Design

Meta-synthesis is a rigorous research method used to analyze and synthesize the results of existing qualitative research and construct high-order meanings by identifying overall themes [19].

This study used Thomas and Harden’s theme analysis method [20]. Through the analysis of the content characteristics of the literature, the subject concepts are extracted, and the significance and essence related to the research are analyzed and summarized. The process of data extraction and integration includes coding, creating descriptive theme and constructing analytical theme.

Database and search strategy

We searched PubMed, EMBASE, Web of Science, MEDLINE, CINAHL, SinoMed (China), Chinese Citation Database (CNKI), and Wanfang Data (China) in November 2023, and updated the search on 10 November 2023. After preliminary testing, three key concepts were finally identified, including self-advocacy, tumor, and qualitative research. Keywords/search terms were extracted from the three key concepts. Then we used Medical Subject Titles (MeSH) and online synonyms to search for synonyms that derive the keywords. We used a combination of subject terms and free words as search strategies. Additionally, we included relevant references from the identified studies through a retrospective approach. S3 Appendix shows search terms in full, including free text and MeSH terms.

Selection: Inclusion and exclusion criteria

Literature screening based on the established acceptance standards(see Table 1).

Download:

• PNG
  larger image
• TIFF
  original image

Table 1. Inclusion and exclusion criteria.

https://doi.org/10.1371/journal.pone.0321719.t001

Data screening and extracting

The retrieved literature was imported into EndNote X9, and duplicates were removed by software check. The titles and abstracts of all included literature were screened by author 1 (LJL) based on inclusion criteria. Author 4(KJZ) independently screened and randomly selected 10% of titles and abstracts to check consistency. author1(LJL) and author3(CXF) then read the full text of all potentially eligible papers and, after discussion, finally determined the included literature.

We developed a data extraction proforma, which included: author, country, year, research purpose, aims, sample size, analysis method, and main results. Data extraction was completed by author 1, and author 2 checked the accuracy. Any discrepancies were resolved through discussion until consensus was reached.

Data analysis and synthesis

Data analysis was divided into three stages: (1) Two researchers analyzed the included literature. After extracting the relevant content of “cancer patients ‘experiences of self-advocacy” in the literature results section, the two researchers analyzed the extracted relevant content verbatim; (2) Another study compared and integrated the descriptive theme proposed by the two researchers previously to form the final descriptive theme; (3) After one researcher repeatedly thought and discussed the descriptive theme, more abstract topics began to appear. Based on these topics, the research team conducted further discussions and reviews to determine the final analytical theme. All analyses were performed using Word and Excel files.

Quality appraisal

The Critical Appraisal Skills Programme Qualitative Studies Checklist [21] was applied by two authors to access the quality the included studies independently. The evaluation content involves a total of 10 aspects, and each item is evaluated as “yes”, “no”, “unclear” and “not applicable”. If any differences arose, they were discussed and sent to a third reviewer (if unresolved after discussion) to obtain a consensus. Although one included study scored only 7 points, considering the small number of research literature, it was finally decided to include it. Detailed quality appraisal results are described in S7 Appendices.

Study characteristics

The search identified 666 papers of which 185 were duplicates, and 414 citations were excluded after title and abstract screening. A total of 67 studies were reviewed in full, and 60 articles were excluded at this point for the specific reasons. Our search updated on February 5, 2025, found no studies that met the criteria included. In total, 7 studies were included in this review (see Fig 1). All research was published between 2013 and 2023, with six studies done in America [22–27] and the other done in China [16]. Table 2 describes the features of the included studies.

Download:

• PNG
  larger image
• TIFF
  original image

Fig 1. PRISMA flow diagram for included studies.

https://doi.org/10.1371/journal.pone.0321719.g001

Download:

• PNG
  larger image
• TIFF
  original image

Table 2. Characteristics of included studies.

https://doi.org/10.1371/journal.pone.0321719.t002

Methodological quality

The evaluation of each study’s quality is presented in S7 Appendix. The CASP checklist scores of the papers ranged from 7 to 10. Most studies clearly stated the research aims and results and used qualitative study designs appropriately. However, the CASP results showed that the researcher and patient relationship was not elaborated in most included studies (85.7%), reducing the study quality. The description of the research results in the included studies conformed to the specifications, and the overall quality was above medium and less affected.

