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Subjective Experiences of Coping Among Caregivers in Palliative Care

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Sarah A. Uren, MA
Tanya M. Graham, MA

Abstract

Several research studies have sought to quantify the effects of formal caregiving on the caregivers; however, limited research has described the experiences of caregiving using a qualitative research design. In this study, we used an interpretative, phenomenological method to explore how coping operates as a central resource for trained caregivers and professional nurses in a palliative care setting. Eleven participants from a community-based, palliative care organisation in South Africa provided narrative accounts of coping within the caregiving process. Our findings identified seven themes related to the different dimensions of coping and the implications of these responses on individual caregivers. In this article, we discuss the cumulative effect of caregiver exposure to stressors, consider future directions to enhance caregiving, and conclude that effective caregiver coping plays a substantial role in caregiver and patient wellbeing and should therefore be a central component of enhancing palliative care interventions.

Citation: Uren, S., Graham, T., (April 15, 2013) "Subjective Experiences of Coping Among Caregivers in Palliative Care" OJIN: The Online Journal of Issues in Nursing Vol. 18 No. 2.

DOI: 10.3912/OJIN.Vol18No02PPT02

Keywords: Caregiving, coping, caregiver wellbeing, coping strategies, community-based palliative care, formal caregivers, hospice, qualitative research, South Africa.

The relationship between caregivers' coping abilities and their emotional experiences is complex. The relationship between caregivers' coping abilities and their emotional experiences is complex. Several factors affect formal caregivers’ ability to cope. These factors, which may have persistent effects on the caregivers’ experience of caregiving, are often dependent on external circumstances, the individual patient, as well as the caregiving strategies employed (Chadda, Singh, & Ganguly, 2007).

‘Coping’ refers to the employment of certain behaviours and internal processes in response to difficult situations (Scherck, 1999). In this article, the term caregivers is utilised to include both professional nurses and trained carers. The utilisation of particular coping mechanisms differs depending on the individual and the context in which the coping is sought (Raina, O'Donnell, Schwellnus, Rosenbaum, King, Brehaut et al., 2004).

Emotion-focused coping is concerned with the emotional strain surrounding a situation, while problem-focused coping considers a structured approach towards strain... Coping strategies are often viewed as either emotion-focused or problem-focused (Parks & Novielli, 2000). Emotion-focused coping is concerned with the emotional strain surrounding a situation, while problem-focused coping considers a structured approach towards strain, as if seeking a solution to the presenting problems (Scherck, 1999). The literature also distinguishes between internal and external coping strategies, thus providing a multifaceted understanding of potential coping structures (Pratt, Schmall, Wright, & Cleland, 1985). Although an individual’s coping style is considered a stable variable, the strategies employed differ among people and over time (Scherck, 1999).

The coping strategies adopted by caregivers regulate their emotional experiences, and are therefore inherently related to maintaining their wellbeing as caregivers (Tugade, Fredrickson, & Barrett, 2004). Coping strategies are not simply reactions; rather they are actively employed strategies that create a resource that influences caregiver wellbeing (Tugade et al., 2004). Coping strategies are vital in assisting caregivers to manage burdens as they form a preventive measure against affective disorders commonly associated with caregiving (Parks & Novielli, 2000).

Positive and negative emotions and the relationship between them play an important role within caregivers’ emotional experiences and their coping ability. Caregiving experiences are multifaceted, presenting a combination of positive and negative elements (Pierce, Steiner, Govoni, Thompson, & Friedeman, 2007). Emotional management among caregivers in palliative care institutions is often one of the most vital aspects necessary to maintain work requirements and satisfaction (Karabanow, 1999). The nature of emotional experiences and the quality of the caregiving relationship are often intertwined (Cousineau, McDowell, Hotz, & Herbert, 2003). Positive and negative emotions and the relationship between them play an important role within caregivers’ emotional experiences and their coping ability.

Ineffective coping strategies may increase the negative emotional impact on the individual, while effective coping can be emotionally protective. Coping strategies are protective when they sustain positive emotions, thus serving as a resource against negative influences; they can in turn replenish coping mechanisms (Pierce, et al., 2007). Understanding the subjective importance caregivers attribute to both positive and negative experiences provides insight into caregiving and the influences on caregivers' experiences from a phenomenological perspective. An understanding of caregivers’ positive experiences can foster these experiences and strengthen interventions that assist and prevent negative experiences, thus increasing the caregiver’s coping ability. The present study sought to identify both the emotional components that foster growth and those that deplete the individual caregiver, with the goal of promoting the patient's wellbeing and the wellbeing of the caregivers (Liebhaber, 2008).

