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Feature Article

The effects of support groups on dementia caregivers: A mixed method study

Özlem Küçükgüçlü, PhD

a

, Burcu Akpınar Söylemez, PhD

a,

*, Görsev Yener, MD, PhD

b,c

, Ahmet Turan Işık, MD

d

aDepartment of Internal Medicine Nursing, Dokuz Eylul University Faculty of Nursing, Inciralti, Izmir, Turkey

bDepartment of Neurology, Dokuz Eylul University Faculty of Medicine, Inciralti, Izmir, Turkey

cInternational Biomedicine and Genome Institute, Dokuz Eylül University Turkey

dDepartment of Geriatrics, Dokuz Eylul University Faculty of Medicine, Inciralti, Izmir, Turkey

A R T I C L E I N F O

Article history:

Received 26 May 2017

Received in revised form 20 July 2017 Accepted 24 July 2017

Available online 18 August 2017

Keywords:

Support group Dementia Caregiver Burden Mix method Caregiving

A B S T R A C T

The aim of this qualitative and quantitative study was to understand the effects of support group inter- ventions on the caregiving burden of individuals providing care for people with dementia. This study used the Caregiver Burden Inventory, and focus group interviews (18 caregivers), which were con- ducted using a semi-structured interview form. The initial study sample was 37 primary caregivers; however, the final analysis included 30 caregivers. The quantitative data were analyzed by paired sample t-test.

The interviews being analyzed using content analysis. It was found that there was a significant de- crease in the scores for total burden (p= 0.049), social burden (p = 0.008) and emotional burden (p = 0.000) after the intervention. The content analyze revealed three main themes (“having knowledge,” “calming down,” and “acceptance”). Overall, it was concluded that support groups are effective in reducing care- giver burden.

© 2017 Published by Elsevier Inc.

Introduction

As the percentage of older people rises in many countries, there has been a commensurate rise in the number of people with de- mentia. In 2015, there were 46.8 million people with dementia in the world, with the number of older adults with dementia pre- dicted to double every 20 years.1In line with these global figures, the number of people with dementia (PWD) is also increasing in Turkey. A study conducted in 2009 found that dementia preva- lence in people aged 55 years and above was 8.4% which increased in parallel with age in Middle Anatolia.2In the study, which was conducted in Izmir (the city in which the present research was con- ducted), Keskinoğlu, Yaka, Uçku, Yener, Kurt (2013) found that the percentage of dementia in individuals 65 years of age and older was 12.9%.3Since that time, there have been no further prevalence studies in Turkey.

Dementia has long been recognized as a public health priority;

when cognitive impairment is accompanied by disruptive and ag-

gressive behavior and failing functional capacities, it becomes more difficult to care for PWD, which places greater burden on caregiv- ers. Therefore, caregivers need appropriate support programs such as support group interventions.

Background

Dementia is a syndrome that results in progressive cognitive, functional and behavioral changes, all of which make home care difficult because the needs of PWD typically increase over time, with most eventually becoming fully reliant on the caregivers4,5; there- fore, caregiving can be an all-consuming job.

Turkish culture and society traditionally promotes strong family bonds and familial care for those in need; therefore, family care plays a significant role for people with dementia as many older adults with dementia are cared for at home.6The Alzheimer’s Associa- tion (2016) estimated that there were approximately 600, 000 informal caregivers in Turkey. Generally, as institutional care is not yet culturally and socially acceptable in Turkey, the oldest daugh- ter or son is expected to become the primary caregiver.6 Unfortunately, as there is not enough formalized structured home care service within the Turkish healthcare system, families receive little support when providing home care to PWD; therefore,

* Corresponding author. Department of Internal Medicine Nursing, Dokuz Eylul University Faculty of Nursing, Inciralti, Izmir, Turkey.

E-mail addresses:[email protected](Ö. Küçükgüçlü),burcu.akpinar@

deu.edu.tr(B. Akpınar Söylemez),[email protected](G. Yener),atisik@

yahoo.com(A.T. Işık).

0197-4572/$ — see front matter © 2017 Published by Elsevier Inc.

https://doi.org/10.1016/j.gerinurse.2017.07.008

Contents lists available atScienceDirect

Geriatric Nursing

j o u r n a l h o m e p a g e : w w w. g n j o u r n a l . c o m

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caregivers are trapped between the cultural social pressure and their caregiving responsibilities and find giving care a burden because of the lack of support. Therefore, priority should be given to support for home care.

