Introduction
As the world population ages, cancer is affecting more and more older people (White et al., Reference White, Holman and Boehm2014). Sixty percent of cancer cases and 80% of cancer-related deaths are observed in people >65 years old (Cancer research UK, 2020); however, physical, psychological, and social changes and losses that come with aging overlap the challenges of cancer, which makes it difficult for the older people to cope with the health challenges (Perez-Zepeda et al., Reference Perez-Zepeda, Cardenas-Cardenas and Cesari2016; Aunan et al., Reference Aunan, Cho and Soreide2017; Lang-Rollin and Berberich, Reference Lang-Rollin and Berberich2018; Dumitrache et al., Reference Dumitrache, Rubio and Cordon-Pozo2018a, Reference Dumitrache, Rubio and Rubio-Herrera2018b). Factors, such as fragility (Perez-Zepeda et al., Reference Perez-Zepeda, Cardenas-Cardenas and Cesari2016; Carandang et al., Reference Carandang, Asis and Shibanuma2019), low health literacy, and economic problems, can prevent older cancer patients from accessing the healthcare services that they need (Özdemir and Bilgili, Reference Özdemir and Bilgili2014; Sao Jose et al., Reference Sao Jose, Amado and Ilinca2019). The older population is a disadvantaged group in terms of both high cancer incidence and prognosis (White et al., Reference White, Holman and Boehm2014; Aunan et al., Reference Aunan, Cho and Soreide2017; United Nations, 2017). Because of their physiological and cognitive changes secondary to aging, the presence of comorbid medical conditions, and psychosocial factors, older cancer patients have unique and complex needs (Bond et al., Reference Bond, Bryant and Puts2016; Aapro, Reference Aapro and Olver2018; Boyle et al., Reference Boyle, Alibhai and Decoster2019; Tsubata et al., Reference Tsubata, Shiratsuki and Okuno2019). Especially, the chemotherapy process can be extremely challenging for the older patient and may result in more complex needs. These unique and complex needs bring out the supportive care needs.
Supportive care is anything one does for the patient that is not aimed directly at curing his disease but rather is focused at helping the patient and family get through the illness in the best possible condition (Eduardo Bruera, Reference Bruera, Higginson, von Gunten and Morita2021). Supportive care needs of cancer patients is that physical, psychological, socioeconomic, information, and spiritual needs of individual patients should be identified, considered in the treatment plan, and satisfied (Nipp et al., Reference Nipp, Subbiah and Loscalzo2021). The supportive care needs must be met to help the older people manage cancer, which is an extremely challenging process, make it easier for them to adapt to this extraordinary situation, and maintain their quality of life (Lopez et al., Reference Lopez, Butow and Philp2019; Zhang et al., Reference Zhang, He and Liu2019; National Comprehensive Cancer Network, 2019b). The need for supportive care may increase, especially for those older patients who receive outpatient chemotherapy and must actively manage treatment and its side effects (Puts et al., Reference Puts, Papoutsis and Springall2012).
There is evidence that older cancer patients are not always able to access the care they need (Colussi et al., Reference Colussi, Mazzer and Candotto2001; Koll et al., Reference Koll, Pergolotti and Holmes2016), and nurses play an important role in meeting those needs. Oncology nurses can meet the supportive care needs by evaluating the patients and their families, determining their priorities, taking precautions against risks, and improving the quality of life because of these proactive activities (Koll et al., Reference Koll, Pergolotti and Holmes2016; Yates et al., Reference Yates, Charalambous and Fennimore2020).
It has been stated in the literature that these unmet needs may vary according to technology, the healthcare system, time, culture, and age (Pehlivan et al., Reference Pehlivan, Yıldırım and Fadıloğlu2013). A study conducted by Ayvat (Reference Ayvat and Atli Ozbas2019) within the Turkish culture reported that the supportive care needs of the patients may differ depending on their age and emphasized that healthcare professionals should consider that older people may have problems when expressing their needs (Ayvat and Atli Ozbas Reference Ayvat and Atli Ozbas2021). Determining the views and experiences of nurses regarding the supportive care needs of patients who have cancer and are older people, two special circumstances, can gather important data that will provide the information they need to enable them to determine the care and services for these patients.
The aim of the study was to understand the experiences and views of oncology nurses, who are the first contacts of older cancer patients, about meeting their unmet care needs and the differences between the needs of older and younger cancer patients’ needs. This study sought the answers to this question “What are the experiences and views of oncology nurses working in chemotherapy units regarding the needs of older patients?”
