Barriers and facilitators to self-management among patients with breast cancer receiving neoadjuvant chemotherapy: A qualitative study informed by the integrated theory of health behavior change

Abstract

Objective

To explore barriers to and facilitators of self-management and related support needs across the pathway from neoadjuvant chemotherapy (NAC) to surgery by integrating the perspectives of patients and health care professionals in an analysis informed by the Integrated Theory of Health Behavior Change (ITHBC).

Methods

We used a qualitative descriptive design and maximum variation purposive sampling to recruit 16 individuals who were receiving NAC or awaiting surgery, together with 11 health care professionals involved in NAC care or self-management support. Data were collected through face-to-face, semi-structured interviews. The ITHBC informed the interview guides and initial analytic framework. Directed content analysis combined deductive coding guided by the framework with inductive analysis of data not captured by the framework. Patient and health care professional data were analysed separately and then integrated.

Results

Four interrelated themes were constructed. First, patients varied in their understanding of why chemotherapy preceded surgery and how to interpret tumor changes; some regarded tumor shrinkage as evidence that treatment was complete. Second, cumulative toxicity constrained nutrition, physical activity, and functional readiness for surgery. Third, day-to-day self-management was shaped by the timeliness and credibility of professional guidance, as well as family and social circumstances. Fourth, the overlap of persistent symptoms, physical recovery, and surgical preparation during the transition from NAC to surgery revealed gaps in transitional support that were not adequately addressed by generic health education.

Conclusions

Self-management needs differed across NAC stages and during the transition to surgery. These findings suggest a need for continuous and individualised self-management support aligned with patients’ understanding, symptom burden, and treatment stage.

Introduction

Breast cancer remains a major global health burden. In 2024, an estimated 2.4 million new cases of female breast cancer were diagnosed worldwide, accounting for 11.8% of all new cancer cases.¹ Neoadjuvant chemotherapy (NAC) is an important preoperative systemic treatment that can downstage tumors, increase eligibility for breast-conserving surgery, and enable in vivo assessment of tumor response.² In China, the proportion of patients with early-stage breast cancer who received neoadjuvant therapy increased from 15.9% in 2011 to 25.3% in 2021.³ For patients undergoing NAC, greater attention is needed to support them throughout treatment and preparation for surgery.

During NAC, patients are expected to monitor treatment-related symptoms, adapt their daily routines, and seek timely professional support.^4,5 In addition to the challenges common to chemotherapy, the presence of an unresected primary tumor creates additional information needs and emotional demands. Patients may therefore require support to understand why systemic treatment is given before surgery, interpret interim tumor changes, and manage uncertainty until pathological assessment confirms treatment response.^6,7 A survey conducted in China documented substantial unmet supportive care needs among patients receiving NAC, with needs varying by chemotherapy cycle and symptom burden.⁸ Longitudinal evidence suggests that these needs persist beyond chemotherapy into surgery and recovery, shifting in parallel with quality-of-life trajectories.⁹ Self-management priorities may therefore shift from managing acute treatment effects to physical recovery and surgical preparation.

Outpatient NAC care can be organised around discrete clinical milestones, including pretreatment education and cycle-based assessments. Between visits, patients are expected to initiate contact when needed. This model may not address changing needs across treatment stages.^4,10 Evidence remains limited on how mismatches between evolving self-management needs and available support arise in practice. Quantitative studies have characterized symptom burden, fatigue, and psychological distress during neoadjuvant treatment.^5,11,12 Qualitative research, however, has largely focused on overall treatment experiences, care experiences, or prehabilitation needs and implementation.^4,7,13,14 Few studies have explored self-management needs across NAC stages and during surgical preparation. Consequently, less is known about how individuals with breast cancer make sense of treatment, respond to practical challenges, and negotiate competing demands across this pathway within their social contexts. Research increasingly recognizes the value of integrating multiple stakeholder perspectives, including those of patients and health care professionals. Integrating these vantage points may illuminate how support gaps are experienced, how they arise within care processes, and where patients' needs diverge from health care professionals' perceptions.^15,16

Stage-related variation in self-management across the pathway from NAC to surgery warrants a systematic theoretical lens. The Integrated Theory of Health Behavior Change (ITHBC) proposes that knowledge and beliefs, self-regulation skills and abilities, and social facilitation interact to influence health behavior change.¹⁷ The ITHBC has been applied to breast cancer-related lymphoedema management and dietary self-management,^18,19 but its use in the NAC context remains limited. In this study, the ITHBC informed the research focus, interview guides, and initial analytic framework for directed content analysis, whilst data not captured by the framework were analyzed inductively. By integrating the perspectives of individuals receiving NAC or awaiting surgery with those of health care professionals involved in NAC care or self-management support, this study aimed to explore barriers to and facilitators of self-management and illuminate support needs across the pathway from NAC to surgery. The findings may inform continuous and individualised self-management support.

Methods

Study design

This qualitative descriptive study used directed content analysis informed by ITHBC. Consistent with the study's descriptive and clinically oriented aim, this design enabled a relatively low-inference account of barriers to and facilitators of self-management and related support needs across the NAC-to-surgery pathway. The ITHBC served as a sensitizing framework for developing the interview guides and structuring the initial analysis. Its three core domains (knowledge and beliefs, self-regulation skills and abilities, and social facilitation) guided deductive coding. Data that extended beyond or were not captured by the framework were analyzed inductively. This combined deductive and inductive approach retained a clear theoretical focus whilst remaining responsive to participants' experiences and contextual influences. The study is reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ)²⁰; the completed checklist is provided in Supplementary File 1.

