Electronic ISSN 2287-0237

VOLUME

THE BURDEN OF CAREGIVERS DUE TO STROKE PATIENTS LIVING AT HOME: INTEGRATIVE REVIEW

SEPTEMBER 2017 - VOL.13 | REVIEWS ARTICLE

The burden was assessed from the perspective of individuals through four viewpoints: as physical, psychological, social, and financial overload. Some studies separated the burden of caregiving into two groups: the specific events or activities as an objective burden, and the emotions, feelings, and attitudes as a subjective burden.1,2 Even though some papers stated that caregivers have positive feelings, and negative feelings can occur on many occasions, such as stress, worries, or guilt because of their responsibility to take care of patients. Moreover, the caregivers who had chronic health problems themselves increasingly experience high levels of stress and burden.3,4

Stroke was found to be the leading cause of long-term disability. Stroke was a traumatic life event not only for the persons who had the stroke but also for their family caregivers. Stroke patients have significantly limited functioning resulting from the disability of movement and of personal activities, impairment in cognition, and depression or change in personality. Most of the stroke caregivers carried the main responsibility for the care of the stroke patient at their home. Sometimes, they acted like parents, which caused tension in the relationship. Changes in roles, relationships, and responsibilities may induce caregiver burden. The activities, financial duties, and necessary tasks all potentially created a burden for caregivers. The achievement of balance in caregiving was important as it could influence the health and well-being of caregivers.3,5,6

Integrative review is a method in primary qualitative research that identifies, analyzes, and draws the themes that form conclusions from multiple studies.7 From the literature review, several studies reflected the negative feeling of caregivers during their care for patients. There are many feelings affecting caregivers such as stress, anxiety, depression, anger, and others. These feelings are the negative caregiving perceptions of caregivers especially in caregivers of stroke patients. The themes of the stroke caregivers’ burden were broad and unclear. Using a thematic analysis can help to identify the themes about the burden of stroke caregivers from multiple studies. The screening process of the systematic literature search followed the process from Robin Whittemore and Kathleen Knaf is shown below in Table 1.

Table 1: The screening process of the systematic literature search.8

 

 

Qualitative research and stroke caregivers

Most of the stroke caregivers were informal carers; for example, spouses or family members.5 They carried the main responsibility of caring for the stroke patient at their home. If the care was not balanced, it could have a negative impact upon the health and well-being of the caregivers.3

Qualitative research about stroke caregivers was useful for seeking in-depth information to understand the things which happen to them or the related phenomena based on a constructivist paradigm.5 This study was an attempt to review the experiences and perceptions of stroke caregivers and to synthesize these within themes. There were several related symptoms in the qualitative studies about stroke caregivers’ burden based on different cultural contexts.9 The associated symptoms were the harmful effects on emotional well-being presenting both physical and psychological expression. This study seeked to narrow down several of the symptoms associated with the burden of stroke caregivers and to extract the codes and determine the themes.

Data sources included PubMed, CINAHL, and Cochrane. The following keywords were used in the study: “stroke or cerebrovascular accident or CVA”; “caregiver”; “burden”; “qualitative”. Sixty-one studies were identified from the databases published during the period from 2007 to 2017. After duplicated studies had been removed, the following evaluation of the remaining thirty-six studies was included in this review. The abstracts of the studies were read and screened to exclude non-matching content. A fifth of the studies was excluded due to being published more than ten years earlier, using a combination of relevant Medical Subject Headings,Qualitative research or study, not an academic journal, not PDF full-text terms, and no English language. In all, the researcher read every full-text selected paper to identify ten studies. Three studies were excluded because they did not focus on stroke caregivers. The last seven relevant articles met the inclusion criteria: (a) focusing on the burden and the environmental factors that lead to the burden; (b) focus on caregivers who are caring for stroke patients, and (c) these articles came from qualitative studies. Data were analyzed using the ATLAS.ti 8 Software and coding with line by line result findings applying grounded theory synthesis which comes from the basis of primary research. In the process, the data were extracted from the results of the seven studies. The next step then involved identifying and coding the concepts about caregiver burden listed in terms of initial codes with definitions and frequencies in the dataset. Moreover, the researcher grouped the codes and analyzed the same meanings of caregivers’ feelings in the themes.

Most of the studies mentioned the perceptions and experiences of caregivers who had an impact upon their quality of life. The synthesis identified the findings of the seven studies is presented in Table 2.

Coded data and themes emerging from the analysis identified by the researcher were confirmed with the theory of triangulation. All similar meaning codes were placed in groups by categories arising around themes. Three main issues emerged from the seven studies of caregiver burden: (1) level of the caregiver burden; (2) environmental factors of the burden, and (3) related illnesses from the burden.

Table 2: Synthesis identified the findings of recurrent studies.

 

 

Theme One: Level of the caregiver burden. The first theme found the level of the caregiver burden had five categories: (a) expressed as uneasiness; (b) expressed as nervousness; (c) expressed as aggressive behavior; (d) expressed as abandonment, and (e) expressed as sad emotion. Uneasiness was the first level that motivated caregivers to find some kind of help which would make it easier for them to cope. Caregivers may be concerned about their health and emotional feelings because they did not know how to solve their problems regarding these feelings. 