Methods
Study design
The present study was based on the phenomenological approach to qualitative research. Data were collected using one-on-one, in-depth interviews with the oncology nurses, as is the protocol for this research method. The data were gathered and reported according to the checklist created by the Consolidated Criteria for Qualitative Studies (COREQ) (Tong et al., Reference Tong, Sainsbury and Craig2007; Creswell and Poth, Reference Creswell and Poth2016).
Participants and setting
The study used convenience sampling of nurses who were members of the Turkish Oncology Nursing Society. These nurses responded to an announcement of the study posted in the Society's WhatsApp Group. The inclusion criteria for the study were as follows: (1) care of older cancer patients and (2) at least 6 months’ experience in oncology. The sample size of 12 was determined to reach data saturation.
Data collection, analyses, and synthesis
Both researchers, trained in qualitative methods, conducted the interviews (RN/PhD and RN/PhD, student) used in the present study. Based on a literature review, we developed a semi-structured questionnaire (Güner et al., Reference Güner, Hiçdurmaz and Kocaman Yıldırım2018; Chan et al., Reference Chan, Tsang and Ching2019; Cox-Seignoret and Maharaj, Reference Cox-Seignoret and Maharaj2020) and conducted the interviews from July 2020 through January 2021 using video conferencing because of COVID-19 restrictions at that time. Data were analyzed by two researchers. First, all audio records of the interviews were listened at least three times before being transcribed. The transcripts were then read several times by the researchers. Each researcher created separate codes that reflected the interview answers, after which they shared, discussed, and divided the codes into meaningful groups and 3 contexts, 12 themes, and 37 subthemes. All data analyses were conducted and reported in Turkish (Holloway and Wheeler, Reference Holloway and Wheeler1995).
Ethical approval
The study protocol was approved by the ethics committee from the Non-interventional Clinical Researches Ethics Board within which the study was conducted. The protocol conforms to the provisions of the Declaration of Helsinki. In addition, all participants gave their informed consent to participate, and the researchers ensured that patient anonymity was preserved. Verbal consent was obtained from the participants in the study with the Ethics Committee approval number 2020-16/63. Only the researchers could access the data, and the interview videos were encrypted and stored on their personal computers.
Results
Table 1 shows the nurses’ sociodemographic variables. All participants were women with a mean age of 43.25 years. The participants had worked in the oncology for a minimum of 5 and a maximum of 27 years. All participants stated that they were happy and satisfied with working at the chemotherapy unit.
Table 1. Sociodemographic characteristics of the study participants
Table 2 shows the study's contexts, themes, and subthemes. The data were categorized using the following three contexts: unmet needs, barriers to meeting these needs, and suggestions for meeting these needs.
Table 2. Views and experiences of nurses on the care needs of elderly cancer patients
Context 1: unmet needs
Theme 1: physical care
The participants remarked on the high care needs of older patients. Three subthemes — self-care, nutrition, and comfort — are included within this context.
The participants indicated that the patients were dependent on others to meet self-care needs and, if these needs were not met by their relatives, became unmet needs. Nutrition came to the forefront as one of the ways of relatives shows attention to and give care for the patient; however, for several reasons, such as failure in symptom management, financial insufficiency, and lack of information, the nutritional needs were not sufficiently met. In addition, the physical conditions of some chemotherapy units were not suitable for the older patients. For example, they expressed that chemotherapy chairs were not suitable, patients felt tired after the treatment, but they had to go immediately after receiving chemotherapy because there was no place where they could rest, and patients with low socioeconomic status and coming from out of town had problems in transportation. Briefly, that patients’ needs for comfort, such as rest and transportation, were not met.
“To say the truth, we have some seriously fragile patients. When I look at them and I must administer the chemotherapy ….Sometimes I don't have the heart to do it. You say to yourself: “He is already fragile. When he receives chemotherapy, he will collapse completely.” P10
Theme 2: psychological care
The subthemes were (1) being noticed, (2) expressing oneself, and (3) emotion management. The nurses commented that older cancer patients wanted to be noticed by their family, healthcare professionals, and the healthcare system; wanted to be remembered and paid attention to; and wanted their preferences considered when they were not able to express themselves and could not make demands. The data revealed that older patients experienced feelings of death fear, dependency, abandonment, anxiety, anger, shame, and loss, but that they were unable to receive the needed support for handling and managing those feelings. Two nurses commented as follows:
“Young people are able to express themselves better, they can say things like “I need this, and I want this” but older people feel sad because they feel that they are dependent on somebody or feel like they cannot do things themselves anymore, so they do not want to show these feelings.” P10
“People tell them about somethings all the time, but nobody listens to them.” P5
“When their relatives don't come, they get annoyed and angry: “Why didn't he come, did he forget me?”. There are also they have fears of abandonment.” P12
Theme 3: social care
This theme had the following two subthemes: (1) social activity and (2) contact with others. The fact that the patient and family were isolated because of the fear of infection, lack of information, cultural expectations for the older people to stay at home, increasing the protective approach by the family after cancer, and the healthcare system not providing the patients with the opportunity to meet social needs. Participants stated that their patients need to communicate with others were at the forefront, and they observed that patients had a need to talk with nurses on social issues and to interact with people.
