Opinions of patients with oncological disease regarding the need for support from their families

Introduction

Currently, there are no families untouched by chronic illness. Unfortunately, its appearance drastically changes the functioning not only of the patients themselves but also of those in their closest environment. It means that people who are ill and their families become particularly in need of, and seek, support and assistance – both from their immediate surroundings and from professionally trained people capable of providing help.
Every person during thei life needs a certain type of support. It is not always related solely to difficult situations or stress, but its demand increases in challenging, problematic situations. The support search largely depends on the circumstances that have arisen and the person in the specific situation [1], and it may have various forms. In general, it is plausible to state that social support serves 2 main purposes: it can reduce the impact of stressors or mitigate them and help maintain physical and mental well-being by providing an outlet to relieve tension associated with difficult situations [1].
Researchers studying social support have developed 2 hypotheses regarding social support mecha­nisms. The first is the hypothesis of the so-called main or direct effect. It is based on the belief that support generally plays a beneficial role in health (well-being) because, regardless of the level of stress, it provides a sense of belonging that acts in a gene­rally strengthening manner. That support is an independent factor from other variables and may be defined as a relatively stable type of relationship with the environment that prevents the occurrence of strong stress [2, 3]. The second hypothesis, known as the buffering hypothesis, views support differently, namely as a mediating variable between life events and their consequences for a person’s well-being and health. Support becomes active only during stressful situations and serves as a buffer to reduce tension and facilitate overcoming difficulties or crises. The role of support is to alleviate the appraisal of the situation in which a person finds themself, thereby enhancing resilience [2, 3].
Support provided to another person (social support) may be informational, instrumental (service-oriented), or emotional. The issue of social support is studied in various disciplines such as psychology, education, and sociology. Hence, there is difficulty in adopting a definition that unequivocally defines what it is. Informational support (knowledge, instruction) includes educational activities. Health education is a process in which people acquire broad knowledge about their own illness or that of a family member, how to take care of their health, and the health of people in the environment in which they live [4].
The study aimed to explore respondents’ opi­nions regarding the need for support and knowledge expansion about cancer among their families.

Material and methods

The following research questions were posed:

1. What type of support do patients think their fa­mily receives, and from whom?
2. In the opinion of patients diagnosed with cancer, is educational support for their families necessary to prepare them to support the patient?

Additionally, the following research hypotheses have been formulated:

1. According to patients, their family receives primarily informational and emotional support, less often instrumental and evaluative support, most often from the closest family.
2. Patients with diagnosed cancer believe that educational support for their families is necessary.

The study has been approved by the Bioethics Commission of the Medical University of Biały­stok UMB (APK.002.175.2020) and the Directorate of the Białystok Oncology Centre. The main study was preceded by pilot studies involving a group of 20 patients with cancer disease to assess the clarity of the questionnaire questions. There was no need to modify the questionnaire. A total of 200 survey questionnaires were distributed, and 190 were returned. The main study was conducted between January 2020 and December 2022. A total of 185 completed questionnaires from people who had correctly filled out the survey packets were included in the study. The remaining surveys were excluded due to incomplete responses. Inclusion criteria for patients included a diagnosis of cancer and consent to participate in the study.
Respondents received the questionnaires to fill out after giving verbal consent to participate, and a single interviewer managed distribution. The participants were informed that the study was completely anonymous, participation was voluntary, it complied with the Personal Data Protection Act, the collected information would be used solely for scientific purposes, the results would only be presented in aggregate form, withdrawal could be decided at any time during the questionnaire completion without any consequences, and participation in the survey was equivalent to the consent to fill out the questionnaire. After completion, the participants submitted the surveys into a specially prepared container in the Oncological Surgery Department of Bialystok Oncology Centre.
The study was conducted according to a diagnostic survey method applied using a questionnaire technique that included a proprietary questionnaire, the family affluence scale (FAS) [5], and the Social Support Scale by Kmiecik-Baran [6, 7].
Among the respondents, 83 individuals (45%) resided in towns with populations of up to 15,000, while 33 individuals (18%) lived in rural areas. Most respondents obtained a low score on the FAS scale, indicating low family affluence resources (50% – 93 people). Only a small proportion of the respondents had high affluence resources (8% – 15 people). The average score obtained by the respondents was 4.3 ±1.97 points (min. 1 point, max. 8 points), indicating an average level of affluence resources. The most frequently re­peated score was 4 points, obtained by 33 people.

