Difficulties experienced by individuals who care for palliative patients – a qualitative study informed by Jean Watson’s theory of human caring

INTRODUCTION

Watson’s theory of human caring was initially presented in 1979 and asserts that the experiences that allow the patient and the caregiver to get to know one another in a variety of ways form the foundation of care. Care is also a holistic approach that encompasses the aspects of the mind, body, and spirit [1–3]. At the core of Watson’s theory, there are ten primary factors that determine the caring process [4]. Each of the ten caring factors can be placed in either the physical dimension or the expressive dimension of care [2]. The physical dimension focuses on individuals’ physiological needs. The attractive factors in the physical dimension include the systematic use of scientific problem-solving methods, educational interventions, creating a supportive and safe environment, and addressing and meeting physical needs. The attractive factors in the expressive dimension include the growth and development of a care-based value system, instilling hope by being sensitive and accepting one’s own and others’ emotions, and developing a relationship with the patient based on assistance and trust [5]. According to Watson, each caring factor is centered around the care interaction between the nurse and the patient and is based on human qualities such as kindness, love, and concern for others [1]. Therefore, if care is obstructed or cannot be provided due to internal or external factors, difficulties may arise. If these difficulties are not adequately addressed, the context of care may be affected, and caregivers may not be able to provide the desired care, leading to potential harmful internal consequences and problems that can be associated with such difficulties [6].
Caregivers’ difficulties with the caregiving process have a significant impact on how both they and the patients they care for are affected in a parallel manner. Jean Watson’s theory of human caring supports this phenomenological qualitative research because it explains the relationship between caregivers’ ability to provide care and the difficulties they face in doing so [1]. Based on Jean Watson’s theory of human caring, identifying the difficulties that caregivers may encounter in providing care will pave the way for approaches that can lead to the resolution of these issues. Additionally, overcoming the difficulties experienced by caregivers will positively impact their overall health and well-being. In this instance, it is anticipated that patients receiving palliative care may benefit from these increased well-being states as well. It is anticipated that this study will shed light on the difficulties faced by caregivers of palliative care patients, making their experiences more visible. This visibility has the potential to prevent the escalation of these difficulties and increase awareness in comprehensive approaches in all healthcare services, especially nursing, and contribute to the literature [7, 8].
Given all of this, the purpose of this phenomenological qualitative study was to identify the difficulties experienced by those who provide care for palliative patients. This study sought answers to the questions “What are the difficulties experienced by individuals who care for palliative patients throughout the caregiving process?”, and “How are individuals who care for palliative patients affected throughout the caregiving process?”

MATERIAL AND METHODS

In this study, transcendental phenomenology, which is one of the models of qualitative research methods, was used [7, 8]. Data were collected using one-on-one, in-depth interviews with the individuals who provided care to palliative patients, as is the protocol for this research method [9].

Setting and participants

The participants of this study consisted of six individuals who provided care to patients registered in the Palliative Treatment Unit of a state hospital in the Central Anatolia Region of Turkey. In participant selection, purposeful sampling was utilized from the types of purposeful sampling techniques. The aim of purposeful sampling is to include intentionally chosen individuals who have experienced the phenomenon of interest, thus providing rich sources of information for the research. The purpose of purposeful sampling is not about population generalizability; instead, it deeply understands participants’ experiences related to the phenomenon [10, 11]. The inclusion criteria for the study were as follows: (1) individuals aged 18 and over and (2) caring for a patient who had needed palliative care for at least six months (Table 1).

Data collection

In this research, interview was employed as the data collection tool. The Socio-Demographic Characteristics and Semi-Structured Interview Form about the Difficulties Experienced in the Caregiving Process were employed for the interview. The questions included in the interview were formulated with support from the literature [12–16]. Based on the expert opinions and pilot interview, necessary adjustments were made to the clarity, comprehensibility, accessibility, deficiencies, and details of the questions to ensure their alignment with the purpose. Examples of how the questions were finalized can be seen in the first version and the final version (Appendix 1) of all interview questions.

Data analysis and design

To evaluate the prepared socio-demographic and semi-structured interview form, a pilot interview was conducted by the researcher (A.T.) with three participants who provided care to patients registered in the Palliative Care Unit and were hospitalized there. During the pilot interview, the researcher could not obtain sufficient data from the participants regarding the sixth and seventh questions in the semi-structured interview form. Therefore, it was decided to cancel these questions (Appendix 1), and data collection commenced. The individuals who participated in the pilot interview were not included in the study.
To ensure clarity and confirm that the interview questions would capture data related to experienced difficulties, discussions with field experts were held to review the interview questions again [17]. The interview was conducted in a quiet, comfortable, non-threatening environment within the hospital to allow for the maximum disclosure of information [9]. The data were read by the researcher (A.T.) and filled out based on the responses provided by the patients. Simultaneously, the semi-structured interviews were audio-recorded, and the interviews lasted an average of 35–50 minutes. The interviews were concluded when data saturation was achieved.
Content analysis was used in this study [9]. The main procedural steps of the analysis are provided in Appendix 2.