“I can see that they are lonely, want to communicate, and need someone to talk to. They want to share. They want to talk about daily and routine stuff, about simple things of life. But there is something strange. It is like they are in a spiral, which they cannot escape. So, their ties with the outside world are severed …They can be very lonely.” P2
“They also want to talk about social issues. The famous questions “Are you married?” and “Do you have children?” (laughing).” P4
“They need to talk a lot, as far as I have observed. They even need us to sit next to them and even touch them.” P12
Context 2: barriers to meeting needs
Theme 1: patient characteristics
The “dependence,” “weakness,” and “not being able to demand” were categorized as factors that led to an increase in unmet needs. The increase in dependence after a cancer diagnosis was frequently stated. Dependence, which is explained by both cultural factors and deterioration in the physiological functions, was expressed not only as fact but also one of the biggest fears and feelings of shame for the older cancer patient. The participants remarked that older cancer patients experienced psychological as well as physical weakness from factors such as loss of their roles, economic losses, and low levels of functionality. The patient's low sociocultural level, dependency, and powerlessness were expressed as barriers that prevented them from making demands. The participants emphasized that older patients did not request information themselves and did not express their problems, and that their needs could be determined only when questioned by healthcare professionals.
“Because they think that they are already a burden, they do not tell their relatives or us what they need. They already are grateful to those caring for them. Hence, I think they do not express themselves, even when they really need it.” P8
“We have a lot of patients like they can't get up to the toilet frequently, they can't walk. He finds that insulting to have a diaper tied under him because my feet are not holding, so he doesn't want to drink water and go to the toilet.” P10
Theme 2: family attitude
Three subthemes were determined: (1) not having a relative that could provide care, (2) overprotection, and (3) difficulty in care. The long duration of cancer treatment and the burden of care for the older cancer patient may cause difficulties for the family. Conflicts may occur in these cases within the family and the older cancer patient may be exposed to neglect or abuse.
“First, they create a protective shield over the patient because the patient is old, and the family does not know what to do. They take care of all his affairs. Therefore, the patient feels like he cannot do anything, just sitting in the corner…Then, they undertake even simple self-care tasks. It is like the family even decides what the patient has to say.” P5
Theme 3: healthcare team/nurse attitude
There were two subthemes: (1) attitude toward the older cancer patient and (2) lack of information. Healthcare professionals were also affected by the social negative attitudes toward the older people. They underestimated the coping potential of the older cancer patient and prioritized their dependent roles. As a result of this attitude, it was revealed that older cancer patients were excluded from the decision-making mechanism, and health information was given to the patients’ relatives.
“What I have observed with all my colleagues, whether physician, nurse, or other staff members …. is that they are left between concepts such as “he is already at the end of the road, he can be left to his destiny, he can also sit in a corner at home, he could just not receive the treatment and he could just not do this.” P5
Nurses feel more knowledgeable and equipped to manage physiological care but had difficulties managing psychosocial care. They considered psychosocial care outside of their nursing functions and competencies, or they were not able to provide it because of their over workload. The participants’ statements on the lack of information and especially on meeting sexual care needs drew attention.
“Of course, our perspective on sexuality is also important. We still do not know how we can talk amongst even with each other, so we do not know what to say or how to say something on this subject.” P1
Theme 4: healthcare system
There are three subthemes: (1) problem in accessing the healthcare service, (2) problem in providing the service, and (3) failure to ensure the continuity of the service. Patients had difficulties reaching the healthcare, using technological devices, web applications, and to make appointments. There are not any special assessment tools for the older patients, and that there were no special procedures for them. Sometimes, returning home after treatment could be a problem, and continuing care at home is a big challenge.
“They need care at home but do not know how to afford it, they do not know how to pay for everything, they become desperate when the family is not enough in these times, they have difficulties in reaching care services when they go to the hospital for any reason or that they experience difficulties in reaching a doctor, nurse or caregiver when going to another hospital.” P5
“… the system is completely automated … The electronic hospital system requires good computer or smartphone skills and older people only have limited knowledge about technology ….We expect them to get support from a device that they have not seen their whole life.” P7
Theme 5: culture
There are four subthemes: (1) the older people being expected to withdraw socially, (2) the older people being accepted in a dependent role, (3) negative attitude toward older people's sexuality, and (4) gender are sub themes. There is an expectation by the older people to accept their dependent role and surrender to it, which leads to the older people being steadfast in not expressing their demands.