Because the caregiver burden increases the longer the caring continues,7there is a need to develop and implement effective in- tervention strategies.8In many studies conducted with caregiver’s emphasis is put on the negative results of care such as the burden, depression, coping difficulties, and low quality of life.7,9–11There- fore, developing and providing support services has become increasingly important. Interventions to assist PWD caregivers have been of interest for many years and various intervention pro- grams have been implemented, such as psycho-education, technology-based interventions, multicomponent interventions, psy- chotherapy, and cognitive behavioral therapy.12–14One of the important intervention for caregivers has been “support groups,”

which is where people who are facing the same problems, share their experiences and provide mutual support through a planned sequence of actions.15–17Support groups have been found to provide a comfortable environment for the sharing of emotions and anxi- eties, thereby decreasing the caregiver’s burden and stress levels, alleviating depression, preventing feelings of social isolation, and increasing their coping skills, well-being, and quality of life.8,14,18–20 The World Alzheimer Report (2015) reported that strengthening support and services for PWD caregivers was vital in reducing care- giver burden, and pointed out that all healthcare professionals need to be aware of the needs of not only the patients but also the care- givers, who are of vital importance for the patient’s continuing care process.21

There are many caregivers in Turkey; however, the services avail- able to them are currently insufficient. Many studies have been conducted in other countries to evaluate the effectiveness of support groups on dementia caregivers.20,22,23However, there has been little research in Turkey on the effectiveness of support groups, and studies that have been done have tended to only use quantitative study designs, with very few using mixed methods.

This study used mixed methods (qualitative and quantitative) to examine the effect of support groups on the caregivers’ burden.

The underlying assumption of mixed methods research is that it can more comprehensively address some research questions than using either quantitative or qualitative methods alone.24The integration of different types of data can generate insights into a research ques- tion, resulting in an enriched understanding of complex health research problems.25The purpose for using mixed methods in this study was to reinforce the results revealed in the quantitative scale with statements from the caregivers. In accordance with the aims of this study, the following hypothesis was tested: Support group intervention is effective in reducing the burden on PWD caregiv- ers. The present study was also conducted to understand the Turkish caregivers’ experiences of the support groups. Therefore, a quali- tative design was appropriate as it enabled the researcher to understand the subjects’ direct experiences.26It is hoped that the findings from this study can facilitate culture-oriented family care planning and cross-cultural comparisons.

Material and methods Design and sample

A quasi-experimental quantitative and descriptive qualitative mixed method was used for the study. Treatment fidelity was evalu- ated based on study design, the training of interventionists, and the delivery and receipt of the interventions.27While there was strong support for all areas, there were some concerns about the receipt of the intervention, primarily because the characteristics of Turkish

culture restrict the free expression of emotions; therefore, sub- jects may not find it easy to express negative emotions and thoughts about their family PWD care burdens. To overcome these possible problems, a comfortable, supportive environment was provided so that the caregivers felt safe to participate in the discussion, and nursing researchers attended all sessions for treatment fidelity.

The sample consisted of primary caregivers who cared for PWD registered at dementia and geriatrics outpatient clinics of a uni- versity hospital for at least 4 h in a day over at least six months.

The National Institute of Neurological and Communicative Disor- ders and Stroke-Alzheimer’s Disease and Related Disorders Association (NINCDS-ARDRA) criteria for AD diagnosis was used.28 Subjects were recruited in two ways; research announcements were placed on the walls of outpatient clinics, and physicians working in these outpatient clinics invited caregivers to the support group.

A meeting was held with forty-two volunteers to give detailed in- formation about the research and to explain the study method. After the meeting, five caregivers said that they would be unable to com- plete the planned research period. Therefore, there were 37 caregivers willing to participate in the study; however, as only those who participated in at least seven of the sessions were included in the final analyses, seven further participants were excluded, and the quantitative data for the analyses obtained from 30 caregiv- ers. The reasons for the missing data was that the subjects moved to another town (n= 2), the patient died (n = 2), there was a change in primary caregiver (n= 2), and there was an unwillingness to con- tinue (n= 1). Eighteen caregivers participated in the qualitative section of the study; ten from the first group and eight from the second group volunteered to participate in the focus group inter- view, all of whom had participated in last sessions.