In this article, we will describe our study using an interpretative, phenomenological method to explore how coping operated as a central resource for trained caregivers and professional nurses in a palliative care setting in South Africa (S. Africa). We will present the seven themes (responses) related to the different dimensions of coping that were identified by the caregivers and the implications of these responses on individual caregivers. We will also discuss the cumulative effect of caregiver exposure to stressors; consider future directions to enhance caregiving; and conclude that effective caregiver coping plays a substantial role in caregiver and patient wellbeing and should therefore be a central component of enhancing palliative care interventions.

Method

In this section, we will discuss the research approach, setting, participants, and procedures involved in this study. We will also describe our data analysis process.

Research Approach

This research explored the emotional experiences of caregivers using an interpretative, phenomenological paradigm, and considering the lived experiences of the caregivers and the manner in which they make sense of these experiences (Eatough & Smith, 2008). Because experience is subjective, diversity and variability in the perceived realities can be presented using this approach. This qualitative design utilized the active involvement of participants, thus furthering the interpretations of caregiving and an understanding of the emotional impact within the caregiving context. This design created an opportunity for more dimensions and complexities to arise from the data than would be addressed by a quantitative study, and allowed for a greater understanding of caregiving (Funk et al., 2010). The approach allowed the individual caregivers to present their experiences and sense of reality, as well as the meaning the experiences had for them. This process enabled caregivers to verbalise and begin to process and make sense of how they engage and understand their role and how they cope with their emotional experiences.

Setting

The setting of this study was a formal, community-based, palliative care organisation. Community-based, palliative care institutions operate within a community, often as a resource to the community. They rely on voluntary donations and funding received from donor organisations. These types of organisations often operate with substantially fewer resources than governmental or private health care institutions, particularly in low-income countries (Uys, 2003). Palliative care facilities are different from hospitals due to the context and the intimacy they provide. They frequently utilise caregivers from within the same community and are usually based in rural or impoverished areas in low-income communities (Street & Blackford, 2001). The organisation we studied was based in an informal settlement in Gauteng, South Africa, a community which had high levels of unemployment and poverty and limited access to health care and housing. The facility predominantly provided care for approximately 15 to 18 terminally ill inpatients through respite care, pain control, and end-of-life care.

Participants

The 11 participants included both trained carers and professional nurses between the ages of 20 and 65 years of age. Three of the participants were male and eight were female; all individuals lived in the same community in which they worked. All male participants were trained carers (and social workers); three of the eight female caregivers were professional nurses; the remaining female participants were trained caregivers. Participants had occupied positions as formal caregivers for at least two years at the organisation. They had worked for different periods of time as caregivers, ranging from 2 to 13 years. Nine of the eleven participants had also held other positions within the healthcare field prior to their current involvement in community-based, palliative care work. All participants had received formal training in community-based palliative care through the organisation itself, as well as through either secondary- or tertiary-level education.  Reporting any additional information describing the participants would prevent us from maintaining participants’ anonymity and confidentiality.

Procedures

The data was obtained through semi-structured interviews that permitted the interviewer to probe the participant’s response (Terre Blanche & Kelly, 1999), and allowed participants to openly express their experiences (Patton, 2002). Utilising semi-structured interviews facilitated our phenomenological approach (Bailey, 2007) as the individual’s lived experience was explored. This approach also enabled the establishment of rapport by allowing the interview to be fluid, and to explore further what each individual participant brought to the interview (Smith & Osborn, 2003). This is particularly important when trying to explore emotional experiences, as these experiences may be of a very personal nature.

The first part of the interview focused upon the perceived role of the formal caregiver. The second part of the interview related to participants’ experiences and their perceptions of the positive and negative elements of the emotional impact they experienced as caregivers. In particular, we sought to identify the elements that motivated and enhanced the caregiving process and to compare them with those care aspects that depleted the caregiving process. We also sought to better understand the different means of coping utilised by each individual. The questions within the interview schedule were open-ended, allowing for the exploration of each participant’s experiences as a formal caregiver. They were based upon the content found in our literature review and directed toward the research questions guiding the study (see Table for a summary of these questions). Questions were developed and reviewed by the authors, and were independently reviewed for content validity by two academic staff at our university.