Study setting and participants

The study was conducted between March and May 2026. Patients who were receiving NAC or had completed NAC and were awaiting surgery were recruited from the Department of Breast Surgery at The First Affiliated Hospital of Army Medical University. Health care professionals involved in NAC or self-management support were recruited from breast surgery departments at three tertiary hospitals: The First Affiliated Hospital of Army Medical University, The PLA Army Specialized Medical Centre, and Chongqing Maternal and Child Health Hospital.

Maximum variation purposive sampling was used to capture diverse treatment experiences and professional perspectives.²¹ For patients, sampling considered age, educational level, NAC stage, and tumor molecular subtype; for professionals, sampling considered professional role, institution, and years of relevant experience. The purpose was to maximize experiential variation, not statistical representativeness.

Patients were eligible if they (1) had pathologically confirmed breast cancer; (2) were receiving NAC or had completed NAC and were awaiting surgery; and (3) could understand the interview questions and describe their experiences. Patients were excluded if they (1) were receiving postoperative adjuvant chemotherapy at recruitment; (2) had another concurrent malignancy; or (3) had severe cognitive impairment or a mental health condition, either of which precluded participation. Health care professionals were eligible if they (1) were breast surgeons or nurses; (2) were directly involved in NAC or self-management support; and (3) had at least five years of relevant experience. Potential participants were screened against these criteria, informed about the study, and invited to participate.

Data collection

Data were collected through face-to-face, semi-structured interviews using separate guides for patients and health care professionals. The guides were developed based on the study aims and relevant literature and then refined around the three ITHBC domains. Interviews with patients explored their understanding of NAC, responses to treatment-related changes, management of symptoms and daily life, and experiences of seeking support. Interviews with health care professionals explored their accounts of self-management among patients, perceived barriers and facilitators, and the organization and delivery of support. The guides were applied flexibly; follow-up questions were used to clarify meanings, pursue emerging issues, and explore the contexts surrounding particular experiences.

Before formal data collection, the guides were pilot-tested with one eligible patient and one health care professional to assess question clarity, topic sequence, and interview flow. Several questions were simplified, selected topics were reordered, and additional prompts were added. The pilot data were excluded from the final analysis. The final interview guides are presented in Supplementary File 2.

All interviews were conducted by the first author (JYL), a female postgraduate nursing student with training in qualitative methods and no prior clinical or personal relationship with participants. A second researcher (LCX), who held a master's degree and had qualitative research experience, attended each interview. She documented non-verbal expressions, pauses, emotional responses, and contextual details but did not lead the interview or intervene in the questioning. Although LCX was affiliated with the breast surgery department, she was not involved in the clinical care of participating patients and had no supervisory, managerial, evaluative, or close collegial relationship with participating health care professionals. No other individuals were present.

Interviews took place in quiet, private settings familiar to participants. Patients were interviewed in a private consultation room during hospital visits, including chemotherapy visits and preoperative follow-up appointments. Health care professionals were interviewed in offices or staff break rooms at times that did not disrupt clinical duties. Before each interview and audio recording, the first author explained the study purpose and procedures, the voluntary nature of participation, and the measures used to protect confidentiality. Written informed consent was obtained from all participants.

Participants were encouraged to describe their experiences in their own words. Targeted prompts were used to clarify meanings and deepen the discussion. If a participant experienced physical discomfort or emotional distress, the interviewer slowed or paused the interview and resumed only when the participant felt able to continue. Interviews lasted 27–65 minutes. At the close of each interview, the researcher summarized the main points and invited the participant to correct misunderstandings or add further information. Each participant received a non-monetary token of appreciation approved by the ethics committee.

Data collection, preliminary analytic reflection, and memo-writing proceeded concurrently. After each interview, the researchers documented emerging observations and used them to refine follow-up questions for subsequent interviews. Within 24 hours, JYL transcribed each recording verbatim and checked the transcript against the field notes. LCX then compared the transcript with the audio recording to verify completeness and accuracy.

Saturation was assessed separately for the patient and health care professional groups. Code saturation was considered reached when no new codes or subthemes emerged, and meaning saturation when additional interviews no longer contributed substantive depth, variation, or contextual explanation. No new codes, subthemes, or substantively different insights emerged after the 14th patient interview or the ninth health care professional interview. Two additional interviews were conducted in each group to confirm saturation.²² No repeat interviews were conducted.

Data analysis

Following transcript verification, formal coding commenced. JYL and LCX independently read each transcript several times alongside the corresponding field notes. Audio recordings were revisited when clarification of wording, tone, or context was required. NVivo 15.0 was used to organise and manage the data.

The analysis followed directed content analysis.²³ The patient and health care professional datasets were initially analysed separately to preserve the distinctiveness of each vantage point. JYL and LCX independently coded all transcripts line by line. The three ITHBC domains served as provisional analytic domains for deductive coding. Experiences, contextual influences, and care processes not captured by the framework were coded inductively. Data were not forced into the predefined domains, and coding remained open to revision.

