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2 assignments due within 24 hours

Open Posted By: surajrudrajnv33 Date: 18/10/2020 High School Dissertation & Thesis Writing

Week for assignments. Most be completed within 24 hours no longer

This is two assignments. 

Assignment 1:

  • Proposed data analyses
  • Descriptive statistics
  • Inferential statistics
  • Predicted findings
  • Timeline for the proposed study

The name of the article is attached and will need to be referenced to complete this assignment. *Needs to be at least 700 words*

file to used is  attached called research paper.pdf

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Assignment 2:

Search the University Library for a peer-reviewed research article related to human services that uses inferential statistical analysis. For example, you might search social work and quantitative research or peer counseling and quantitative research. Be sure that your results include statistics using inferential analysis.

Write a 350- to 525-word paper discussing statistical analyses used in the selected study. Your paper should:

  • Summarize in 100 to 150 words the content of the research study discussed in the article. Provide at least 1 APA-formatted citation.
  • Respond to the following questions in 250 to 375 words about the statistical analyses inthe article:
  • Does the article incorporate graphs or tables that facilitate understanding of the data? How are they used?
  • What descriptive statistics were used in the study? Are the descriptive statistical analyses appropriate for the subject?
  • Identify the inferential statistics used, and comment on whether the analyses support the research problem or hypothesis. (For example, do they support the conclusions reached by the author or authors? Are the statistics misleading or biased?)

file to use for this is called week 4.pdf

Category: Mathematics & Physics Subjects: Algebra Deadline: 24 Hours Budget: $80 - $120 Pages: 2-3 Pages (Short Assignment)

Attachment 1

J Clin Nurs. 2020;29:3425–3434. wileyonlinelibrary.com/journal/jocn  |  3425© 2020 John Wiley & Sons Ltd

Received: 6 February 2020  |  Revised: 25 May 2020  |  Accepted: 5 June 2020 DOI: 10.1111/jocn.15380

O R I G I N A L A R T I C L E

The relationship between personality traits, caring characteristics and abuse tendency among professional caregivers of older people with dementia in long-term care facilities

Weichen Chen RN, Postgraduate Student  | Fan Fang RN, Postgraduate Student  | Yu Chen Dr, Professor of Nursing | Jin Wang RN, Postgraduate Student | Yuanmin Gao RN, Postgraduate Student | Julan Xiao RN, Postgraduate Student

Weichen Chen and Fan Fang contributed equally to this work.

School of Nursing, Southern Medical University, Guangzhou, China

Correspondence Yu Chen, School of Nursing, Southern Medical University, No. 1023, Shatainan Road, Baiyun District, Guangzhou 510515, Guangdong Province, China. Emails: [email protected]; [email protected]

Funding information Construction project of Teaching Quality and Teaching Reform (Open Online Courses) both in Guangdong Province and in Southern Medical University, Grant/Award Number: ZL201904. Higher Education Reform Project of Southern Medical University, Grant/ Award Number: JG201931 and JG201955. Education and Teaching Achievement Award Cultivation project of Southern Medical University, Grant/Award Number: School word〔2019〕46. College Innovation and Entrepreneurship (Employment) Education Project in Guangzhou, Grant/ Award Number: Higher Education in Guangzhou〔2019〕15.

Abstract Aims and objectives: To explore the relationship between personality traits, caring characteristics and abuse tendency among professional caregivers of older people with dementia in long-term care facilities in China. Background: Elder abuse is a serious global health problem and human right violation with high incidence among older people with dementia. There are many investiga- tions about impact factors of risk of abuse among family caregivers of older people with dementia. However, in long-term care facilities, the situation of abuse tendency needs further investigation. Design: Cross-sectional study. Methods: An observational survey was conducted according to the STROBE check- list. We investigated 156 professional caregivers of older people with dementia in three long-term care facilities in Guangzhou, China. Participants completed a de- mographic questionnaire, the Caregiver Abuse Screen (CASE) and the Neuroticism Extraversion Openness Five-Factor Inventory (NEO-FFI). Data were analysed using Mann–Whitney U tests, Kruskal–Wallis tests, Spearman's rank correlation and logis- tic regression analyses. Results: Over half of the participants (51.9%) reported abuse tendency to the older people with dementia. There was a significant negative correlation between the car- egivers' agreeableness scores of NEO-FFI and their CASE scores. Multivariate logis- tic regression analyses highlighted that protective factors of abuse tendency were caregivers' agreeableness, care recipients' source of finances and their duration of dementia while higher care difficulty and presence of older people's behavioural and psychological symptoms of dementia (BPSD) were the risk factors. Conclusion: Caregivers' agreeableness personality trait and the caring characteris- tics of older people with dementia may be relevant to abuse tendency in long-term

3426  |     CHEN Et al.

1  | INTRODUC TION

The World Alzheimer Report 2018 estimated that there are 50 mil- lion people living with dementia worldwide, and the number will rise to 152 million by 2050 (Alzheimer's Disease International, 2018). Dementia is characterised by a progressive decline in memory and skills necessary to carry out everyday activities (Li, 2011). Older people with dementia suffer from cognitive impairment and chal- lenging behaviours. They are often dependent on others with activities of daily living (ADLs) causing increased workload to their caregivers, making them a vulnerable population for abuse (Yan, 2014). A previous study showed that caregivers of older peo- ple with dementia were more likely to experience burnout, poten- tially resulting in abuse and neglect of the older people they cared for (Thomas, 2001).

Elder abuse is recognised as a serious global health problem and human rights violation with high incidence among older people with dementia (Yon, Mikton, Gassoumis, & Wilber, 2017). It has been widely described as “a single or repeated act, or some inappropriate action, occurring within any relationship where there is an expec- tation of trust, which causes harm or distress to an older person” (Chen, 2019; Lachs & Pillemer, 2015). Elder abuse can result in serious health consequences for the victims, including increased morbidity and mortality (Lachs, Williams, O'Brien, Pillemer, & Charlson, 1998; Schofield, Powers, & Deborah, 2013), institutionalisation (Lachs, Williams, O'Brien, & Pillemer, 2002), hospital admissions (Dong & Simon, 2013) and negative effects on families and society at large (Wang, Sun, Zhang, & Ruan, 2018).

A researcher points out that it is crucial to screen the risk of abuse for preventing elder abuse (Feng & Liu, 2010). Estimates of the prevalence of elder abuse of older people in nursing home range from 8%–11% (Wang, Meng, et al., 2018). A recent study showed that 53.2% (n = 340) of caregivers of older people with dementia in long-term care facilities reported a CASE score more than three, in- dicating a risk of abuse (Zeng et al., 2018). The number of older peo- ple being abused is expected to increase, given that many countries are experiencing a rapid increase in the ageing population (Gallione et al., 2017).

2  | BACKGROUND

Many previous studies have explored the risk of abuse in developed countries (Acierno et al., 2010; Biggs, Jill Manthorpe, Tinker, Doyle, & Bob Erens, 2009; Compton, Flanagan, & Gregg, 1997; Thomas, 2001). However, little research has been conducted to understand the situa- tions in developing countries. Studies have reported that the population of older people with dementia in China will exceed 10 million by 2025 (Wu et al., 2013; Xiao et al., 2014). Chinese people follow the Confucian culture of “Respect the Older and Love the Young” (Xiao, Shen, & Paterson, 2013). Elder care has long been provided by adult children at home where abuse is not acceptable according to the traditional moral standard of the society. However, in recent years, with the growth of population mobility and decreased family size, many adult children are unavailable to provide care for their parents. As a result, long-term care services for the older people with nonfamilial caregivers have been de- veloped rapidly. However, most caregivers in long-term care facilities in China are old with inadequate education. They often lack of the coping skills when older people with dementia display challenging behaviour and have low self-care ability (Chen et al., 2019; Zhang & Xiang, 2015).

care facilities. Further study with a larger sample size is needed to validate such a correlation. Relevance to clinical practice: Older people with dementia are at high risk for abuse. Prospective caregivers could pay more attention to developing their own agreeable- ness. The managers might establish monitoring system for reducing the abuse.

