Author: Emily Liu
Mentor: Dr. Tara Well
The Thacher School
Abstract
Cancer patients face unique stressors that extend beyond the physical symptoms of their disease, including transformations in self-concept, pervasive uncertainty, and changes in relationships. These challenges can lead to significant psychological distress and reduced quality of life. Social support plays a critical role in helping cancer patients navigate their journey. The role of social support is multifaceted, offering emotional comfort, reducing feelings of isolation and insecurity, and providing practical help with daily tasks and medical decision making. Research suggests that social support provides effective buffering across various stages of cancer, from diagnosis to survivorship and end-of-life care. Recommendations for cancer patients include actively seeking diverse forms of support, joining cancer-specific support groups, and openly communicating with loved ones. By utilizing these support systems, patients can experience reduced anxiety and depression, improved coping skills, and potentially better health outcomes, underscoring the critical importance of social support in comprehensive cancer care.
keywords: social support, cancer, quality of life.
Unique stressors of Cancer patients
Cases of cancer are steadily increasing, a new report revealed that while cancer deaths are falling, new cases are ticking upwards – from 1.9 million to 2 million from 2022 to 2023(Katella, 2024). According to the National Cancer Institute (2024), more than two million cancer cases and more than six hundred thousand deaths are projected to occur in the United States alone. In fact, not just adults and elders, children and teenagers suffer from cancer as well. The National Cancer Institute estimates that there would be close to fifthteen thousand cases in adolescents ages 0 to 19 alone, and more than fifteen hundred would die. Regardless of sex, race, ethnicity, or even age, anyone could be diagnosed with cancer: One may be in their mid forties, taking care of kids and family; one may have just retired, ready to travel and relax; one may even be a college student, looking forward to the future and deciding what job to do, however, then unexpectedly receive a cancer diagnosis.
Along with the diagnosis of cancer are the inherent stressors that come with it, as facing mortality and undergoing treatment burden patients uniquely. Such treatment brings about changes in patients’ personal paths of life, in their daily activities, work, relationships, and family roles, and is directly associated with a high level of patient psychological stress (Usta, 2012). Such stress can be categorized into three major categories: transformations of self-concept such as body image alteration, post cancer diagnosis identity alteration; pervasive uncertainty, including risk of mortality, and decision making; and changes in relationships.Cancer undoubtedly transforms the lives of patients and their loved ones.
Transformations of Self-concept:
A cancer diagnosis can drastically alter a person’s self-concept, causing significant psychological distress. Coming from the physical aspect, the progression of the disease and its treatment may create bodily transformations, which in turn can affect their self-concept. Cancer may significantly impact a patient’s body appearance during treatment because of treatment methods such as surgical interventions, chemotherapy, radiotherapy, and drug treatments, which may result in hair loss, scarring, weight fluctuations, loss of body parts, and other consequences (Wang & Feng, 2022). All of these changes could profoundly impact a patient’s body image, as they lead to a sense of disconnection from their own body, feelings of unattractiveness, and a loss of confidence.
Body image is defined as the figure that one has on their anthropometric measurements, contours, and shape of the body; and also the feelings correlated to these factors that affect the satisfaction with the body or specific parts of the body (Silva, Ferriani, & Viana, 2019). In other words, body image represents how we think, feel, perceive, and behave regarding our bodies (Hosseini & Padhy, 2023). Research has consistently demonstrated that negative body image is correlated with a range of both adverse mental and physical outcomes (Hosseini & Padhy, 2023). A 2020 research review highlighted that people with extreme body dissatisfaction are at greater risk of developing mental health and behavioral issues (Hosseini & Padhy, 2023). These include mood disorders, a disconnect between actual life circumstances and the person’s state of mind or feeling; Body dysmorphic disorder, meaning excessive concern with slight defects in physical appearance; Eating disorder, which is related to abnormal thoughts, beliefs, affects, and behaviors associated with body dissatisfaction (John Hopkins Medicine). It is implicated in Muscle dysmorphia, an extreme desire to gain lean muscle mass; low self-esteem; social anxiety disorder; major depressive disorder and even self-harm tendencies as well.