Codes were compared within and across interviews, refined, and developed into subthemes and broader themes. The researchers moved iteratively between transcripts, field notes, codes, subthemes, themes, and ITHBC domains. Particular attention was given to contrasting accounts, stage-related variation, and data not captured by the initial theoretical framework.

After independent coding, JYL and LCX compared their coding decisions and interpretations within each dataset. Differences in code labels, coding boundaries, allocation to theoretical domains, and thematic organisation were resolved through discussion and reference to the original transcripts and field notes. If differences could not be resolved, a third qualitative researcher who had not participated in data collection reviewed the relevant data and joined the discussion until consensus was reached.

After the two datasets had been analysed separately, the patient and health care professional findings were compared and integrated. Convergence referred to concerns described by both groups; complementarity referred to one perspective adding explanation or contextual detail to the other; and divergence referred to differences between patients' experiences and health care professionals' observations or interpretations. Source identifiers were retained throughout to maintain traceability of each perspective. This cross-group comparison informed the development of a preliminary integrated thematic structure.

Participant feedback was sought after the preliminary integrated thematic structure had been developed. In separate face-to-face meetings, one patient and one health care professional who had participated in the interviews received a concise summary of the themes and subthemes relevant to their accounts, together with selected quotations from their interviews. They were invited to comment on whether the interpretations reflected their experiences and whether any wording required clarification. Their feedback did not alter the overall thematic structure but informed minor revisions to selected theme and subtheme labels.

The research team then reviewed the preliminary integrated structure. Theme definitions, conceptual boundaries, and relationships among themes were repeatedly checked against the original transcripts, and interpretive differences were resolved through discussion. At a later stage, two additional reviewers examined the preliminary thematic structure and interpretations: a qualitative researcher who had only been involved in resolving coding differences, and a breast care professional who had not been involved in data collection or initial coding. Their feedback informed the final thematic structure, which encompassed barriers to and facilitators of self-management and support needs during NAC and the transition to surgery.

All coding and thematic development were undertaken using the original Chinese transcripts to preserve linguistic, cultural, and contextual meanings. Representative quotations were selected for their relevance and capacity to convey participants' experiences. A bilingual member of the research team translated the quotations selected for publication from Chinese into English. Participants were labelled ‘P’ for patient or ‘HCP’ for health care professional.

Rigor and reflexivity

Methodological rigour was guided by Lincoln and Guba's criteria of credibility, dependability, confirmability, and transferability.²⁴ Credibility was supported through repeated data engagement, independent coding, team discussion, comparison of patient and health care professional perspectives, attention to divergent accounts, and participant feedback. Dependability was strengthened through an audit trail documenting sampling decisions, saturation assessments, coding differences, and thematic structure revisions. Confirmability was supported by reflexive documentation and later review of the preliminary thematic structure and interpretations. Transferability was facilitated by detailed descriptions of the setting, recruitment, participants, clinical context, and procedures.

The first author was not affiliated with the breast surgery department and had no previous clinical or care relationship with participants. This independence was intended to encourage open discussion and minimise social desirability effects. Participants were assured that their data would be used solely for research, stored separately from medical records, and would not affect treatment, care, employment, or professional evaluation. Because the first author's nursing background could shape data collection and interpretation, she maintained a reflexive journal documenting her assumptions, responses to the data, influence on interviews, and key analytic decisions. Members of the breast care nursing team contributed clinical perspectives during interpretation; these were treated as contextual contributions rather than definitive accounts. Alternative explanations were considered and checked against the original data.

Results

Participant characteristics

Thirty-six potential participants were assessed for eligibility: 24 patients and 12 health care professionals. Five patients were ineligible, three due to concurrent malignancy and two due to cognitive impairment. One eligible patient completed the pilot interview, and two declined to participate; no specific reasons were provided. No participants withdrew after enrolment. The remaining 16 completed the study interviews. One health care professional completed the pilot interview, and the remaining 11 completed the study interviews. The final analytic sample comprised 27 participants: 16 patients from the primary study site and 11 health care professionals, five from the primary site and three from each of the two additional sites. Fig. 1 presents the recruitment process.

Fig. 1.

Participant recruitment and inclusion process.

Patients had a mean age of 49.1 years (standard deviation [SD] 9.7), and 15 were women. They represented diverse residential, educational, occupational, and socioeconomic backgrounds. Molecular subtypes included human epidermal growth factor receptor 2 (HER2)-positive disease (n = 7), triple-negative breast cancer (n = 6), and luminal B disease (n = 3). At the time of interview, five patients were in cycles 1–2, three were in cycles 3–4, six were in cycle five or later, and two had completed NAC and were awaiting surgery. The health care professional group comprised eight nurses and three breast surgeons. Their mean age was 40.0 years (SD 4.6), and their mean professional experience was 17.6 years (SD 5.5). Five held intermediate and six associate senior professional ranks. Participants were assigned identifiers P01–P16 and HCP01–HCP11. Detailed characteristics are presented in Table 1.

Table 1.

Participant characteristics.