K E Y W O R D S

abuse tendency, long-term care facilities, older people with dementia, personality traits, professional caregivers

What does this paper contribute to the wider global clinical community?

• This study suggested high prevalence of abuse tendency among caregivers of older people with dementia in long- term care facilities.

• Professional caregivers' agreeableness was negatively correlated with abuse tendency in our study. This indi- cated the agreeableness as favourable characteristic in caring for older people with dementia.

• The managers of long-term care facilities should strengthen mental health education and disease training for professional caregivers so as to enhance their care skills and professional ethics.

     |  3427CHEN Et al.

Factors associated with risk of abuse of older people with dementia include the caregiver's physical and mental health (Cooper, Selwood, et al., 2010), care burden and fatigue (Cooper, Blanchard, Selwood, Walker, & Livingston, 2010), self-care ability (Cooper, Selwood, et al., 2010) and the psycho-behavioural symp- toms (Wiglesworth et al., 2010) of older people with dementia. A recent research identified individuals' intrinsic factors of both abusers and abused which could lead to the likelihood of abuse. It also proposed a relationship between personality traits of care- givers and their risk of abuse (Liu, Wang, Gu, Liu, & Yang, 2017; Zhu, 2015). Personality traits along with mental health and healthy interpersonal relationships were found to be factors that are most closely linked to abusive behaviours (Jiao, Yang, Luo, & Qiang, 2017). Previous studies have also found the relationships among personality traits, empathy (Wang & Li, 2017), job burnout (Liu, Li, Wang, Qi, & Li, 2012) and mental health (Su & Jiang, 2014) among caregivers. However, limited research has examined the direct relationship between the personality traits and abuse ten- dency among professional caregivers of older people with de- mentia in long-term care facilities.

In addition, few studies investigating the abuse tendency of older people with dementia in long-term care facilities in China have focused on external factors such as demographic variables and caring characteristics. Internal factors such as personality traits that may affect risk of abuse remain unclear. The research questions of the current study were to examine abuse tendency among professional caregivers of elder Chinese people with de- mentia in long-term care facilities and to explore whether profes- sional caregivers' personality traits and the caring characteristics are associated with it.

3  | MATERIAL S AND METHODS

3.1 | Study design

A cross-sectional survey referring to STROBE checklist (Data S1) was carried out to explore status of personality straits, caring character- istics and abuse tendency among professional caregivers of older people with dementia and to examine the association among them.

3.2 | Setting and participants

Professional caregivers of older people with dementia in three long- term care facilities in Guangzhou, PR China, were recruited for the study. The inclusion criteria for participants were as follows: (a) car- ing for people over 60 years old who had been diagnosed with at least one type of dementia, including Alzheimer's disease, vascular dementia, dementia with Lewy bodies; (b) have been educated and trained in dementia care; (c) caring for an elder with dementia for at least 1 month; (d) more than 18 years old; (e) being able to com- municate; and (f) being able to give voluntary informed consent. The

exclusion criteria were as follows: (a) caregivers who are patients' family members or friends; (b) caregivers who had mental issues. Sample size was determined as being at least 121 according to Kendall's sample calculation equation: sample numbers = max (di- mension number × 10) × [1 + (10%–20%)]. Also, in logistic regression, the recommended criterion of sample size is that EPV (events per variable) should be at least 10 to ensure a robust result (Peduzzi, Concato, Kemper, Holford, & Feinstein, 1996).

3.3 | Data collection

Data were collected from July 2018–October 2018. A total of 165 paper questionnaire were filled in by the professional caregivers and collected on the spot. Assistance was offered by the researcher to the participants who were not proficient in reading and had difficul- ties with filling out the survey. The screening criteria of the ques- tionnaire were the sameness of the answers and the omission of more than 15%. Finally, 156 professional caregivers completed the questionnaire and the response rate was 94.54%.

3.4 | Instruments

3.4.1 | Demographic variables

A self-designed demographic questionnaire was employed to col- lect general information about the study participants and their care recipients. It included two parts. The first part pertained to the caregiver's gender, age, care service time, care recipients' number, educational level, job satisfaction and caring difficulty for older peo- ple with dementia. The second part pertained to the care recipients' source of finance, duration of dementia, the older people's behav- ioural and psychological symptoms of dementia (BPSD) and their self-care ability.

3.4.2 | The Caregiver Abuse Screen for the Elderly

The Caregiver Abuse Screen for the Elderly (CASE) was used to measure the caregivers' risk of abuse. It was developed by Canadian researchers Reis and Nahmiash (Reis & Nahmiash, 1995) in 1995 based on neutral theory and was translated into Chinese and tested by Feng (2010). The scale consists of eight closed questions and one open question. A score of one was given to an answer of “Yes,” and a score of zero was given to an answer of “No” for each question. A total score ≥ 3 indicates risk of abuse. This was based on Feng's (2010) study which showed that those professional caregivers with a CASE score ≤ 2 did not display any abuse behaviours. The validity and reli- ability of the scale were tested with good results as the Cronbach's alpha coefficient was 0.77 in Reis & Nahmiash's study (1995) and was 0.68 in this study. Given the word “risk of abuse” was too sensitive to the caregivers, likely causing their refusal to participate in the study,

3428  |     CHEN Et al.

the Chinese version of the scale (Feng & Liu, 2010) was renamed as “the elders' life experience questionnaire.”

3.4.3 | Neuroticism Extraversion Openness Five- Factor Inventory

Neuroticism Extraversion Openness Five-Factor Inventory (NEO- FFI; Costa & Mccrae, 1990; Kurylo & Stevenson, 2011) was applied to identify the participants' personality traits. It was developed based on the Big Five personality trait model, including five major personality factors: neuroticism, extraversion, openness, consci- entiousness and agreeableness. The scale consists of 60 items with 12 items for each personality factor, respectively. A five-Lik- ert scale was used for each item with a score of one for “strongly disagree” and a score of five for “strongly agree.” The question- naire was tested with good reliability and structural validity in a group of Chinese College students as the mean Cronbach's alpha coefficient of each dimension was 0.73 (Yao & Liang, 2010) and was 0.71 in this study.

3.5 | Data analysis

Data were analysed using SPSS statistical software (version 19.0, SPSS). All data were analysed for normal distribution using Shapiro– Wilk test. If data followed normal distribution, the data were de- scribed using mean and standard deviation. Otherwise, the data were described using median and interquartile range. The data were analysed depending on nonparametric tests included Kruskal–Wallis and the Mann–Whitney U tests according to the number of groups. The relationships between personality traits and abuse tendency were examined by Spearman's rho correlation analysis. A univariate binary logistic regression analysis was carried out to identify the con- tribution of variables in predicting abuse tendency. The total CASE scores were set up as a dichotomy which was used as a dependent variable for the univariate binary logistic regression analysis (0 = no abuse tendency; 1 = abuse tendency as per score ≤ 2 and score ≥ 3, respectively). All variables were included in the univariate logistic re- gression, and the variables which significantly influenced the abuse tendency were used for the multivariate logistic regression analysis. The entry and removal cut-offs for the stepwise regressions were based on p values of .05 and .1, respectively.