“…they are mostly described as grumpy or easy-going elders. Elders who do what they are told to or elders who do not do what they are told to. There are those sweet old people, who you find cute and are right in the middle of life, they say “Ok, I am ok with it, it comes from God”.” P1
Context 3: suggestions for meeting supportive care needs
There are four subthemes: (1) nurses and healthcare professionals, (2) institution, (3) healthcare system, and (4) academic community. Participants drew attention to the importance of healthcare professionals being more sensitive, asking the patient about needs, and learning the patient's expectations. They recommended developing a holistic-care philosophy, multidisciplinary teamwork, provide psychosocial support services to healthcare professionals, and plan for the older patients regarding the physical conditions of the institution.
Discussion
The data were examined within three contexts. The first comprised views on the unmet needs of older cancer patients. Nurses statied that the self-care, nutrition, and comfort needs could not be met, and reported that the needs of the older patients increased with increasing dependency because of both decreasing functions because of old age and the side effects of chemotherapy. In the Turkish culture, the care of the older people and patients is generally provided within the family, and the lack of family members to provide that care results in being unable to meet care needs.
The nurses have observed that patients’ relatives were constantly attempting to feed the patient. Culturally, feeding an individual is associated with good care practices; however, the study's results indicated that because of the lack of information, problems with symptom management, or the patient's insufficient economic situation, the older people could not be enough fed. Parallel to studies on the nutritional needs of older cancer patients receiving chemotherapy (Caillet et al., Reference Caillet, Liuu and Raynaud Simon2017; Forbes et al., Reference Forbes, Swan and Greenley2020), the present study has also emphasized the problem in meeting nutritional needs.
Psychosocial care, an important component of holistic care, has serious effects on meeting the physical needs (Aldaz et al., Reference Aldaz, Treharne and Knight2017); however, this study indicated that nurses had difficulty in providing psychosocial care and needed support. The lack of providing psychosocial care was related to the lack of knowledge and skills of psychosocial care, limited time, over workload, and insufficient staff. Understanding the interaction between physical and psychosocial care and providing both are important factors in terms of compliance with treatment, symptom management, quality of life, comfort, and decreasing of stress level (Güner et al., Reference Güner, Hiçdurmaz and Kocaman Yıldırım2018; Chan et al., Reference Chan, Tsang and Ching2019; Warth et al., Reference Warth, Kessler and Koehler2019). Thus, the Comprehensive Geriatric Assessment can be an effective method for to remove disruptions in the field (Mohile et al., Reference Mohile, Dale and Somerfield2018; Blanquicett et al., Reference Blanquicett, Cohen and Flowers2019). Distress thermometer, Barber questionnaire, Fried Frailty Criteria, G8, Groningen Frailty Index, Triage Risk Screening Tool (TRST), Vulnerable Elders Survey (VES-13), and Lachs’ screening test are other recommended methods for holistic care of older cancer patients (Aapro, Reference Aapro and Olver2018; National Comprehensive Cancer Network, 2019a, 2019c).
As in previous studies (Colussi et al., Reference Colussi, Mazzer and Candotto2001; Nelson et al., Reference Nelson, Saracino and Roth2019), the study participants stated that older cancer patients were better able to cope with cancer psychologically and that some cultural factors had placed older cancer patients into specific categories. It is expected that older patients “accept their faith, because it comes from God,” and to be grateful for the care and treatment they receive. It was inevitable that the study participants were affected by the culture in which they live. As in studies conducted within other cultures (Schroyen et al., Reference Schroyen, Missotten and Jerusalem2016; Sao Jose et al., Reference Sao Jose, Amado and Ilinca2019), data results also indicated that older cancer patients were labeled with descriptions such as “grumpy,” “cute,” “adorable,” “will die anyway,” and “will not tolerate chemotherapy.” Other studies have reported that older cancer patients exposed to the double stigma by both society and their families of being both older people and a cancer patient internalizes this situation (Chasteen and Cary, Reference Chasteen and Cary2015; Bulut and Cilingir, Reference Bulut and Cilingir2016; Schroyen et al., Reference Schroyen, Marquet and Jerusalem2017). Those who accept this stigma and internalize these cultural expectations are then not able to express their wishes or make any demands in terms of care.