Moreover, a study examining female medical undergraduate students found strong correlations between three factors of body image, depression, and susceptibility to eating disorders (Manaf, Saravan, & Zuhrah, 2016). Through research, it is recognized that body image has a pervasive impact on mental health and overall well-being. As for cancer patients, along with different types of treatment are the temporary or even permanent consequences of scarring, hair loss, or body shape alterations. Both the patients’ fear of body image change prior to treatment and unsettledness about this change during treatment are detrimental to their well-being. Excessive concern about this body image change is detrimental to patients’ quality of life, with severe consequences potentially resulting in anxiety and depression (Wang & Feng, 2022).
Body image difficulties were found in patients with a variety of cancer sites, and were most common in the immediate postoperative and treatment period (Fingeret, Teo, Epner, & 2013). Two studies identified that up to 75% of patients with head and neck cancer undergoing surgical treatment express worries or embarrassment about one or more types of bodily changes (Fingeret, Teo, Epner, & 2013). According to another study interviewing 223 newly diagnosed head and neck cancer patients, 68% of people reported body image concern, which escalated to 89% post-treatment (Fingeret, Teo, Epner, & 2013). Moreover, a study conducted on women with breast cancer less than 7 months post-diagnosis found that 17-33% of them had body image concerns occasionally or frequently (Fingeret, Teo, Epner, & 2013). Research with long-term breast cancer survivors reveal 15-30% of people struggle with body image concerns to some extent (Fingeret, Teo, Epner, & 2013). These data show that body image concerns impact significant portions of cancer patients, with these issues often lasting into long-term survivorship. Body image concerns are also correlated with a wide range of detrimental psychosocial outcomes. Such concerns are found to be associated with higher levels of anxiety and depression (breast, colorectal), poorer quality of life (prostrate, head and neck, and breast), and difficulties with sexual functioning (Fingeret, Teo, Epner, & 2013). (gynecological, testicular, and breast).
Cancer may result in difficulty for patients to reconcile with their pre-cancer identity. The disease and its treatment can significantly impact a patient’s ability to engage in activities they previously enjoyed. Physical limitations of fatigue and pain may prevent them from participating in hobbies, sports, or even social events. Therefore their ability to perform daily activities and work that previously defined their identity becomes compromised. This loss of enjoyment and independence can contribute to diminished sense of self-worth as well as psychological distress.
Upon receiving their diagnosis, intense emotions such as shock, fear, anger, sadness, and disbelief follow. Most patients experience a sense of loss of control over their lives, as their normal routines are disrupted by doctor visits, treatments, and physical effects of the disease (Lewandowska, Rudzki, & Lewandowski, 2020). People around start using medical terms that patients may not comprehend, patients may feel unable to do the things they enjoy anymore, patients may wonder whether or not they can live. More importantly, the confrontation with one’s possibility of death can lead to a reevaluation of personal values, goals, and priorities — which may be a deeply stressful process to undergo. In this process, patients often struggle to integrate their cancer experience into their identity, pressured by the new reality as a cancer patient, which may create stress and feelings of isolation (Lewandowska, Rudzki, & Lewandowski, 2020). These are some of the many reasons that cancer patients often feel overwhelmed in the diagnosis stage. Moreover, cancer patients often cope with existential questions regarding their mortality and meaning of life, which can further challenge their self-concept and generate uncertainty (National Cancer Institute).
Pervasive uncertainty:
Uncertainty is a pervasive aspect of the cancer experience, which may impact all areas of a patient’s life and cause considerable stress. From the moment of diagnosis, patients are confronted with uncertainty and unknown. People around start using medical terms that patients may not comprehend. Terms such as “biopsy” and “metastasis” might be extremely unfamiliar for patients and get them confused upon mentioning. As cancer progresses and treatments start, patients might find themselves unable to do the things they enjoy anymore. Activities such as hiking, sports, and traveling may be hard to attend due to physical limitations of weakness and pain. Cancer-related fatigue may as well hinder or prevent patients from engaging in daily events such as shopping or hobbies they once found pleasurable.
Moreover, their life-expectancy is suddenly called into question. Concerns arise about the effectiveness of treatments, the likelihood of remission, the possibility of recurrence, and ultimately long-term survival. This uncertainty not only poses medical concerns, but also extends beyond that – affecting plans for the future, financial stability, and overall life journey.