3.6 | Ethical considerations

This study is a graduation project which had been reviewed by the ethics committee of our university and ethics approval was gained. The study was approved by each long-term care facility. A per- mission from all managers and written informed consent of all the participants were obtained. Participants were informed before the

study began that the information would have been maintained con- fidentially and anonymously.

4  | RESULTS

4.1 | Distribution of professional caregivers' CASE scores

The CASE scores of the professional caregivers ranged from 0 to 8 with a median of 3 and interquartile range of 3. Among all the profes- sional caregivers, 51.9% were scored more than 3 points, indicating an inclination towards elder abuse. Percentage distribution of car- egivers' CASE scores is demonstrated in detail in Table 1.

4.2 | Characteristics of professional caregivers, participants and their CASE scores

Among the 156 professional caregivers enrolled in the study, 91% were women. The mean age of the participants was 48.33 (SD = 7.01) years. The professional caregivers had provided elderly care service for an average of 33.65 (SD = 42.22) months. An educational level of elementary school or illiterate educational level accounted for 34.6% of professional caregivers. Regarding care recipients, the mean du- ration of dementia was 64.69 (SD = 45.97) months and 46.2% had behavioural and psychological symptoms. The results in Table 2 also showed that professional caregiver' CASE scores have significant difference on their caring recipients' number, caring difficulty, care recipients' source of finance, duration of dementia, BPSD and self- care ability by using the Kruskal–Wallis and the Mann–Whitney U tests (all p values < .05).

TA B L E 1   Distribution of CASE scores of professional caregivers (n = 156)

Items n (%)

Score

0 23 (14.7%)

1 21 (13.5%)

2 31 (19.9%)

3 38 (24.4%)

4 12 (7.7%)

5 17 (10.9%)

6 7 (4.5%)

7 2 (1.3%)

8 5 (3.2%)

Median (P25–P75) † 3 (1–4)

Mean ± SD‡ 2.73 ± 1.99

Minimum~Maximum 0~8

Note: Descriptive statistics. †Median (25%–75%); ‡Standard deviation.

     |  3429CHEN Et al.

4.3 | Subscales scores of the NEO- FFI of professional caregivers and correlation with CASE scores

The mean scores on the subscales of the NEO-FFI of the professional caregivers were 30.93 (SD = 5.65) for neuroticism, 41.90 (SD = 4.91)

for extraversion, 37.36 (SD = 4.36) for openness, 45.76 (SD = 4.27) for conscientiousness and 44.79 (SD = 4.96) for agreeableness. In the correlation test, there was a significant negative correlation be- tween the caregivers' agreeableness subscale scores and their CASE scores (r = −.282, p < .01). No statistically significant correlation was identified between the other subscales scores of the NEO-FFI and the CASE scores. The results are detailed in Table 3.

TA B L E 2   The characteristics of caregivers, care recipients and CASE scores (n = 156)

Variables n (%)† CASE M (P25–P75)

‡ χ2 p

Caregivers

Gender Male 14 (9.0) 2 (1,3) 1.040 .308

Female 142 (91.0) 3 (1,4)

Age ≤44 years old 31 (19.9) 2 (1,3) 2.519 .284

45~59 years old 122 (78.2) 3 (1,4)

≥60 years old 3 (1.9) 3 (3,3.5)

Care service time ≤12 months 75 (48.1) 2 (1,3) 3.461 .326

13~36 months 38 (24.4) 3 (1.75,5)

37~60 months 14 (9.0) 2.5 (1.5,5)

≥61 months 29 (18.6) 3 (2,3.5)

Care recipients' number

1~5 persons 114 (73.7) 3 (1,4) 3.866 .049*

≥6 persons 41 (26.3) 2 (0,3)

Education level Primary school or below 54 (34.6) 3 (1.75,3) 1.050 .789

Middle school 85 (54.5) 2 (1,4.5)

High school 15 (9.6) 3 (1,4)

College or above 2 (1.3) 1.5 (1,2)

Job satisfaction Not very satisfied 6 (3.8) 3 (1,3) 6.994 .136

General 69 (44.2) 3 (2,3.5)

Relatively satisfied 65 (41.7) 2 (1,4.5)

Very satisfied 16 (10.3) 0.5 (0,4.5)

Caring difficulty Not difficult 4 (2.6) 0.5 (0,2) 39.479 <.001**

Not very difficult 18 (11.5) 1 (0.3)

General 79 (50.6) 2 (1,4)

Relatively difficult 48 (30.8) 3 (2.25,5)

Very difficult 7 (4.5) 3 (3,5)

Care recipients

Source of finance Totally depend on self 46 (29.5) 3 (1,3) 6.081 .048*

Partly depend on self 89 (57.0) 3 (1,5)

Totally depend on adult children 21 (13.5) 2 (1,2.5)

Duration of dementia

≤12 months 15 (9.6) 5 (3,5) 11.390 .003*

13~60 months 68 (43.6) 3 (1,4)

≥61 months 73 (46.8) 2 (1,3)

BPSD No 84 (53.8) 2 (1,3) 17.800 <.001**

Yes 72 (46.2) 3 (2,5)

Self-care ability Inability to care themselves 68 (43.6) 2 (1,4) 6.022 .049*

Partial self-care 73 (46.8) 3 (2,4)

Completely self-care 15 (9.6) 1 (0,3)

Note: Descriptive statistics; Kruskal–Wallis and Mann–Whitney U tests. †number (%); ‡CASE Median (25%–75%); *p value < .05; **p value < .01.

3430  |     CHEN Et al.

4.4 | Logistic regression analysis of influencing factors for abuse tendency

Univariate binary logistic regression analysis included all modalities of each dimension listed in Table 2, and seven variables were chosen as affecting factors to the response variable. Upon these results, a multivariate binary logistic regression analysis for these significant variables was conducted and the results showed that five fac- tors were statistically significant. They are “duration of dementia,” “agreeableness,” “source of finance,” “care difficulty” and “BPSD.” According to the OR estimates, protective factors against abuse ten- dency included the following: “Source of finances” (OR = 0.481), with lower odds of being abused for care recipients who were financially dependent on their adult children than those who were financially independent; “duration of dementia” (OR = 0.525), with lower odds of being abused for care recipients with dementia for more than 61 months than those with dementia for less than 12 months; and “caregiver's agreeableness” (OR = 0.873), with lower odds of being abused by agreeable caregivers than by less agreeable ones. Risk factors for abuse tendency included “psycho-behavioural symptoms (BPSD)” (OR = 3.853), with higher odds of being abused for care re- cipients with psycho-behavioural symptoms than those without, and “care difficulty” (OR = 4.651), with higher odds of being abused by caregivers who have self-reported difficulties in providing care than those who haven't. The results of uni- and multivariate logistic re- gression analysis are shown in Tables 4 and 5.

5  | DISCUSSION

The current study found that 51.9% of the professional caregiv- ers in long-term care facilities have a tendency of abusing older people with dementia. This rate is much higher than that among caregivers of the general older population with dementia (3.2%– 27.5%; Fang & Yan, 2016). Dementia is characterised by decreased memory, cognitive deficits and decreased self-care ability. As an elder's dementia progresses, there is a further decline in his/her cognitive and behavioural abilities. The needs for care with daily life therefore increase, resulting in huge care burden on their car- egivers. In China, the daily responsibilities of professional caregiv- ers in long-term care facilities cover a wide range of activities and their workload can be very high (Han & Shi, 2016). In addition,

some older people with dementia often display BPSD, such as vio- lations, yelling, swearing or violent beatings towards caregivers, which increases the physical and mental strain on the caregivers (Yang & Shen, 2015). Coping negatively with such a challenging job is likely to lead to risk of abuse.

