Psychological challenges of female caregivers in providing home-based palliative care for patients with advanced cancer: A descriptive-exploratory study

Abstract

BACKGROUND:

Family caregivers play a key role in providing care for patients with advanced cancer. Most of this care burden is shouldered by female caregivers in the family. Compared to their male counterparts, female caregivers face numerous psychological challenges in the process of caregiving. The aim of this study was to identify the psychological challenges of female caregivers in providing care to patients with advanced cancer.

MATERIALS AND METHODS:

This descriptive-exploratory study began with purposive sampling method in 2020-2021 in Isfahan and continued until data saturation was reached. Twenty semi-structured interviews were conducted with female caregivers of patients with advanced cancer and 18 more interviews with providers of health services and supportive-palliative care. The interviews were recorded, transcribed, and analyzed using conventional qualitative content analysis.

DISCUSSION:

The results were classified into three categories. The first category was psychological reactions that included the four subcategories of depression and anxiety, aggression, mental exhaustion, and death anxiety; the second category was psychological needs which included the three subcategories of need for professional counseling, need for emotional support, and need to prepare for mourning; and the third category was mental occupations which consisted of the two subcategories of feeling of regret and remorse.

CONCLUSION:

Assessment of psychological challenges is a prerequisite for planning psychological interventions, providing high-quality care, and improving quality of life and satisfaction of caregivers. The findings of this study will contribute to the development of guidelines and empowerment programs for female caregivers providing palliative care.

Introduction

Family caregivers play a fundamentally active role in providing care and support for cancer patients to meet their physical, emotional, and psychological needs and their complicated medical care.[1,2] However, these caregivers are also affected by cancer and related treatments and often experience unmet special care–support needs.[3,4]

Focusing on the provision of services to patients, families, and caregivers, the supportive-palliative care system strives to reduce the negative effects of the disease on the lives of patients with cancer and their families.[5,6] These services are not limited to the physical aspects of the disease and include psychological and spiritual aspects of the disease as well.[7,8] Home-based palliative care services refer to those types of palliative care provided by a trained multidisciplinary team consisting of physicians, nurses, community health workers, volunteers, etc., to cancer patients and their families in the home of the patients. The main advantage of this method is that the patients feel more comfortable compared to being in health centers, their privacy is better protected, and family members are also actively involved in patient care.[7] While providing patient-centered and family-centered care and supporting caregivers during illness, death, and even after death, these services help caregivers improve their quality of life, reduce their care-related burden, and have shared decisions.[8,9,10]

Caregivers of patients with advanced cancer face numerous challenges which affect their health and the quality of patient care as well.[2] One of the most important challenges of caregivers is psychological challenges,[11,12] to the extent that many unmet needs of caregivers are rooted in these challenges.[3] As per studies, gender of the caregiver is one of the most important factors affecting their psychological challenges with regard to palliative care. Female gender increases the likelihood of developing psychological symptoms such as depression and anxiety.[13,14,15] Negative psychological challenges such as depression, anxiety, unmet needs, care burden, and grief in female caregivers have been reported to be higher than their male counterparts.[11,14]

Shani et al. (2021)[16] argues that female caregivers face feelings of isolation, lack of emotional support, and helplessness. Accordingly, their quality of life is usually lower than the male caregivers.[17,18] They also experience higher levels of aggression and frustration and lower levels of hopefulness than their male counterparts.[19,20]

In Eastern societies, the burden of care is disproportionately placed on women in various roles such as mother, wife, daughter, sister, etc., and men are not expected to have any responsibility in this regard.[21] As women are expected to provide care without having a choice, they are subject to a great deal of psychological stress and psychological challenges compared to their male counterparts.[22] Given the cultural structure of Iranian society and the existence of strong family bonds to support patients, women mainly take the responsibility of care voluntarily and bear the burden of it.[23] They prioritize patient care and self-care is their next priority[24]; they refuse to express their needs and challenges in this regard; their routine life is subject to many changes leading to numerous destructive impacts on their emotional health.[25,26] This study specifically addressed the psychological challenges of female caregivers with regard to their role in providing care for the patients with advanced cancer.