Characteristic	Category	n (%) or mean ± SD
Patients (n = 16)
Age (years)		49.1 ± 9.7
Sex	Female	15 (93.8)
	Male	1 (6.3)
Place of residence	Rural	3 (18.8)
	County seat	8 (50.0)
	Urban	5 (31.3)
Educational level	Primary school or below	6 (37.5)
	Secondary school	6 (37.5)
	Junior college or above	4 (25.0)
Occupation	Farmer	6 (37.5)
	Employed	4 (25.0)
	Unemployed	6 (37.5)
Monthly income (CNY)	< 3000	6 (37.5)
	3000 to 5000	6 (37.5)
	> 5000	4 (25.0)
Comorbidity	None	14 (87.5)
	Diabetes mellitus	1 (6.3)
	Hypertension	1 (6.3)
Molecular subtype	HER2-positive	7 (43.8)
	Triple-negative	6 (37.5)
	Luminal B	3 (18.8)
Treatment stage at the time of interview	Cycles 1 to 2	5 (31.3)
	Cycles 3 to 4	3 (18.8)
	Cycle 5 or later	6 (37.5)
	Completed NAC and awaiting surgery	2 (12.5)
Health care professionals (n = 11)
Professional role	Nurse	8 (72.7)
	Breast surgeon	3 (27.3)
Age (years)		40.0 ± 4.6
Educational level	Bachelor's	8 (72.7)
	Master's	2 (18.2)
	Doctorate	1 (9.1)
Professional rank	Intermediate	5 (45.5)
	Associate senior	6 (54.5)
Years of experience		17.6 ± 5.5

Continuous variables are presented as mean ± SD, and categorical variables as n (%). Percentages were calculated using denominators of 16 patients and 11 health care professionals. Treatment stage refers to status at the time of interview. Case managers were categorized as nurses. CNY, Chinese yuan; HER2, human epidermal growth factor receptor 2; NAC, neoadjuvant chemotherapy; SD, standard deviation.

Thematic findings

Four interrelated themes and 10 subthemes were constructed. The first three themes were framed within the ITHBC domains of knowledge and beliefs, self-regulation skills and abilities, and social facilitation. Each encompassed barriers to and facilitators of self-management. The fourth theme was developed inductively and illuminated a gap in transitional supportive care. The integrated thematic structure is presented in Fig. 2. In addition, the integration of patient and health care professional perspectives across the subthemes is summarised in Supplementary File 3.

Fig. 2.

Integrated thematic structure of barriers and facilitators to self-management, comprising four themes and 10 subthemes.

Theme 1: knowledge and beliefs about treatment rationale and tumor response

This theme illuminates how patients understood the rationale for receiving chemotherapy before surgery and made sense of the continued presence and changing size of the primary tumor. These understandings shaped their judgements about disease status, treatment progress, and subsequent care.

Differing understandings of the “chemotherapy first, surgery later” rationale

Following diagnosis, many patients wanted the tumor removed immediately. The requirement to complete several chemotherapy cycles before surgery conflicted with this expectation. When the purpose of NAC was unclear, some patients described trusting their clinicians and following the treatment plan rather than understanding its rationale.

“I didn't understand why chemo had to come before surgery. My son talked with the doctor, and I just followed the doctor's advice.” (P02)

Health care professionals similarly described patients who requested immediate surgery and questioned why chemotherapy had to be given first.

“Patients often ask for surgery right after diagnosis. They find it very difficult to understand why chemotherapy has to come before surgery.” (HCP11)

One patient's account illuminated a shift from uncertainty about treatment sequencing towards making sense of NAC within the surgical pathway.

“At first, I thought surgery should come first. But after the doctor explained that chemotherapy could shrink the tumor and make surgery easier, I understood why I needed to take good care of myself and prepare my body for surgery.” (P06)

The unresected tumor as both threat and treatment signal

Unlike postoperative adjuvant chemotherapy, NAC is delivered while the primary tumor remains unresected. The tumor therefore functions not only as a treatment target but also as a tangible presence that can be felt, seen, or imagined. One patient experienced its continued presence as distressing and avoided touching the affected breast.

“When I shower, I don't even want to touch it.” (P16)

For other patients, changes in tumor size provided a tangible indication of treatment response. One patient described the reduction on ultrasound after the third and fifth cycles.

“I had ultrasounds after my third and fifth cycles. The tumor went from 5 cm to 2 cm.” (P13)

Health care professionals described using visible or palpable changes to help patients recognise that treatment was taking effect.

“You can use changes that they can notice to encourage them, such as when the lump becomes smaller. They can feel the change themselves, and they can see it.” (HCP10)

Thus, the unresected tumor carried contrasting meanings during NAC. Its continued presence could be a distressing reminder of disease, whereas a reduction in size could provide tangible reassurance that treatment was taking effect.

Interpreting tumor shrinkage as treatment completion

Although tumor shrinkage reassured patients that NAC was taking effect, some interpreted a smaller or impalpable lump as evidence that the treatment goal had been achieved and questioned whether surgery remained necessary.

“I can't feel the tumor at all now. Why do I still need surgery?” (P09)

Health care professionals described how some patients did not clearly distinguish clinical or imaging response from postoperative pathological response. Consequently, they framed an interim response as though the final therapeutic goal had been achieved.

“For some patients, the tumor shrinks from 5 cm to 1 cm. That is very encouraging, but it does not necessarily mean that they have achieved a pathological complete response. At that point, they may assume that everything is fine and ease off on self-management.” (HCP10)

These accounts illuminate how the same response could support understanding whilst also generating misunderstanding. Tumor shrinkage signalled that NAC was taking effect, but some patients interpreted it as complete tumor disappearance or treatment completion. Health care professionals were concerned that this interpretation might reduce patients' perceived need for surgery, continued self-management, and preoperative preparation.