Meta-synthesis

This study synthesised the results of a qualitative study of 144 cancer patients, generating three themes (benefits, challenges and external environmental support) and seven sub-themes (gain confidence, improve self-management ability, Interaction and share, lack of awareness, obstacles, health system support and social support). Fig 2 represents the thematic framework.

Download:

• PNG
  larger image
• TIFF
  original image

Fig 2. Map of meta-themes and sub-themes.

https://doi.org/10.1371/journal.pone.0321719.g002

Pay attention to the positive power of self-advocacy and expand the scope of application

According to the results of this study, self-advocacy can build patients ‘confidence, help them understand cancer with a more positive attitude, proactively collect relevant data, dare to express their demands, and thus choose appropriate treatment plans according to their own heart [16,22,25,27]. The findings of this review highlight that self-advocacy facilitates symptom management, promotes mental health, improves quality of life, and facilitates patient participation in medical decision-making for cancer patients. Our findings are also consistent with some quantitative studies [11,29,30]. Simply knowing how to manage and live with their symptoms was not enough for patients; they had to internalize those abilities and, in so doing, infuse their personal values and beliefs into their symptom management processes. We need to pay attention to the positive experience of patients’ self-advocacy and stimulate the inner strength of the individual. In the process of self-advocacy, patients not only improve their self-management abilities and gain self-identification but also guide other patients to self-advocacy by sharing their experiences, and passing on positive power to others while also gaining accomplishment, forming a virtuous cycle. As a result, patients ‘sense of self-efficacy has been improved, and self-advocacy has been further promoted [16]. Research showed that organizing regular patient exchange meetings can help patients gain skills, and emotional and information support and is one of the important ways to spread positive power [31,32]. It’s recommended that hospitals set up special exchange meetings for self-advocacy patients to enhance patient enthusiasm and expand the scope of the application of self-advocacy. At present, the scope of self-advocacy is limited. Most of the literature included in this review comes from the United States, and it is recommended to be applied in other countries and regions in the future to obtain more experience and evidence.

Reduce obstacles and optimize the way of participation

The findings of this study emphasize that there are also obstacles to the self-advocacy process, including patient, family, and medical system factors. However, affected by gender, personality, education level, and cultural differences, patients’ feelings of self-advocacy are different. Some patients fully trusted her provider, others had learned to be more skeptical [27]. This study found that the awareness of self-advocacy of patients from rural areas, low education level and old age was weaker [16]. In fact, these findings are congruous with the results from quantitative studies. Kolmes et al. [33] showed a study indicated that the level of self-advocacy was higher in women than in male patients. The probable reason for this is that female patients are better at expressing themselves, whereas males get in the way and lack expression of their claims. There are other reasons that some men concerned that their partners may have negative reactions and impacted their ability to support their families [24]. In addition, a survey showed that patients who are outgoing, confident and have a strong sense of self-awareness and responsibility are more likely to achieve self-advocacy [34]. Studies showed that black female cancer patients tend to remain silent about their concerns [35,36]. In addition, in the social and cultural context of China’s “family-oriented”, family members are worried that patients will learn more about the disease, which will increase their ideological burden and require medical staff not to tell them, resulting in patients lacking access to knowledge [16].

In addition, the professional level of medical staff, attitude towards patients, and relationship with patients are also important factors in self-advocacy [16,27,37]. Research showed that some medical staff has a weak sense of “patient- centered” [16]. If the medical staff doesn’t proactively inform the patient, the patient doesn’t even know that he has the right to self-advocacy. Influenced by Chinese traditional thought, patients believed that questioning doctors during treatment meant cooperating with doctors, and relied more on the medical team for fear of damaging the doctor-patient relationship [16]. The impatient and perfunctory attitude of the medical staff aggravated the patient’s nervousness and fear, and they dared not express the patient’s demands. However, the implementation of self-advocacy also conflicts with the busy clinical work and the lack of easily accessible self-advocacy resources. Studies showed that interventions through entertainment aids and serious games can encourage patients to actively express their wishes and improve their level of self-advocacy [29,38,39]. It’s suggested that in the future, more large-sample, multi-controlled long-term clinical trials can be carried out through recreational methods to provide more reliable evidence for the implementation of self-advocacy. In addition, oncology nurses play an important role as patient advocates in promoting patient self-advocacy [15]. Oncology nurses should encourage patients and their families to actively participate in healthcare decision-making to meet their preferences and needs. It’s recommended to increase the clinical medical staff’s attention to self-advocacy, evaluate patients ‘level of self-advocacy, and provide more support to patients with low levels of self-advocacy.