Occupational uncertainty may be one of the core concerns. Patients often find themselves grappling with concerns regarding jobs. Will they be able to work during treatment? How would the absences affect their career? Will they be able to return back to work post-treatment? This occupational uncertainty can in turn lead to concerns about financial instability, adding another layer of stress to the already challenging situation.
Financial uncertainty causes huge concerns to cancer patients and their families as well. The high cost of treatment, potential loss of income, and ongoing medical expenses, especially involving hospital and surgical expenses can generate financial hardship (National Cancer Institute). This economic burden may also influence decision-making regarding treatment and adherence to care plans.
Furthermore, under situations of uncertainty, decision-making can also be a huge source of stress for cancer patients. They are frequently confronted with numerous complicated treatment options, each with its own risks and benefits (National Cancer Institute). The pressure to make the “right” choice under such circumstances can be overwhelming and harsh, especially with the decision-making required to be timely.
In conclusion, from medical concerns to financial stability, uncertainty permeates nearly every aspect of a patient’s life. This stress of constant ambiguity is also not limited to the patient alone but often extends to their family and support network. Loved ones and caregivers may also struggle with the unpredictability of the situation, which can create additional tension and stress within the family.
Relationship changes:
Cancer can alter a patient’s relationships on both personal and professional levels. Maintaining intimate relationships may be hard for cancer patients to manage. Patients often report feeling isolated and disconnected from their family and friends. This distance may come from factors such as the difficulty of communicating their illness, changes in their physical ability, and fear of burdening their loved ones. Roles within the family change as patients become more reliant on care and support. Family members such as partners, children, or parents may find themselves taking on new roles and responsibilities, which can potentially introduce stress and strain into the family dynamic. This role shift may be especially difficult for patients who are previously the main caregivers of the family (Cancer Research UK).
Furthermore, for young patients, cancer postponed the start of romantic relationships (Rabin, 2018). The marriage rate among cancer patients was also lower compared to both their siblings and the general population (Yoshida, Matsui, 2020). As for married people, research suggests that cancer can lead to marital distress and decrease relationship quality (Wang & Feng, 2022). One study involving 265 partners or ex-partners of cancer patients found that cancer contributed to more than half (57.4%) of the people’s separation. And even for those who stayed together, 83.7% admitted that cancer impacted their relationship, and with 55.9% reporting a negative impact (Frontiers, 2021).
In terms of professional relationships, patients may struggle with disclosing their diagnosis at work, in fear of the changes in how they will be perceived by colleagues. The required time off for treatment and recovery may manifest in job insecurity and might hinder career progression. Especially for those who devote most of their time to professional life, the inability to work at previous levels can be a huge source of stress and loss. As cancer patients slowly integrate treatment and regular hospital visits into part of their lives, there might be changes in their relationships with healthcare providers as well. On one hand these relationships can be a source of support, on the other hand it may be stressful as patients manage the emotional impact of frequent medical interactions with these professionals (Prip, Moller, Nielsen, Jarden, Olsen, & Danielsen, 2018).
Nevertheless, the psychological impact of cancer is not limited to these individual stressors, but oftentimes the combination of multiple factors. With these unique sets of stressors profoundly affecting patients’ mental health and well-being, it is crucial to recognize these psychological challenges, and more than necessary to address and cope with these issues as well.
Social support and its role for Cancer patients
To cope with the inherent stressors coming with cancer diagnosis, social support can play a huge therapeutic role in this. Social support is a key component in the care and well-being of cancer patients. It encompasses various forms of assistance provided by family, friends, healthcare professionals, and community members. According to National Institutes of Health (Ko, Wang, & Xu, 2013), “social support refers to ‘everyday behaviors that, whether directly or indirectly, communicate to an individual that she or he is valued and cared for by others.’” For cancer specifically, social support is redefined as a network of family members, friends, neighbors, and community members who provide psychological, physical, and financial support to patients with cancer when they need it (National Cancer Institute).
Social support is key for patients to adapt to their new situation, and it relates with higher quality of life in cancer patients — even in advanced cancer patients and their relatives. In fact, the lack of social support relates to higher numbers of anxiety and depression cases, which leads to lower quality of life (Frontiers, 2022).