Theme 2: self-regulation under cumulative toxicity and preoperative demands

During NAC, patients managed cyclical symptoms whilst attempting to maintain adequate nutrition, physical activity, and functional capacity for treatment completion and surgery. Cumulative toxicity, however, constrained their capacity to translate knowledge into action. Some patients nevertheless adapted their diet and activity in response to fluctuating symptoms and sought to preserve their physical condition for surgery.

Cumulative toxicity limits the translation of knowledge into action

Patients' accounts described a progressive increase in symptom burden across successive chemotherapy cycles, which constrained their ability to eat, move, and recover physically.

“The side effects started immediately after my first cycle and continued to worsen. By the fifth cycle, they were at their worst. I was vomiting two or three times a day.” (P07)

Even when patients understood the importance of adequate nutrition and physical activity, oral and gastrointestinal symptoms, together with fatigue, often prevented them from acting on this guidance. Their capacity to implement recommended behaviours was therefore constrained by symptom burden rather than limited knowledge.

“I know I should eat more protein to build up my reserves, but my body simply will not cooperate. Both my mouth and my stomach reject it.” (P12)

The gap between knowledge and action was particularly apparent during later treatment cycles. Patients nearing surgery sought to restore their physical condition, but fatigue and discomfort associated with the remaining cycles limited their capacity to do so.

“I have only two more cycles of chemotherapy before surgery, but the drugs have left my body completely out of balance. I really cannot tolerate it any longer. I want to restore my body to a better state, but I simply do not have the energy.” (P08)

This created a central tension. The need to restore nutrition and strength was particularly salient in preparation for surgery, while cumulative toxicity constrained patients' capacity to eat, remain active, and prepare for surgery.

Adjusting diet and activity in response to symptom changes

Patients adapted their diet and activity in response to fluctuating symptoms and sought to maintain readiness for surgery. Dietary adjustments were guided primarily by gastrointestinal tolerance.

“Once my appetite began to return, I tried to have one bottle of milk and two eggs every day, and to eat some fish as well.” (P09)

In contrast, physical activity was often influenced by concerns about functional decline before surgery. Despite fatigue, some patients remained active because they believed that prolonged rest would weaken them further.

“The doctor said surgery would take place soon after chemotherapy finished. I was worried that too much bed rest would make me even weaker, so although I felt exhausted, I still made myself walk about 10,000 steps every day.” (P05)

For some patients, regulating diet and exercise was also a way of participating actively in treatment. They associated these behaviours with improving their physical condition and increasing their perceived likelihood of a favourable outcome.

“My goal is very clear. I want to do everything I can to achieve a pathological complete response. In addition to completing chemotherapy, I do 30 to 40 minutes of moderate exercise every day and make sure that I eat a balanced diet. I want to improve my physical condition and build up some reserve.” (P01)

Diet and activity thus functioned as practical forms of self-regulation. Patients used these behaviours to respond to changing symptoms, preserve physical condition, and prepare for surgery. For some, they also provided a sense of agency and control. The perceived link between these behaviours and pathological response, however, reflected a treatment belief rather than an established causal relationship.

Theme 3: accessibility, credibility, and practicality of social support

Patients drew upon professional guidance, practical support from family, and information or encouragement from peers and online networks. The usefulness of these sources depended not only on availability, but also on timeliness, credibility, and relevance to immediate needs.

Uncertainty without timely professional interpretation

Patients underwent regular imaging to assess tumor response but often found the reports difficult to interpret. When timely professional interpretation was unavailable, some consulted digital platforms or artificial intelligence tools whilst remaining uncertain about the information's accuracy and personal relevance.

“I get scanned again after every two cycles of chemotherapy, but I do not understand the report. I end up asking Doubao [an AI assistant], but I do not know whether its answer is correct. I would still prefer a healthcare professional to explain it to me.” (P08)

Health care professionals acknowledged that existing communication channels offered some access to support; however, responses could be delayed outside working hours. Information shared in patient chat groups could also be fragmented and was not consistently vetted by health care professionals.

“We give patients the department telephone number, but responses are often slow outside working hours. The information shared in group chats can also be fragmented, and it is not always vetted by a healthcare professional.” (HCP09)

Patients wanted more than a description of the scan report. They sought professional interpretation of how the findings related to the remaining chemotherapy cycles and planned surgery. Without timely interpretation, uncertainty persisted at pivotal points in the treatment pathway.

Social contexts enabling or constraining self-management

Patients managed treatment and recovery alongside family and work responsibilities. Family members often reduced practical burdens by assuming everyday tasks, enabling patients to direct their limited energy towards rest, nutrition, and treatment.

“My family never lets me do the grocery shopping, cooking, or washing up. They do these things for me every day, so I have more time and energy to focus on myself.” (P14)

Workplace demands could constrain self-management. Inflexible leave arrangements and concerns about job security increased pressure and could require patients to choose between work and treatment.

“The school wants to dismiss me this month because I have taken too much leave. I asked them, what exactly do you want from me? Are you trying to push me to the brink? Fine, I will just focus on my treatment for now.” (P16)

Accessible but unverified informal advice

From the professionals' vantage point, some patients and families sought advice about diet, nutrition, and recovery from fellow patients, friends, or online sources. Such advice was typically based on personal experience, lacked professional verification, and was not tailored to individual symptoms or treatment stage.