Materials and Methods

Study design and setting

This descriptive-exploratory study was conducted in 2020-2021. This type of study is a prevalent and well-known approach to qualitative studies and is used to discover the full nature of a particular phenomenon when there is little information about it.[27,28] This method was used in this study to achieve a comprehensive understanding of the challenges of women in providing home-based palliative care in patients with cancer.

Sampling and participants

Using purposive sampling method, the participants of the study were selected from among the female caregivers (spouses, mothers, daughters, and sisters) of the patients with advanced cancer who were in need of supportive-palliative care at home. Moreover, the providers of supportive and palliative care services including nurses, physicians, psychologists, social workers, and spiritual caregivers were selected from one of the specialized and referral hospitals which provide services to cancer patients in the country. Finally, 38 participants, including 20 female caregivers and 18 providers of supportive and palliative care services (4 doctors, 6 nurses, 6 psychologists, and 2 social workers), were invited to participate in the study. Table 1 shows demographic characteristics of all participants.

Table 1.

Demographic characteristics of the participants

Participants	Demographic characteristics	Percent	Job status	Percent
Caregivers	Sex (Female)	20 (52.63%)	Job status
	Age (Range)	30-55 (y)	Housewife	15 (75%)
	Education		Employed	5 (25%)
	Associate degree	8 (40%)
	Diploma	9 (45%)	Caregiver role
	BSc	2 (10%)	Daughter	8 (40%)
	MSc	1 (5%)	Wife	12 (60%)
	Sex
Treatment	Female	13 (34.21%)	Work experience
Team	Male	5 (13.15%)	(Range)	8-18 years
	Education		Job title
	PhD	4 (22.2%)	Doctor	4 (22.2%)
	BSc	6 (33.3%)	Nurse	6 (33.3%)
	MSc	8 (44.4%)	Psychologist	6 (33.3%)
			Social worker	2 (11.1%)

Inclusion criteria for female caregivers were willingness to participate in the study, over 18-year-olds, minimum patient care of 33 hours per week, no major psychiatric disorder as per the DSM-5 criterion, and providing care for over 18-year-old patients with advanced cancer. Inclusion criteria for healthcare providers were willingness to participate in the study and have at least 6 months of work experience in the area of supportive-palliative care.

Data collection

Using semi-structured interviews, the data were collected from August 2020 to March 2021. The interviews were conducted by the first author at a time and place chosen by the participants. Each interview lasted for about 45 minutes and was recorded with the permission of the participants. Sampling was continued until data saturation was reached and no new data were obtained.[29] Before the interviews, oral and written consent was obtained from the participants and they were informed about the objectives of the research and their right to withdraw from the study and any stage. To establish a warm atmosphere, the interview started with general questions such as “what is your role/women’s role in patient care?” Then, considering the unique answers of the participants and based on the objectives of the study, each interview was continued with other questions such as “what are the psychological needs of women in providing care?” or “what psychological problems do women encounter while providing care for patients?” Data saturation was reached in this study after conducting 38 interviews.

Qualitative data analysis

A conventional content analysis approach, proposed by Graneheim and Lundman, was used in this study for data analysis.[30]

After each interview, the audio file was transcribed by the first author and key phrases about the psychological needs and challenges of female caregivers were extracted. The important sentences of each meaning unit gave shape to condensed meaning units. Then, the condensed meaning units were coded through labels. Next, the initial classification of the codes was performed and the codes with similar concepts were placed in a subcategory. After that, similar subcategories were grouped and the main categories were obtained. During the data analysis process, the primary codes, subcategories, and main categories were discussed by the members of the research team and a consensus was reached. Finally, 3 main categories and 9 subcategories were obtained.