Interestingly, our results indicate that professional caregivers in long-term care facilities were less abusive than family caregivers in Wang's research (Wang, Sun, et al., 2018). This may be explained that they were usually under the supervision of managers or other professional staff in the workplace. Conversely, family caregivers look after older people with dementia at home without external su- pervision. This may lead to a greater risk of abuse (Chen, 2019). In addition, caregivers in long-term care facilities were more profes- sionally trained than family caregivers do. Education provides better knowledge and skills in caring for older people with dementia and coping with their behaviours, ultimately leading to decreased work pressure and then risk of abuse (Alt, Nguyen, & Meurer, 2011). On the other hand, family caregivers normally fulfil the caring responsi- bility 24 hr a day, 365 days a year, without way out or break, unlike professional caregivers who can leave and find another line of work. They carry too much care burdens and pressure, so are more likely to become abusive (Yang, 2013).

Regarding personality traits, the professional caregivers of the current study reported highest scores of conscientiousness. Agreeableness was scored the second highest, while neuroticism (M = 30.93, SD = 5.65) was scored the lowest. These results are simi- lar to those of previous studies on personality traits of nurses (Wang & Li, 2017). According to the Big Five personality model (Kurylo & Stevenson, 2011), caregivers with high conscientiousness scores have greater self-discipline and sense of responsibility. Professional caregivers with high scores in the agreeableness dimension are more likely to express sympathy, to be willing to help care recipients and to focus on the inner feelings of themselves. The neuroticism dimen- sion reflects personality traits associated with negative emotions, such as anxiety, depression, hostility and impulsivity. The profes- sional caregivers in the current study have given the lowest scores for this dimension, indicating that they were mentally stable, possess good interpersonal relationships and care for others.

According to results from the multivariate logistic regression analysis, the item of “Source of finances was dependent on their adult children” was considered as the protective factor for abuse. This indicates that the adult children provide life necessities for their

Personality traits Mean ± SD† Minimum Maximum r‡ p

Neuroticism 30.93 ± 5.65 12 47 0.052 .518

Extraversion 41.90 ± 4.91 27 55 −0.148 .065

Openness 37.36 ± 4.36 21 52 −0.080 .322

Conscientiousness 45.76 ± 4.27 37 60 −0.049 .542

Agreeableness 44.79 ± 4.96 33 58 −0.282 <.001**

Note: Descriptive statistics; Spearman correlation analysis; †Standard deviation; ‡Spearman's rank correlation coefficient; **p value < .01.

TA B L E 3   The scores of NEO-FFI of professional caregivers and correlation with CASE (n = 156)

     |  3431CHEN Et al.

parents with dementia, taking some of the burden off the profes- sional caregivers at the facility, and ultimately decreasing the risk of abuse (Yan, Chan, & Tiwari, 2015). In addition, “Source of finances dependent on adult children of older people with dementia” serves as additional supervision to professional caregivers, thus reduces the abuse tendency. In addition, an existence of psycho-behavioural symptoms, the long duration of dementia and high degree of care difficulties also influenced the abuse tendency among professional caregivers. The results of the current study suggest that the longer is the duration of dementia/symptoms, the lower seems the abuse tendency. The reason may be that in the early stage of dementia, due to the corresponding lack of knowledge and skills related to care of older people with dementia and the progress of the syndrome (Zhu, Lin, Shi, & Chen, 2016), caregivers do not adjust well to the new role when they are more prone to psychological burden and stress (Chen et al., 2019). As the time of care gets longer, the more experi- enced the caregiver is, the care recipient may be less at risk of abuse (Huang, 2017). In addition, as the relationship with the care recipient is closer, the caregiver is more likely to have compassion (Yuan, Lin, Chu, & Zhou, 2019). However, few previous studies have established an explicit relationship between duration of dementia and the risk of abuse. These hypotheses need to be tested in future research. As the cognitive ability and self-care ability of care recipients deterio- rate, and psycho-behavioural symptoms appear hard to be managed, the risk of safety issues such as running away and falling can increase

caregiver burden and care difficulties, which leads to an increase in the abuse tendency.

Agreeableness had a negative significant correlation with CASE scores among professional caregivers, as indicated by the related correlation. Also, it seems was a significant protective factor against the abuse tendency, as indicated by the multivariate logistic regres- sion. In other words, the more agreeable the participant is, the less was the risk of abuse. Personality traits play a critical role in think- ing and behaviour (Jiao et al., 2017). Individual responses to pres- sures and situations are greatly influenced by them. Previous studies (Wang & Li, 2017) have shown that nurses with a higher score of agreeableness have greater empathy. According to the Big Five per- sonality model (Kurylo & Stevenson, 2011), professional caregivers with higher scores of agreeableness were able to empathise with the feelings of older people with dementia, increasing their willingness to help their patients. A previous study also found that professional caregivers with higher scores on agreeableness tend to be more al- truistic by showing respect for older people with dementia, without expecting anything in return, voluntarily increasing the welfare of their patients. This process leads to good nurse–patient relation- ships (Huang, Huang, Song, Huang, & Huang, 2017).

There are several limitations with this study. First, a convenience sampling of 156 participants is unable to represent the general pop- ulation of professional caregivers of older people with dementia in long-term care facilities. The conclusion based on the results of the

B SE Wald p OR†

95% CI‡

Lower Upper

Age (caregivers) 0.070 0.026 7.101 .008** 1.073 1.019 1.129

Work satisfaction −0.623 0.232 7.196 .007** 0.536 0.340 0.845

Source of finance −0.521 0.260 4.001 .045* 0.594 0.357 0.990

Care difficulty 1.550 0.303 26.247 <.001** 4.712 2.604 8.525

Duration of dementia

−0.009 0.004 5.130 .024* 0.991 0.984 0.999

Agreeableness −0.153 0.038 16.473 <.001** 0.858 0.797 0.924

BPSD 1.017 0.333 9.343 .002** 2.765 1.440 5.307

Note: Univariate binary logistic regression analysis; †Odds ratio; ‡Confidence interval; *p value < .05; **p value < .01.

TA B L E 4   Univariate logistic regression analysis of influencing factors of abuse tendency among professional caregivers (n = 156)

B SE Wald p OR†

95% CI‡

Lower Upper

Source of finance −0.732 0.335 4.244 .039* 0.481 0.240 0.965

BPSD 1.349 0.459 8.635 .003** 3.853 1.567 9.042

Care difficulty 1.537 0.339 20.528 <.001** 4.651 2.392 9.042

Duration of dementia

−0.645 0.330 3.819 .051 0.525 0.275 1.002

Agreeableness −0.136 0.048 8.171 .004** 0.873 0.795 0.958

Note: Multivariate binary logistic regression analysis; †Odds ratio; ‡Confidence interval; *p value < .05; **p value < 0.01.

TA B L E 5   Multivariate logistic regression analysis of influencing factors of abuse tendency among professional caregivers (n = 156)

3432  |     CHEN Et al.

current study only applies to our study setting and needs further verification. Second, the CASE scale relies on self-reporting of care- givers, which may inevitably cause response biases. Third, there are no studies correlating CASE scores with actual abuse incidents and it is considerable about the generalisation of results.