“There is a so-called folk remedy involving eating loaches that is passed around by word of mouth. Some people even bought a bunch and kept them at home to eat.” (HCP05)

Health care professionals were concerned that patients might adopt such advice without judging its reliability or suitability and that this could lead to inappropriate self-management practices.

Theme 4: a support gap in the chemotherapy-to-surgery transition

This inductively developed theme illuminates a mismatch between the continuous self-management demands of the transition from NAC to surgery and the support organised around discrete treatment phases. Self-management priorities appeared to differ across treatment stages, with symptom management prominent during chemotherapy and physical recovery and surgical preparation particularly relevant during the transition to surgery. Limited anticipatory guidance left patients managing persistent symptoms whilst preparing for surgery.

Education tied to immediate tasks, not future needs

Participants described education as centred on immediate treatment demands. During chemotherapy, guidance focused on adverse effects and day-to-day management, with limited attention to recovery, surgical preparation, or forthcoming arrangements. They could therefore manage immediate tasks whilst remaining uncertain about the next phase.

Health care professionals similarly indicated that relatively little attention was given to neoadjuvant care and the transition to surgery.

“We tend to overlook the neoadjuvant treatment phase and focus more on postoperative chemotherapy.” (HCP10)

One health care professional estimated that NAC accounted for a substantial proportion of the department's breast cancer caseload but noted that no dedicated care programme had been established.

“About half of our patients receive neoadjuvant chemotherapy here, but we don't have a dedicated system to manage them; it's still based on the general breast cancer care programme.” (HCP04)

Patients wanted information about surgery earlier in the treatment pathway so that they could anticipate recovery, organise daily life, and approach the transition with greater certainty.

“I'm supposed to go for my preoperative check-up soon, but to be honest, I don't really know what's going on. I just take it one step at a time.” (P13)

“If the doctors and nurses could tell me during chemotherapy what I should prepare for before and after surgery, I would feel much more at ease.” (P04)

The issue was therefore not simply insufficient education, but a lack of forward-looking anticipatory guidance responsive to treatment stage. Priorities appeared to differ between chemotherapy and the preoperative stage, but support was not consistently aligned with these stage-specific needs.

A dual burden: persistent symptoms and preoperative preparation

This subtheme captures the period after NAC completion or during the final stages of treatment, when chemotherapy-related symptoms had not yet resolved but preparation for surgery had already begun. Patients were therefore managing persistent toxicities whilst attempting to regain strength, maintain everyday functioning, and prepare for the next treatment phase.

Health care professionals described individuals arriving on the surgical ward with exhaustion or persistent peripheral numbness after NAC. These residual effects could constrain patients' functional recovery as they prepared for surgery.

“Some patients are completely exhausted after completing chemotherapy. But they still have to undergo surgery. You can see how worn out they are. Their bodies simply cannot keep up. They feel they have no choice and just have to push through it.” (HCP02)

“Some patients find that numbness experienced during chemotherapy persists or becomes more noticeable in the weeks after chemotherapy ends.” (HCP07)

For patients awaiting surgery, persistent symptoms affected everyday functioning and their sense of recovery and preparedness for the next treatment phase.

“I have finished chemotherapy and am preparing for surgery, but the numbness in my hands and feet is seriously affecting my daily life. I do not know when it will improve, or if it will ever improve.” (P14)

The interval between chemotherapy and surgery was therefore experienced not as a simple period of waiting or recovery, but as a demanding transition. Patients were recovering from cumulative toxicity whilst preparing for surgery. Uncertainty about persistent symptoms made it difficult to judge whether recovery was progressing as expected and whether they were ready for surgery. This overlap generated specific needs for symptom guidance, reassurance, and preoperative preparation.

Discussion

Main findings

Guided by the ITHBC, this study illuminated interacting cognitive, behavioural, social, and transitional influences on self-management during NAC. Understanding of the treatment pathway and tumor response shaped treatment beliefs; cumulative toxicity constrained the translation of knowledge into action; and the usefulness of support depended on its timeliness, credibility, and practical relevance. These influences appeared to differ across treatment stages and were particularly apparent during the transition from the final chemotherapy cycle to surgery.

A central finding was that patients' understanding of the neoadjuvant pathway was often fragmented. Some found it difficult to make sense of why chemotherapy preceded surgery, how treatment response should be interpreted, and why surgery remained necessary after tumor shrinkage. Similar difficulties in understanding treatment sequencing and response assessment have been described previously.⁷ Within the ITHBC, gaps in treatment understanding may hinder the formation of coherent treatment beliefs and self-efficacy.¹⁷ Some individuals may therefore follow clinical guidance without clearly understanding the treatment pathway, whilst others may overestimate the significance of tumor shrinkage and perceive less need for self-management.

This interpretive gap is particularly salient during NAC because the unresected primary tumor remains in the breast and can be felt, observed, or monitored. Tumor shrinkage may provide an intuitive and reassuring indication that treatment is taking effect, but it may also be interpreted as disease disappearance or treatment completion. Previous research has similarly shown that patients' experiences during NAC often centre on changes in tumor size.²⁵ In the present study, patients made sense of response mainly through palpable changes or imaging findings, whereas health care professionals emphasised pathological response and subsequent clinical decisions. A reduction detected on clinical examination or imaging neither confirms pathological complete response (pCR) nor removes the need for surgery.²⁶ Thus, the knowledge gap concerned not only the amount of information available, but also the connection between patients' intuitive interpretations of tumor change and its clinical meaning.

