.

1.3 FINDINGS

1.3.1 Leukaemia and Lymphoma

Leukaemia and lymphoma (LL) participants found that dealing with the side effects of treatment, for which they weren’t adequately prepared, was one of the most difficult aspects of their survivorship journey. They suggested that information on the duration of side effects and what to expect would have been helpful.

1.3.2 Multiple myeloma

Many participants had never heard of multiple myeloma (MM) at the time of their diagnosis. This was difficult and in some ways contributed to a feeling of isolation. Preferences for information provision varied; some participants felt they were overwhelmed with information whereas others felt they weren’t given enough of the type of information they needed. Most MM participants searched the internet for information about their disease and as a result, felt it would be useful to have a list of reputable and reliable sites to search for information. Participants with multiple myeloma were savvy health consumers and had ideas about how they could make use of their consultation appointment times more effectively.

1.4 RECOMMENDATIONS

- A follow up appointment post-treatment completion to identify unmet needs and assist participants with the transition from active treatment.

- Provision of information on handling side effects of treatment, including what to expect, duration and ways to manage and cope.

- A list of reputable websites that patients with multiple myeloma could source for additional information.

- A package of support tailored and individualised to meet patient's preferences for information, supportive care (i.e. one-to-one or group session) and emotional support.

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