Data collection

The “Socio-demographic Features Questionnaire” and the “Care- giver Burden Inventory” (CBI) were used. The CBI is a 24-item self- rating questionnaire, the validity and reliability of which was examined by Küçükgüçlü, Esen, Yener (2009)29for a Turkish pop- ulation where the Cronbach’s alpha subscale values were found to be: 0.94 for time-dependency burden; 0.89 for developmental burden; 0.90 for physical burden; 0.76 for social burden; and 0.96 for emotional burden, with the whole inventory Cronbach’s alpha value being 0.92; therefore the CBI showed very high internal con- sistency for a Turkish population. In this study, the inventory was applied twice; shortly before the start of the support group inter- vention and after the support group intervention. Two focus group interviews were held in the last session using a semi-structured group interview method. In the focus groups, two members of the research team asked open ended questions about the caregivers’

experiences in the support group. The interview questions were as follows: “What have you experienced since the first day you par- ticipated in the support group meetings?”; “Would you please broadly summarize the whole process of the support group meet- ings?”; and “What did you gain from these meetings?” The support group sessions were held at the nursing faculty building in which two of the researchers worked. The interviews took place in a quiet room with no interruptions, lasted for 60–95 min, and were digi- tally audio recorded. The data were collected between September 2014, and June 2015.

Intervention

The participants were divided into two groups; the first group consisted of 19 PWD caregivers and the second group consisted of 18 PWD caregivers. Due to nonattendance, each session had ap- proximately 11 individuals. Ten sessions were held in two week

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intervals, with each session lasting 2 h. All participants were en- couraged to actively participate in the sessions. There is many of evidence to use of well-designed psycho-educational or multi- component interventions which is effective interventions for caregivers of PWD.8,13,16,20,30,31In line with this evidence, all of the sessions consisted of the sections “education”, “sharing” and “dis- cussion”. The contents of the sessions were prepared based on the literature13,15,20and the participants’ preferences (Table 1). Neces- sary revisions were made as new topics arose from the participants”

needs. First, information about the predetermined subjects were presented by the researchers for about 10–15 min (Table 1), after which the sessions were opened up for sharing and discussion. Apart from the subjects predetermined by the researchers, the subjects that the group had planned to talk about in the previous session were discussed. The subjects that came up during the sessions were noted and necessary arrangements made for subsequent session’s discussions as required. Subjects that participants needed to discuss were “revealing emotions” and “saying no”. A psychologist and psy- chiatric nurse were invited to two of the sessions, at which discussions were held on these two subjects. The sessions were con- ducted by two nursing researchers and two sessions were held on

“diseases and medications” by two attending physicians, who were also among the researchers. All sessions were held in the nursing faculty building and a comfortable environment was provided for the caregivers.

Data analysis

The study data were evaluated using SPSS for Windows 15.0 sta- tistical package software. For the data analysis, number and

percentage distributions, qualitative content analysis and a two paired sample t-test were used. The focus group interviews were analyzed using thematic analysis to identify and explore the pat- terns of meaning within the data. Thematic analysis is best suited to elucidating the conceptualizations that a given group holds on a particular topic, and also fit the research questions focused on ex- ploring the caregiver’s experiences during the support group sessions.32The focus group interviews were audio-taped and tran- scribed verbatim with the permission of the participants. Transcripts were initially analyzed one by one, with the themes being drawn out inductively. The data were coded separately by two research- ers and then the coding combined, from which the common themes and sub-themes were identified. Any differences in interpretation were discussed until consensus was achieved.

The rigor of qualitative methodology is judged by the unique cri- teria appropriate to the research approach. Credibility, confirmability, and auditability were the scientific criteria proposed by Guba and Lincoln (1994) for qualitative research studies.33Therefore, a number of steps were taken to enhance the credibility of the analysis. The credibility was established because of the researchers’ profession- al experiences with PWD and their caregivers as well as their extensive qualitative research experience. Further, as mentioned, all analysis results were cross-checked and discussed to reach con- sensus. The interview recordings also provided a complete and accurate account of the caregiver responses, thereby increasing data reliability. Confirmability was assured by making sure the themes and categories were a true representation of the caregivers’ expe- riences about the support group. In addition, confirmability was established by supporting the results with the caregivers’ quota- tions, as shown inTable 4. Auditability was established by maintaining an audit trail to record the context and background of the study, the evolution of the findings, and the decisions made and actions taken during the research process.