6  | CONCLUSIONS

The current study found that more than half of the participants were at risk of abusing tendency to the older people with dementia. Personality traits play a critical role in abuse tendency among pro- fessional caregivers of older people with dementia in long-term care facilities. Specifically, the agreeableness dimension of personality traits is negatively correlated with abuse tendency. The character- istics of care recipients' source of finances and duration of dementia are the protective factors while their psycho-behavioural symptoms and caregivers' care difficulty are the risk factors related to the abuse tendency in long-term care facilities. Further research with a larger sample size is needed to validate such a correlation.

7  | RELE VANCE TO CLINIC AL PR AC TICE

The current study found that there is a high prevalence of abuse ten- dency among professional caregivers of older people with dementia in long-term care facilities. Importantly, the results also found that personality traits are related to the abuse tendency among profes- sional caregivers. This knowledge can be used by managers to increase awareness of how different people cope differently caring for peo- ple with dementia and help them to be aware of risks and signs of potential abuse. Moreover, long-term care facilities should establish a three-level monitoring system of abuse. The levels should include the following: (a) focusing attention on the daily behaviour of professional caregivers; (b) establishing a system to report incidents of abuse ten- dency or abuse; and (c) protecting older people of dementia through supervising the professional caregivers. The managers of long-term care facilities may also strengthen mental health education and dis- ease training for professional caregivers, thus increasing their aware- ness and knowledge of elder abuse (Alt et al., 2011) to enhance their care skills and professional ethics. In addition, long-term care facili- ties should combine medical care with nonmedical treatment for older people with dementia to delay the progression of dementia and the weakening of their self-care ability. The government should strengthen legislation and relevant policies to protect the rights and interests of the older people, especially those who lack self-care ability.

ACKNOWLEDG EMENTS The authors thank the patients, relatives and healthcare person- nel who participated in this study. We also acknowledge the sup- port of Affiliated brain hospital of Guangzhou Medical University, Guangzhou Shouxing Building and Guangzhou Haizhu District Baizhang Nursing Center. We are specially grateful to Dr. Ning

Wang, Dr. Xueling Yang, Dr. Ying Guan, Dr. Fei Peng and Professor Roger Watson for their help with the revision of the manuscript.

CONFLIC T OF INTERE S TS The authors declare they have no conflicts of interest.

AUTHOR CONTRIBUTIONS Study design: Weichen Chen, Yu Chen; data analysis: Weichen Chen, Fan Fang, Jin Wang, Yuanmin Gao; and manuscript preparation: Weichen Chen, Fan Fang, Yu Chen, Julan Xiao.

ORCID Weichen Chen https://orcid.org/0000-0002-1484-2554 Fan Fang https://orcid.org/0000-0002-6203-7824

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How to cite this article: Chen W, Fang F, Chen Y, Wang J, Gao Y, Xiao J. The relationship between personality traits, caring characteristics and abuse tendency among professional caregivers of older people with dementia in long-term care facilities. J Clin Nurs. 2020;29:3425–3434. https://doi. org/10.1111/jocn.15380

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Attachment 2

A pilot study evaluating depression in mothers with children diagnosed with Down syndrome in state health care

M. Swanepoel1 & T. Haw1,2

1 Division of Human Genetics, School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa 2 Clinical Genetic Unit, National Health Laboratory Service, Braamfontein, Johannesburg, South Africa

Abstract

Background Parenting a child who has an intellectual disability has been shown to increase the risk for developing depression. The purpose of this study was to screen for depression and to determine if there is an association between depressive symptoms and certain sociodemographic factors in mothers with a child diagnosed with Down syndrome in state health care facilities in Johannesburg. Methods The study included 30 biological mothers of children between 6 months and 3 years diagnosed with Down syndrome postnatally. The Edinburgh Postnatal Depression Scale (EPDS) was used to assess depression in participants. A 10-item sociodemographic questionnaire was concurrently administered. Data analysis was conducted using de- scriptive and inferential statistical analysis. Results The 30 mothers had a mean EPDS score of 9.1 (SD = 5.89) with scores ranging between 0 and 26. Eight mothers (26.7%) screened positive for depression with an EPDS score of 13 or greater. A statistically significant association was found between

an HIV-positive status and mothers who had an EPDS score of 13 or greater (P = 0.01). No significant association between depression and various other sociodemographic factors was identified. Conclusions Mothers with a child diagnosed with Down syndrome may be vulnerable to developing depression. A significant association was found between a positive HIV status and symptoms of depression, in mothers with a child diagnosed with Down syndrome. This study indicates the need for further investigations assessing the causes and risk factors resulting in postnatal depression in mothers with a child diagnosed with Down syndrome.

Keywords Down syndrome, Edinburgh Postnatal Depression Scale, intellectual disability, maternal depression, postnatal depression, trisomy 21

Introduction

Down syndrome and its incidence in South Africa

Down syndrome, also known as trisomy 21, is a genetic condition which occurs when there is an extra partial or complete copy of chromosome 21 (Bull 2011). Non-disjunction (the failure of segregation of homologous chromosomes during cell division) accounts for 95.0% of cases of Down syndrome, and

952

Correspondence: M. Swanepoel, Division of Human Genetics,

School of Pathology, Faculty of Health Sciences, The University of

the Witwatersrand, National Health Laboratory Service, Corner

Hospital and De Korte Street, Braamfontein, Johannesburg, 2001|

PO Box 1038, Johannesburg, 2000, South Africa

(e-mail: [email protected])

Journal of Intellectual Disability Research doi: 10.1111/jir.12549

VOLUME 62 PART 11 pp 952–961 NOVEMBER 2018

© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and

John Wiley & Sons Ltd

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it occurs more frequently in women of advanced maternal age. The remainder of Down syndrome cases are explained by mechanisms of chromosome translocation or mosaicism (Bull 2011).

Children with Down syndrome have intellectual disability, are short in stature, hypotonic and have distinctive facial features (Bull 2011). They are also at risk of multiple other medical complications including congenital cardiac defects which often need to be corrected surgically (Bull 2011).

Down syndrome is one of the most commonly seen syndromes in genetic clinics across the world (Sheets et al. 2011). Late initiation of antenatal care in South Africa and lack of available screening in most centres means few women have the opportunity to receive prenatal testing and diagnosis of Down syndrome (Urban et al. 2011).

Postnatal depression risk factors and its effect on the child

Postnatal depression is a common mental health issue worldwide; however, data from South Africa suggest that the prevalence may be higher than those reported in other countries (Kathree et al. 2014). Postnatal de- pression occurs predominantlywithin thefirst 3months after birth. The duration of postnatal depression is variable, with many women reportedly still being af- fected between 3 and 6months after onset but some- times up to 3 or 4 years after onset (Hewitt andGilbody 2009). Risk factors associated with developing postna- tal depression include a prior history or family history of mental illness, partner conflict, poor social support, obstetric complications and low socioeconomic status (Huang and Mathers 2001; Patel et al. 2002).

Maternal depression can result in child neglect and can impede cognitive development in an infant as a result of reduced responsiveness from the mother (Kathree et al. 2014). Identifying and treating depression in mothers can have a lasting positive outcome not only for the mother but also for other family members (Cuijpers et al. 2014).

Risk for depression in parents of children with Down syndrome

Parenting a child who has an intellectual disability such as Down syndrome increases the risk for developing depression due to less family involvement in social activities and more financial strain,

caretaking responsibilities and time demands for educational activities (Padeliadu 1998; Most et al. 2006; Povee et al. 2012). A study conducted in Switzerland identified that lower education levels, lack of income and partner conflict greatly contrib- uted to feelings of hopelessness that mothers with children with Down syndrome experienced. The au- thors emphasised the importance of psychosocial and socioeconomic support offered to mothers (Yildirim and Yildirim 2010).