Ethical considerations

In order to conduct the research, approval was obtained from the University’s Social and Human Sciences Scientific Research Publication Ethics Committee (Approval No: 11-2023/178). The participants were asked to sign a voluntary permission form that had been authorized by the ethics committee. Participant confidentiality was ensured by using a unique pseudonym for each participant throughout data collection, analysis, and reporting of findings. Furthermore, access to information and data was restricted to the researcher only throughout the research, and the data were secured using encryption on a protected device. Thus, the disclosure of participants’ responses was limited, and the risk of potential harm to participants was minimized. All data related to the study will be stored for three years and then deleted.

Limitations

In this study, the care recipient patient group was limited to only palliative care patients. Another limitation was that the study consisted of transcendental phenomenological research. The aim of the study was to describe the difficulties experienced by individuals who care for palliative patients, which is why this qualitative research approach was chosen.

RESULTS

The findings are based on interviews with individual participants and cover circumstances or experiences during the caring process and reflect a compilation of data gathered through audio recordings and textual explanations. Personalized narratives give a framework for each participant’s experience with the problems they encountered. The results consisted of one theme, five categories, and thirty- one codes (Table 2). Codes were generated based on participants’ responses to open-ended questions under themes and categories, and direct quotations from the participants are provided below.

Findings related to the psychological difficulties category

The participants described the psychological difficulties they experienced during the caregiving process with ten different emotions (i.e., sadness, helplessness, longing, fear of death/loss, feeling depressed/exhausted, melancholy, fear of not being able to look, distress, hopelessness, introversion). All participants expressed that they were experiencing ‘sadness and helplessness’ as psychological difficulties. Some of the responses given by individuals providing care about the psychological difficulties they experienced are as follows:

• When I leave this place, a sense of fear of death engulfs me. ... When he’s hungry, or when I can’t manage, I often think about my helplessness. I feel really sad when I can’t manage. The fear that I won’t be able to take care of him starts to overwhelm me... More than anything else, I miss sitting down with my spouse and having a cup of coffee together. Does a person miss things? They do. ... I wish my spouse would wake up so I could take him home. ... I feel like I’m melancholy. I don’t even want to daydream anymore. Because I know it won’t happen (crying). Sometimes, I feel like I’m overwhelmed by and done (Ece);
• I felt emotionally shattered after my father. I closed myself off. … I’m in a bad mood. I feel distressed and experience depression quite often (Oya).

Findings related to the physical difficulties category

The participants stated that they experienced difficulties such as pain in various body regions, weakness, rib injury, foot swelling, and herniated discs during the caregiving process:

• There are moments when I feel inadequate. Sometimes I lie down at night to sleep, yet I wake up fatigued... When I try to lift something, I struggle. Both my foot and ankle bones have undergone surgery. When I stand for an extended period of time, they swell and hurt. Of course, raising and lowering the patient causes pain in my feet, wrists, and waist (Ece);
• … I cracked the cartilage tissue of two of my ribs on my right side while trying to lift my aunt without lowering these things (pointing to the bed railings) (Gül);
• ... I cared for him alone for two and a half years. I didn’t have a herniated disc back then. It emerged afterwards. I have six platina in my back. It had such an impact on me that I was no longer able to care for my father (Oya);
• The participants expressed experiencing sleep disturbances during the caregiving process. One more thing errr... When a person is exhausted all day, it is normal for them to desire to sleep at night. But how can I sleep with my heart racing? ... One yearns for sleep. Even if I did sleep, I wouldn’t be at peace… (Ela);
• The participants described the physical difficulties they experienced in the caregiving process related to their lifestyles as neglecting their own check-ups, giving up on self-care, impairment of quality of life, constantly needing someone, and the patient was male. They stated I had a gallstone that had to be removed, but how could I go to surgery when he was still here...? (Ela);
• ... When I care for my patient, I can’t think about my own needs. I give up everything (Gül);
• ... Even the quality of my life decreased when my father was ill (crying). ... While I help with caring, I struggle a lot and do not handle hard work. My mum and sister are constantly there for me. I’m always in need of assistance (Oya);
• At the same time, the participants mentioned that they experienced challenges related to the gender of the patient during the caregiving process. Because he’s a man and we’re two women, we struggle a little when lifting him (Eda).

