Informal Provision of Care for Cancer Patients Through Home Caregivers Photo: Peter Senko (2018)

Oncology Disease

Cancer can be perceived from multiple perspectives in the context of multidimensionality.

  • It is, on the one hand, considered a psychosomatic disease and seen as a result of psychosocial stress situations or psychosocial risk factors (Raudenská, Javůrková, 2001); it is assumed that it emerges and develops on the basis of the synergy of many factors, including biological, psychological, social, spiritual, environmental and others.
  • It causes numerous consequences, including social and financial ones; it affects the physical and mental condition of the individual, influences spirituality, sexual life, and changes lifestyle.
  • The disease intrudes simultaneously on the patient, their family environment, and the wider social surroundings; it does not arise as an isolated personal experience.
  • This disease is a multidimensional problem that does not belong only to healthcare; in its solution several disciplines have their place, including social work.

According to the International Agency for Research on Cancer (2012), every year the number of oncology patients who must bear the consequences of diagnosis, aggressive treatment, and psychological pressure on social status in society is increasing. Cancer causes every sixth death in the world, which makes it the second leading cause of death after cardiovascular diseases (Naghavi et al., 2017). It is estimated that in 2016, 8,9 million people died from various forms of cancer. IHME (The Institute for Health Metrics and Evaluation - Institute for Health Metrics and Evaluation) gives an error range around this figure, with lower and higher estimates ranging from 8,75 to 9,1 million (Roser, Ritchie, 2018).

Despite increasing mortality, there is simultaneously a pronounced increase in global cancer survival rates. It rose from 50 to 67% between 1970 and 2013 (Roser, Ritchie, 2018). Although cancer was known as a virulent disease (Byar et al. 2006), it is now considered a chronic disease (Mandincová, 2011; McCorkle et al., 2011; Tschuschke, 2004; Ugur et al., 2014). Patients with cancer therefore survive longer; survival becomes a way of life, which also affects the lengthening period of care for oncology patients. For persistent side effects of cancer treatment, late effects, satisfaction of psychosocial needs, and possible relapse, demanding support is required. Patients are confronted with serious psychosocial problems, on which, in addition to doctors, psychologists, oncology social workers, and family also participate in management according to Šiňanská and Kočišová (2017).

Increasingly, cancer is recognized as a family disease, which means the disease affects not only the diagnosed person but also their social environment. Attention in professional literature in recent years to the effects of cancer on the patient’s whole family also demonstrates this (e.g., Čadková Svejkovská, Chrdlová, Slavíková, 2013; Ferrario et al., 2003; Kim, Given, 2008; Tóthová, Žiaková, 2016; Woźniak, Iżycki, 2014).

Home Care for Oncology Patients

The above-mentioned facts indicate an existing space and opportunity for involving the family in care for oncology patients throughout the entire trajectory of the disease, from initial diagnosis, through transition to treatment, remission, disease progression, relapse to terminal stage and death. Sabolová Fabianová and Žiaková (2016) point to the fact that, when possible, patients are discharged home from hospital earlier than in the past and with greater care needs directed to caregivers, that is, family members. Increasingly, more care for an oncology patient is provided at home, and family members therefore become caregivers who help with everyday tasks, replace them in fulfilling obligations, and are helpful in implementing medical procedures (Woźniak, Iżycki, 2014). Home care is gradually becoming increasingly significant. In this context, Given, Given and Sherwood (2012) note that 70% to 80% of care for people with cancer is provided by family caregivers. Girgis and Lambert (2009) highlight home care provision as a phenomenon that grew in the past decade.

Family caregivers face many challenges depending on various factors (e.g., who is in the patient and caregiver roles, what type of diagnosis, and what stage the disease is at, among others). Family members accompany their loved ones on an emotional rollercoaster with consequences for quality of life and social well-being. Bruhn (2016) states that the patient’s illness becomes the caregiver’s identity.