Aggression took the form of certain behavior types, often described as anger, a loss of control, or sudden emotional outbursts. One of the studies reported male caregivers explaining that their outbursts took the form of a physical response to the difficulties they faced every day. Abandonment can be described as the actions which took place when caregivers became exhausted, were in denial, or became selfish. The studies reported that a number of caregivers either became more selfish or conversely ignored their own lives when caring for family members who had suffered stroke. In many cases, caring for the patient became their sole focus, leading the caregiver to devote their time and effort to the role while their own lives took on minimal importance. Sad emotions included bereavement, depression, guilt, sadness, isolation, and feelings of uselessness or stigmatization. Many families of stroke patients reported feeling guilty, while feelings of loneliness and a lack of happiness were also commonplace. Some had to do things alone as part of their care duties, which caused discomfort and feelings of unease. Previous studies of caregiving had also reported negative emotions and psychological distress which could be signs of reduced quality of life in terms of both health and social life. These categories could be difficult to measure or classify accurately, but had a broad adverse influence upon the health and well-being of caregivers.

Theme Two: Environmental factors of the burden. The second theme found the environmental factors of the burden. The caregivers in these studies stated that there were many factors in the environment which impacted their health and stimulated feelings which resulted in the burden. In one of the studies, it was explained that the main factors which increased the difficulty of the caregiver’s role included the level of the patient’s impairment, financial pressures, lack of support, the presence of other family members to share the burden, and the added burden of responsibility.

Theme Two: Environmental factors of the burden. The second theme found the environmental factors of the burden. The caregivers in these studies stated that there were many factors in the environment which impacted their health and stimulated feelings which resulted in the burden. In one of the studies, it was explained that the main factors which increased the difficulty of the caregiver’s role included the level of the patient’s impairment, financial pressures, lack of support, the presence of other family members to share the burden, and the added burden of responsibility.

Theme Three: Related illnesses from the burden. The last theme concerned the relevant illnesses from the burden and consisted of two categories: (a) pathological disease, and (b) physical illness that has its origins in the mind. Pathological diseases of caregivers were the structural and functional changes in the bodies of the caregivers that were the physical symptoms of conditions such as fatigue, headache, pain, and weakness. The common physical symptoms included sleep problems, headaches, and a general lethargy and fatigue, although one caregiver was quoted observing that aches and pains was normal for older people. However, many of the caregivers in the studies reported fatigue as one of the causes of their inability to pay better attention to their own health.

Another category which was related to illness in caregivers of stroke patients was that of physical illness. The physical illnesses resulted from the mental state of emotional feelings of the caregivers. The symptoms expressed were similar to Another category which was related to illness in caregivers of stroke patients was that of physical illness. The physical illnesses resulted from the mental state of emotional feelings of the caregivers. The symptoms expressed were similar to

Table 3: Summary of themes, coding, and examples quotations from the data

 

There were three themes of qualitative studies about the burden in stroke caregivers that emerged from seven related articles. The first theme mentioned the level of the caregiver burden in five parts, noting that the emotional burden can affect the health of the stroke caregivers. The first and second parts of this aspect were low level as mental discomfort or an emotional feeling, or perceiving events as irrelevant to their lives although it was possible to cope 10. At the next level came more tension, but the stroke caregivers were still able to cope 4. The feelings of annoyance, anxiety, distress, emotional strain, exhaustion, fear, frustration, panic, stress, tension, and worry were found. Many articles found that the caregivers needed to adapt in both physical and psychological terms 16-18. Greater tension was expressed in aggressive behavior that may affect caregivers’ health and result in illness, and this level can stimulate caregivers to display violent behaviors. The expression of abandonment and expression of sad emotions have a greater effect on caregivers’ health. This knowledge reflected the fact that the stroke caregivers should understand and manage their feelings because these emotions not only impacted upon the health and illness of the caregivers but also impacted upon the stroke patients 3. Stress theory of Selye (1956) reported that stress has three levels, the person who embraced the burden for a long time were susceptible to illnesses such as peptic ulcer and depression 16-20. From the result, the first theme came from a variety of factors while environmental considerations were involved in the second theme. This theme affected their own health causing them to have health problems. Their symptoms came not only from the pathology of the diseases but many came from their inner feeling. From this knowledge it would be made easier for them to understand the environmental factors that affected their health. If the caregivers could manage the environmental factors influencing them, it might help them to manage their burden from caring for the stroke patients when they encountered barriers, and thus limited the impact of the burden. Managing these would help them to maintain good health and the potential to care for their loved one.

The integrative review of qualitative studies about the burden imposed upon stroke caregivers provided unique insights into the stroke caregivers’ perceptions. The study proposed to explore and identify the burden in the caregivers who are caring for stroke patients in their homes, and is synthesized within themes. Three main issues emerged from the studies of the caregiver burden: (1) level of the caregiver burden; (2) environmental factors of the burden, and (3) related illnesses from the burden. This knowledge was up to date and extracted from the expression of behaviors responding to three themes which came from problematic factors. This allowed nurses or other healthcare providers to acquire a better understanding and could be used to create or design new ways to prevent the negative impact of the burden or managing the burden placed on the caregivers. The outcome of this would be that caregivers would be able to act with greater efficiency.