Rigor

Lincoln and Guba criteria were used to ensure the rigor of the data. The credibility of the data was ensured through member checking and sampling with maximum variation. For member checking, several texts of the interviews and the related codes were given to the participants they were asked to confirm the similarity between their experiences and the obtained codes. For the confirmation of the coding and the main categories, peer checking was employed and the research team reviewed the interviews and similarity between the extracted codes and categories. To ensure confirmability, the codes and categories of the interview texts were reviewed by three independent researchers who were familiar with qualitative research. In addition, to improve the dependability of the data, three external observers reviewed the data and, then, the codes and categories were modified based on their feedbacks. Finally, transferability was achieved through a detailed description of the characteristics of the participants and maximum variation sampling.

Results

Three categories of psychological needs and challenges of female caregivers emerged which included psychological reactions, psychological needs, and mental occupations. These categories and subcategories are discussed as follows and presented in Table 2.

Table 2.

Main categories and subcategories from the viewpoint of the participants

Categories	Subcategories
Psychological reactions	Depression and anxiety
	Aggression
	Mental exhaustion
	Death anxiety
Psychological needs	Need for professional counseling
	Need for emotional support
	Need to prepare for mourning
Mental occupations	Feeling of regret
	Remorse

Category 1: Psychological reactions

Female caregivers face a number of psychological problems to which they have different psychological reactions. This category included four subcategories of depression and anxiety, aggression, mental exhaustion, and death anxiety.

Depression and anxiety

As per the participants, the presence of a cancer patient at home changes the family atmosphere to a permanently sad one. Over time, these caregivers also experience this inner sadness, depression, despair, and constant anxiety in their life. As such, many of them develop symptoms of depression and anxiety that they refuse to express or treat because of being involved in patient care. This itself can have a negative impact on the process of care. In this regard, one of the caregivers said:

“Ever since I found out my mom had cancer, I got depressed; I sit in a corner and stare at a point. I can’t speak correctly at all. I formerly was an ongoing, expressive person; but now I no longer express myself; I know that I’m depressed now and can’t give her hope anymore.” (Caregiver 15)

Aggression

The participants clarified that because of psychological and care-related pressures, their behavior became increasingly aggressive. They usually behaved aggressively toward their children and others, although they regretted after behaving such. They expressed their need for managing and controlling their anger in behaving toward others so that they can take care of their patient more calmly. One of the participants said:

“Because of having many responsibilities and bearing so much pressure, these female caregivers usually become very sensitive and aggressive; so they need to pass anger management courses so that they can behave more calmly. Doing so, they will calm down and feel better.” (Social Worker 1)

Mental exhaustion

Severe mental exhaustion of female caregivers, which damages their psyche more than their body, is one of the severe reactions to the problems in the process of care.

“These women are really low-spirited. Putting aside their physical weariness, they are really suffering from severe mental exhaustion which remains with them even during the asleep and rest. This mental exhaustion gradually wears them out. So, something has to be done for them.” (Psychologist 4)

Death anxiety

Anxiety about the patient’s death is one of the serious challenges that female caregivers face constantly to the extent that they do not dare to leave the patient alone and are concerned about the patient’s death and the future of their families. One of these caregivers expressed herself as follows:

“I’m always overthinking that what will happen to us if my husband dies; I’m constantly ruminating over it. Sometimes, I say that now he is alive; don’t think about it; God is great. But again my mind is preoccupied that if, God forbid, he dies, what I will do with these children!” (Caregiver 9)

Category 2: Psychological needs

Owing to the burden of providing care for cancer patients, these women have various psychological needs. These needs include the need to be understood, the emotional support of others, paying attention to the emotional self, the need to see a psychologist and psychiatrist, and the readiness for the patient’s probable death. However, given the deteriorating condition of the patients at home, they prioritize the patient over their own needs, which in turn cause several psychological challenges to them. The main category of psychological needs consisted of 3 subcategories of the need for professional counseling, the need for emotional support, and the need to prepare for mourning.

Need for professional counseling

Female caregivers said that they suffer from severe mental problems and, thus, need the help and support of others. However, as they are too busy, they do not pay attention to it as a priority. Some women even resist visiting a counselor and do not consider it necessary when their loved one does not have a good condition. However, some women stated that they had recovered over time as their mental condition worsened and they had visited a psychologist. Doing so, they were able to improve their mental state and the condition of their patient with regard to the disease. Similarly, the treatment team also believed that counseling is a necessity for these caregivers.