Becoming a home caregiver is usually something people neither expect nor choose, but in the face of a cancer diagnosis, family members feel responsible for providing care (Senden et al., 2015). Although most caregivers in the family are motivated to take on this role out of love and devotion to the care recipient (Sheehy, 2011), it is not a simple matter. The burden of such care arises from an imbalance of care demands relative to caregivers’ personal time, physical and emotional condition, financial resources, social obligations, and other multiple roles they perform (Given, Given, Kozachik, 2001). In this context, Williams and McCorkle (2011) note that caregivers’ psychological burden often exceeds the patient’s psychological burden, and Mitschke (2008) likewise argues that a cancer diagnosis has an objectively greater impact on the family than on the patient alone.

It is a complex task that is usually incorporated into other roles a person has in the family. Care for a person with cancer has a chronic nature, affecting every aspect of the patient’s and their family’s life (Otis-Green, Juarez, 2012). Bruhn (2016) describes caregiving as a long-term, ongoing and stressful commitment, as a dynamic relationship that changes continuously according to patient needs.

Methodology and Sample Description

The author explicitly focused her perspective on the social aspects related to care for oncology patients provided by home caregivers, with particular attention to home caregivers, in order to define the application of social work with this group as social work clients.

Content analysis of documents was used to prepare the article. Relevant sources were obtained through the scientific databases Proquest, Science Direct, Scopus, Springer Link and Web of Science. Searching was carried out using the keywords “home caregiving/home care,” “cancer,” and “social work/social care.” A total of 6,937 references were found: specifically, 3,433 studies via Proquest, 1,584 through Science Direct, 16 in Scopus, 1,898 in Springer Link and 6 in Web of Science.

Exploration of available sources was carried out between May and August 2018, during which duplicates and sources not addressing this issue in relevant contexts were removed. Based on the analysis, the author reached results summarized in the following section.

Results

By focusing on the mentioned social aspects related to care for oncology patients provided by home caregivers, with a focus on these caregivers, professional literature primarily concentrates on changes in family roles in the family of an oncology patient, social network and social support for home caregivers, their financial burden, and changes in work and leisure activities. Both disadvantages and advantages for caregivers resulting from this form of care are considered.

BURDEN OF HOME CAREGIVERS

Home care begins with the diagnosis of cancer and requires effort and management. Evidence suggests that caregivers of people with cancer tend to experience a high level of burden (e.g., Emanuel et al., 2000; Ferrario et al., 2003). In the qualitative study by Leonidou and Giannousi (2018), five participants (n=17) referred to the necessity of fulfilling tasks and duties associated with caring for a cancer patient 24 hours a day. Caregivers may feel excessive burden when taking home-based responsibility for the patient while also meeting their own obligations. The more social roles a caregiver performs, the greater the likelihood of reduced quality of life (Kim et al., 2006; Morris, Grant, Lynch, 2007). According to Printz (2011), caregivers’ quality of life worsens due to unmet personal needs, lack of help, and lack of social support. It was found that real or perceived insufficient social support for family caregivers correlates with high physical and mental exhaustion, and many caregivers report that their social support declines over time. Several caregivers in the Leonidou and Giannousi (2018) study referred specifically to the effort to obtain social support, which contributes to providing the best possible care. Support was most often sought from their own children, with other sources being friends, relatives and professionals who provide care to patients with cancer and their families.

Alongside social support, many caregivers in Leonidou and Giannousi (2018) discussed the need for more information about cancer and available services, and also emphasized the need for support groups for patients and caregivers.

