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Tabari-Khomeiran R, Ahmadi F, Jafaraghaee F, Jahani Sayad Noveiri M, Mirfarhadi N. Unmet Care Needs in Breast Cancer Survivors: An Integrative Review. JHNM 2023; 33 (1) :1-14
URL: http://hnmj.gums.ac.ir/article-1-1984-en.html
1- Associate Professor, Social Determinants of Health Research Center (SDHRC), Department of Nursing, Guilan University of Medical Sciences, Rasht, Iran.
2- Professor, Department of Nursing, School of Medical Sciences, Tarbiat Modares University, Tehran, Iran.
3- Assistant Professor, Department of Nursing, School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran.
4- PhD Candidate in Nursing, School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran. , mirfarhadin@gmial.com
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Introduction
Breast cancer is the most prevalent malignancy in women worldwide, and its incidence is increasing [1]. In 2018, over two million cases of breast cancer and six hundred thousand deaths due to breast cancer were reported [2]. However, in recent years, we have witnessed an increase in the survival rate of breast cancer patients, as the 5-year and the 10-year survival rates of breast cancer in the United States have reached 90% and 83%, respectively [3]. Improving survivors’ long-term care has become an important priority [4].
Cancer survival is a dynamic process encompassing many issues, including diagnosis, treatments, recovery, and palliative care. A specific stage in this spectrum is when the initial treatment is completed [5, 6]. Unmet needs are a set of required health services and activities designed to assist cancer patients in diagnosis, treatment, follow-up, and recovery [7, 8, 9]. It presented five significant changes in the approach to care and support for cancer patients and accentuated the provision of follow-up care based on patient’s needs and preferences [10]. Care needs include health information, patient care, psychosocial needs, daily living, and sexual needs [11, 12, 13, 14]. Providing care tailored to the needs of breast cancer patients leads to patients’ better self-care and self-management during the survival period, faster recovery, and less need for routine follow-ups [15, 16, 17]. The changes resulting from cancer and long-term treatments necessitate constant attention to the needs of cancer survivors [18]. Because many breast cancer patients have joined the survivors in recent years, it seems that the healthcare team is facing a multitude of unmet needs of this group, which requires a systematic approach to provide a more comprehensive picture of this problem’s dimensions [19]. 
Furthermore, in a systematic review, out of 26 studies, seven were dedicated to breast cancer patients who did not receive active treatment [20]. Therefore, the present study focuses exclusively on the unmet needs of breast cancer patients undergoing initial treatment (surgery, chemotherapy, radiotherapy) and during the post-treatment period (initial and long-term).
Besides, previous studies have mainly addressed one aspect of the unmet needs of the survivors [21, 22]; this integrative review was conducted in accordance with the framework of Whittemore and Knafl, five stages-problem identification, literature search, data evaluation, data analysis, and presentation. The integrative approach allowed the authors to synthesize all available evidence and generate insights about “what is happening,” “who is involved,” and “what matters” and uncover directions for future investigations [23]. This literature review aims to answer the following research question: What are the unmet care needs of breast cancer survivors?

Materials and Methods
This study is an integrated literature review. The search process and selection were adopted from the preferred reporting items for systematic reviews and meta‐analyses (PRISMA) [24]. The initial search generated 3012 articles, with 28 eligible articles selected for inclusion in this literature review. The audit trail is presented in Figure 1. Secondary sourced references were also retrieved. The search was undertaken in 2020. To avoid errors in the study, quality evaluation and data extraction were done by two researchers independently. A third researcher examined the agreement between the results and cases of disagreement. The inclusion criteria were original research papers only, articles in which the studied units were adult participants over 18, the full text of the articles was accessible in reputable published journals, and quantitative, qualitative, and mixed method studies that reported the data based on the unmet needs, or the concerns directly related to the unmet caring needs of the patients with breast cancer. The following articles were excluded: those that exclusively focused on the quality of life, satisfaction with healthcare services, use of care services, presence of centralized symptoms/problems, and studies that focused on tool development, translation, or evaluation. According to the exclusion criteria, the following articles were excluded from the study: abstract-only conference papers, dissertations, editorial opinions, recommendations, policies, or treatment recommendations. 
Duplications were identified and eliminated through reference management software (EndNote). Eligible articles were appraised, the risk of bias for each study was assessed, and its data were extracted. The methodological quality was assessed by all three authors using the mixed methods appraisal tool (MMAT) [25, 26]. This tool has specifically been designed for qualitative and quantitative studies. Four different quality criteria were used for the studies. Each met criterion and each unmet criterion was graded 1 and 0 points, respectively [27]. The score of each study was calculated on a 0-4 scale (0=no satisfied criteria, 1=one satisfied criterion, 2=two satisfied criteria, 3=three satisfied criteria, 4=four satisfied criteria). In case of disagreement, the authors held a group discussion to reach a final agreement [26]. The articles comprised qualitative, quantitative, and mixed-method studies. They most had MMAT scores of greater than 3, so due to a large number of studies, studies with a score of 3 or less were excluded from the study. Content analysis [28] was used to identify unmet needs in women with breast cancer; the categorization of these aspects was performed through previous studies [19, 22]. The primary author read and reread the literature and moved back and forth between the literature and the coded extracts of data and themes to ensure that the themes and subthemes emerging from the analysis generated clear definitions and labels for each theme; thus, the overall story of the experience illuminates the unmet needs of breast cancer survivors. Given that quantitative and mixed methods studies employed an exploratory and descriptive approach, the issues identified from these studies were integrated into the emergent themes, and statistical results from those studies were used to support the themes identified. The themes were scrutinized and revised by the other authors to ensure accurate interpretation and credibility.