Table. Semi-Structured Interview Guide

  • How do you understand your role as a formal caregiver?
  • How do you distinguish your role from an informal familial caregiver?
  • What, in your opinion, are the key characteristics of your role?
  • What are the most stressful and least stressful aspects of your day as a caregiver?
  • Do you cope efficiently with those aspects just mentioned?
  • If yes, what do you do to ensure this effective coping?
  • And if no, what makes it difficult for you to cope efficiently?
  • How do you understand your strategies for coping with the different situations that manifest in a palliative care institution? (Caring for the patient, the family and the burden of it as a job?)
  • What is your greatest motivating factor in being a caregiver?
  • What is your most satisfying factor in being a caregiver, you can explain by giving an experience that defines the factor?
  • What is the most challenging aspect of being a caregiver?
  • What role, if any, do you think stress and burden have in the challenges of being a caregiver?
  • (If they think these play a role): How do you think these factors impact on, or influence, the coping strategies you adopt?
  • Secondly, do you think these factors impact on, or influence whether you are able to cope/not cope?
  • What do you think leads to factors such as, burnout and compassion fatigue, in caregivers? (Explain what is meant by compassion fatigue if necessary: having a reaction to the indirect exposure of emotionally taxing experiences; although you or your family may not be going through the illness, you may be inherently involved in these processes with patients).
  • What experiences have defined you as a formal caregiver? (depending on whether the answer provided focused on a discouraging or encouraging experience, the alternative one of the two questions below will then be put forward)
  • Can you describe an experience that was discouraging?
  • Can you describe an experience that was encouraging?

Ethical approval to conduct the study was granted from the University of the Witwatersrand. The director of the organisation invited the caregivers to volunteer to be interviewed within the palliative care organisation. This person discussed the study with the staff during their usual meeting, during which time the researcher was available at the institution to explain more fully what participation would include. Potential participants were also given a letter of invitation, reiterating the voluntary nature of the study, informing them about the focus of the research and the specific procedures, and explaining their ethical rights, should they chose to participate. Ethical rights related to the voluntary nature of the study, their right to withdrawal at any point from the study, the researchers’ commitment to maintaining confidentiality and anonymity, and their right to learn about the findings and the recommendations of the study were reviewed.

Interviews were conducted at the organisation, as this provided a both convenient and comfortable location for the participants. The interviews lasted 30 to 60 minutes and were audio-recorded and transcribed to ensure accuracy. Participants were all provided with details of psychological support that they would be able to access following the study, either telephonically or face-to-face. In addition, the researcher followed up with the participants by providing them with feedback and reminding them of the psychological resources available to them.

Data Analysis

Data were analysed using a thematic content analysis (TCA) approach. TCA operates within the interpretative framework, allowing for the in-depth exploration into the subjective experience of a phenomenon (Eatough & Smith, 2008; Whitely, 2002). Although TCA follows certain steps that create a structure from which to analyse the data, the analysis is not a simplistic, linear process. Rather the analysis involves constant reflection.

The initial steps of the analysis involved repeated engagement with the data, including verbatim transcription of audio-recordings, followed by reading and re-reading transcripts, in order to create a holistic understanding of the data. Next, initial codes that synthesised units of meaning in the data were developed, after which these codes were organised into broader themes. Subsequently, the themes were refined and labels that were able to capture the quintessence of the theme were developed. This process allowed for the collation and narration of themes to create a holistic, logical illustration of caregiver coping within a particular context (Braun & Clarke, 2006; Terre Blanche & Kelly, 1999). During this process, transcripts were reviewed by both authors. The data coding and analysis was conducted by the first author, checked by the second author, and then refined accordingly. Findings were discussed with participants in a feedback session.

Findings

The findings included seven themes that provide insight into how participants perceived the role of coping and the different support mechanisms available to them. The themes demonstrate how participants were able or unable to manage their workload and daily challenges. These themes include: finding a support person; finding the right support person; surviving the high workload; seeking alternative means of support; juggling home and work difficulties; potentially failing to cope; and disillusionment versus acceptance.

Finding a Support Person

Working as a caregiver in palliative care can be difficult and exhausting at times. Support is often a fundamental component in managing the difficulties encountered in such settings. Participants discussed their need to have someone to confide in as a vital resource for carrying out their daily activities.