Maintaining adequate nutrition and functional capacity emerged as important aspects of preparation for surgery during NAC. However, cumulative toxicity constrained patients' nutritional intake, physical activity, and functional readiness. This finding is consistent with evidence linking more severe chemotherapy-related symptoms to poorer self-care behaviours,²⁷ and with accounts of worsening fatigue and declining functional performance during later stages of NAC.^28,29 Within the ITHBC framework, self-regulation refers to the process whereby individuals translate knowledge and treatment goals into everyday action.¹⁷ The present findings extend this understanding by illuminating how the process depends not only on knowledge and motivation, but also on treatment stage, symptom burden, and physical capacity. Maintaining functional reserve was particularly important to patients nearing surgery, while their capacity to do so was often constrained.³⁰ Nevertheless, some patients adapted their diet and activity in response to changing symptoms. These adaptations suggest that self-regulation during NAC involves ongoing appraisal of physical condition and adjustment of behaviour, rather than adherence to fixed recommendations.

Social facilitation was central to sustaining self-management during NAC. Its value depended not simply on the availability of support, but on whether support was timely, credible, and matched to each treatment phase. At key points, including response assessments, patients struggled to interpret imaging findings and connect tumor changes with the remaining chemotherapy cycles and planned surgery. Previous research has similarly emphasised the importance of continuity, coordination, and responsiveness to patients' needs during transitions in cancer care.³¹

When timely professional interpretation was unavailable, some patients drew upon alternative information sources,³² although the reliability and personal relevance of the information were difficult to judge.^33,34 Family members who assumed household responsibilities reduced practical burdens, whereas inflexible work demands competed with treatment and recovery, consistent with previous findings.^7,25 Within the ITHBC framework, social facilitation therefore encompassed timely, credible information and practical support that helped patients reconcile treatment demands with existing roles and responsibilities. Conversely, support that was delayed, insufficiently tailored, or difficult to use could constrain self-management.

Another important finding concerned the interval between completion of NAC and surgery, which emerged as a distinct but insufficiently supported transition. Clinical support was generally organised around chemotherapy and surgery as separate phases. Patients, however, experienced recovery from chemotherapy and preparation for surgery as overlapping processes. The support gap therefore concerned not only the amount of education provided, but also whether guidance was continuous and aligned with self-management priorities across treatment stages. Previous research on cancer care transitions has similarly highlighted problems in continuity, information transfer, and coordination across care boundaries.^31,35 Most transitional care research, however, has focused on survivorship or transitions from hospital to home, with less attention to movement between active treatment phases.³⁶ The present findings frame the interval from NAC to surgery as a specific point of vulnerability. Chemotherapy had ended, but its effects had not necessarily resolved. Persistent symptoms could continue into the preoperative period, requiring individuals to manage post-chemotherapy recovery whilst preparing for surgery. Support that ends with chemotherapy or remains focused on generic chemotherapy content is unlikely to address the overlapping demands of unresolved symptoms, physical recovery, and surgical preparation that characterise this transition.

The support gaps identified in this study should be interpreted in relation to local service organisation. In the participating setting, education and clinical contact were largely organised around scheduled treatment milestones, while communication was mainly reactive and no dedicated system bridged the NAC and surgical phases. This created a mismatch between episodic service delivery and self-management needs that differed across treatment stages. When chemotherapy and surgery were managed as distinct phases, patients may have had to assume greater responsibility for navigating the transition under conditions of cumulative toxicity that could constrain their capacity to do so. The specific form and extent of these gaps may therefore vary according to local arrangements for professional access and care coordination.

However, the underlying challenges appear relevant beyond this setting. International evidence in breast cancer shows that treatment-related information may be provided only after problems arise and that patients prefer proactive professional communication.³⁷ Research in neoadjuvant breast cancer also emphasises early, structured supportive care,¹⁴ while prospective evidence indicates that fatigue varies across treatment phases.²⁸ More broadly, information transfer and continuity remain recurrent concerns across cancer care transitions,³⁵ while transitions during active treatment remain comparatively underexamined.³⁶ Taken together, these findings suggest that stage-specific self-management needs, cumulative toxicity, timely professional interpretation, and continuity of support across treatment phases may have broader relevance, particularly as patients transition from chemotherapy to surgery. The organisational approaches required to address these needs, however, will vary across health care systems.

Integration of patient and health care professional perspectives

Integrating patient and health care professional perspectives illuminated a gap not only in the amount of information provided, but also in how treatment information was understood and translated into everyday self-management. Patients made sense of treatment progress primarily through palpable tumor changes, symptoms, daily functioning, and their capacity to manage family or work responsibilities, whereas health care professionals drew upon imaging findings, pathological response, and surgical planning. These complementary vantage points did not always appear to be explicitly integrated. In this context, tumor shrinkage could be understood as indicating that treatment was nearing completion, whilst the rationale for continued treatment and preparation for surgery remained unclear. Routine education and assessments may therefore have addressed clinically defined stages of treatment without fully engaging with patients' uncertainty, cumulative toxicity, and practical constraints between scheduled visits. This interpretive gap helps explain why some patients remained uncertain despite receiving information and why available support did not always align with their stage-specific needs before surgery. A more dialogic approach, in which health care professionals explore patients' interpretations of treatment progress and everyday difficulties, may support a shared understanding of the treatment pathway.

