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Table 2 Unmet needs themes (frequency and description)

From: Impact of individual background on the unmet needs of cancer survivors and caregivers – a mixed-methods analysis

 n%Codebook Description
1. Physical39120.2Needs and issues experienced in or affecting the body, including pain, symptoms, sexual dysfunction, and care of body (such as diet, exercise, and rest).
2. Financial864.4Needs related to money, insurance, and the affordability of needed services and products.
3. Education/information57029.4Needs related to unanswered questions and the lack of knowledge regarding what to expect as a cancer survivor, follow-up care, self-care, cancer and health research, and cancer risks, causes, and prevention.
4. Personal control301.5Needs related to an individual’s ability to maintain autonomy in terms of the physical self (sexual function, evacuation, and ambulation) and the social self (disclosure about cancer and ability to make plans and socialize). Also includes wishes to return to “normal” and finding a “new normal.”
5. System of care763.9Needs related to the health care system, including constraints, flaws, and limitations that affect early detection, diagnosis, treatment, follow-up care, continuity of care, and inadequate response from health care providers.
6. Resources64933.5Needs related to availability and access to supplies, equipment, therapies and medications (including alternative and complementary), and transportation services.
7. Emotions/mental health37919.6Needs related to psychological issues, including fear (recurrence, new cancers, death, and dying), depression, anxiety, and negative feelings (mistrust toward body, anger, and guilt).
8. Social support301.5Needs related to psychosocial and interpersonal issues, including intimacy, access to support groups, opportunities to use one’s own experiences to help others, and participation in social situations.
9. Societal80.4Needs revealed from respondents’ commentary about conditions and issues related to society’s response to cancer, including social norms, discrimination, misinformation, policies, and resource allocation (insurance coverage).
10. Communication1487.6Needs related to engaging in discourse (talking) and information exchange (explaining) with others (including patients and doctors and patients and caregivers) and medical providers regarding cancer, cancer experience, and reconciliation with others.
11. Provider relationship1799.2Needs related to trust in health care providers, including decision-making, follow-through, follow-up, and support.
12. Cure47424.5Needs related to a wish for a cure for cancer and hopes for effective treatments (including through alternative medicine) for one’s self and for others.
13. Body image70.4Needs related to negative perception of body, including feeling unattractive and/or ashamed and loss of trust in body.
14. Survivor identity10.1Pertains to the respondent either explicitly identifying or not identifying as a cancer survivor because the respondent does not like the term “survivor” or feels that he or she has not reached a specific milestone to be called a survivor (e.g., not still in treatment or living a specific number of years since the diagnosis).
15. Employment281.4Needs pertaining to maintaining or obtaining a source of income that is appropriate given the cancer experience.
16. Existential110.6Needs pertaining to attaining peace in life and spirituality and making sense or meaning of the cancer experience.