I can go to one of the sisters and talk to her about it, and if ever I can’t be alright... I go to someone else, the matron or the directors, then I will finally be alright. (Participant 8)

Participant 5 explained that:

If you are stressed, you must talk about it... So if you feel that you are stressed, I think you must find somebody to talk to and you must look for help because you will end up... not doing your work, and you’ll end up hurting other people...

Significant emphasis was placed on caregivers seeking the support themselves. Participants felt that confiding in someone had positive outcomes and that it allowed them to “finally be alright.” Participants considered seeking someone to confide in as an important aspect of their job; without a confidant, caregivers are denied the opportunity to alleviate stress. Significant emphasis was placed on caregivers seeking the support themselves. Comments, such as “you must find somebody,” or “you must look for help,indicated that support was not perceived as readily available but rather something that had to be sought, thus allocating further responsibility to the caregiver to find the needed support. Irrespective of this responsibility, however, social support played an intricate role in the caregiver’s ability to provide care to patients.

Finding the Right Support Person

Although being able to confide in another was beneficial, several participants felt that doing so was a very complex and potentially detrimental process. Participants feared that their emotional experiences would become public knowledge, or would have repercussions on their position at the institution.

Sometimes you need somebody to talk, to... you know, just to talk to, but it’s not safe because everybody will know what you’ve been going through, everybody around you. (Participant 3)
Here you can’t because if I talk to you as a colleague will say eh [sic], I am having this, you are going to take this thing [what they have spoken about] to…the seniors [the managers and head of the organisation]. They will make you sit [leave the participant with such emotions] and then you’ll struggle with… the stress the whole day, not knowing where to … take it to (Participant 7)

I cannot talk to my colleagues cause... we are in a very same situation, so how is he [or she] going to help me. Maybe somewhere, somehow meeting a different person… maybe sometimes it does help. (Participant 2)

Participants found a need to confide in someone, but recognised that it might not be safe to do so. Participants found a need to confide in someone, but recognised that it might not be safe to do so. The idea of confiding in someone was linked to feelings of shame, exacerbated by potential embarrassment or punishment if colleagues would “take this thing to…the seniors.” Such statements suggest a fear of being placed in the patient role or being denoted as sick. By not approaching others for help they felt capable, thus illustrating the stigma associated with the sick role which caregivers themselves went to lengths to avoid.

Others felt that their colleagues were unable to help them as they were going through the same difficult times. This indicated their concerns about placing an additional burden on others.

If you do not have someone to talk to, you find yourself in a lonely place... but then I think time goes on, maybe if … you’ll just find a person who will be there for us, talk to us like you are doing now, asking me about the challenges and the stressful parts.... (Participant 2)
If there is no support inside, sometimes it’s difficult, so support is very, very important and as a person you have to create that support... You have to create the support around you, to co-operate with people to help them with their trouble... (Participant 10)

Sometimes I just think I can cope, I can cope with stress. The thing is that when I’m stressed, I share it somebody else. I…won’t just keep it in. And no, especially [not] here at work, at home I like to share it with somebody. (Participant 11)

This isolation may be indicative of the challenge of finding a confidant.

The participants felt there was benefit in “meeting a different person, who doesn't know,” who would “talk to us like you are doing now.” Beyond the neutrality of an uninvolved individual, Participant 2 referred to the need for an individual to “be there for us,” reiterating the importance of a devoted source of support they deemed trustworthy. This notion expressed the caregivers’ need for support and care, whilst maintaining their professional identity and upholding the interpersonal boundaries between them and the person providing such support.

Surviving the High Workload

A high workload often has ripple effects on caregivers’ wellbeing, acting as a primary stressor that may be aggravated further by limited resources. Participants described their high workload and the means by which they survived this workload.

