Prioritizing the efforts: lived experiences of family when taking care of people with cancer†
Article Category: Original Article
Publié en ligne: 21 sept. 2023
Pages: 315 - 322
Reçu: 28 oct. 2022
Accepté: 16 mars 2023
DOI: https://doi.org/10.2478/fon-2023-0034
Mots clés
© 2023 Titan Ligita et al., published by Sciendo
This work is licensed under the Creative Commons Attribution 4.0 International License.
Cancer is a chronic disease with increasing prevalence, including in Indonesia. It also ranks in the top three diseases with the highest mortality rates, after heart disease. Recent data show that there are more than 19 million cancer sufferers globally,1 and it is estimated that by 2040, the number of cancer sufferers will increase by 12.9 million people, where countries with a lower human development index (HDI) will be at risk of experiencing a greater increase in the number of cancer sufferers than countries with a higher HDI.1 Likewise, in Indonesia, cancer cases are increasing each year, and data for the five-year period 2013–2018 show an increase in the number of cancer sufferers of 1.8 per million.2
The role of health workers and families is very important in treating cancer. This role includes helping the family taking care of a person with cancer to meet their care needs both in the hospital and at home. It is very important that family caregivers can obtain information on how to treat the patient and what services are available and safe, and what they can do when the patient is in a critical phase. According to Lavallée et al.,3 there is a relationship between the availability of critical information and the support received. The participants reported dissatisfaction regarding the support and information they received because the received information was inconsistent, incorrect, and dubious.3 For this reason, it is necessary to identify whether the information received by the family is sufficient to guide the family in managing the care for the patient. In addition, it is necessary to identify what the family caregivers need in taking care of their family member with cancer, especially during this pandemic phase.
For people with advanced cancer, symptom management is an important concern, so sufferers need physical and practical support, especially when they are at home.4 Patients may feel frustrated if they do not realize that there will be side effects of treatment and do not know what to do when these side effects occur.4 For this reason, patients and their families need to know the side effects of treatment and how these can be managed. Early identification of side effects will enable patients and their families to be better prepared to deal with them. Preparing for this situation can be anticipated by the provision of self-management education programs for cancer sufferers.4
Families who care for people with cancer may face certain challenges. They may feel burdened if all the decisions related to cancer care assume that they are responsible for the welfare of the patient.5 Of note, the health workers’ role can lighten this burden or make it worse.5 Families may also find it difficult to care for patients with cancer because they need to balance their work with the workload of caring for the patient.4
Stressful events can prompt the families to seek information about cancer and its treatment.6 These events include changes in cancer symptoms, starting a new therapy, and waiting for the results of a new examination. Family caregivers also seek further information when they have conflicts with others, including the patient, and when they notice that the therapy is not effective or does not show good results.6
The experiences and needs of families in caring for people with cancer are often not adequately identified, and families may not accurately report the condition of the patient to health professionals. To increase the role of the family, we need to know the experience of the family in caring for people with cancer, together with their challenges and needs, and whether and how these are being addressed. There is limited information about the experience and perspectives of families in caring for people with cancer. In addition, there are many research studies on the experiences of cancer survivors compared with the experiences of their families in caring for them. Therefore, it is necessary to explore the experiences and needs of families in caring for people with cancer today. This will enable identification of the family needs when caring for people with cancer so that difficulties and challenges can be related to health workers who care for people with cancer. In addition, this information is necessary so that the family has adequate knowledge and skills in treating people with cancer.
The aim of this study was to explore the experience of families in caring for their relatives with cancer. There is one general question that will be answered through this research: “How do families care for people with cancer?”
We employed a phenomenological research design to guide the data collection process, which aimed to explore families’ experiences in taking care of their family members with cancer. The population in this study was families who take care of people with cancer in the city of Pontianak, West Kalimantan, Indonesia. In recruiting participants in this study, we used a purposive sampling method in which the participants were selected based on inclusion and exclusion criteria. The inclusion criteria were family members who cared for people with cancer aged 18 years and older. Meanwhile, the exclusion criterion was families who do not live with the patient.
Before the data were collected, this study was approved by the Ethics Committee of the Universitas Tanjungpura in West Kalimantan (Number 4185/ UN22.9/PG/2021). The participant recruitment followed an ethical procedure. All participants were recruited from a general hospital in Pontianak. Once we had the contact numbers of the participants from the hospital, we contacted the families and invited them to take part in the study. When they agreed to participate, the participant determined the time and the method of interview (via telephone or WhatsApp voice call). These methods of interview were chosen because of the current pandemic situation.