Ethics

The Institutional Review Board of a large university (X Non- invasive Research Ethical Board) approved the study (Ethical Approval Number: 1191-GOA/2014/06-18). The participants were informed about the objectives of the study, that the information collected would be confidential and that no individual would be identified, and that the focus group interview would be audio recorded. Written consent to participate was obtained and the participants in- formed they could drop out of the study at any time.

Results

The socio-demographic features of the patients and their care- givers are shown inTable 2. For the qualitative study, the ages of the participants ranged from 37 to 78 (x= 55.72, SD = 7.52) and all were female. Eleven participants were spouses and seven were daughters of the PWD. There was a significant decrease in total burden (p= 0.049), social burden (p = 0.008) and emotional burden (p= 0.000) after the intervention (Table 3). There were no statis- tically significant differences in the time-dependence burden (p= 0.810), developmental burden (p = 0.612) and physical burden (p= 0.381) scores between the pre-test and post-test (Table 3).

The age of the participants in the focus group ranged from 45 to 78 (mean= 56.10; SD = 9.30) and all were female. Eight partici- pants were the children and ten were the spouses of the PWD, with home care having been provided from one to five years. Three themes (“having knowledge,” “calming down,” and “acceptance”) were revealed from the focus group interview analyses (Table 4).

During the focus group interviews, the participants reported that they felt that they had improved their coping skills, had learned how Table 1

Content of support group intervention.

Sessions Content

Session 1 Introduction

Implementation of the data collection tools

Sharing of expectations of the sessions

Sharing of the session program

Giving information about the disease,

Sharing the subject and the date of the next meeting Session 2 Home care of the patients

Discussion

Sharing the subject and the date of the next meeting Session 3 Medication management

Discussion

Sharing the subject and the date of the next meeting Session 4 Communication with the patients

Discussion

Sharing the subject and the date of the next meeting Session 5 Self-care of the caregiver

Discussion

Sharing the subject and the date of the next meeting Session 6 Planning for future care needs and knowledge of formal

services

Discussion

Sharing the subject and the date of the next meeting Session 7-8 Difficulties of the caregiving process and coping

methods

Discussion

Sharing the subject and the date of the next meeting Session 9 Implementation of the data collection tools

Difficulties of the caregiving process and coping methods

Discussion

Session 10 General evaluation and closure

Focus group interview

Note: Necessary revisions in the support group intervention were made in accor- dance with new topics arising from the participants’ needs and plans were made to discuss these in the following sessions as well as the predetermined topics.

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to communicate, become better prepared for what they might ex- perience in the future, learned to be content with what they had achieved, and learned to be patient and accept the disease and its symptoms. Specific quotations are shown inTable 4.

Discussion

This study was conducted to examine the effect of support group interventions on the caregiver burden of those caring for PWD. The total caregiver burden score and some of its subscale scores were found to have decreased after the support group intervention. In accordance with these results the research hypothesis was ac- cepted. The results of this study were in line with findings from previous studies.11,15,19,22,30,31,34A meta-analysis confirmed the ef- fectiveness of caregiver support groups in reducing burden.15Hsu et al. (2017) stated that the caregivers had reported a moderate caregiving burden before intervention, but follow-up assessments found a decrease in the caregiver burden score.31Support group in- terventions assist caregivers to express their feelings, reduces their social isolation, and creates an opportunity for them to strength- en their social support.20

Overall, the qualitative findings from this study have enriched the understanding of how support groups can decrease a caregiv- er’s burden. In focus group interviews, the participants reported that their coping skills improved, they learned how to communicate, became prepared for what they would experience in the future,

learned to be patient and accepted the disease and its symptoms.

It can be suggested that these gains may have decreased the total score for caregiver burden.

In the subscale burden scores, it was found that after the support group intervention, the caregivers’ emotional and social burdens had decreased; however, there was no noticeable decrease in other subscale scores (time dependency, developmental, physical burden).