I am working at the male ward alone and will have eh, eight patients and then it’s not easy to work with the patients, when you are alone... And to find that, that you have too much work and then you can’t just complete them [the tasks at work] within that time. (Participant 8)
The most stressful part of my day is when we help many, many patients here, it becomes so stressful. And you find out, now you don’t know what to do, or where you can run to, especially when we have patients, [in particular] cancer patients because they are in pain, so some of them you cannot control them [their pain]…those things, they give me [a lot of] stress. But as a person, I told myself that I am going to work, so I will just maintain it until the end of the day. (Participant 2)
Like sometimes, myself, I feel burnout because I do so many things at the same time. Somebody will call me to ... , for a meeting, somebody will call me for this, and somebody will call me for that, oh five people; at the end, [I] say, ‘ooh burnout’; and I need to run away from this place. (Participant 5)
Ultimately, you are going to burst – either you are going to lose control and shout at the patients you know; hmmm… because I think we, we react differently … when we have stress. (Participant 3)

Participants described the high workload as their most stressful daily challenge. Participants described the high workload as their most stressful daily challenge. This often resulted in the caregiver losing a sense of control and certainty. One participant said, “You don’t know what to do or where you can run to ….” Caregivers reached a point where it seemed impossible to continue, as illustrated by their “need to run away from this place” or the feeling of “bursting.” Participant 3 described the pressure on caregivers as feeling as though “you are going to lose control and shout at the patients.” The severity of these stressors is seen as their ‘caring’ is ‘reversed’ into shouting at the patients. These caregivers find it difficult to maintain their emotional stability in such situations.

This significant finding supports existing evidence that a high workload often places the individual in a vulnerable position as they experience the additive effect of increased stress (Kim, Baker, Spillers, & Wellisch, 2006). This additive effect may have significant negative effects on an individual caregiver’s health (Steiner et al., 2008). A high workload that incites high stress (Hawkins, Howard, & Oyebode, 2007) is often associated with perceptions of inadequacy related to the difficulties in trying to manage during these periods (Keidel, 2002).

Seeking Alternative Means of Support

Seeking alternative support beyond the organisation results in the use of both effective and ineffective coping strategies. Some of the alternative means of support described by the participants included the use of alcohol, drawing on family support or religious beliefs, and the use of music as a means of distraction, relaxation, or a mechanism with which to process emotions.

Sometimes I say “let it go,” but then sometimes it really comes, and then I’ll end up drinking a lot, to be honest, I'll end up drinking a lot, but it's not helping, it's not helping, really, but then sometimes I just take my money and buy drinks and drink a lot. (Participant 2)
My family always counsels me ... I am telling him, hey, this and this happened, this and this, and even my children and then [name] says ah this world, these things, these things are happening all over, there is nowhere you can find that this is not there … just go as long as they don’t chase you away, just take it (Participant 7)

Although participants described several positive coping strategies, Participant 2 discussed alcohol use, yet stated that “it’s not helping.” Reliance on alcohol often operates as a temporary coping mechanism, ultimately making the caregiver more vulnerable to the next stressor. Other participants utilised their family as a means to attain relief. However, given the contextual circumstances, families often focused on the importance of having a job, rather than the caregiver’s wellbeing. Thus, Participant 7 was told “as long as they don't chase you away, just take it.” This, however, created a situation in which participants were both unacknowledged and continued to suffer the burden of caregiving, while having the additional responsibility, or burden, to provide for their families.

These situations highlight the caregivers’ burden of simultaneously occupying both the role of a patient and that of a caregiver, a situation that necessitates a considerable degree of self-care on the part of the caregiver (Steiner et al., 2008).

If it is a patient, I just talk with somebody, like just to keep in my heart, and uh um … when I am off going home, even if that thing is in my my, my mind or in my heart, I listen to music and I just keep the music in my mind. I don’t think anything, I don't want to see anything, and I don’t want to talk with anyone, I just want to listen to the music and that’s it. (Participant 10)
... the way I cope is…I do, do my caregiver work, I give care to people, to patients, eh maybe during the night I sit, eh, play some music, or I just think, really think, recap of what I have done for the day. (Participant 1)

Participant 10 used music as a distraction; the statement, “just keep the music in my mind,” seemed to indicate its ability to fill their mind and remove any opportunities to ruminate over stressors or difficulties. Participant 10’s comment, “just want to listen to the music and that’s it,” illustrated an attempt at disengagement from the stressors of caregiving. Music could also operate as a means to symbolically work through difficult emotions that the caregiver may have difficulty sharing. In contrast, Participant 1 seemed to regard music as a means of relaxation and reflection.

Spirituality and religion also operated as significant means of support to the caregivers. Participants gained strength from their relationship with God; they placed trust in their spiritual beliefs when dealing with difficult situations, as illustrated in the excerpts below.