We conducted a total of 11 in-depth interviews from nine participants. Eight interviews were undertaken in the first stage of data collection. In the second stage of data collection, we performed validation of the data to increase study rigor by conducting three additional interviews, with two participants from the first stage and one new participant. We distributed a narrative writing including the concept map that visualizes the experiences of the family in taking care of their family member with cancer. This study used the “framework method” as an approach for analyzing the data. Seven stages of data analysis in the framework approach were used: transcription, familiarization, coding, identifying a thematic framework, indexing, charting and mapping, and interpretation.7
A total of nine family caregivers were involved in this study, and eleven interviews were undertaken. The family participants were taking care of their family members with breast cancer, colorectal cancer, and lymphoma. Details of the participants’ characteristics are displayed in Table 1. In this section, we report the results along with the participants’ verbal responses, and these responses are labeled P1, P2, P3, etc.
Participants’ characteristics.
| Family code | Age (years) | Relationship with the person with cancer | Cancer diagnosis | Duration of living with cancer | Duration of taking care | Duration of taking care per day | Number of interviews |
|---|---|---|---|---|---|---|---|
| P1 | 32 | Daughter | Ca Mammae | ≤1 year | ≤1 year | >6 h | Two |
| P2 | 31 | Daughter | Ca Mammae | 4 years | 4 years | >6 h | One |
| P3 | 38 | Sister | Ca Colon | ≤1 year | ≤1 year | >6 h | One |
| P4 | 49 | Husband | Ca Mammae | ≥5 years | ≥5 years | ≤1 h | One |
| P5 | 35 | Daughter | Ca Mammae | ≤1 year | ≤1 year | >6 h | One |
| P6 | 55 | Mother | Lymphoma | ≤5 years | ≥5 years | >6 h | One |
| P7 | 34 | Wife | Lymphoma | ≤1 year | ≤1 year | >6 h | Two |
| P8 | 35 | Wife | Lymphoma | ≤ year | ≤1 year | >6 h | One |
| P9 | 42 | Mother | Lymphoma | 2 years | 2 years | >6 h | One |
This study used R Qualitative Data Analysis (RQDA) software to manage and organize the collected data during the process of analysis. During this analytical process, the “framework method” and concept mapping were used to develop the core theme and the five sub-themes in this study. The core theme in this study is “Prioritizing the efforts: Being aware of the best we could do for our family.” This core theme is supported by five themes: “Decisions to make,” “Keeping up the good support,” “Acknowledging the others’ contributions,” “Assisting my family to alleviate the disease,” and “Adapting to the current situation.”
The experience faced by families began when they first heard that their family members, the cancer patients, were aware of a health condition requiring treatment, such as further examination and consultation with health workers (medical). It was at this stage that the family played a role in assisting decision-making both when the patient was diagnosed with cancer and when considering both medical and alternative treatment.
“We only go to the physician, no other therapies. We are worried about the side effects of using other therapies when mixing with medicine. We believe in using medical treatment.” (P2)
“We discuss it first with [other] families as this is the first disease in our family. We discuss where to go. Before taking chemotherapy, we ask those who have experienced chemotherapy. When we first heard about chemo, we were worried as people said that chemotherapy is like killing a person slowly. However, we had input from many people, and we were suggested to do chemotherapy.” (P9)
To ensure the correct diagnosis, the family accompanied the sick family member to a health facility for further examinations, such as conducting diagnostic tests. They also sought a second opinion to confirm the established diagnosis and shared their experience with others and listened to the experiences of others.
“Well, at the beginning the other patients asked about what cancer my family has, then we shared our experiences. We talked about how we then can have chemotherapy. We shared [information] about the disease.” (P8)
“We were offered two options. The doctor said we can use the health insurance in public hospital or in a private one. Then we discussed it with the family and finally made a decision to treat my sister at the private hospital in the city.” (P7)
After the patient was diagnosed with cancer, the family played a role in considering the use of conventional and alternative medical therapies. Some families refused the use of alternative therapies and continued to follow medical recommendations, while others tried alternative therapy and used medical therapy if the alternative remedies did not show effective results.