A North American study reported that families with children with Down syndrome show remarkable resilience, stating that lower levels of stress are experienced when families have psychosocial support and are well resourced (Van Riper 2007). It has also been found that families with a child who has Down syndrome that is more socially responsive, has better language development and fewer behavioural problems report less maternal stress and better family functioning (Povee et al. 2012). It however remains unclear which factors contribute most to causing parental stress and depression.

Maternal depression studies conducted in South Africa and internationally

We were unable to locate published studies which had assessed symptoms of depression in South Africa, in women who have a child with Down syndrome. However, at least one study has assessed postnatal depression in a population group from the same area (Soweto), and at least two studies have highlighted that antenatal and postnatal depression in different regions in South Africa is a significant cause for con- cern (Ramchandani et al. 2009; Manikkam and Burns 2012; Stellenberg and Abrahams 2015). A cohort study conducted in Soweto, Johannesburg, identified a postnatal depression rate of 16.5% using the Pitt Depression questionnaire and identified exposure to crime, poverty and partner conflict as the highest correlating social stressors which increased the risk for developing postnatal depression in mothers (Ramchandani et al. 2009).

A study which screened for the prevalence of postnatal depression in mothers, in a rural Cape community using the Edinburgh Postnatal Depression Scale (EPDS) and the Beck Depression Inventory in SouthAfrica, showed that 50.3%of the sample screened positive for depression (Stellenberg and Abrahams

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2). Similarly, a study which assessed general antenatal depression rates and associated risk factors in the Kwa- ZuluNatal province of South Africa showed that 38.5% of recruited mothers screened positive for depression. Causative risk factors associated with depression in this study included predicted adverse neonatal outcomes, single marital status, unplanned pregnancy and a hu- man immunodeficiency virus (HIV) positive status (Manikkam and Burns 2012).

Most international studies assessing maternal postnatal depression have found lower rates of depression than described in South Africa. Variable rates of postnatal depression have been found in Italy, with a recent study reporting that 4.7% of mothers screened positive for depression on the EPDS whilst an earlier study found 12.6% screened positive (Clavenna et al. 2017). A study done in Australia found that only 3.3% of participants experienced postnatal depression (Ogbo et al. 2018). A study in the USA found a postnatal depression prevalence rate ranging from 8.0% in the state of Georgia to 20.0% in the state of Arkensas (Ko et al. 2017). In Vietnam, which is a developing country, the postnatal depres- sion rate was found to be 18.1% (Murray et al. 2015). Both the study in Australia and Vietnam identified low socioeconomic status and lack of a supportive partner as predominant risk factors (Murray et al. 2015; Ogbo et al. 2018).

Higher rates of postnatal depression have been found in developing countries than in developed countries, which highlights the complexity of the condition and the multiple predisposing factors involved (Ramchandani et al. 2009; Manikkam and Burns 2012; Stellenberg and Abrahams 2015; Clavenna et al. 2017; Ko et al. 2017; Ogbo et al. 2018). The purpose of this study was to screen for depression in mothers with a child diagnosed with Down syndrome in state health care facilities in Johannesburg, South Africa. Further- more, we aimed to determine whether certain sociodemographic factors were positively associated with cognitive and affective symptoms of depressive illness in our study group.

Methods

Participants

The study included 30 biological mothers of children between the ages of 6 months and 3 years who had

been diagnosed with Down syndrome postnatally. The mothers were recruited from the Down Syndrome Support Group and specialist clinics at tertiary hospitals in Johannesburg in the Gauteng Province of South Africa using convenience sampling. Specialist clinics included the Genetic Counselling, Cardiology, Developmental and Endocrine Clinics. All mothers were proficient or had reasonable profi- ciency in English. There was no participation bias, as none of the mothers identified for the study declined to take part in the study.

Procedures

Quantitative data were collected from May to July 2017. The two questionnaires, namely the EPDS and a 10-item sociodemographic questionnaire, were administered to each participant by the principal investigator. Written informed consent was obtained from all mothers who participated.

Upon completion of the EPDS, the principal investigator immediately evaluated the score and enquired further about feelings of depression and risk of self-harm where necessary. All participants who scored 13 or greater on the EPDS questionnaire, and mothers who voluntarily expressed a need for psychological counselling were referred to psychology services at the respective hospital.

Questionnaires

Edinburgh Postnatal Depression Scale

The EPDS was used to screen for depression in participants (Cox et al. 1987). The EPDS is a 10-item self-report screening measure which aims to identify symptoms of depression experienced in the previous 7 days. All questions are scored on a 4-point scale, indicating the presence and severity of a symptom, with a total score range of 0–30. The initial validation of the scale suggested a threshold score of 12 or 13 to be used as an indicator of major depression. It was specifically designed to detect depression in the postnatal period and does not primarily focus on somatic symptoms but rather on the identification of affective and cognitive symptoms (Cox et al. 1987). The time and duration of symptoms identified in mothers was not collected; therefore, no distinction was made between postnatal depression and other depressive illnesses.

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The EPDS was chosen because it was previously validated in the Gauteng Province of South Africa, and it was validated against the Diagnostic and Statis- tical Manual of Mental Disorders (DSM-IV) criteria for screening for depression (American Psychiatric As- sociation 1994; Lawrie et al. 1998). The scale was shown to have sensitivity of 80.0%, specificity of 76.6% and does not have to be administered by a health care practitioner specifically trained in psychi- atry and is therefore a valid screening tool for de- pression in South Africa (Lawrie et al. 1998; Manikkam and Burns 2012).

Sociodemographic questionnaire

The sociodemographic questionnaire administered to participants consisted of self-report items based on factors associated with depression in a previous study, namely age of mother, number of children, highest level of education, employment status, source of household income, relationship status and HIV status (Manikkam and Burns 2012). Questions regarding race, social support received from family and friends, age of child at diagnosis and current age of child diagnosed with Down syndrome were also included.

Ethics

Ethical clearance was obtained from the Human Research Ethics (Medical) Committee at The University of the Witwatersrand (Ethics Reference: M170259). Institutional and departmental approval was obtained from the tertiary hospitals.

Data analysis

The data were analysed using GraphPad QuickCalcs and STATA Data Analysis and Statistical Software (Graphpad.com 2017; Stata.com 2017). These freely available software programs were used to conduct descriptive and inferential statistical analysis. Data were organised per measures of central tendency (mean and median), and dispersion analysis was used to determine the range and standard deviation of the collected data. A Shapiro–Wilk test was used to assess the normality of continuous variables.

The relationship between categorical variables and the number of screen positive depressed mothers (EPDS score of 13 or higher) was analysed individually, using two-tailed Fisher’s exact tests and

a chi-square test. The continuous variables (age of mothers, age of child at diagnosis, current age of the child and the number of children) were compared individually against the variables mean depression score, using a t-test, for normally distributed data and a Mann–Whitney U test for non-normally distributed data. These independent calculations aimed to establish and support whether a statistically significant relationship exists between a positive depression screening test score and identified sociodemographic factors. A two-tailed P value of less than 0.05 was considered statistically significant. A multiple regression analysis could not be reliably calculated due to the insufficient sample size.

Results

Sociodemographic characteristics of mothers and children

The ages of the 30 mothers of children with Down syndrome ranged from 25 to 46 years. Table 1 shows the sociodemographic profile of mothers of children with Down syndrome. A majority of the mothers (86.7%; n = 26) were of black African ancestry, with four mothers (13.3%) being of mixed ancestry. A high percentage of mothers (70.0%; n = 21) were in a relationship. The number of children ranged between one and eight with the median number of children being three. At the time of data collection, the children with Down syndrome were between 6 months and 3 years of age. The median age of diagnosis was 3 days, but ranged from 1 day to 1 year after birth.