You'll meet the situation, like you have to go back and see and … play that whole thing in your mind, you know, … it's not effective at all, but the only hope I have is from Jesus. ... but now [with] myself the only hope is from my Lord and Saviour – because I've been disappointed so many times, even by my family, that I have ... I have no hope from anyone – I don't trust nobody except for Him .… (Participant 3)
I understand that what I say, like I’m talking to you now – that’s the way I should communicate with God. Whatever problems, I must name my problems to him, I must tell him, I must not just say our father who art in heaven – I must tell him what I need. (Participant 4)
So with God, you know, you just find the strength from nowhere, and then at the end of the day you, you, you realise that God [is] there, really, and God is really working. (Participant 9)

In other studies, religious or spiritual means of coping have also been associated with positive outcomes (Stepfanek, McDonald, & Hess, 2005). Often religion or spirituality has been shown to provide a sense of meaning, hope, and reassurance to the caregiver (Bussing, Fischer, Ostermann & Matthiessen, 2008).

This spiritual coping can also operate in a negative manner (Mytko & Knight, 1999). In the present study, however, the emotional and spiritual strength that participants gained from their relationship with God confirmed the findings of other studies that found religion to operate as a support system (Blinderman & Cherny, 2005). For these participants, this relationship led to a significant amount of trust. One participant stated, “I trust nobody except for him.” Trusting in the higher guidance provided by religious or spiritual beliefs and practices is known as ‘intrinsic religiosity’ (Bussing et al., 2008). Such beliefs, which were illustrated by participants in the present study, illustrated that religion also operates as a source of motivation and hope, as seen in the comment, “the only hope I have is from Jesus.” This type of spirituality facilitates a sense of control as meaning is made from these experiences (Fillion et al., 2009).

Juggling Home and Work Difficulties

Caregivers’ ability to balance their personal lives and their professional roles...requires the individual to engage with their own limited personal resources. Several participants found it difficult to negotiate times when they experienced difficulties in both their personal and work lives. Participants found the combination of work and personal difficulties as creating more continuous and severe problems. Caregivers’ ability to balance their personal lives and their professional roles is one of the most challenging barriers to coping (Frank, 2008). Having several competing roles requires the individual to engage with their own limited personal resources. Thus, having competing roles increases caregivers’ levels of stress and decreases their ability to cope with this stress (Kim et al., 2006). Participant 2 shared:

But then tomorrow again is another day and I am going to face that same particular situation. So I find it hard again, but then I don’t know, …it’s hard to take it away... and when we come back the next day… it comes again to your head again. (Participant 2)

Participant 2 accentuated the enduring nature of caregiving difficulties that may only be temporarily erased each day before they “come again to your head.” This suggested both the presence and accumulation of personal and occupational difficulties over an extended period of time. High workloads and elevated responsibilities, as well as the persistent nature of these stressors, may initiate stress and burnout (Maslach, Schaufeli, & Leiter, 2001).

Some participants tried to address the stress of juggling home and work difficulties by compartmentalising. Participant 2 dealt with this challenge by attempting, unsuccessfully, to compartmentalise stressors in the home or in the work setting:

Sometimes it does help, to talk with some other people because here I am facing these difficult things, and then at home again, maybe I am facing with, difficult things again, so it becomes a problem… because you are now … [having] a work situation problem and then family matters sometimes become a problem.

Participant 8 depicted a different approach to compartmentalising of these difficulties:

When I am at work, I don’t think about whatever I am doing at home. I’m just doing whatever I’m supposed to do, so for me it is all about doing something at the right time, at the right place. I don’t have any problem, if I have a problem at home I make sure that I solve it at home, and when I come to work, I find that I do not even think about it. Like if I can have a problem here, I can't just take it and go, and solve it at home. I just solve it here and then I’ll finally be alright.

In both cases, the caregivers worked to separate their personal and work lives.

In other situations, however, the stress of experiencing both home and work difficulties led to harassing patients. Participant 3 observed:

It really affects them in a bad way… I saw [them] saying and meaning we have problems of our own…you find that people [are] harassing patients…, they will just say eh you are sick – that is why you got this disease [HIV/AIDS] because you got one, two, three, and…it might not be…, the person is just saying it – but…might be having problems of her [sic] own, you see …so…the stress is really... making a negative.

Participant 3 commented on how personal troubles also begin to manifest in the caregiving, noting, “the stress is really a negative,” and adding, “you find that people [are] harassing patients.” This statement put the importance of their coping within context and provided an indication of the outcome of enduring challenges and the continuous exposure to daily stressors.