Emotional burden refers to the negative emotions caregivers have toward the PWD they care for.35In the literature, it has been re- ported that support groups can decrease psychological complaints, especially in caregivers experiencing high baseline loneliness,36and Table 2

Socio-demographic Features of Patients and their Caregivers.

For Caregivers

x SD

Age 58.37 9.30

n %

Gender

Female 30 100

Educational Status

Primary school 7 23.3

High school 11 36.7

University 12 40.0

Relationship of caregiver to care recipient

Spouse 12 40.0

Daughter/daughter-in-law 18 60.0

Duration of Caregiving

Less than 1 year 4 13.3

1–5 years 21 70.0

More than 6 years 5 16.7

For patients

x SD

Age 76.80 7.59

n %

Gender

Female 12 40.0

Male 18 60.0

Table 3

Comparing the Score Averages for Caregiver Burden and its Sub-dimensions before and after the Support Group.

Support Group Before (30) x ±SD

Support Group After (30) x ±SD

t p

Caregiver Burden 40.45± 19.08 35.84± 18.86 2.058 0.049a Time Dependency Burden 11.83± 6.49 12.00± 5.9 -0.242 0.810 Developmental Burden 9.37± 5.76 8.93± 5.64 0.513 0.612 Physical Burden 8.71± 5.99 7.92± 6.12 0.890 0.381 Emotional Burden 5.03± 2.99 2.56± 2.94 4.163 0.000b Social Burden 5.43± 4.49 4.00± 5.05 2.854 0.008b a (p< 0.05), b (p < 0.005).

Table 4

Themes and quotations.

“Having Knowledge” Thanks to you because we have become more self- aware. I always thought that he was being stubborn to me. I’ve learned that it was because of his disease.

(spouse, participant 2)

Thanks to you and thanks to my friends here. I’ve understood this situation much better. There is peace at home. We’re not sarcastic to each other. We had a money issue but we dealt with it. I mean, I have turned many of my negative views into positive. More important than this, I’ve learned and I’ve been trying to learn the phases [of the disease]

and what I’m going to experience in the future.

(spouse, participant 3)

Before we started to come here, believe me I did not have even half an hour at home without a fight with my husband. I was yelling at him and he was yelling at me. This is an environment that I am not used to because we used to be respectful and caring to each other. We married for love. This was wearing me down unbelievably. When I came here, I learned that husband was not doing these things consciously. He/

she was not acting against me intentionally. I started to regard him as not responsible for these behaviors.

I realized that he was doing worse when I yelled at him/her. I’ve not yelled at him under any circumstances for five months now. (spouse, participant 2)

“Calming Down” Through the meeting group, we freely expressed the feelings we had inside of us. We had questions. We were able to get answers for these questions from knowledgeable specialists. (daughter, participant 5) I mean, I’m very happy about this meeting. I told you when I first came here that I’d read about it either in a book or I’d seen it in the movies. Everybody interacted with each other and some good friendships were made. (daughter, participant 7)

“Acceptance” Although we didn’t make any progress with our father during our frequent meetings at his home, coming to this place helped us a lot in

understanding that our father was becoming sicker and that we should be calmer. (daughter, participant 8)

When I came here I learned that I was at the beginning of this circumstances and the best thing I gained here was that I accepted the disease of my husband. (spouse, participant 1)

For instance, I was angry because he couldn’t remember the word ‘glass’. I was angry because he could not distinguish a water glass from a tea glass. I mean you can’t believe it, you say,“This is a water glass, can’t you see it?” But now I say, “You will pour what you have in your hand into this glass, you will pour water from the bottle into this glass”. I’ve learned to say this stuff to him patiently. (spouse, participant 9)

He told me not to talk loudly to him. I told him that he was right but I was also right because I could not accept that he was sick. Then I told him that I was calmer now because now I’d accepted the fact that he was sick. (spouse, participant 3)

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improve caregiver emotional well-being and reduce their burden.23 Some caregivers who have experienced negative emotions stated that after learning about the disease process, they understood that their patients were not adopting some behaviors just to be spite- ful, and also stated that had learned be more tolerant and more patient. In addition, at the beginning of the group process, the care- givers were reluctant to share their negative emotions about the caregiving process, because in Turkey, taking care of one’s parents is a culturally and socially expected behavior; therefore, complain- ing about the responsibility for caring is considered unsuitable.