“I was so unwell that I finally went to a psychologist. I was so anxious that I was just crying. The psychologist gave me some pills and I felt a bit better. Now I can control myself better; if I didn’t take these pills and didn’t talk to him, I would be so depressed. I’m okay just because of consuming the pills. I’m really tired.” (Caregiver 20)

Need for emotional support

Need for emotional support was one of the basic needs emphasized by the female caregivers. They believed that they should be strong emotional supporters for their patients during the treatment process so that they can fight against cancer. However, in this journey, these women also need the emotional support, empathy, and sympathy of others without being judged by them. One of the women clarified this point as follows:

“We also need help; how can a lonely woman with a child deal with everything? I don’t mean the personal works of the patient, as I have to do them myself. You know, we need to be seen and be appreciated; even orally; if others understand us and what we are doing, we will be encouraged to continue.” (Caregiver 2)

Need to prepare for mourning

From the viewpoint of the care team, preparing these female caregivers for the death process as per the patient’s condition is one of the essential and basic needs which can prevent psychological problems and long-term depression after the patient’s death. Despite their inner desire and emphasis on the patient’s recovery, the caregivers also indirectly referred to this need.

“They need pre-mourning counseling which should be done when we see that the patient’s condition is deteriorating and death is imminent. We try to provide families with some trainings and counseling before it happens that your patient’s condition is worsening and you would better be prepared to lose him/her … we do it.” (Doctor 1)

Category 3: Mental occupations

As per the female caregivers and the treatment team, the caregivers are preoccupied with different thoughts which are rooted in their caring practices. The caregivers are regretful about what they could do in the past for the patient who is dying now and remorseful for upsetting the patient. They also believed that the judgments and words of others could play a substantial role in creating these feelings. This category consisted of the two subcategories of regret and remorse.

Feeling of regret

Regrets about lost times, not appreciating life and its conditions in the past, and no feeling of affection for the patient in the past are some of the feelings expressed by the female caregivers. The treatment team also believed that these women experience a feeling of regret about their past actions and behaviors caused by the high burden of care and the difficult condition of the patients. One of the caregivers expressed this point as follows:

“I always spent my time with my friends and when I was at home, I was working on my laptop or checking my cell phone. I almost didn’t do anything at home. Now I constantly regret why I didn’t spend more time with my dad. I wish I had spent more time with him.” (Caregiver 12)

Remorse

As per the female caregivers and the treatment team, these caregivers sometimes experience a feeling of remorse or guilty conscience in some situations such as spending time for themselves, not taking immediate attention to the patient’s expectations when he or she did not need immediate care, and getting tired of doing things.

“Some of these caregivers suffer from a guilty conscience; ‘why did I shout at the patient when he asked me do something for him and said that’s enough?!’ Well, these things happen because they are bearing a lot of pressure; but then they have a guilty conscience about it that why did say such thing and begin to ruminate over it.” (Psychologist 3)

Discussion

This study specifically explored the challenges of female caregivers in providing home-based palliative care for patients with advanced cancer patients. Based on the data analysis, these challenges were identified in three categories of psychological reactions, psychological needs, and mental occupations.

One of these categories was psychological reactions. In the process of care, these caregivers show a variety of psychological reactions such as anxiety and depression, aggression, mental exhaustion, and death anxiety.

This finding is in line with the results of Dixe et al. (2019)[31] and Shani et al. (2021),[16] who identified depression and anxiety as the most prevalent psychological symptoms in female caregivers. Another study reported an increased burden of care, decreased health, depression, and anxiety in female caregivers providing for cancer patients.[19] Goldzweig et al. (2019)[25] referred to the high prevalence of negative emotions such as loss of happiness, loneliness, despair, and the feeling of being imprisoned in their homes.

Aggression was another psychological reaction found in the study. Duggleby et al. (2014)[19] also indicated that female caregivers experience higher levels of anger, rage, and frustration than male ones.