Strengthening social awareness and improving support systems

On the one hand, the encouragement, companionship and support of family and friends are the spiritual support for patients to live bravely. It is suggested that medical staff should encourage patients to communicate with their family and friends to express their ideas and needs, so as to get more help. Male patients, in particular, were worried that their partners, jobs, and social status would be affected, so they dared not truly express their thoughts and needs [24]. At the same time, medical staff should pay attention to the positive impact of self-advocacy on cancer patients and create an equal and open doctor-patient communication atmosphere. This requires medical staff to continuously improve their professional skills, actively communicate, and listen patiently. On the other hand, self-advocacy organizations and support systems are an important way for cancer survivors to access health information and resources, as well as an important means of promoting self-advocacy among survivors. Research has developed a self-advocacy training program, the Cancer Survival Toolbox, to teach cancer survivors how to self-advocacy to meet their needs and preferences [40]. The American Cancer Society, the American Institute for Cancer Research, the American Society of Clinical Oncology, and cancer care organizations have established support systems that provide free counselling, education, or financial assistance to cancer survivors [41]. Schear et al. [42] also pointed out that there is a need to establish multi-party organizations, including patients, healthcare professionals, public interest organizations and the media, and to organize cancer forums or experience-sharing sessions on advocacy strategies and planning, in order to improve attitudes, knowledge, policies and services, and to meet the needs of cancer patients at the individual, social and national levels, so as to improve the level of their self-advocacy. In addition, special breast cancer advocacy groups have been set up, such as Y-ME, Susan G. Komen Breast Cancer Foundation and the National Breast Cancer Alliance, which have raised the provision of breast cancer information and support to the political level [43]. It also provided a reference for other countries to establish support system to other cancer patients. With the development of information technology, patients with high e-health literacy will actively search for online information to obtain disease-related knowledge and use it for disease self-management. It’s recommended to use the advantages of the Internet to better help patients manage themselves, such as decision-making tools and electronic self-symptom reporting procedures [44].

This study summarized patients’ experiences of self-advocacy, which is currently limited in scope and is hoped to be promoted in various healthcare institutions in the future to facilitate cancer patients’ symptom management, psychological health, quality of life, and patients’ participation in medical decision-making. At the same time, we should design a variety of self-advocacy methods to increase the interest of patients’ participation, and conduct a large-sample randomized controlled study by combining the existing self-advocacy assessment tools to dynamically record the changes in the process of patients’ self-advocacy and to observe the effects of its application.

Strengths and limitation

This systematic review utilised rigorous and standardised methods for appraisal, and inclusion is supported by a systematic approach. Qualitative studies of cancer patients and particularly self-advocacy experiences is a sparsely investigated area. however, through careful appraisal, seven articles were found that could be included in this meta-synthesis. The studies represented patients from various countries and cultural backgrounds providing a richer description of this population’s experience.

The findings of this review must be interpreted within its limitations. Firstly, due to the language restriction, this review only examines the contributions in Chinese and English, which can make the results of the study exist in a certain bias. Secondly, personal subjective bias can’t be completely avoided in the study, which may have an impact on the interpretation of integration results. The third limitation is that original data was not accessed, and therefore, any original bias in the primary studies could have led to bias in the synthesis. Finally, the majority of the included studies were from the US. Cultural variation may impact the experiences of the self-advocacy. Therefore, the findings can be generalized only to places with similar contexts. More studies need to be conducted outside the United States.

Implications

Cancer patients planning to initiate self-advocacy can be supported by the results in this meta-synthesis. Participants in the included studies reported mainly positive effects includes gain effective knowledge, enhance self-management ability, and improve the quality of life. However, we also report on the challenges cancer patients face in the process of self-advocacy, including own factors, family factors and medical staff factors. We believe that self-advocacy may be helpful for cancer patients in relation to undergoing self-advocacy to ease the adjustment to physical and mental changes. Further research to improve the level of cancer self-advocacy and to improve the intervention measures to support self-advocacy are needed.