Findings related to the economic difficulties category

In this regard, Ece, who had been providing care for her spouse alone for two and a half years, expressed that she could not meet the need for paid caregivers:

• For example, I was able to employ a caregiver for roughly six months. My savings had run out... Hiring one is expensive (Ece);
• Also, other participants (except Gül) said that they experienced many financial difficulties regarding household expenses, especially caregiving costs, during the periods when they were providing home care;
• ... But, as I already stated, I wouldn’t be able to handle it if I were at home. Everything, including medical items, is fairly pricey. ... Instead of wasting money on diapers, we may use our money to purchase wet wipes, food, and drinks for the patient (Oya);
• In fact, it’s better here than at home. We might not be able to buy everything if we were at home. Everything is right here. Diapers are already infinite and many... We would have a lot of problems if we were at home. In any case, I’m not a working person (Nur).

Findings related to the social difficulties category

During the caregiving process, participants reported being withdrawn from relationships, having difficulties with shopping and home duties, and being unable to leave the patient:

• ... So, I mean, I only go out about every two to three months. If I don’t need to, I won’t even go out for an hour (Ece);
• I can’t leave my father’s side. … I can’t go to the market, I can’t go shopping, and I never have any social life. ... My mother needs to go back and forth to the village all the time. I run the village while my mother is here. I go back and forth here every day (Oya);
• The change in participants’ family ties is indicated by the code of decreasing time for family/neglecting of family. My social life has been restricted, so it’s completely over. I miss my children a lot. I can’t always see my grandchildren (Ece);
• One of the participants, regarding the social difficulties experienced, explained that she was unable to continue her education during the caregiving process. I was going to go to university, but I couldn’t go because of my father’s state (Oya).

Findings related to the spatial difficulties category

During the interviews, one participant concerning spatial difficulties mentioned that she was uneasy with the others in the room. Other participants made no mention of any experienced difficulties in this respect:

• Our roommates have been here for almost three months. The woman is not at all clean. And they are always yelling. They never think that we are uncomfortable. Thank God we have this screen between us (Gül);
• I don’t have any difficulties because of the hospital environment (Ela);
• The same participant explained spatially that she was unable to take a bath in the hospital related to her own care. I can never take a bath here. Because I don’t think I will be clean (Gül).