Social relationships may be protective, as research indicates that those with a larger social network of friends and family tend to have lower risk for premature death of all types (Andersen & Dorfman, 2024). This is the case because social relationships can offer emotional connections, security, reassurance, and guidance. When faced with cancer, having supportive friends and family provides essential resources to cope with stress and the emotional turmoil that comes with treatment. This social support construct can be dissected into three categories: emotional, instrumental, and informational (Applebaum, Stein, Bessen, Pessin, Rosenfeld, & Breitbart, 2013). Each of these plays a vital role in helping patients maintain their mental well-being and improve overall quality of life.
Research conducted at Memorial Sloan-Kettering Cancer Center (Applebaum, Stein, Bessen, Pessin, Rosenfeld, & Breitbart, 2013), examining 168 patients with stage III or IV solid tumor cancers, found that higher levels of perceived social support (meaning the number of people they believe they could reach out to for support) were significantly correlated with better quality of life. With stronger social support negatively correlated with anxiety, depression, hopelessness, and positively correlated with quality of life (Applebaum, Stein, Bessen, Pessin, Rosenfeld, & Breitbart, 2013).
Another study conducted in China investigated the impact of social support on psychological distress among lung cancer patients (Tian, Jin, Chen, Tang, & Jiménez-Herrera, 2021). They had 441 lung cancer patients participate, and found a directly negative association between social support and psychological distress. The study suggested social support as one of the most important factors of reducing the severity of psychological distress. More interestingly, the study examined patient coping style as well. The study classified the patients’ coping style into three types: confrontation coping (actively seeking relevant information and strategies for reducing the influence of stressors), accomodation coping (adjusting preferences and orientations to suit given situational forces and constraints), and avoidance coping (aiming to escape instead of facing stress, denying the status quo or shifting attention). The study suggests that confrontation coping and accomodation coping benefits psychological adjustment, while patients with avoidance coping will experience more negative outcomes. However, regardless of coping style, social support can directly reduce the perceived stress among cancer patients.
Informational support:
Informational needs may be one of the most important needs of patients with cancer. Obtaining relevant information about the disease allows better decision making, informed response to treatment, reduced anxiety along with higher levels of quality of life (Khoshnood, Dehghan, Iranmanesh, & Rayyani, 2019).
Informational support is the acquisition of advice or information, involving guidance, advice, and knowledge to help patients understand and cope with their condition (Ko, Wang, & Xu, 2013). Informational support may come from healthcare professionals (doctors, nurses, and specialists provide medical information about diagnosis, treatment effects, and prognosis), support groups (other patients share practical tips and experiences about managing symptoms), and online resources (reputable cancer organizations provide extensive information on their websites)
Informational support plays a psychological role of empowering patients, reducing uncertainty, and increasing their sense of control over their situation, as it helps patients make informed decisions about treatment, understand and prepare for the side-effects, and better communicate with the healthcare team.
One study that surveyed 355 cancer patients found health care providers to be major providers of informational support, where professional sources (healthcare professionals) were rated significantly higher than personal sources (family, acquaintances, friends) (Bol, Rising, & Weert, 2022). In levels of satisfaction, Oncologist was rated highest for informational support, followed by nurse and general practitioner, and last with family and acquaintances rated almost equally low. Moreover, for disappointing sources of informational support (as in poor interactions that fail to provide promised help or discourage the expression of feelings), personal sources, including close family and friends (77.5%) were reported three times more often than professional sources (22.5%). For instance, one study conducted at the University of Málaga, Spain (Frontiers, 2022) found that informational support from friends was the strongest predictor of patients’ general health.
