Running head: CAREGIVER BURDEN IN SCHIZOPHRENIA 1

Caregiver Burden in Schizophrenia: Article Critique on a Qualitative Study

Abigail Zandevakili

University of North Texas

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Summary
Introduction

Recently, there has been an increase in patients with schizophrenia transitioning to

outpatient and community services from hospital-based services. This transition provides

individuals with an informal caregiver who can offer necessary services at a lower cost.

Caregiving responsibilities include reminding the individual of medication, hygiene, and eating.

However, these responsibilities can lead to the caregiver feeling a sense of burden on their daily

lives, physical health, and emotional well-being (Gater et al., 2014). The aim for the article

Sometimes it’s Difficult to Have a Normal Life: Results from a Qualitative Study Exploring

Caregiver Burden in Schizophrenia is to investigate subjective experiences of informal

caregivers of individuals with schizophrenia as a means of understanding caregiver burden

(Gater et al., 2014). Researchers also proposed there is a need for more accurate self-report

measures and how there is only the slightest of evidence in content validity in current measures

for subjective burden. Gater et al. (2014) provides several factors found in previous research

which may impact the caregiver’s subjective burden. These include: symptomology; ethnicity;

the gender providing the care; the gender receiving the care; the relationship between the

caregiver and person living with schizophrenia; the living situation between the two; the ages of

the individual receiving care, as well as the caregiver; and education attainment (Gater et al.,

2014).

Methods

The researchers utilized a face-to-face, semi-structured study involving open-ended

questions during qualitative interviews. Clinicians identified persons with schizophrenia first

from referrals of private clinicians, then determined their eligibility for a continuation. Each
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individual was at least 18 years of age and diagnosed through the Diagnostic and Statistical

Manual of Mental Disorder, IV, Third Revision (DSM-IV-TR). Each met at least moderately ill

criteria and were using antipsychotic medications at the time of the study (Gater et al., 2014).

Additionally, each person was required to have care from an informal caregiver, who would later

be the participant of the study. Individuals excluded from participating were persons with any

other Axis I diagnoses, any alcohol or substance dependency within one year, or abuse within

three months. There was also an exclusion if dementia, delirium, and/or amnestic disorders were

present, as well as mental retardation, organic brain syndromes, or any prior or present medical

condition that may impair the cognition or other neuropsychiatric functioning of the individual

with schizophrenia (Gater et al., 2014).

After eligibility was found, their informal caregivers were contacted. To participate,

informal caregivers needed to be at least 18 years old, currently taking part in at least four hours

of providing care to the individual with schizophrenia, and have no severe neurological/cognitive

deficits or condition that may affect the ability to participate in the interviews given by the

researchers (Gater et al., 2014).

Interviews were one-hour in length that each participant (informal caregiver) took part in,

and a semi-structured interview guide was used by a trained interviewer. Throughout the

interview process, “care was taken to avoid the use of leading questions in order to ensure that

caregivers’ responses were reflective of their experiences and free from external bias” (Gater et

al., 2014, p.3). Each interview was audio-taped, copied verbatim, then entered into Atlas, Ti – a

qualitative software package. The verbatim transcripts were also analyzed through a grounded

theory approach where underlying concepts were found through what participants’ said (Gater et
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al., 2014). An exercise of collage-building was also used in the study and discussed during the

interview. This collage represented the caregivers’ subjective experiences.

Results

Six dimensions of caregiver burden were suggested through the interviews: emotional

well-being, physical impact, financial demands, caregiver concerns, impact on daily activities,

and impact on relationships (Gater et al., 2014). Emotional well-being was found to be the most

frequently reported impact on caregivers, with 74% reporting feeling emotional. These

caregivers felt sad, overwhelmed, frustrated, angry, stressed, and/or embarrassed. A number of

these caregivers also felt the unpredictable nature of the disorder was often the reason for feeling

worried and anxious (Gater et al., 2014).