Results 
The initial search yielded 3012 articles, of which 28 articles were selected for final inclusion. The articles included 19 quantitative (Table 1), 2 mixed-methods, and 7 qualitative (Table 2).

From different studies, 152 themes were retrieved, of which 34 were similar. Themes were reviewed, categorized, and emerged into two final categories: survival care needs and unperceived support needs (Table 3).

Survival care needs
This main category includes three themes: information needs, unmet communication needs, and management of disease symptoms and complications. All patients had many unmet information needs about the disease, treatment, and relapse symptoms [15, 40, 41, 42, 43, 44, 51, 53]. They also lacked adequate information about reducing physical and psychological complications. Many complained about the lack of a consultant and insufficient information needed to resume life [29, 30, 34, 37, 38, 39, 40, 41, 42, 43, 44, 45, 49, 50, 51, 52]. Regarding the unmet communication needs, most patients cited the need to communicate as one of the most basic unmet needs, represented as the need for communication with other patients, physicians, and nurses and the need for opportunities for empathy and sharing experiences [29, 31, 34, 36, 39, 41, 42, 49, 50, 53, 54].
Management of disease symptoms and complications are among the unmet needs of almost all cancer patients [29, 34, 39, 49, 52, 54]. They typically experience problems with alternative therapies, existing therapeutic gaps, medical literacy of specialists in controlling treatment side effects, lack of continuous access to health care services, and paradoxes of care, and often encounter disagreements to resolve their therapeutic conflicts [38, 40, 41, 42, 43, 44, 47, 51, 52, 54]. 

Unperceived support needs
Breast cancer patients often suffer from a variety of psychological problems [11, 29, 33, 31, 39, 53]. These problems occur in response to the patient’s individual needs, the subsequent treatment needs, and the psychosocial burden of the disease that may influence the effects of treatment and disease prognosis, and in some cases, lead to frustration and depression in patients [38, 43, 47, 48, 51]. This category includes the following themes: self-change, hurting hope, uncertain faith, unmet occupational needs, impaired sexual function, and forgotten social support.
In the self-change theme, patients complained about changes in their attitudes, self-perceptions, being embarrassed about the self, and changes in their mental image and felt the need to be supported [29, 31, 33, 34, 39, 48, 53].
Hope is a multidimensional and potentially influential factor in cancer patients’ effective recovery and adaptation [11, 54]. Due to the critical stages, they go through, patients experience diverse emotions at each stage, such as uncertain beliefs, hope, and trust, sometimes a change in faith, a loss of spirituality, and distressing beliefs, and in fact, perceiving the future as ambiguous [11, 31, 32, 38, 40, 53, 54]. These factors cause them not to pay adequate attention to their treatment and disregard their doctor’s instructions. Consequently, the need for psychological and spiritual support is quite felt in these individuals.
Unmet occupational needs are a major concern for patients with job-related needs, economic burdens, and financial worries that, in some cases, they are forced to abandon treatment [32, 41, 46, 51, 53, 54].
Patients with breast cancer who experience trouble in the sexual relationship with their partners and have unmet needs related to their fertility suffer from impaired sexual function and need guidance to direct their relationships [15, 33, 34, 36, 38, 40].
Social support is a reliable source to help cancer patients cope with anxiety, depression, and a sense of insecurity. Lack of social support reduces patients’ quality of life. Breast cancer survivors need the support provided by society and their partners, emotional support, and insurance coverage [11, 29, 46, 47, 49, 54]. The unmet needs of patients in this regard will cast a shadow over these individuals’ lives during and after treatment.