Nurses observed feelings of anxiety, fear of death, anger, and shame in older cancer patients but that these patients were unable to express their feelings. Hong et al. (Reference Hong, Zhang and Song2015) have reported that 43.8% of older cancer patients described high levels of distress and that emotional problems were the leading cause of that distress (Hong et al., Reference Hong, Zhang and Song2015). Ayvat and Atli Ozbas Reference Ayvat and Atli Ozbas2021 has found in the study, conducted within the Turkish culture, that older cancer patients have levels of psychological needs like those of younger cancer patients; therefore, the widespread acceptance by the study participants that older cancer patients can better cope and accept the process may be because the older patients do not express the psychological difficulties that they experience. In fact, the participants in the present study also observed that older cancer patients do not express themselves.
Although the overprotective attitude of the family is defined as “putting a protective shield over the older people,” it later turns into the incapability of the family to cope with the situation because they get weary as the disease progresses. Some nurses believed that the older people cancer patients should surrender themselves to their children during this process and that this point of view is also supported by society. This makes the older people cancer patient more dependent, and this increasing dependency brings much more responsibility to the patient's caregiver. This increased responsibility, knowledge deficiency, and ineffective family communication create family conflicts (Fjose et al., Reference Fjose, Eilertsen and Kirkevold2018; Wittenberg et al., Reference Wittenberg, Reb and Kanter2018; Wang et al., Reference Wang, Mazanec and Voss2021). As a result, the older people cancer patients are literally put into a corner of the home and not asked what they want or even listened to. Do not want to participate in the care increases dependency and affects them bio-psychosocially (Schroyen et al., Reference Schroyen, Missotten and Jerusalem2016). It is important for nurses to support the patients’ independence by asking them about their wishes and including them in the care.
Another issue that drew attention in the present study was that no theme for the information and sexual needs of older people patients was identified. The need for communication of older people cancer patients found its place under social care; however, answers to the questions about the needs regarding sexual care and information were that the older people did not make any demands for these subjects. Participants stated that they had difficulty evaluating the sexual needs of older people cancer patients, and sexuality was a taboo for both the patient and the nurse. It is also stated in the literature that nurses experience difficulties providing psychosocial care (Güner et al., Reference Güner, Hiçdurmaz and Kocaman Yıldırım2018). The negative attitude toward the sexuality of the older people is present in many parts of the world, and that healthcare professionals have difficulty discussing it (Leung et al., Reference Leung, Goldfarb and Dizon2016; Albers et al., Reference Albers, Palacios and Pelger2020).
The results of this study found that an important factor that results in the interruption of care is access to services by older people cancer patients, especially for those with low socioeconomic status and who have problems using technology. Even though it is believed that the older people have saved their money and not have economic problems, there is still the possibility of economic problems because of cancer treatment (Erden and Boz, Reference Erden and Boz2018). In addition, older people cancer patients who are trying to adapt to developing technology encounter technological infrastructures or computers with which that they are not familiar when they enter the hospital. Glomsas et al. Reference Glomsås, Knutsen, Fossum and Halvorsen2021 have reported in their study with older people patients on telehealth applications that the participants need more training and information on their use.
The continuity of healthcare increases the compliance of both the patients and their relatives with the disease and treatment, which can result in them feeling safe (Colussi et al., Reference Colussi, Mazzer and Candotto2001; Steven et al., Reference Steven, Lange and Schulz2019). The nurses stated that the care was provided only in the hospital, and that there were problems in ensuring continuity. It is believed that regular follow-up by healthcare workers would support both the family and older people cancer patients in adapting and coping with the disease.
Limitations
Because of the COVID-19 pandemic, the present study was conducted online because it was presumed that there would have been problems reaching the participants face to face. This may be considered as a limitation of this study conducted using the phenomenological method; however, because the study was conducted through the Turkish Oncology Nursing Society, the participants were provided the opportunity to participate without any institutional connection and physically outside of their institution. The study participants stated that they were able to express themselves freely and were selected from very different regions within Turkey, which could be considered as the strength of the study.
Conclusion
Nurses play an important role in identifying and meeting unmet psychosocial needs. The results of the present study indicated that older people cancer patients had problems in identifying, expressing, and making demands for their needs and that their culture contributed to this situation. It is recommended that nurses serving in a chemotherapy unit do a holistic assessment of older people cancer patients, have perspective on transcultural care, be aware that these patients may not be able to express their needs, be more sensitive toward them, ensure that they can hear their voices.
Acknowledgements
The authors would like to thank all participants in this study.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Conflict of interest
There are no conflicts of interest.
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