- Title
- Hearing the voices of Australian thyroid cancer survivors: qualitative thematic analysis of semi-structured interviews identifies unmet support needs
- Creator
- O'Neill, Christine A.; Carlson, Melissa A.; Rowe, Christopher W.; Fradgley, Elizabeth A.; Paul, Christine
- Relation
- Thyroid Vol. 33, Issue 12, p. 1455-1464
- Publisher Link
- http://dx.doi.org/10.1089/thy.2023.0080
- Publisher
- Mary Ann Liebert
- Resource Type
- journal article
- Date
- 2023
- Description
- Background: Most thyroid cancer survivors regain their physical health-related quality of life, but psychological and social deficits persist. The nature of these detriments remains poorly understood and they are insufficiently captured by survey data alone. To address this, qualitative data exploring the breadth and depth of thyroid cancer survivors' experiences and priorities for supportive care are required. Methods: Twenty semistructured interviews were undertaken with a purposive, maximum variation sample of thyroid cancer survivors. Interviews were transcribed verbatim and coded independently by two researchers. A hybrid model of inductive and realistic codebook analysis was undertaken with themes developed. Results: Patient experiences centered around three themes: (1) impact of diagnosis and treatment, (2) thyroid cancer does not happen in isolation, and (3) role of clinicians and formalized support structures. The word “cancer” had negative connotations, but for many, the reality of their experience was more positive. Despite feeling “lucky” at the relative low-risk nature of thyroid cancer, many patients reported fatigue, weight gain, and difficulty returning to usual activities; concerns that were largely dismissed or minimized by clinicians. Few were offered any support beyond their treating doctors; where patients attempted to access formalized supportive care, little was available or appropriate. Life stage and concurrent family and social stressors greatly impacted patients' ability to cope with diagnosis and treatment. Addressing thyroid cancer in isolation felt inappropriate without appreciating the broader context of their lives. Interactions with clinicians were largely positive, particularly where information was communicated as a means of empowering patients to participate in shared decision-making and where clinicians “checked in” emotionally with patients. Information about initial treatments was largely adequate but information on longer term effects and follow-up was lacking. Many patients felt that clinicians focused on physical well-being and scan results, missing opportunities to provide psychological support. Conclusions: Thyroid cancer survivors can struggle to navigate their cancer journey, particularly with regard to psychological and social functioning. There is a need to acknowledge these impacts at the time of clinical encounters, as well as develop information resources and support structures that can be individualized to optimize holistic well-being for those in need.
- Subject
- thyroid cancer; health-related quality of life; thyroidectomy; cancer survivorship
- Identifier
- http://hdl.handle.net/1959.13/1494018
- Identifier
- uon:53681
- Identifier
- ISSN:1050-7256
- Language
- eng
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