Changes in the social life of home caregivers were also recorded. Respondents consistently spoke of increasing time demands for family, personal social life, and hobbies, which are shrinking. Other caregivers discussed reduced quality of social activities. “Being closer to the patient” resulted in limitations in the social area of life (Leonidou, Giannousi, 2018). Results of research by Mosher et al. (2013) pointed to the most frequent change caused by home caregiving as caregivers’ disconnection from most ordinary social and leisure activities. An Australian study (Fisher, Briggs, 2000) similarly found that more than half of caregivers (58%) reported a severe or even dramatic impact of caregiving on their lives and choices. Such care had a negative impact on vacation planning and taking holidays (45,4%), travel (30,2%), available time for hobbies (25,6%) and socializing (15,6%). These impacts led to social isolation and loneliness (32%), changes in family and other relationships (25%), feelings of grief and loss (24%), and limited time for personal relationships (11,1%). Ferrario et al. (2003) found that up to 60% of caregivers had to give up their hobbies and meetings with friends. The family must give up family activities, outings and vacations. Such a situation brings grieving and disappointment for loved ones, which can also affect the health of family members, who may become role-overloaded. In another study, nearly half the caregivers said they had no time for themselves (Schofield et al., 1997).

Caregivers of people with cancer have restricted social networks (Goldstein et al., 2004). This also follows from the fact that the loss or reduction of paid work contributes to narrowing the social network and, according to Grbich, Maddocks and Parker (2001), to social isolation. Employment offers many opportunities for social interaction and creates significant social networks (Otis-Green, Juarez, 2012). It is not unusual that progressive illnesses affect employment of the person with cancer, and they also affect their caregivers’ employment. As the disease worsens, the number of hours needed for caring for a loved one increases, which leads to reduced time in external employment (American Cancer Society, 2011). Many caregivers are unable to work, need to take unpaid leave, move to lower-paid positions, or work from home in order to meet demands placed on them (Grunfeld et al., 2004). One of the most common changes in caregivers’ lives in the Mosher et al. (2013) study was job loss (45%). Nearly one-fifth of caregivers reported losing most or all family savings (18%). A shift to less demanding work and earlier retirement were also noted (Leonidou, Giannousi, 2018). The financial burden of many families as a result of cancer in the family or bankruptcies is common. The situation of returning to work is not easy either; it can be as demanding as taking on the role of caring for the patient at the start of treatment and requires time to adapt (Otis-Green, Juarez, 2012).

At the same time, the burden associated with caregiving for family members suffering from a life-threatening illness increases continuously as the patient’s functional state declines (Williams, McCorkle, 2011).

BENEFITS

The literature also contains findings on benefits for caregivers providing home care to oncology patients. As Amirkhanyan and Wolf (2003) or Boerner, Schulz and Horowitz (2004) point out, caregiving can also be a enriching experience. Cohen, Colantonio and Vernich (2002) characterize home caregiving as a meaningful experience when such care is sufficiently supported. Home caregivers can succeed in meeting patients’ needs. Caregivers who feel well prepared for their role and have sufficient resources to meet patient needs report emotional satisfaction and positive well-being associated with helping loved ones during a difficult experience (Otis-Green, Juarez, 2012).

Successful care can result in more intensive relationships and strengthened social bonds (Otis-Green, Juarez, 2012). Findings of Leonidou and Giannousi (2018) confirm this and point to a stronger bond between home caregivers and loved ones with cancer; they became closer and more closely connected after diagnosis. Stetz and Brown (2004) argue in support of the notion that positive changes can appear in the family system through strengthened relationships during the care process.

Positive outcomes also include feelings of personal growth, self-confidence, acquired knowledge, and empathy (Amirkhanyan, Wolf, 2003). In a small qualitative study, Ruf et al. (2009) reported positive changes in caregivers’ attitudes toward life, personal strength, and relationships with others.

Implications for Social Work

When speaking of cancer, attention is mainly directed at patients’ needs, and the needs of home caregivers are often overlooked. However, knowledge about how to support home caregivers across the continuum of care for oncology patients is needed, because it can be useful for both caregivers and patients through higher quality care. It is important to meet home caregivers’ needs and help them manage burden so that they themselves can become support for the patient. Several authors propose possible ways to help home caregivers. Berry, Dalwadi and Jacobson (2017) propose a four-part framework for supporting home caregivers:

  1. assess caregivers’ needs using formal measures in the same way that the needs of oncology patients themselves are assessed;
  2. educate caregivers and prepare them for performing tasks in the care of a patient with cancer;
  3. strengthen caregivers’ position so that they become full members of the care team and all work toward shared goals;
  4. proactively help caregivers in fulfilling their duties so that they maintain a sense of control and self-efficacy.