Results

The patients surveyed indicated that they perceived the greatest level of informational support, including important information and advice, as being provided by doctors (average score: 11.2 ±2.3 points) and other family members (average score: 10.6 ±3.1 points). The highest informational support provided to the respondents’ children came from other family members (average 9.7 ±2.6 points) and nurses (average 9.3 ±2.8 points). Among the spouses/partners of the respondents, the lowest support was received from friends (average 7.8 ±3.1 points), while children received the lowest support from psychologists (average 7.2 ±3.0 points). The results are presented in Table 1.
In terms of instrumental support, defined as providing necessary resources that may be used for coping with stress (giving specific help, such as lending money, doing shopping), according to the respondents, the highest level of support for spouses/partners came from other family members (average 9.1 ±2.8 points). A lower level of support directed towards spouses/partners came from psychologists (average 6.6 ±1.9 points) and doctors (6.7 ±2.4 points), while the least support came from nurses (average 5.5 ±1.4 points) and psychologists (average 5.6 ±1.7 points). For children, the support in this regard was most noticed by patients as coming from friends (average 9.1 ±2.8 points), while the least support came from nurses (average 5.5 ±1.4 points). The results are presented in Table 2.
In the context of evaluative support (making an individual understand that they possess capabilities [abilities, skills, etc.] that are important for the proper functioning of the group or individual), the spouses/partners of the respondents, in the opinion of the surveyed people, felt that it came from other family members (average 9.9 ±2.8 points) and friends (average 9.3 ±3.1 points). Eva­luative support directed towards children was also most noticeable from other family members (average 10.1 ±2.8 points) and from doctors (average of 9.5 ±3.0 points), according to the patients. The lowest level of support directed towards spouses/partners, according to the respondents, came from psychologists (average of 7.0 ±2.9 points), while towards children, it came from nurses (average of 8.2 ±2.9 points). The results are presented in Table 3.
Emotional support (making an individual understand that they can always count on this particular group or person and that help will be provided at any time) for their spouses/partners, according to the respondents, was most noticeable from other family members (average of 10.9 ±2.6 points) and from friends and psychologists (both groups averaged 10.5 ±2.5 points – friends; 10.5 ±2.3 points – psychologists). The lowest level of such emotional support was from nurses (average of 8.2 ±2.4 points). According to the surveyed patients, emotional support for children was most strongly felt from other family members (average of 10.4 ±2.3 points), and the least from psychologists (average of 8.0 ±2.7 points) and nurses (average of 8.9 ±2.5 points. The results are presented in Table 4.
The overall support score indicated that, according to the respondents, the highest sense of support for their spouses/partners came from other family members (average of 41.9 ±6.0 points) and friends (average of 36.4 ±6.6 points). Among medical professionals, doctors were found to be the most supportive (aver­age of 36.1 ±4.9 points), while psychologists were the least supportive (average of 33.8 ±5.7 points). Regarding the support directed towards the respondents’ children, other family members also provided the most help (average of 40.5 ±5.1 points) as well as friends (average of 37.1 ±5.4 points). Among medical professionals, doctors were the ones who provided the most help (average of 35.0 ±5.7 points). The results are presented in Table 5.
The highest proportion of respondents (49% – 91 people) believed that the problem with family members providing support was related to their lack of knowledge about the disease.
Most of the respondents believed that their families had the opportunity to expand their knowledge about their illness (53% – 99 people). Conversely, 45% (84 people) claimed that such an opportunity did not exist, while 1.1% (2 people) were unsure.
The largest group of respondents believed that their families only knew as much as the patients themselves conveyed to them (49% – 91 people). According to them, the most common sources of information accessed by families of patients were the Internet – 47% (87 people), followed by doctors – 26% (48 people), medical books/articles – 14% (26 people), TV – 10% (18 people), nurses – 10% (18 people), associations/foundations – 7% (13 people), radio – 5% (9 people), and other patients – 2% (4 people). The question allowed for selecting more than one correct answer; hence, the answers do not sum up to 100%.
According to most surveyed patients, their fami­lies should expand their knowledge about the illness (51% – 95 people). Conversely, 38% (71 people) believed their families did not need to acquire new information, while 11% (19 people) did not have an opinion on the matter.
According to the respondents, the topics that should be included in the education of their families are primarily the diet that patients should follow (16% – 30 people) and the best rehabilitation methods for them (15% – 28 people). A small portion of respondents indicated treatment methods (9% – 17 people) and cancer prevention (3% – 6 people). The question allowed for multiple correct answers, so the responses did not sum up to 100%.
The largest group of respondents stated that the doctor was the appropriate person to educate families about cancer (49% – 91 people). 34% (63 people) believed that the patient themselves should provide such information, while 15% (28 people) thought it should be done by a nurse, and 2% (3 people) suggested another patient.
The respondents considered workshops (38% – 71 people), lectures (31% – 58 people), individual conversations (23% – 43 people), and film presentations (8% – 15 people) to be the best methods for providing information about cancer to their families. Significant (p = 0.000031) correlation was demonstrated between the respondent’s age and the preferred form of education for their family members The results are presented in Table 6.
The data analysis resulted in confirmation of hypo­theses 1 and 2.