“After the chemotherapy, we never tried the alternative therapy because we are worried when the herbal mixes with the medication.” (P3)
“Because my daughter is busy at the college, she sometimes did not [show] adherence with the [alternative] therapy. The alternative therapy was not regularly used. Then, when she graduated from the college, she had a job, and it made her busier and had lack of rest and [her condition] was getting worse.” (P6)
“Once, I was offered to have the alternative treatment for my daughter and it’s very expensive and we cannot afford it. So, I think this [chemo] is the final way and we try it and believe it.” (P9)
The support provided by the family was ongoing and the best form of support for the patient. In addition, the family learned about the treatment of people with cancer. However, to continue to provide the best support, the caring family also needed to have their needs met. These needs included the need for health and support from others.
“We surely are tired, for example to queue for the consultation and the therapy at the hospital for hours. Thus, we must keep our condition fit because we take care of the sick person. We need to take care of ourself and to be strong.” (P1)
“I was suggested to have a screening for cancer, but I always postpone doing it. I may become stressed. If I get stressed, no one will take care of my mother. I am aware of [genetics being the risk factor of cancer] therefore, I modify my eating habit.” (P5)
With the experience of caring for the patients, families also obtained lessons in undertaking the treatment, learning from others about how to deal with family members who have cancer. Furthermore, they learned about the causes of cancer from the family members’ disease history, which might aid in cancer prevention. To provide the best support, the family attempted to obtain information about taking care of a person with cancer, such as information about treatment, food, the process of the treatment processes in a new place, and biomedical conditions. For example, the family tried to find information about the hospital for the treatment.
“I searched [the] information from the internet. Then [I asked] my friends, too. I also had the information from the doctor.” (P7)
However, the participants said that sometimes, the health workers did not provide enough detail or were unclear in conveying information about treatment.
“My mother is worried about the prescribed medication, so I tried to explain about it. Then, searching from Google because the healthcare professional did not explain [about the medicine] in details.” (P3)
Families also stated that they needed information regarding the treatment of psychological problems and how they managed patients with cancer.
“I need support because I sometimes confuse what to do when my mother’s condition dropped.” (P3)
Family members recognized the importance of contributions from other people, including health workers as well as relatives and friends, especially those who had the same situation as themselves. Family members also interacted with others to gain information about cancer suffered by family members. Families and patients were included in social media groups, and they claimed to benefit from being involved in these groups. They also sought advice on cancer and provided advice to other families with similar conditions.
“We chatted with the other [patients’ families]. We asked for the information, and we also share our information and experiences with them as our families with cancer are also the survivors of cancer.” (P1)
“They tell their experiences about how they initially feel after chemotherapy. This information really helps me [to take care of my family]. My mother firstly got stress, but then thank God, it does not happen anymore.” (P5)
Medical consultations were undertaken with healthcare professionals to seek advice. With various treatment options available to them, the families advised the patients to focus on their treatment by doing their best and completely surrendering to God to make it easier for them to undergo the treatment. Contributions from healthcare professionals were recognized by families when they gained support and accepted recommendations from healthcare professionals. This was performed by following the recommended procedure and treatment after receiving an explanation from the healthcare professionals. They really appreciated the readiness of healthcare professionals to always be willing to help and monitor the patient’s condition at home.
“I take care of my wife. We thank to God. I told her we must keep doing our effort and we leave it to God. Life, death, and everything are determined by God.” (P4)
“Thank God, we have the support from our friends too. The nurse from the hospital is also helpful to inform us about the food to take.” (P2)
The family provided support and services to the person with cancer, such as psychosocial support by helping the person with cancer make decisions about the treatment and biomedical examinations. However, they avoided making decisions about treatment without prior consultation or without obtaining the right information. In terms of finances, the family also helped in the arrangement of health insurance to guarantee the financing of therapy.
The family also helped to take care of the person with cancer by working with them in identifying and monitoring food intake, health status, and treatment while at home, as well as side effects resulting from the treatment and discomfort during therapy. In handling the care provided, the family addressed the basic needs of the patient, assisting in obtaining the equipment needed for homecare, such as wound care, and helping the patient with wound care if necessary and to manage symptoms due to chemotherapy, such as pain, nausea, and vomiting. When symptoms appeared, the family was responsive in helping the patient by finding or accompanying them to the right health facility for examination/testing or treatment. Families with previous expertise or knowledge also helped the patients manage these symptoms. Sometimes, if they were not aware of these symptoms, the family reported the symptoms that occurred at home to the doctor.