Theoretical implications

The findings were consistent with the ITHBC and illuminated how its domains operated within the stage-related and organisational context of NAC. Individuals' interpretations of treatment sequencing and tumor response shaped their knowledge and beliefs. Translating these understandings into everyday practices related to nutrition, physical activity, and symptom management depended, however, on their physical capacity and access to social and professional support.

The findings further suggest that these domains may appear to operate differently across treatment stages and care transitions. Cumulative toxicity was described as constraining individuals' capacity for self-regulation, while recovery and preoperative preparation were particularly salient among patients nearing surgery. Informational and organisational support did not always align with these stage-related priorities, particularly during the interval between the final chemotherapy cycle and surgery. These patterns caution against treating the ITHBC as a static model focused on the individual. Although its core domains remained relevant, their operation was conditioned by physical burden, treatment timing, and continuity of care. Treatment phase and care continuity may therefore be understood as contextual conditions that shape how the ITHBC domains operate in everyday self-management.

Potential clinical applications

Drawing on the present findings and existing evidence, several illustrative approaches could be considered for further development and evaluation. These are inferences from the qualitative findings and related literature; they were not tested as interventions in this study and should not be interpreted as established standards of care.

• (1)Stage-tailored communication at treatment initiation and response assessments. A brief NAC pathway diagram, structured response summary, question prompt list, and teach-back approach could help patients distinguish changes detected by palpation or imaging from pathological response, understand how current findings relate to the remaining cycles, and recognise why surgery remains necessary.³⁸
• (2)Regular symptom and function monitoring between chemotherapy cycles. A brief set of regimen-relevant patient-reported items, delivered electronically or through other feasible methods, could identify symptoms that persist, worsen, or interfere with eating, activity, or daily functioning.^39,40 Clear escalation pathways could prompt clinical review and referral to nutrition or rehabilitation services when required.
• (3)Stage- and capacity-tailored prehabilitation. During later NAC cycles and before surgery, exercise and nutrition support could be adapted to symptom burden, functional status, and treatment schedules. Reassessment of fatigue and functional capacity could guide progression, reduction, or temporary adjustment of prehabilitation activities.³⁰
• (4)A structured transition plan from chemotherapy to surgery during the final NAC cycle. Medical oncology, breast surgery, and nursing teams could jointly review unresolved symptoms, recovery priorities, required referrals, and preoperative tasks. A shared written plan, a named professional contact, and scheduled follow-up before surgery could be evaluated as potential ways to reduce interruptions in support. With the patient's agreement, a primary caregiver could also be involved. This approach requires further piloting and evaluation.³⁶

These approaches warrant further evaluation of their acceptability, feasibility, and potential effects on patient outcomes and care delivery.

Limitations

Several limitations warrant consideration. Although health care professionals were recruited from three tertiary hospitals in southwestern China, the professional sample was limited to breast surgeons and nurses and did not include medical oncologists, dietitians, rehabilitation professionals, pharmacists, or psycho-oncology practitioners. The findings may therefore not reflect the range of professional perspectives involved in neoadjuvant care. All patients were recruited from a single hospital, which may limit the transferability of the findings to other settings. Only one man participated, limiting representation of the self-management experiences of men with breast cancer undergoing NAC. The study also relied on single interviews and did not follow the same individuals longitudinally, which limited its capacity to examine within-person changes in self-management and support needs over time. Future multicentre longitudinal research involving more diverse patient populations and health care settings is needed to substantiate and extend these findings.

Conclusions

Self-management needs differed across NAC stages and during the transition to surgery. Incomplete understanding of treatment response, cumulative toxicity, and support that was insufficiently timely or stage-responsive constrained daily adaptation and preoperative preparation. These findings suggest a need for continuous and individualised self-management support aligned with patients' understanding, symptom burden, and treatment stage.

CRediT authorship contribution statement

Yanling Jiang: Conceptualization, Methodology, Investigation, Data Curation, Formal Analysis, Writing – Original Draft. Chaixiu Li: Investigation, Data Curation, Writing – Review & Editing. Yinhuan Wang: Validation, Writing – Review & Editing. Niyan Huang: Visualization, Writing – Review & Editing. Ying Yang: Methodology, Formal Analysis, Validation, Supervision, Writing – Review & Editing. Jianmei Liao: Conceptualization, Methodology, Supervision, Project Administration, Writing – Review & Editing. All authors have read and approved the final manuscript.

Ethics statement

The study was approved by the Ethics Committee of the First Affiliated Hospital of Army Medical University (Approval No [A]KY2026056). The two additional participating sites provided formal written site authorizations, which constituted the institutional research governance approvals required at the respective sites for the local recruitment and interviewing of health care professionals. Written informed consent was obtained from all participants before being interviewed.

Data availability

The qualitative data generated and analyzed in this study are not publicly available because of their sensitive nature and the potential risk of participant identification. Further information is available from the corresponding author upon reasonable request.

Declaration of generative AI and AI-assisted technologies in the writing process

No AI tools/services were used during the preparation of this work.

Funding

This study received no external funding.

Declaration of competing interest

The authors declare no conflict of interest.

Appendix. Supplementary materials

The following are the Supplementary data to this article.