Another study examined informational needs of cancer patients in depth (Khoshnood, Dehghan, Iranmanesh, & Rayyani, 2019), finding that the informational needs are mostly awareness-oriented (needs for self-awareness, motivation to identify the situation and the environment). In the study there are three types of awareness-oriented needs: lack of knowledge about the nature of the disease, inappropriate control of the disease due to lack of knowledge, and lack of knowledge about cancer treatment methods. Among these three subcategories, according to the study, the lack of knowledge about the nature of the disease appears to be the most needed informational need. Patients expressed concerns such as, “I was diagnosed with non-Hodgkin’s lymphoma. I really wanted to know more about it, but the resources were not enough, and you could not access to them easily. I went to the library, but I could not get much information.” (P10). Other concerns include, “It would be very good if there was a source that could help us. For example, the center of special disease is in Khorshid street, but it’s very limited, and we do not know to whom they help.” (P2)
Instrumental support:
Instrumental support, also known as practical or tangible support, involves concrete assistance with daily activities, or in other words aid in any kind of money, labor and time. Cancer and its treatment can be physically debilitating, making it hard for patients to manage everyday responsibilities. Instrumental support helps easen these burdens, enabling patients to focus on recovery (Usta, 2012). Some examples of instrumental support regarding cancer may include transportation to medical appointments, assistance with household chores, financial aid, and help with child care (Helgeson and Cohen). This type of support may offset the loss of control that patients experience during cancer treatment by offering tangible resources that they can utilize to exert control over their experience.
A prospective study of Hispanic women being treated for early stage breast cancer examined the relationships between distress and different types (emotional and instrumental) of social support (Lopez-Class, Gomez-Duarte, Graves, Ashing-Giwa, 2011). They found that emotional support from friends and instrumental support from spouses at pre-surgery predicted lower distress post-surgery.
Instrumental support is crucial in reducing the practical stresses that come with cancer. It can reduce physical exhaustion, ensure patients’ attendance to necessary medical appointments, and help maintain a sense of normalcy in their daily lives. This support is often provided by family members, close friends, or community members and organizations.
Emotional support:
Emotional support may be one of the most fundamental forms of social support for cancer patients. Emotional support is the experience of feeling loved and having the certainty of having someone to trust (Frontiers, 2022). It involves providing comfort, empathy, love, and a sense of belonging during a time of great stress and uncertainty. Cancer diagnosis and treatment can be emotionally overwhelming, however, emotional support can help process negative emotions of fear, anxiety, and depression, providing a psychological buffer against the stresses of their illness. Going to a healthcare appointment with a loved one and holding their hand; going out for a walk together under stressed times; hugging a person and allowing for physical contact when they are scared; listening to their concerns and validating their feelings. These are all ways of providing emotional support for cancer patients, and the emotional support needed when undergoing such life-altering changes.
The role of emotional support for cancer patients may come from various sources. Family and friends (often the primary source of emotional support, loved ones can offer unconditional love, understanding, and a listening ear). Support groups (peer support from others who have experienced or are experiencing similar challenges can provide a unique form of emotional comfort and validation) Mental health professionals (Therapists or counselors can offer specialized emotional support and teach of coping strategies).
One study conducted at the University of Málaga, Spain (Frontiers, 2022) found that emotional support from partners was most effective in improving patients’ coping with the disease and reducing symptoms. The study observed that emotional support from the partner decreased nausea, vomiting and gastrointestinal issues, while emotional support received from family relates to less pain.
Recommendations for people undergoing stages of cancer
Cancer is a complicated disease that impacts all aspects of a patient’s life and not just the physical and emotional well-being. The journey through cancer, from diagnosis to recovery or palliative care, can be hard to navigate. In regards to the psychological aspect, social support may play a beneficial role in a patient’s quality of life (Wang & Feng, 2022). But how do we utilize these forms of support in more detailed means? What should we do to make our loved ones feel supported? And what should Cancer patients do themselves to gain effective support?
Different stages:
To understand how to provide support, it is essential to understand the different stages of cancer, and throughout these various stages are different effects and unique needs by the patient.
The diagnosis stage, with the initial stage involving the shock of receiving a cancer diagnosis, patients often experience anxiety and fear (American Cancer Society). It is crucial to offer emotional support to help process these emotions, offering a listening ear and providing a shoulder to rely on. Informational and Instrumental support may be important as well: helping gather information about the diagnosis and treatment options; assisting with practical matters like scheduling appointments; and last but not least, respecting the patient’s privacy and disclosure preferences as well.
Progressing to the treatment stage, which is a physically exhausting process of treatments including surgery, chemotherapy, radiation, and other treatments (American Cancer Society). In this stage, side effects such as fatigue, pain, and emotional stress may occur. It is important to offer patients informational support to manage treatment side effects, instrumental support of appointment commutes, companionship during hospital stays, and maintenance of normalcy and routine when possible.