Discussion

The paradigm of viewing the family from a systemic approach allows us to assert that illness (based on the principle of circular causality) significantly affects not only the person who is ill but also all family members, ultimately leading to disruptions in the overall functioning of the family [8–10].
The changes that occur within a family may be universal, affecting most families, but there are also specific, atypical changes that are unique to a parti­cular family. According to sociologist Professor Anna Titkow, it is crucial to recognise the psychological discomfort caused by illness, which affects the patient and, consequently, their family, either temporarily or permanently. The course of the treatment process and its duration also significantly impact the family’s ability to take on new tasks, enabling them to avoid the negative consequences of the illness and to fulfil new, often previously unknown, responsibilities [8–10].
Care for patients with cancer disease is increasingly being provided in the home environment, making family members the primary caregivers. They assist the patient with daily activities and take over their usual responsibilities. When necessary, family members even perform medical tasks for the patient.
Unfortunately, depending on the stage of the disease, the treatment methods used, and the patient’s condition, the symptoms can become increasingly noticeable. The patient’s appearance changes, pain and fatigue emerge and intensify. Family members caring for the patient may develop frustration and mood disorders [11–14].
Piotrowska [15] included in her study 10 primary caregivers of terminally ill patients, and it transpired that they experienced issues related to changes in family functioning, emotional reactions, and moral dilemmas. The disorganisation of family life involved changes in the roles of its members, prioritising the needs and plans of the patient and caregiver, re-evaluating family problems, and reducing social contacts. Ferrario et al. [16] showed that 20% of caregivers of cancer patients had difficulties in fulfilling additional responsibilities arising from caring for them (e.g. frequent trips to the hospital for medical checks), and 60% of caregivers had to give up their previous habits or ways of spending leisure time (such as hobbies or meeting with friends). Tre­vino et al. [17] studied 540 caregivers of patients with advanced cancer and 9282 people from the general population. It was found that among caregivers of cancer patients, compared to the general population, the likelihood of experiencing an episode of depression was more than 7 times higher, the risk of generalised anxiety disorder was 3 times higher, and depression and generalised anxiety disorder co-occurred 2.5 times more frequently [17]. Hu et al. [18] over 7 years observed over 540,000 spouses/partners of cancer patients and nearly 3 million people with healthy spouses/partners and found a higher risk of developing any mental disorders, depression, anxiety, stress-related disorders, and substance abuse among spouses of cancer patients compared to those whose partners did not receive such a diagnosis. The risk was particularly high in the first year after cancer diagnosis and more pronounced among spouses of patients with a poor prognosis, advanced-stage disease, or if the patient passed away during the observation period [18]. Pan et al. [19] analysed 85 studies published in 2001–2021 across 25 countries involving 6077 caregivers of patients. It allowed them to determine that the average prevalence of depression among caregivers was 25.14%. However, this varied depending on the geographical region, the stage of cancer in the patient, the level of depression, and the assessment measures used.
In the available literature, there is a lack of precise data on the frequency and extent of support offered to families of people dealing with cancer. Our own research revealed that in half of the cases (50%), spouses of patients were offered psychological support, primarily by doctors (86%). In the case of children, the majority of respondents (66%) stated that their children did not receive any offers of psychological support [20].
According to Rospêk [21], a challenge for therapists is early identification of family needs because the well-being of patients is closely linked to that of the family (synergistic effect). The author [21] emphasises that family therapy provides an opportunity for individual family members to make informed decisions, which helps reduce their anxiety about the unknown situation related to cancer in the family. Problem-solving therapy aimed at providing strong psychological support to the family and reducing their anxiety is referred to as COPE: Creativity – using diverse perspectives to diagnose the problem; Optimism – a positive but realistic approach to problem-solving; Planning – setting goals and determining steps to achieve them; and Expert Information – helping caregivers understand where and when to seek professional help [21].
This has been confirmed by the research conducted by Bernard et al. [22], in which 121 patients treated in the Greater Poland Oncology Centre participated. It transpired that 94% of the respondents admitted to having experienced anxiety during diagnosis and therapy. Over a half of the respondents felt high levels of anxiety during their stay in the oncology hospital. This is particularly important because medical staff provide social, informational, and emotional support that greatly helps patients overcome negative emotions associated with therapy. Emotional support also contributes to improving the quality of life during illness.