DISCUSSION

When the findings obtained in the study are evaluated, it is notable that the provision of care is primarily undertaken by females. Many studies conducted with the relatives of patients requiring care have revealed that carers are predominantly female [14, 18–22]. In Turkish society, females are also more typically assigned to caregiving. When males adopt caregiving duties that have traditionally been considered female roles, it might lead to increasing difficulties owing to masculine stereotypes. Therefore, it is thought that males have difficulty meeting their needs.
In this study, the psychological difficulties experienced by the participants have been described as primarily sadness and helplessness, as well as longing, fear of death/loss, feeling depressed/exhausted, melancholy, fear of not being able to care, distress, hopelessness, and introversion. When looking at studies involving individuals providing care for a prolonged period, it has been explained that participants similarly experience negative emotions such as sadness, helplessness [14, 23], hopelessness, insolubility, anger [14], fear of loss, anxiety due to uncertainty, depression/burnout, inability to accept the situation, longing, and deterioration of mental well-being [22]. The establishment of a dependent and close bond between the caregiver and the patient makes the caregiver feel heavily accountable. The perceived heavy responsibility turns the caregiver into the sole individual responsible for the patient’s life. This situation leads the caregiver to experience intense emotions about the patient’s life and negatively affects the caregiver’s psychology.
When examining the physical difficulties experienced by individuals providing care during the caregiving process, it was found that they all expressed pain in various body regions as physical complaints. When examining the physical difficulties experienced by individuals providing care during the caregiving process, it was found that they all expressed experiencing pain in various body regions. At this point, it was determined that participants experienced lower back, neck, arm, shoulder, muscle, foot, and leg pains, and these health problems were approved and expressed by the participants to occur during the caregiving process. Additionally, participants also reported difficulties related to weakness, fatigue, rib injury, swelling in the feet, and herniated discs. It was found in related research that carers deal with physical difficulties and pains [14, 24–26]. It was also determined in previous research that caregivers frequently experience fatigue [26, 27]. Another difficulty experienced by caregivers is sleep disturbance. The participants stated that their patients also needed them at night. According to research, carers have trouble sleeping [14, 28], and some even report having restless nights and being forced to use sedatives to help them fall asleep [26, 29, 30]. Furthermore, caregivers expressed experiencing difficulties related to their lifestyles during the caregiving process, such as neglecting their own check-ups, giving up on self-care, impairment of quality of life, constantly needing someone else’s assistance, and the patient’s gender. In the study by Orak and Sezgin, it was found that the gender of the patient affected the physical health problems, psychological distress, and social and economic issues that arise during the caregiving process. Studies in the literature emphasize the significance of providing social support in enhancing the physical and psychological well-being of caregivers, as well as improving their quality of life. Therefore, any form of social support provided to caregivers plays a crucial role in improving their quality of life related to health. In this sense, the professional healthcare team should plan initiatives aimed at enhancing social support to improve the caregivers’ quality of life [21].
One of the difficulties experienced by caregiving individuals also manifests in the economic domain. Regarding this, almost all participants stated that during the period of providing care at home, there were significant caregiving expenses in terms of the economy. Another issue mentioned is the inability to meet the need for paid caregivers. It is believed that paid caregiving can create an economic burden and pose difficulties within the family. Similar findings indicating that caregivers experience economic difficulties during the caregiving process can be found in the literature [14, 22, 31]. These findings underscore the necessity of providing professional support to address the problems faced by caregivers, as well as the importance of institutional and home care services.
Another challenge in the caregiving process is social difficulties. In the conducted interviews, many participants indicated that due to caregiving, they withdrew themselves from social relationships, struggled with shopping and household chores, and were unable to leave the patient. In the study conducted by Kutlu et al., the importance of socialization was emphasized, and the problems experienced by caregivers were clearly demonstrated [32]. Numerous other studies have also confirmed those conclusions [14, 22, 31, 33]. Another of the challenges carers encounter is changes in family relationships. In a study conducted by Turgut and Soylu in 2020, a caregiver family member expressed this situation as follows: Our only life became the hospital. During this process, I started seeing my children’s faces less. As a family, we were deprived of doing things together [22]. Another research finding related to the social difficulties experienced is the inability to continue education during the caregiving process. Results from Turgut and Soylu also lend credence to this research conclusion. Caregivers may think that their privacy, leisure activities, and freedom have been lost or restricted and that they have had to make sacrifices. As a result, the likelihood of feeling abandoned in their caregiving role, experiencing a sense of isolation, and decreasing the perception of social support increases [22].
Finally, in the study’s findings, it was observed that spatial difficulties in the caring process were also expressed. The experienced spatial difficulties were sharing the room with different patients and not being able to take a bath in the hospital due to hygiene. In the study by Çakır and Yaman, participants who expressed experiencing spatial difficulties described these difficulties as their homes being small and when a room was given to the elderly, there would not be enough room left for other family members [14].

CONCLUSIONS

The results of the present study indicated that the caregivers experienced psychological, physical, economic, social, and spatial difficulties during the caregiving process. In addition to these difficulties, it has been observed that somatic complaints, sleep disturbance, and problems related to lifestyle and family relationships occur. Studies in the literature support the findings that caregivers experience psychological, physical, economic, social, and spatial difficulties during the caregiving process. When we return to Watson’s theory of human care as two dimensions of care, these results support the theory. Thus, it explains the relationship between the care provided by individuals who give care for a long time and the experienced difficulties related to the barriers to this care. When these two elements are brought together, they serve to meet the needs of the caregiver and the patients under their care. In this context, foremost among the professional caregivers, nurses have also fulfilled their primary goal. In order to reduce the difficulties experienced by caregivers, they should be supported psychologically, physically, economically, socially and spatially. In addition, since the difficulties experienced by caregivers may change over time, it is recommended that they be evaluated at regular intervals by nurses and necessary training, consultancy and support programs be prepared and implemented to reduce the difficulties they encounter. Furthermore, in future research, it is recommended to conduct comprehensive studies investigating the difficulties experienced by caregivers, the influencing factors, and coping methods using different models, varying data collection tools, and analysis approaches.

Acknowledgments

We would like to sincerely thank all of the caregivers who provided care to patients registered in the Palliative Treatment Unit who took the time last summer to respond to our survey. We know it was an extremely busy and challenging progress. We truly appreciate all of you taking the time to respond to the open-ended questions about the difficulties you experienced. Your honest, open, and extensive responses helped us understand more about the difficulties experienced. We are deeply grateful.
The authors declare no conflict of interest.

REFERENCES