Potentially Failing to Cope

The accumulation of such stressors has implications for caregivers in terms of their working abilities and abilities to cope and manage such stressors. These stressors often overwhelm the caregivers, and have significant impacts on both their professional capacities as caregivers and their personal lives.

When you’re stressed you can't…deal with the challenges because… there are so many challenges… so when you’re stressed, you end up dropping in the families and dropping the patients, um…. you end up not doing your work correctly. (Participant 5)

For participant 5, the “many challenges” faced as a caregiver are perceived as having significant implications for the caregiver’s abilities, which further compound the challenges of the caregiving process. Participant 5 also mentioned ‘dropping patients,’ meaning that the challenges are so overwhelming that they are not able to support their patients and provide the kind of care they feel that they should, because they are constrained by these challenges.

The comment below demonstrates further the inherent difficulties in trying to achieve this "perfectionism" in one’s vocational work.

you shoulder everything; you think ah! I want to – I feel like I should take all their sufferings and carry [it] myself for them and you can't, cause they leave there. And you've got – you don't only concentrate on one patient you've got maybe three, four, six patients to care [for] and they come with the same problem. (Participant 4)

Caregiving within palliative care institutions may evoke stressors that arise due to the obligation caregivers feel to “shoulder everything” as well as the expectations associated with being the caregiver, the professionals within the situation, who may feel as though they should take the patient’s suffering upon themselves. These experiences of not being able to meet all of their patients’ needs can escalate, leaving caregivers unable to envisage an alternative.

Disillusionment Versus Acceptance

Often caregivers’ abilities to cope are challenged to the extent that the failure to manage is accompanied by feelings of hopelessness and helplessness, as described below by two different participants:

It's difficult. Sometimes you…feel [like you do] not [want] to come back here. (Participant 7)
It throws some burden on one, because you feel that you, you, you won’t achieve what you want. So that is the effect. (Participant 6)

Both participants 6 and 7 highlight the extent to which coping skills are often pushed to the limit; there are times when the caregivers often feel that it is too much and struggle to not be overpowered by this sense of disillusionment.

However, the statements below seem to illustrate an alternative understanding, one highlighting ways of engaging with the difficulties and thus often evading the sense of disillusionment that other caregiver's may experience.

I've been here for 5 days, I've already... what can I say, I don't know how to explain it. I'm just [continuing and] I will just take it like, I'm used to. (Participant 11)
You…come with techniques that can make you at least [cope with] the stress, but the stress is always there. Every job, or in life, the stress is there and you can't avoid it, but it will depend [on] how you deal with that stress. (Participant 10)

Participant 11 attributed her ability to manage such stressors to the extended duration and familiarity of the experience, while participant 10 felt that acknowledging stress and managing that process was beneficial in coping. There is an important role in being able to anticipate and engage with the difficulties that seems to allow both participants 11 and 10 to evade that sense of disillusionment. Participant 11 conveyed a sense of acceptance of the stress and felt “used to” these pressures.

Adaptation theory suggests that people are able to adapt to stressors through being exposed over time (Miller & McFall, 1991). This exposure decreases their sensitivity to stressors through familiarity. Although caregivers’ familiarity with the situation may also emphasise their helplessness and inability to control aspects within, and reactions to, the caregiving process, being able to accept the consequences of stressors provides caregivers with a sense of control over the process. This ultimately may help them to control the outcome of caregiving.

Some caregivers sought to remove their helplessness by adjusting to the environment. Some caregivers sought to remove their helplessness by adjusting to the environment. Although most participants expressed some degree of difficulty in managing stressors, Participant 4 felt able to manage circumstances and emotional experiences effectively:

I don't know if there is anything that is going to weaken my caregiving, nothing no – and I won't allow that to happen, because if I can allow that thing to happen, to be weak in caring, then I [am not] supposed to be here. (Participant 4)

Participant 4’s view suggested caregivers should not be conceived of as weak. Weakness is associated with those in the patient role, which places pressure on the caregiver to avoid this. In this view, the caregiver is not provided the opportunity to engage with weakness, often placing the caregiver at a higher risk for stress and difficulties coping with challenges. This is particularly important given that stress is only a single factor involved in their ability to cope as a caregiver and that caregivers are often faced with multiple factors beyond stress and workload.