“Thank to God. I am also a healthcare professional and there are lessons from the school [I have learned] and when I met people at work [I also learned from these experiences]. Thank God, I can apply it with my family [with cancer]. I am also not easy to get panic. Thank God.” (P5)
The family also provided support regarding activities that can be done and reminding the patient of physical exercises that may aid in comfort or movement of the limbs.
“I reduce her activity. She may do a light domestic work such as sweeping the room. Sometimes, she feels pain on her arm, in the area of post operation, after sweeping. Thus, I limit her activity. When she feels numb on her hands, I suggest her to hold things with hands [to do exercise on hands], like to exercise people with stroke.” (P5)
“The family always gives updated information and support. Our family is supportive and provides efforts to get better.” (P8)
Further, the family provided spiritual support, such as suggesting a balance between undergoing treatment and praying, and reminding the family and the patient to be sincere, patient, encouraging, and strong because the illness was God’s will.
“We must have a balance. Besides doing our efforts, we must take a pray, too.” (P1)
“This treatment needs self-control, patience and persistence.” (P6)
Factors that supported the families in carrying out cancer treatment were believing that the disease was God’s will, accurate diagnoses, health insurance or being assisted by others with payment for treatment and transportation between homes and health facilities, and families who believed in their ability to provide care because of their faith. The family attempted various ways to do the best for their relative living with cancer.
“We thank to God; I never feel difficult in taking care of her [his wife].” (P4)
“The first [contributing] factor is to realize that these efforts are the best we could do. We also tried many things [attempts] but no good progress. Perhaps, this is the best way and we ourselves realize it. No matter the way we do, we will keep going.” (P6)
The care provided by the family also changed according to the current condition, namely, the COVID-19 pandemic. Most family members stated that the pandemic had not affected activities related to treatment. However, several points needed to be accepted, for example, complying with health protocols and carrying out additional pathways in treatment. They also limited visitors to their houses. In addition, the family stated that they were worried about COVID if therapy was carried out at a COVID referral hospital.
“Once we have finished the chemotherapy from the hospital, we directly went home, then we took off the clothes and took a shower straight ahead. We did not stay longer at the hospital. We always used mask, brought hand sanitizer and a spare mask.” (P3)
“In this pandemic season, I really limit her [the mother with cancer] to contact with the other. Her friends would visit her but I told her if not too important, we don’t have to. When the guest comes to our house, we always use mask.” (P4)
One of the important roles of families in caring for people with cancer is to help the patients make decisions about treatment. In this study, families also contributed to making decisions, especially once the patient was diagnosed with cancer. Likewise, in a previous study of Lamore et al.,8 the partner influences both directly and indirectly the decision of a person with breast cancer to have a mastectomy by considering the impact of the decision made. In this case, health workers also play a role in involving partners in making decisions related to cancer treatment.8 In addition, families can help patients determine the choice of treatment, such as the hospital that will be used as a place for cancer treatment by paying attention to the quality of service, experience from other patients, and the reputation of the hospital.9 Having a helpful family that can be either a good listener or decision-maker is one of the patient’s sources of gratitude.10
In addition to the challenges of dealing with side effects and complications during cancer treatment, the challenge of receiving a cancer diagnosis for the first time is a concern for cancer sufferers. Forms of cancer diagnosis include recognizing symptoms related to the disease, receiving test or diagnostic results, and hearing a cancer diagnosis for the first time.4 Communication or delivery of a cancer diagnosis is a concern for patients because they are often addressed with inappropriate language when they receive the diagnosis for the first time, thus making them feel more stressed.4 This can also be felt by the family who care for the patient. Family in this current study sought information on how to take care of people with cancer, for example, information on food intake, activities, and medication. Family also need information about treatments, medications, and procedures, as well as the duration of therapy, its effectiveness, the healing rate, and controlling cancer symptoms.11
Sharing information about treatment with others who are in a similar situation is very helpful and important. Families in this current study found it is useful to share experiences with other people who had similar conditions. Families may also form online groups/communities to share this information.11 Technology makes it easier to share information with others. However, it is necessary to pay attention to the accuracy of the information received and to evaluate online sources of information to determine their credibility.11