In addition, there were reports of negative, physical impacts for caring for a person with

schizophrenia. Participants described themselves as feeling tired, worn out, and drained. One

participant stated the physical demands are so exhausting that caring for the individual would not

last much longer (Gater et al., 2014).

In regards to the financial impact on caregivers, it was described that the person with

schizophrenia depended on the caregiver for financial support, particularly for the cost of

medication (Gater et al., 2014). The leading contributing factor to financial difficulties was the

impact caring for another had on jobs. Caregivers either gave up their work, had to change the

way they worked, or had to change their profession altogether. For the individuals who remained

employed, a great lack of sleep was noticeable or there was a disturbance at work by the

individual they cared for (Gater et al., 2014).

The caregivers had concerns in one or more areas: fear of what their future would hold,

worrying about the next episode the individual will have, and worsening symptoms. These
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concerns where held by 12 of the 19 participants. The central impact caring for a person with

schizophrenia in means of daily activities was the lack of time for their responsibilities and

themselves. One caregiver even acknowledged that “[she does not] have much of a life anymore”

and “between running around for the kids and caring for [her] mother, there’s not much time for

anything else” (Gater et al., 2014, p.5) Participants such as the individual quoted above are

known to cancel plans, feel they are going to lose control of their lives, and have difficulty

spending time with other family members. A negative impact was seen on caregivers’

relationships with others for 11 of the 19 participants, as well. Gater et al. (2014) noted

caregivers felt a strain on their marriage or that not enough time being spent with their children.

Conclusions

This study was consistent with previous findings in similar studies. I) The role of caring

for someone has an enormous impact on various aspects of a caregiver’s life. II) The findings of

this article reiterate how essential it is to design and implement strategies for informal caregivers

to help reduce “caregiver burden”. Evidence-based measurements in self-report for caregiver

burden is evident to begin executing such strategies.

Evaluation

Introduction

The introduction of this article provided a solid background of caregiving, giving insight

to costs and responsibilities which accompany caring for an individual. Gater et. al (2014)

provided information on why and how informal caregivers are coming to be, as well as the

benefits of having outpatient care. The researchers differentiated between objective and

subjective burden, which is beneficial, for a major component of the study was derived from

subjective views. It is apparent that the objective for the researchers is to create a path for
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sufficient, valid measures of self-report to be designed. A more comprehensive review of these

measures which lack evidence would create a more informative introduction. Benefits are clearly

stated within the introduction and the importance of understanding the impact caregiving has is

apparent. A reasonable amount of material was given, including prior factors found in previous

research. These factors were key in helping understand caregiver burden.

Methods

One could read the methods and could easily follow how to identify eligible participants

for an exact study and design used. Consistency in the measures of the individuals with

schizophrenia was utilized, as well. Researchers excluded individuals who would have

potentially skewed results. The authors did recruit 19 individuals from three separate

geographical states to avoid geographical bias and show population validity: a central state, an

eastern state, and a southern state. However, this does not allow any considerable room for

generalization. Fortunately, the goal for this particular study was investigative. The sample was

also slightly diverse in that participants cared for five different subgroups of schizophrenia.

However, there were only three ethnicities, one of which only included one participant.

The decision to use a face-to-face, semi-structured study with open-ended questions

seems acceptable, as this provided room for discussion and feedback. More information on the

collage would have been beneficial, however. The collage was mentioned just once, but plays an

imperative role in the study. The collage allowed for discussion on subjective experiences and

verbatim to be analyzed. The researchers demonstrated construct validity during the transcription

of quotes. All analyses were completed by two primary researchers who regularly reviewed the

information and consulted with a wider team of experts. Internal validity threats were also

decreased due to conscientious researchers during the interviews. Gater et al. (2014) avoided
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leading questions to ensure the participants’ responses were reflective of experiences the

participants had. The researchers were careful in their questioning to avoid external biases. Due

to lack of measurements with validity, using Atlas.Ti and grounded theory to transcribe

interviews and analyze content would seem to be reasonable solutions to understanding and

interpreting caregivers. More information on how quotes and actions were transcribed, as well as

examples of codes, would allow for better understanding of the analysis process.