Cancer patients and their families currently have various opportunities to access additional information about the disease, treatment options, and avail­able forms of support. Kieszkowska-Grudny et al. [23] analysed responses from 111 patients with solid tumours and 108 patients with haematological tumours, indicating that most patients were interested in receiving additional information about their health condition. The people who would primarily provide information to patients were doctors in most cases (92%), followed by nurses (76%), family members (57%), and friends (33%) [23]. The research conducted by Bielasz et al. [24], related to seeking knowledge about their disease and using alternative therapy methods among patients undergoing radiotherapy, also found that 83% of those surveyed expressed a desire to expand their knowledge beyond the information provided by medical staff. The main sources of additional knowledge were non-medical newspapers and magazines (25%), conversations with people in their immediate environment (22.9%), television (20.8%), and the Internet (14.6%) [24]. The findings were also confirmed by the study conducted by ¯yciñska et al. [25] on 411 respondents. A significant majority of the participants (79.5%) expressed a desire to expand their knowledge about their disease. The most popular sources of knowledge in the analysed group were doctors (38.9%), followed by popular science medical journals (15.47%), and friends and acquaintances (14.11%) [25].
Unfortunately, no published studies were found in the available literature describing the desires and forms of knowledge acquisition by the closest family members of cancer patients. Our research showed that in the opinion of most of the patients surveyed, their families had the opportunity to expand their knowledge about the disease (53%) and would like to receive additional information beyond what they already know (51%). The preferred forms of knowledge transmission, according to the majority of respondents, would be workshops (38%), followed by talks (31%), individual conversations (23%), and film presentations (8%). The primary sources of information about the disease were the patients themselves (49%) and the Internet (42%). The person responsible for conveying knowledge to the family should be the doctor (49%) and the patient (34%).
Health education, as a component of informational support, is one of the top priorities for medical staff, and it should be conducted by all therapeutic team members. It is essential to educate patients and their caregivers to provide proper and purposeful care and contribute to their speedy recovery to full functionality. Informational support (cognitive support) involves providing people with information about the correctness of their actions and giving advice that facilitates problem-solving and suggests ways to cope with specific situations [26]. This type of support enables easier recognition of stressful situations and the essence of one’s own problems. Feedback about a person’s behaviour allows for the correct adjustment of one’s approach to the issues [26]. In the realm of health, informational support involves enriching the knowledge of the patient and their close ones about the disease and disability, namely education. It also includes information about treatment options, rehabilitation, health-promoting behaviour, and existing self-help groups and support institutions [27, 28]. In the present study, patients stated that the highest level of informational support provided to their children came from other family members (average 9.7 ±2.6 points) and nurses (average 9.3 ±2.8 points). Unfortunately, in terms of instrumental support, the lowest level directed towards spouses/partners came from psychologists (average 6.6 ±1.9 points) and doctors (average 6.7 ±2.4 points), while for children, it came from nurses (average 5.5 ±1 point). Additionally, according to the respondents, the lowest level of support directed towards spouses/partners also came from psychologists (average 7.0 ±2.9 points), and for children, it was from nurses (average 8.2 ±2.9 points). Similar results were observed for emotional support: spouses/partners received the least emotional support from nurses (average 8.2 ±2.4 points), and children received the least from psychologists (average 8.0 ±2.7 points) and nurses (average 8.9 ±2.5 points). These results are surprising because nurses and psychologists are expected to support the patient and their families within their professional roles.
Despite having been conducted for several decades, research on social support is still in the process of verifying existing hypotheses and formulating new ones. Therefore, there is a continuous need for new studies on this topic. The current results clearly indicate the necessity for systematic research and monitoring of patients and their families, which would allow for the collection of data on their feelings and experiences. It also shows that it is essential to identify ways to assist patients, especially in terms of comprehensive social support at the time of diagnosis and later: during treatment, disease progression, or remission.

Study constraints

The research was conducted between January 2020 and December 2022 during the COVID-19 pandemic, which made data collection challenging due to the reduced number of hospitalised patients. There are no studies in the literature regarding the support received by families in the perception of patients with oncological disease.

Conclusions

According to the surveyed patients, their family members received the highest levels of informa­tional, instrumental, appraisal, and emotional support primarily from other family members and the lowest from psychologists and nurses.
Most cancer patients believed that their families should expand their knowledge about their disease to support them, and they saw the role of the educator primarily as the doctor.

Disclosures

1. Institutional review board statement: Not applic­able.
2. Assistance with the article: None.
3. Financial support and sponsorship: None.
4. Conflicts of interest: None.

References