Family in this study identified that they needed to have support in psychological aspects when taking care of people with cancer. Family may experience distress because they feel helpless when they have to help much to their family with cancer.12 Stressful conditions can prompt families to seek information because they are aware of their lack of knowledge and experience and feel uncertain about what is happening to the patient.6 People with cancer may not feel free to discuss their disease, including difficulties, and thus, they may feel lonely and isolated.13 Side effects that appear in patients, cancer therapies, and cancer diagnoses can trigger distress in the family such that the family feels the need to find information to help them overcome problems related to emotions.6 Concern about the ineffectiveness of cancer therapy can trigger anxiety and stress in the family when the patient receives a new and modified therapy.6
Family need support not only from their surroundings such as other families and friends but also from the healthcare professionals. Family members appreciate healthcare professionals asking individually about family needs because this makes the family feel that they are also cared for.14 Communication between healthcare professionals and families is very important. This should be in the form of honest information about the patient’s prognosis, and healthcare workers should help communicate this to patients as a form of readiness in the future.14 To help the family prepare to provide care for a person with cancer, nurses may contribute in ensuring that the family is able to take care of a person, providing information and support.15 However, to avoid psychological distress experienced by the family caregiver, healthcare professionals including nurses need to prevent bias when supporting to make a decision.16 For families, responsibilities that can be shared and are safe to do can help lighten the burden of caring for people with cancer. Conversely, failure of communication between families and health workers can make arranging care for people with cancer a bad experience for families.5
This current study identified that family also contribute to financial assistance. Stress can arise because of financial problems, and families often talk about financial issues when caring for people with cancer. Participants in another study11 stated that they felt unprepared and not equipped with anything to solve problems and that they hoped to be able to overcome these problems and other issues.11 A strategy for people with cancer after therapy is to adapt to daily activities and reduce stress because stress can change the activities of people with cancer.17 The role of the family here is to help people with cancer in completing work or activities that cannot be done optimally.17
During the pandemic, families and their relatives with cancer acknowledged the influences of the COVID-19 pandemic, including additional processes before undergoing treatment at the hospital. Another study11 revealed the challenges of accessing information during the pandemic. Before and after the pandemic, the use of online information sources was relevant because online sources are more accessible and up-to-date.11 Families also faced obstacles in finding information related to cancer, including language or terms that are jargon and may not be understood by the family. In this current study, another challenge is that the information conveyed by healthcare professionals was not clear such that the family had difficulties in understanding it.
The family may be overwhelmed with the information11,13 and not know where to start looking for related articles.11 Families sometimes feel pressured because they are expected by their relatives with cancer to know everything, including answering all their questions.11 Therefore, it is necessary to wisely select which information should be read based on their needs.
Cooperation between families and healthcare professionals is important in the care of a person with cancer. Nurses actively provide information to family and friends of patients about experiences in treating cancer, as well as factors and methods that can prevent cancer to increase family awareness in cancer prevention.18 According to the family, healthcare professionals can have a supportive influence on families in facing challenges while caring for people with cancer but can also hinder families in facing challenges in caring for people with cancer.5 This requires communication and building mutual trust between patients and nurses, as well as the family. Furthermore, when providing the information and administering the treatment, healthcare professionals need to use simple language and evaluate or ask for feedback from the family about the provided information for that related treatment.
A unique contribution to the new knowledge is our finding that the family members and people living with cancer moderately adapted to the era of COVID-19 pandemic. However, this study was limited by not involving patients to emphasize the roles of their family in the care and how the care was effective in managing symptoms at home. Further research is needed in examining the effectiveness of teaching family about specific skills to monitor and manage symptoms at home. For instance, as nausea was frequently mentioned by the participants, monitoring nausea and providing non-pharmacological therapy warrant exploration.
This study aimed to explore families’ experiences in taking care of and fulfilling the needs of a person with cancer. The results revealed five themes that support one core theme to reflect this phenomenon being studied. This study implies that it is necessary to build cooperation among healthcare professionals, patients, and their families to identify what families need to take care of their family member with cancer and how they can resolve the problems. When management of the symptoms experienced by the family member with cancer is an issue, healthcare professionals may facilitate the family and inform them about the best methods as the family’s priority is to take care of their family member with cancer.