Results

The researchers suggest six key dimensions of caregiver burden. With these dimensions,

analyses of the interviews, and the collages, the authors created a conceptual model to outline

and visualize the experiences of the participants in the study. The most frequently reported

concerns of caring for an individual with schizophrenia were then transferred to a visual map. To

confirm the results, a comparative analysis was used throughout the three stages of interviews: 1-

7, 8-13, and 14-19. Near the end of the study, an emergence of new information was minute,

with 32 of the 34 concepts related to caregiver burden being shown in the first round of

interviews. In all, the results were clear and direct and the conceptual model was easy to follow

and understand.

Conclusion

I) The caregivers’ perceived emotional and physical wellbeing was found to have

significant implications. The role of caring for someone has significant impact on various aspects

of a caregiver’s life. This study emphasized the importance of unmet needs among caregivers of

persons with schizophrenia. Participants had negative impacts in their emotional well-being,

daily activities, physical health, financial demands, and relationships with others. These findings

are consistent with that of previous studies. The researchers’ precautions to their qualitative
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interviewing made for adequate internal validity. Unfortunately, these findings do need to be

interpreted cautiously due to the use of only 19 participants. Larger studies could lead to new

facets which were unable to be identified through a small sample size. Additionally, researchers

found a need for routine assessments for informal caregivers of individuals with schizophrenia.

Providing care can decrease the emotional and physical negative impacts. II) At numerous

points, the researchers noted the importance of creating content-valid self-report measurements

for caregiver burden. Evidence-based measures would be significant for understanding the

impact of caring for one is, as well as identifying potential risks for the caregivers. Through the

study process, the key facets of caregiver burden were apparent, and using these facets could

serve as the start of a guideline for such measurements in the future. In addition, these

measurements could potentially help to contextualize findings from past studies and improve

forthcoming studies. Religion and personality appeared to be relevant in some informal

caregivers. This suggests the concept of caregiver burden is not universal across ethnicities,

religion, ages, and genders. The researchers failed to consider faith, religion, or spirituality as

characteristics in participants. There should have been more clarity how information was being

transcribed and also some examples of codes used.

Changes to Improve Internal Validity in Future Replications

Overall, this study was well executed and sufficiently analyzed. A few modifications in

future studies, however, would be necessary to achieve the measures desired by these

researchers. Firstly, the sample was made of only 19 participants from three states. Additionally,

the participants were from referrals of clinicians of the individuals with schizophrenia. This does

not allow enough room for generalization. The length of time in caring for the individual with

schizophrenia seemed to go unnoticed, as well. There may be a difference in caregiver burden

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between an individual who has been a caregiver for two years in comparison to an individual

who has been caregiving for 15 years. If there were four separate groups (I. less than one to five

years of experience, II. five to 10 years of experience, III. 10-20 years of experience, IV. 20 plus

years of experience), a comparative study on how each define caregiver burden, as well as

measuring negative impacts, can perhaps be evaluated more successfully. In addition, the length

of the interview was one hour. The age of participants varied between 21 and 82. Maturation will

be exceptionally different at both ends of the age range. An 82-year-old may become fatigued 20

minutes into the interview, where as a 21-year-old may have no issues with interviewing for an

hour. These changes would allow for stronger studies with similar objectives.
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References
Gater, A., Rofail, D., Tolley, C., Marshall, C., Abetz-Webb, L., Zarit, S., & Berardo, C. (2014).

Sometimes It’s Difficult to Have a Normal Life: Results from a Qualitative Study

Exploring Caregiver Burden in Schizophrenia. Schizophrenia Research and Treatment,

2014, 1-13. Doi:10.1155/2014/368215