Six mothers (20.0%) had completed tertiary education in the form of a degree or diploma. Eleven mothers (36.7%) reported that completion of secondary schooling was their highest qualification, and 13 mothers (43.3%) had not completed primary and/or secondary schooling.

Most of the mothers (60.0%; n = 18) were not working with 23.3% (n = 7) being unemployed and 36.7% (n = 11) choosing to be stay-at-home mothers. Twelve mothers (40.0%) reported that they received weekly wages or monthly salaries. Many mothers had more than one source of income including unemployment benefits (10.0%; n = 3), receiving money from family support (43.3%; n = 13) or a monthly care dependency government

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social grant (60.0%; n = 18) which is provided to indigent families. All stay-at-home mothers were dependent on receiving a care dependency government social grant. Twenty-one mothers (70.0%) felt that they had sufficient social support from family and friends.

Of the 30 women, 20 (66.7%) said that they were HIV negative, eight (26.7%) said that they were HIV positive and two mothers (6.7%) said that they did not currently know their HIV status.

Outcome of the Edinburgh Postnatal Depression Scale

The 30 mothers had a mean EPDS score of 9.1 (SD = 5.89) with scores ranging between 0 and 26 (max score is 30). Eight mothers (26.7%) had an EPDS score above the screening cut-off of 13. Ten mothers (33.3%) were referred to see a psychologist because two women who had EPDS scores of 10 and 12 respectively, asked for a referral to psychology services.

Comparison of sociodemographic factors and a positive screening score for depression

Along with the sociodemographic profile of mothers of children with Down syndrome, Table 1 also illustrates the outcomes of the two-tailed Fisher’s exact tests and chi-square test calculated for the categorical variables and the categories of the number of mothers who had an EPDS score below 13 and those who had an EPDS score of 13 or greater. No statistical significance was found for race (P = 1.00), relationship status (P = 1.00), level of education (P = 0.47), employment status (P = 0.42) or social support (P = 1.00) and a positive screening score for depression. A statistically significant association was found between an HIV-positive status and mothers who had an EPDS score of 13 or greater (P = 0.01).

Table 2 shows the outcomes of the independent t- test and Mann–Whitney U tests calculated for continuous variables for mothers who had an EPDS score below 13 and those who had an EPDS score of 13 or greater. The current mean age of the children with Down syndrome, of mothers with a significant

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Table 1 Comparison of characteristics of mothers and a positive depression screening score

Categories Frequency Frequency of Mean F exact test

≥13 EPDS score EPDS score (SD) P value Race 1.00 Black 26 (86.7%) 7 (26.9%) 9.38 (5.93) Mixed ancestry 4 (13.3%) 1 (25.0%) 7.25 (6.08)

Relationship status 1.00 Single 9 (30.0%) 2 (22.2%) 7.67 (6.26) Married/partner 21 (70.0%) 6 (28.6%) 9.71 (5.77)

Highest level of education† 0.47†

Some primary/secondary schooling 13 (43.3%) 2 (15.4%) 7.62 (4.09) Completed secondary schooling 11 (36.7%) 4 (36.4%) 10.82 (6.88) Tertiary degree/diploma 6 (20.0%) 2 (33.3%) 9.17 (7.36)

Employment status 0.42 Employed (full time/part time) 12 (40.0%) 2 (16.7%) 8.42 (5.30) Unemployed/stay-at-home mother 18 (60.0%) 6 (33.3%) 9.56 (6.36)

HIV status† 0.01 Positive 8 (26.7%) 5 (62.5%) 13.13 (6.51) Negative 20 (66.7%) 2 (10.0%) 7.30 (4.91)

Social support* 1.00 Yes 21 (70.0%) 5 (23.8%) 8.57 (5.33) No 5 (16.7%) 1 (20.0%) 10.60 (9.10)

EPDS, Edinburgh Postnatal Depression Scale; SD, standard Deviation. *Mothers who indicated ‘unknown HIV status’ and/or ‘sometimes social support’ excluded; therefore, mothers do not total 30. †Chi-square test used due to 3 × 2 contingency table.

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EPDS score was 1 year and 5 months (CI: 5.22– 12.26), and no statistical significance was found (P = 0.40). The median age of mothers who had an EPDS score of 13 or greater was 38 years (IQR: 29.50–42.00). The age of mothers was not found to have a significant effect on the EPDS score obtained (P = 0.42). The median age of children at diagnosis, of mothers who had an EPDS score of 13 or greater was 2 days old (IQR: 1.00–53.23) and did not have a significant effect on the EPDS score obtained (P = 0.73). The number of children of the mothers who had screened positive for depression had a median number of three children (IQR: 1.00–4.00). The number of children was also not associated with depression (P = 0.65).

Discussion

A significant number of mothers with children with Down syndrome in our study screened positive for depression. It is important to contextualise these results within the rates of depression previously identified in South Africa to enable a better under- standing of them. HIV was found to be a factor that was associated with screening positive for depression in our study. This has important implications that need to be considered.

Parental stress of parents with a child with Down syndrome

The rate of depression in mothers of children with Down syndrome has not been well established and

described in the literature to allow comparison with our data. However, several studies show increased levels of stress in parents who have children with Down syndrome (Padeliadu 1998; Most et al. 2006; Norizan and Shamsuddin 2010; Povee et al. 2012). It has been shown in previous studies that parents of children with Down syndrome cope better than parents of children with other causes of intellectual disability (Fidler et al. 2000; Olsson and Hwang 2001; Abbeduto et al. 2004). This finding is attributed mainly to the parents understanding surrounding the nature and mechanism of a Down syndrome diagnosis and less behavioural concerns (Hodapp 2002; Povee et al. 2012).

Sociodemographic circumstances of South African state health care patients

South Africa is a developing country where great dis- parity exists between state and privatised health care (Benatar 2004). Communicable and non- communicable disease has greatly burdened the state health care system, as it serves the majority of South Africa’s impoverished and middle-income population groups (Mayosi et al. 2009). Maternal mental health is often neglected in the state health care system of South Africa, as the burden of disease such as diabe- tes, tuberculosis, HIV, cancer and cardiovascular disease fails to decline (Mayosi et al. 2009; Honikman et al. 2012). With little or no screening for maternal mental health issues in antenatal clinics, many women with mental health problems remain untreated (Honikman et al. 2012).

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Table 2 EPDS scores of mothers and their children diagnosed with Down syndrome and factors relating to their age or their child

test

Variable Sample mean

Mean (EPDS score <13)

Mean (EPDS score ≥13)

SD (EPDS score ≥13) t value P value

Current age of child (months)

19.83 20.77 17.25 9.84 0.88 0.40

Mann–Whitney U test Variables Sample

median Median

(EPDS score <13) Median

(EPDS score >13) IQR

(EPDS score >13) U value P value

Age of mother (years) 40.00 40.50 38.00 29.50–42.00 105.50 0.42 Age of child at diagnosis (days) 3.00 4.00 2.00 1.00–53.23 95.50 0.73 Number of children 3.00 3.00 3.00 1.00–4.00 98.00 0.65

EPDS, Edinburgh Postnatal Depression Scale; SD, standard deviation; IQR, interquartile range.