Discussion
The results of this review emerged in two main categories: unperceived support needs and survival care needs. Unperceived support needs are experienced in patients for numerous reasons, including the disease’s psychological and emotional burden and treatment burden. This main category includes five themes: self-change, hurting hope, unmet occupational needs, impaired sexual function, and forgotten support.
Changes in self-image and a sense of embarrassment occur in almost all women with breast cancer and are among their unperceived support needs [29, 31, 33]. In most cases, the treatment system focuses merely on treating patients and, for various reasons, avoids addressing such patients’ needs, which is an immediate complication of the disease [33, 34, 36, 39]. However, monitoring the physical and mental health of women with breast cancer should be given special attention in a comprehensive, regular, and individualized care program. A study in this field showed that poor mental image could lead to physical and psychological distress in breast cancer patients and reduce intimacy and proper relationships with a sexual partner in young women [55]. Another researcher declares that such ignorance of poor mental image in these patients by the medical staff can ultimately reduce the quality of life in patients with breast cancer, which confirms the present study’s findings [56]. Healthcare providers can use the available evidence to develop practical strategies and integrate them into psychotherapy programs for cancer patients. One of the main themes of the unperceived support needs was the hurting hope. Maintaining hope for coping with the disease effectively is the most critical need to be considered. However, studies have shown that patients with breast cancer experience wide ranges of loss of hope and spirituality as well as distressing beliefs [31, 32, 40, 54]. Similarly, Li reported that nursing intervention positively increases hope in cancer patients [57]. Likewise, Zumstein-Shaha’s study indicated that regarding patients’ spiritual needs by nurses led to finding meaning in the disease status and ultimately accepting the disease [58]. Identifying patients’ spiritual needs and increasing the level of hope should be included in the care program for women with breast cancer by a multidisciplinary team.
Unmet occupational needs are another theme of the “unperceived support needs” category. Cancer diagnosis and treatment process indirectly affect the patients’ financial well-being, families, and employment. A study showed that more than 47% of breast cancer patients had experienced financial problems [59]. Another study indicated that financial needs related to cancer treatment and health care vary according to the patients’ socio-economic background and type of health insurance [60]. Healthcare professionals can satisfy these unmet needs through multi-sectoral collaboration accelerated by state organizations.
Another important theme was impaired sexual function in patients with breast cancer. This problem, which often occurs for the patient following the disease and treatment process, is often disregarded by the medical staff. Albersreported that 80.4% of patients and 37.7% of companions had not received any information in that regard [61]. The results of Lehmann’s study likewise showed that the level of sexual health needs had varied between young survivors and other individuals [62]. Therefore, the sexual health care program must become a part of the standard breast cancer care program. Forgotten support is the last theme of the “unperceived support needs of breast cancer patients” category. This theme originates from subthemes, such as the need for social support and unmet emotional support needs. The results of several studies have shown that women with breast cancer suffer from forgotten social support [29, 34, 50]. About 20.6% of patients do not receive family support [50]. Social support can reduce readmission in the hospital and patient mortality [63]. Therefore, social support provided by the family and the effective presence of the spouse during the treatment is the most critical factor to support and help the patient leave isolation.
The second main category extracted in this study was “survival care needs,” which includes three main themes: information needs, unmet communication needs, and management of the disease symptoms and complications.
The provision of information should be considered an indispensable component in the field of healthcare. Reviewing studies showed that patients complained about unmet information needs regarding the disease, treatment, relapse symptoms, and the lack of a consultant [49]. Consultants can provide valuable solutions and approaches to patients enabling them to deal with the problems caused by the disease.

Communication needs are another main theme of survival care needs in these patients [11, 21, 19, 40]. Shih et al. showed that after a while following treatment, the need for communication was felt more in the patients, and the highest unmet need of patients with a longer survival period was related to the field of communication [29]. Women in the long-term survival phase tend to share their feelings with the medical staff [64]. A systematic review showed that unmet needs were unrelated to patients’ survival [20]. However, several studies [65, 66] have shown that identifying and promoting patients’ communication needs and paying special attention to nonverbal aspects of communication can lead to improved patient care. Another major theme of “survival care needs” is the management of disease symptoms and complications. Breast cancer patients have strong unmet needs for training and intervention for complications [67]. Evidence shows that few patients receive initial assessments of dysfunction and performance [49, 68]. Emphasis on training patients and raising their awareness before initiating the treatment will significantly benefit patients.
Strengthening and developing comprehensive support in women with breast cancer can be an appropriate technique to promote life expectancy and better adaptation to the complications caused by the disease and treatment.
Identifying survival care needs can guide the development and implementation of survival care programs that improve communication and care coordination between hospital oncology services, primary care services, and cancer survivors. Based on the results of the current study, it is recommended that the following dimensions are taken into more consideration: the needs for information and communication, management of disease complications, and support needs.

Ethical Considerations
Compliance with ethical guidelines

Ethical permission was obtained from the Research Ethics Committee of Guilan University of Medical Sciences (Code: IR.GUMS.REC.1397.529) on 16/3/2019.

Funding
This research was funded by the research project by the Student Research Committee of Guilan University of Medical Sciences.

Authors' contributions
Methodology: Nastaran Mirfarhadi and Fatemeh Jafaraghaei; Data analysis: Nastaran Mirfarhadi, Rasoul Tabari-Khomeiran, Fazlollah Ahmadi, and Marzieh Jahani Sayad Noveiri; Writing–original draft: Nastaran Mirfarhadi, Fatemeh Jafaraghaei, Rasoul Tabari-Khomeiran, Marzieh Jahani Sayad Noveiri; Writing–review & editing: Fazlollah Ahmadi, Rasoul Tabari-Khomeiran, and Fatemeh Jafaraghaei; Conceptualization, Data collectionand, and final approval: All authors.

Conflict of interest
The authors declared no conflict of interest.

Acknowledgments
This study is a part of the research approved by the Guilan University of Medical Sciences. The authors thank the Student Research Committee of Guilan University of Medical Sciences for supporting this research project.

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Article Type : Research | Subject: General
Received: 2021/06/14 | Accepted: 2022/01/23 | Published: 2023/01/1

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