Mental exhaustion of the female caregivers was another subcategory of the study, which was included in the category of psychological reactions. Similar results refer to chronic mental exhaustion in caregivers, which may predispose them to depression.[16] Oechsle et al. (2019)[13] also reported high levels of mental exhaustion in female caregivers. In this regard, effective and practical interventions for reducing stress and mental exhaustion, which can lower the quality of life of these caregivers, are essential.

Based on the findings of the study, death anxiety was one of the serious challenges of the female caregivers, which was mentioned almost by all caregivers. In this regard, Li et al. (2013)[14] confirmed that female caregivers are concerned about the death of their patients and, thus, supportive and adaptation methods for the perception of reality should be used for them. This result is in line with the results of Duggleby et al. (2014),[19] Palacio et al. (2018),[13] and Ginter and Radina (2019),[1] indicating that death anxiety is one of the serious challenges on female caregivers. Accordingly, the use of psychological support strategies has a significant impact on the reduction of death anxiety in female caregivers and improving their quality of life.

Another category of the study was psychological needs which were classified into three subcategories of need for professional counseling, need for emotional support, and need to prepare for mourning. Need for the consultation of nurses and psychologists of the palliative care was mentioned in the studies of McDonald et al. (2012)[32] and Dionne-Odom et al. (2021).[15] They believe that this counseling can effectively reduce depression and care burden of the caregivers and improve their quality of life.

The need for emotional support was another finding of the research which was prioritized by almost all female caregivers. Owing to their existential nature, women play an emotionally supportive role for their patients; however, because of the illness of their loved ones, this need is ignored in these women and despite public supposition, female caregivers receive less emotional support than male ones.[14] Ginter and Radina (2019)[1] and Dixe et al. (2019)[31] revealed in their study that women emphasized the need for receiving emotional support from others and being understood. They believed that even a text message or phone call and praying for them were important factors which could strengthen their morale.

The need to prepare for mourning was another need of these women. Breen et al. (2018)[33] confirmed that caregivers are familiar with and aware of the issue of death in these patients but it does not mean that they are prepared for it and, thus, they need emotional support to adapt to it. The unpreparedness of caregivers for loss and grief can predispose them to the risk of chronic depression.

As one of the subcategories of mental occupations, feeling of regret was another challenge faced by these women. The findings of Duggleby et al.[19] (2014) are in line with our results. In their study, women experienced feelings of regret and guilt because they felt they had not done enough for their patients and could have done more. Devoting themselves to care and spending a lot of time for the patient, they felt better and avoided negative thoughts in this process.[1]

Remorse or guilty conscience was another finding of this study. As per the results of a research conducted on female caregivers in Canada, female caregivers feel guilty when they have not been able to meet the care needs of their patients.[19]

The results of the present study can be used in planning for the improvement of the quality of life, empowerment of women to have a better management of issues and problems, and provision of patient care to women with similar conditions.

The limitation of this study due to the qualitative method is the reduction of the generalizability of the study. For future studies, it is suggested to investigate appropriate solutions to reduce psychological challenges in women caregivers.

Conclusion

This study specifically addressed the psychological challenges of female caregivers who provide care for the patients with advanced cancer. The findings were indicative of an urgent need for psychological support as the core of home-based palliative care for these women. Assessment of psychological challenges, with regard to interaction with the specialists of the palliative care teem, is a prerequisite for planning psychological interventions, providing high-quality care and improving quality of life and satisfaction of caregivers. Moreover, the findings of this study will contribute to the development of guidelines and empowerment programs for female caregivers providing palliative care, where these women feel being supported in their role.

Ethical considerations

The present study is part of a nursing PhD dissertation approved by the ethics committee of the Medical Research of the Isfahan University (cod IR.MUI.RESEARCH.REC.1399.234). Before each interview, the participants were orally briefed on the objectives of the study and gave their informed written and verbal consent for participation. They were also told that they could freely withdraw from the study at any stage they desired.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.