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Social welfare is the sole source of income for many mothers attending state health care in South Africa (Kathree et al. 2014). In our study, 60.0% of the par- ticipants were receiving a state funded care depen- dency grant, which is granted to those who earn below a certain level of income. Of the mothers screened, 43.3% had not completed their schooling. Being un- educated in an economy where jobs are scarce can be devastating and further reduces prospects and hope for a better future (Kathree et al. 2014). A lack of in- come has directly been linked to a perception of hopelessness in parents of children with Down syn- drome, which in turn increases the risk of developing depression (Yildirim and Yildirim 2010). Of the un- employed mothers in our sample, 33.3% screened positive for depression.

Contextualisation of depression rates identified in the study participants

As previously discussed, postnatal depression is believed to affect between 3 and 13% of all women in developed countries with higher prevalence estimates for developing countries such as Vietnam (Murray et al. 2015; Clavenna et al. 2017; Ko et al. 2017; Ogbo et al. 2018). In our study, 8mothers (26.7%) screened positive for depression whilst 10 mothers (33.3%) were referred to psychology services for further eval- uation. This is considerably higher than the previous postnatal depression rate of 16.4% found in a cohort of Soweto mothers by use of a different screening tool (Ramchandani et al. 2009). The results of general antenatal depression rates, however, from the Kwa- Zulu Natal population (38.5%), general postnatal depression rates in a Cape rural community in South Africa (50.3%) and postnatal depression (39.0%) in Khayelitsha, South Africa, were found to be much higher than in our study (Hartley et al. 2011; Manikkam and Burns 2012; Lund et al. 2014; Stellenberg and Abrahams 2015). The factors con- tributing to the high rate of postnatal depression in the Khayelitsha study were found to be unemploy- ment, exposure to crime, a lack of support from partners and an HIV-positive status (Hartley et al. 2011).

In areas of South Africa with low socioeconomic status, there are few protective factors, which may increase the risk of postnatal depression (Parsons et al. 2012). Gender inequality in rural communities may

lead to abusive relationships and unplanned teenage pregnancies which significantly increases the risk of postnatal depression (Stellenberg and Abrahams 2015). This inequality and lack of education also contributes to the high rate of HIV infection in com- munities like Kwa-Zulu Natal, where the researchers found an HIV prevalence rate of 39.0% in pregnant women (Manikkam and Burns 2012). Being in an area where unemployment and poverty predominate increases the risk of witnessing or being a victim of violent crime, which further predisposes women to developing depression (Ramchandani et al. 2009). These factors are likely to account for the high rates of antenatal and postnatal depression detected in the South African studies discussed.

As the communities in South Africa vary markedly in terms of socioeconomic status and risk factors for postnatal depression, it is difficult to make meaningful comparisons between studies. Every research sample group needs to be considered on its own merit. The percentage of symptomatic depression identified in our study is high and deserves attention. Our results indicate that mothers in our sample are vulnerable and at risk for developing symptoms of depression which may go undetected. This can have adverse ef- fects on the women themselves, their child with Down syndrome, their other children and their partners (Cuijpers et al. 2014; Kathree et al. 2014).

HIV status and risks for developing depression

South Africa has an alarmingly high prevalence rate of HIV, ranging from 10.4 to 19.9% in low socioeco- nomic areas, with rates as high as 25.2% in individuals between the ages of 25 and 49 years of age (Zuma et al. 2016). The relationship between being HIV positive and depression has been well established in South Africa (Rochat et al. 2013; Lund et al. 2014; Casale et al. 2015; Wouters et al. 2016). Factors pre- viously found to be linked to developing depression in HIV-positive individuals include stigmatisation, so- cial discrimination, fears regarding the future impact on their family, poverty, lack of support, loss of loved ones and the inevitability of death (Andersen and Seedat 2009). The stigmatisation from society results in shame and internalised guilt, which often results in depression, regardless of other personal or socioeco- nomic factors (Simbayi et al. 2007). Peltzer and Shikwane (2011) found that similar factors, including

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lack of social support, stigma and discrimination, were also significantly associated with an increased risk of depression in pregnant HIV-positive women.

We found a significant association between an HIV-positive status and a positive depression screening score in mothers of children diagnosed with Down syndrome (P = 0.01). Of eight mothers who said they were HIV positive, five screened positive for depression. Peltzer and Shikwane (2011) found a similarly high rate of depression (45.1%) in their sample of South African HIV-positive mothers, using the EPDS. Pregnant women in South Africa are rou- tinely screened for HIV during their antenatal check- ups, and therefore, many women may only be made aware of their HIV status upon attending an antenatal clinic (Parsons et al. 2012). Receiving devastating in- formation about a chronic illness during pregnancy can be overwhelming for a woman as it evokes con- cerns about fidelity in the relationship and her ability to care for her unborn child. This may lead to ongoing difficulties with bonding between mother and child and can lead to postnatal depression (Parsons et al. 2012).

Multiple interactive factors have been found to result in the development of postnatal depression. It remains unclear as to how having a child with Down syndrome and being HIV positive combine to increase this risk.

Limitations of the study

A larger sample size would have allowed for the possible identification of associations between more variables and a positive depression screening score. Having a control group would have allowed us to determine if mothers of children diagnosed with Down syndrome in state health care have increased rates of depression.

A sampling bias may have resulted in the recruitment of mothers with high-functioning depressive symptoms as the utilisation of clinic services has been shown to be decreased in mothers who suffer from depression as these mothers may be less responsive to their child’s needs and less proactive in preventative medical management (Minkovitz et al. 2005; Balbierz et al. 2015). Many severely depressed mothers may not have been identified due to reduced tendency to attend regular clinic appointments. Therefore, the percentage of

mothers who screen positive for depression may be higher than 26.7%.

Although the EPDS scale is one of the most widely recognised and implemented postnatal depression screening measures, it has been reported to more reliably detect postnatal depression in women with symptoms of anhedonia and anxious affect instead of psychomotor retardation symptoms (Guedeney et al. 2000). Use of a universal cut-off score has been cautioned against, as differences in cultures and languages may lead to great variability in the sensitivity and specificity of the EPDS scale score (Kozinszky and Dudas 2015). It is possible that these limitations may have resulted in some false negative scores.

Conclusion

Symptoms of depression were identified in 8 mothers (26.7%) of children with Down syndrome whilst 10 mothers (33.3%) were referred to psychology services for further assessment. This result indicates that mothers with children diagnosed with Down syndrome may be vulnerable to developing depression. Although it has been found that there is a high rate of postnatal depression in many communities in South Africa, this does not make our finding less important or worthy of attention. Health care professionals should be aware that mothers of children with Down syndrome are at risk of develop- ing depression and should therefore routinely screen and refer them for appropriate treatment and support.

A significant association was found between a positive HIV status and symptoms of depression, in mothers with children diagnosed with Down syndrome (P = 0.01). The cumulative effect of being HIV positive and having a child with Down syndrome on the risk of developing depression still needs to be explored.

Future studies with a larger number of participants could provide more accurate information with regards to the association of various sociodemographic variables and depression. A longitudinal study, including a control group, in which depressive symptoms are evaluated at birth, 6 months and 1 year post birth, would be useful to assess the increase or decrease of the severity of depressive symptoms in mothers. Research indicates the need for further investigations assessing the causes and exacerbating

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factors resulting in postnatal depression in mothers with a child diagnosed with Down syndrome.

Sources of Funding

The financial assistance of the National Research Foundation (NRF) towards this research is hereby acknowledged (Grant Reference: SFH160629175157). Opinions expressed, and conclusions arrived at, are those of the author and are not necessarily to be attributed to the NRF. We also wish to acknowledge the Health Science Research Office Biostatistics Department of The University of the Witwatersrand for offering guidance with the statistical analysis.

Conflict of Interest

The authors declare that there is no conflict of interest.

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Accepted 23 August 2018

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