Through the meta-analysis by Northouse et al. (2010), it was found that caregivers are typically offered three types of intervention: a) psychoeducational, b) skills training (coping, communication, and problem-solving), and c) therapeutic counseling.

The author sees the social worker’s tool, the so-called sociooncologist (known in foreign literature as a social worker practicing in oncology settings or an oncology social worker), working in socioncology (Žiaková, 2016), as social work in oncology practice as an appropriate area beside existing psycho-oncology that focuses solely on the social aspects of cancer. Fujinami et al. (2012), who focused on quality of life regarding family caregivers, recommended an interdisciplinary approach to meeting the needs of patients and their caregivers, noting that social workers are particularly suitable for providing this level of education and support.

At present, one cannot approach piecemeal analysis of disease aspects, but rather to overall understanding of the negative manifestations and needs of the person with cancer, their family, and caregivers. A social worker has experience with a systems perspective and sees the client as a whole within a wider social network. Therefore, Herman (2011) regards oncology social workers, with specific knowledge of family dynamics, coping strategies, and community and other resources (Cagle, Kovacs, 2009), as key members of the interdisciplinary care team, and their expertise is essential for addressing the multidimensional problems commonly associated with cancer.

According to the author, in sociooncology the social worker should, in work with home caregivers providing care for loved ones with oncology illness:

  • assess the care network of care providers;
  • if the social support network is insufficient, serve as a direct source of social support;
  • provide social work services through information and communication technologies available to caregivers 24 hours a day, where geographical barriers are absent. Under the influence of information-technological advances in communication, and with the help of digital technologies (e.g., the internet), social work services have officially appeared in the form of online support groups, online counseling, and therapeutic services. Professionals should be expected to push beyond the boundaries of traditional practice while constructively striving to create, implement, and evaluate new and still effective ways to help people in need;
  • carry out assessments of the oncology family, not only the patient but also home caregivers. Navrátil (2010, in: Balogová, 2016) points to the exceptional value of assessment, since the outcome influences both the social worker’s further steps and the fate of assessed and co-assessed individuals. Reflection on life situation is the first and necessary step in selecting goals and intervention methods that can contribute to change in a client’s life situation (Musil, Navrátil, 2000). “From a systemic view of the family, we can see that whatever happens in one subsystem affects the others. So it is not only the individual who should be assessed, but the whole system” (Manson, O’Byrne, 1984, in: Balogová, 2010, p. 163),
  • increase health literacy, which from the author’s holistic perspective should also imply knowledge about social determinants of health, social consequences of cancer, possibilities of social work in the social treatment of this disease, and services provided by social workers, thereby offering home caregivers information needed for caring for oncology patients.

Conclusion

A better understanding of the social factors associated with home caregiving for cancer patients should help to refine interventions and thus improve the situation and performance of these caregivers’ mission, and consequently improve care for the patient as well. Therefore, addressing the specific needs of home caregivers is ultimately also useful for patients.

Care providers play a decisive role in overall care for people with cancer; for some, it becomes equivalent to full-time work and brings with it enormous burden. Yet currently, there are few concrete ways to help caregivers in performing this important role.

In this context, the author emphasizes the need to include sociooncology both in the healthcare system and in social work practice as an essential part of treatment for the “oncology family,” following international examples (e.g., USA, Great Britain, ...).

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1 The author is aware of the significance of eliminating gender stereotypes and respects the importance of using gender-sensitive language. Speaking in general, for clarity the author uses masculine forms and the terms patient, caregiver, client, social worker, and sociooncologist, while mentally including both genders.