Post-treatment and recovery stage may extend over a long period of time where patients cope with the aftermath of treatment (Mayo Clinic). It is essential for loved ones to support the patient’s transition back to regular life activities, help them reconcile with their post-cancer identity, and choices of lifestyle. Patients may have fears of recurrence as well, making it important to be compassionate with the patients’ ongoing physical or emotional challenges.
In the advanced stage, with Cancer unable to be controlled with treatment, feelings may differ evidently. Focusing on quality of life and comfort is oftentimes the key goal — assisting with advance care planning and end-of-life decisions, and helping to create meaningful memories. It is important to provide emotional support to not only the patient but also their family members and loved ones, and for them to cherish these experiences and memories.
Different providers:
Health care providers, including oncologists, nurses, social workers, and mental health professionals are the major providers of informational support. They can offer expert medical information and guidance (informational support), emotional support and counseling (emotional support), help connect patients with support services and resources (instrumental support), and facilitate communication between the patients and their support network. Moreover, healthcare teams should also assess patients’ social support needs throughout their cancer journey and intervene to ensure there is adequate support when necessary (American Cancer Society).
Indisputably, family members play a crucial role in providing support for cancer patients. Simply just being present, showing empathy and having a listening ear can provide a safe space for patients to express their vulnerability, fears, frustrations, and hopes (Columbia). Such emotional connection can significantly help reduce the negative feelings of anxiety and depression. Families can offer instrumental support by assisting with daily tasks and chores. This includes preparing meals, taking care of kids, organizing household, or providing transportation to medical appointments. Such help enables patients to focus on their treatment and recovery, providing them more security and comfort. Family members are also a huge source of encouragement and motivation. The celebration of small milestones and words of encouragement under stressful circumstances can help patients remain positive and stay strong. Family helps maintain stability, and moreover, is a huge source of comfort and reliance for cancer patients (Webb, Murray, Younger, Goodfellow, & Ross, 2021).
Other than family, friends, and healthcare providers, many cancer patients seek comfort in connecting with others who have similar experiences. Cancer support groups, both in-person and online, can offer patients a sense of community and belonging (emotional support), practical tips to help manage symptoms and side effects (informational support), emotional support from those who can truly empathize, hope and inspiration from survivors, and also a safe space to express fears and frustrations as patients sometimes might feel burdened talking to family as they are unwilling to cause stress. Healthcare providers should also be responsible for informing patients about available support groups and programs that may benefit them.
Admittedly, there may be some obstacles to effective support. For instance, there may be geographical barriers as patients’ support network — family and friends, live in different cities. Even if they were to be in the same city, patients might have to travel to different cities or even countries for medical appointments. There may be personal discomfort with asking for help as some may feel guilty burdening others. The providers of support (supporters) may experience burnout or compassion fatigue. And last but not least, for many families there may be financial constraints limiting practical support options to choose from.
How should one cope?
It is important for patients to develop coping skills to support themselves through their journey (American Cancer Society). These skills include:
- Educating oneself as much as one can about cancer and its treatment. People often gain a sense of control over what’s happening by learning more about the situation.
- Expressing one’s emotions, such as talking with trusted friends and family, or even expressing feelings through music, painting, drawing, or keeping a journal can help cancer patients deal with the emotional ups and downs of the experience.
- Exercising, if it is approved by the care team, can try to proceed with usual routines or start mild exercise programs such as walking, yoga, or stretching.
- Focusing on what they can control. Having a positive mindset may help emotionally, as optimism is associated with higher quality of life (Applebaum, Stein, Bessen, Pessin, Rosenfeld, & Breitfard, 2013). However, it is also normal to feel sad, stressed, or uncertain, and in fact it is quite common to feel that way.
Socially, in order to establish an effective social support system, it is also important to have effective social support strategies. The first step is building a regular support network (Andersen & Dorfman). Patients should be encouraged to build and maintain a diverse support network, including family, friends, healthcare professionals, and cancer support groups. Patients should utilize available resources. This includes talking to healthcare providers proactively, addressing emotional and practical needs, and clarifying confusion. Self-advocacy is essential as it is important to empower patients to speak out their own needs and seek support. This entails openly communicating concerns with members of the support network (people you identify as your support network), and to feel comfortable expressing needs and concerns.
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