Discussion

The multiple factors contributing negatively to caregiver coping in this study are significant in that they are able to influence one another, having a cumulative effect on the caregivers’ wellbeing. The stress proliferation theory considers that these daily stressors continue to accrue, resulting in the caregiver being overwhelmed, not by one particular incident but by the cumulative effect of continuous exposure to stressors (Pavalko & Woodbury, 2000). These stressors impinge on the caregivers’ emotional management, increasing their vulnerability as additional stressors arise, until the caregiver is at risk for potential failures in emotional management. The implications of such are that the caregiver is not able to continue, or take on any additional stressors, without being severely affected both personally and professionally. This highlights the importance of the long-term effect of coping strategies, as well as the need for interventions to assist caregivers to manage stressors consistently, rather than allowing them to become overwhelmed by the accumulating stressors.

Future Interventions and Considerations Going Forward

Several participants had difficulties finding the right person to whom they could disclose their stress. Thus, the first intervention would be to arrange support and debriefing structures that are accessible and separate from the institution itself. In addition, psycho-educational interventions could provide caregivers with additional coping skills, enabling them to address these challenges more effectively. It would also be helpful to work towards enhancing and reinforcing the positive factors that enhance coping, such as meaning making, and utilising techniques that may facilitate caregiving processes. Interventions within community-based palliative care should also consider opportunities to engage with communities around issues of HIV/AIDS, other terminal illnesses, and poverty so as to manage any stigmas. Thus, contextual issues are vital to understanding and establishing interventions, in particular the context found in this study, which is reported by the authors elsewhere (see Uren & Graham, 2012). Interventions should encourage communities to support the resources available within the community (Rowe, 2003).

Summary and Conclusion

This study explored the emotional experience of caregivers within a community-based, palliative care institution. The data obtained was analysed from an interpretative, phenomenological perspective to understand lived experiences. Caregivers reiterated their need for someone to confide in, but felt that support was not easily found or was coupled with a fear of occupational repercussions. Coping strategies can inform the caregiver’s perceived ability to manage the consistent difficulties within community-based, palliative care. Caregivers utilised alternative mechanisms, such as music, alcohol, distraction techniques, and spirituality, both effectively and ineffectively. Ineffective coping often led to the accumulation of stressors, with a considerable impact on the caregiver and their working abilities. This highlighted the importance of coping, and the necessity to support caregivers and to put measures in place in to prevent burnout and stress.

Coping strategies can inform the caregiver’s perceived ability to manage the consistent difficulties within community-based, palliative care. Future interventions should consider generating support that is readily available, but not intertwined with their position in the workplace. Such interventions could be tailored to assist in decreasing burden and stress, and fostering motivation and satisfaction.

Authors

Sarah A. Uren, MA
E-mail: sarahuren@gmail.com

Sarah Uren obtained a Master’s Degree (MA) in Community-based Counselling Psychology from the University of the Witwatersrand, Johannesburg, South Africa. She is currently a registered Counselling Psychologist in a private practice, and she recently started lecturing at the Department of Psychology, University of South Africa (UNISA). During her internship she worked in government hospitals and community clinics in South Africa. Her research interests are primarily in the field of community psychology, with particular interest in the role of public health in low-income communities and the implications for healthcare workers. This research is used as a basis to assist in creating community interventions to facilitate healthcare workers resources and as a means to increase healthcare workers well-being. Especially in the South African context with the AIDS epidemic, there are increased implications for the rural and disadvantaged communities, and the healthcare workers in those communities.

Tanya M. Graham, MA
E-mail: Tanya.Graham@wits.ac.za

Tanya Graham obtained a Master’s Degree (MA) in Community-based Counselling Psychology from the University of the Witwatersrand, Johannesburg, South Africa. She is currently completing her doctorate in Community Psychology. She has been a practicing counselling psychologist for 12 years. She currently lectures and supervises postgraduate students at the Department of Psychology, University of the Witwatersrand. Her research and teaching interests are primarily in the field of community psychology and public health. These interests include the training of community workers and professional psychologists for the realities of work in low-income communities; community-based project design, implementation and evaluation; working in multidisciplinary applied contexts; and the psychosocial and support needs of marginalised groups and communities, especially those affected by social and health issues such as HIV/Aids, poverty, violence, and migration.

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© 2013 OJIN: The Online Journal of Issues in Nursing
Article published April 15, 2013


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