During the process, however, they started to share their feelings.

It is believed that the support group process contributed to reduc- ing the emotional burden of the caregivers by allowing their feelings to be shared with others having similar experiences without social pressure. At the end of each support group meeting, the caregiv- ers stated that they felt better and that they could easily express their feelings. Because the caregivers were able to release their neg- ative emotions, their emotional burdens decreased.

Because caregivers often lack social contact, they experience social burden feelings. Many of caregivers mentioned that their social circles had narrowed because of their caregiving responsibilities.

Because they were with people experiencing similar situations, the caregivers attending the support group meetings made new friends, as the support group made them feel understood and that they were not alone. As the caregivers” social burdens decreased as the social resources increased, this demonstrated how essential it is for care- givers to be supported and for them to understand the importance of giving time to themselves. Similarly, the qualitative data dem- onstrated that there was a sense of relief in sharing problems and making new social contacts.37

Although there were some reductions in the time dependency, developmental and physical burden scores, these reductions were not significant. As it is difficult to reduce the caregiver’s burden, the interventions over a limited time frame may not have allowed time for noticeable reductions. One study which adapted 12-weekly support groups for dementia caregivers also failed to find any re- ductions in burden.20,22As an early meta-analysis has shown, unsuccessful psychosocial interventions for caregivers may be related to the types of interventions used; for example, providing only short educational programs, treatment only with a support group or single interviews, and brief interventions or courses not complemented with long-term contact could all result in failure to reduce care- giver burden.38Twelve studies which examined the social support given to PWD careers were evaluated in a contemporary system- atic review; seven randomized controlled, one qualitative, two quasi- experimental, one pre-conducted and one post-conducted study;

from which20it was found that although the caregivers felt better and less socially isolated in qualitative terms, this beneficial state was not statistically significant when measured quantitatively.

The sub-dimensions in which the burdens were the highest were time-dependency burden, developmental burden, and physical burden. It is possible that improvements in these areas may be dif- ficult because of the time required for caregiving, the lack of time caregivers have for themselves, and the physical dependence the patients have on the caregivers for their daily life. Dementia is a disease that progresses over time and even during the interven- tion period (about six month), the disease phases of some patients progressed, additional caregiving problems arose and, therefore, a greater need for caregiving emerged.9,10It is thought that signifi- cant results could not be obtained for time factor and physical burdens because the disease is progressive and new care require- ments constantly arose.

The developmental burden focuses on the time that caregivers can be with their peers,35and is linked to the sacrifices made (e.g., hobbies, and placing career and friendships on hold etc.). The care-

givers in the support group were generally providing continuous care and talked about the involuntary changes they had had to make to their lives (such as having to retire, moving to a different town or city, not getting married, moving into the patient’s house, etc.) because they had taken an active caregiving role. Therefore, it is pos- sible that no differences can be made in the developmental burden scores because the caregivers’ current living conditions did not change in the limited time given for the support. There is a need, therefore, for a longer intervention period for changes to appear in this dimension.

Conclusions and recommendation

Participation in support groups and having interaction with other caregivers can positively affect the caregivers’ burden. In particu- lar, in this study, the emotional and social burdens of the caregivers decreased and after the support group intervention, the caregiv- ers became more knowledgeable about the disease and their care responsibilities, which resulted in the caregivers accepting the disease and its symptoms and calming down.

Caregivers need greater support from health professions with their care responsibilities. It is therefore recommended that support groups be utilized to decrease the burden on caregivers with pa- tients with different types of dementia and different diseases. It is recommended that more studies be conducted on a wider sample with longer intervention periods and expanded intervention pro- grams. In future research, support groups can be classified according to the relationship of the caregiver to the care recipient to allow for more homogeneous support. More qualitative research is needed to understand the experiences of Turkish families and the viabili- ty of support groups.

Acknowledgements

The authors thank to all caregivers for their participation, Merve Aliye Akyol, Research Assistant, MSc, Department of Internal Med- icine Nursing, Dokuz Eylul University Faculty of Nursing, Cansu Uşarel, Psychologist, Dokuz Eylul University Hospital, and Zekiye Çetinkaya Duman, Assoc. Prof. PhD, Department of Psychiatric Nursing, Dokuz Eylul University Faculty of Nursing for their contribution.

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