Investigating the effect of psychological empowerment on using coping strategies, stress, anxiety and depression in adolescents with haemophilia: a randomized controlled trial

ABSTRACT

This study examined the effect of psychological empowerment on using coping strategies, stress, anxiety and depression in haemophilic adolescents. A total of 60 adolescents with haemophilia aged 13–19 years old were recruited in a randomized clinical trial and randomly divided into two groups of intervention and control. The instruments included Depression, Anxiety and Stress Scale-21 (DASS-21) and Lazarus and Folkman’s Coping Strategies Questionnaire (LFCSQ). The intervention group underwent psychological empowerment. The control group received routine intervention. Data were analysed with Chi-square test and repeated measures analysis of variance. The findings showed a decrease in the mean scores of anxiety, stress and depression (p < .001), and an increase usage of the problem-focused coping strategies (p = .007), in the intervention group after the intervention, that were significantly different with those of the control group. Psychological empowerment could be effective in improving the use of coping strategies and decreasing stress, anxiety and depression in adolescents with haemophilia.

KEYWORDS:

• Psychological empowerment
• adolescents
• coping strategies
• depression
• haemophilia

Introduction

Coagulation disorders have affected less than 1% of the world population and its most common form is haemophilic hereditary coagulation disorder (Iorio et al., 2018). Hemophilia is a chronic disease and a form of disorder in blood clotting which accompanies a person during his entire life (Cheever & Hinkle, 2013). Haemophilia A can be almost found worldwide, but haemophilia B is less common than haemophilia A. Both are X-linked diseases and usually diagnosed after bleeding presentation into joints and muscles (Castaman & Matino, 2019). Changes in the physical conditions and the appearance of physical symptoms have direct and considerable impacts on all aspects of a person’s quality of life. Physical concerns such as poorly controlled symptoms and complaints, high anxiety and depression affect a person’s mental health (Herrera et al., 2021).

Most studies believe that adolescence has a remarkable distinction from other growth stages and this distinction is not because adolescents face fundamental changes in all the dimensions of their life but is mostly because these changes happen when they are not properly ready for them. During adolescence stage, changes in the social structure and physical growth result in an imbalance between physiological and social maturities which can be the source of socially unacceptable behaviours and morbid psycho-emotional conditions (Shek et al., 2021; Hashmi & Fayyaz, 2022; National Academies of Sciences, Engineering, and Medicine; Health and Medicine; Division; Division of Behavioral and Social Sciences and Education; Board on Children, Youth, and Families; Committee on the Neurobiological and Socio-behavioral Science of Adolescent Development and Its Applications, 2019. In most haemophilic patients, the adolescence stage is really difficult. During the stage of growth and development in the adolescence period, haemophilic patients are emotionally and physically vulnerable due to their sensitive personality as well as their dependence on others for special care, which decreases their self-esteem and causes symptoms of anxiety and depression. This causes many problems for the patients, their families and society. In order to prevent the physical, mental and social risks of this disorder, it is really important that these patients pay much more attention to self-care (Coppola et al., 2011).

From the perspective of the World Health Organization (WHO), empowerment, as the core of health promotion, is a process through which individuals gain more control on their decisions and actions. They find themselves as being able to satisfy their own routine needs. Empowerment can be effectively performed via education, but the participation of patients plays a vital role in their empowerment for accepting and coping with the nature of their disorder (Heidari et al., 2007). Most previous studies on empowerment found positive findings for patients with diabetes (Heidari et al., 2007; Meetoo & Gopaul, 2005; Sugiyama et al., 2015). Within the limits of our knowledge, there was no previous study about the impact of psychological empowerment on the psychological outcomes in haemophilic adolescents, and our study is the first one in this area. Patient empowerment is a five-step process. The first two steps define the disorder and clear the belief, thought and feelings that may be the factors of support or prevention for their self-care efforts. The third step realizes long-term goals for patients, and the fourth step helps them make appropriate behavioural changes in themselves. This step helps patients achieve their long-term goals, and the final step is the evaluation of patients’ efforts and determining what they have learned in the empowerment process (Small et al., 2013).

Haemophilias are chronic diseases with no cure. Bleeding occurs frequently into the joints or muscles and is very painful. In the long term, these bleedings can cause arthropathy and other deformities, particularly large joints (knees, ankles and elbows). Damage to the muscles can lead to atrophy and finally might cause immobility of the individual and dependency to a wheelchair and loss of function. Frequent hospitalization affects their education and employment and finally could represent with a broad spectrum of mental disorders. Considering all these actual or potential problem and in respect of we barely could do much about their physical problems, we decided to intervene psychological empowerment through teach them how to cope with the problems.

The aim of patient empowerment is to create a sort of cooperation between a nurse and a patient through creating a sense of responsibility in the patient (Heisler et al., 2005). The purpose of our study was to examine the effect of psychological empowerment on using coping strategies, stress, anxiety and depression in adolescents with haemophilia. The hypothesis for this study was that unhealthy coping strategies, stress, anxiety and depression in haemophilic adolescents going through a psychological empowerment program decrease compared to haemophilic adolescents who do not receive the intervention.

Materials and methods

Study design

This study was a double-blind randomized control trial with parallel design performed on 60 adolescents with haemophilia A or B aged 13–19 years old. They were randomly selected using a systematic random sampling method. Initially, we explained the goals and the process to the adolescents, and their parents and their written consents for participation in the research were obtained. We explained that all their information would be confidential and would be used for scientific purposes to improve the quality of life of adolescents with haemophilia and their families by improving the knowledge and performance about it. The study was conducted according to the Good Clinical Practice Guidelines, in accordance with the Declaration of Helsinki, 1975, and approved by the SUMS (Ethics Code: CT-9374-7364). In the next step, they completed demographic questionnaire, and each qualified individual was given a code. Then, they were randomly assigned to either the intervention or control group, using the random number table. Participants and outcome assessor, but not the interferer, were blind to intervention condition. The intervention group participated in 8-week psychological empowerment besides routine self-care intervention. The control group received just routine self-care intervention offered by hospital, consisting brief explanation about some physical and psychological ‘warning signs’and ‘what to do’ such as joint bleeding and depression. All the interventions were given by a psychiatric nurse, who had 7 years of experience in working with chronically ill adolescents. She was invited from the outside of the hospital. So, she was blind to the allocation of the participants.

Participants

The participants were haemophilic adolescents who had profiles in the Dastgheib Hospital and visited there to control their disorder between December 2014 and November 2015. They were referred to this professional centre from all southern cities of the country. Most of the participants had moderate to severe deformities in joints and muscles. None of them had history of previous psychological treatment so far. Inclusion criteria were as follows: (i) the age range of 13–19 years old, (ii) no obvious physical or mental disability, which is associated with empowerment, (iii) interest for participating in research and (iv) lack of chronic diseases other than haemophilia, which is associated with empowerment. Exclusion criteria were as follows: (i) the absence of more than one intervention sessions and (ii) leaving the intervention.

The sample size to obtain sufficient statistical power (80%) and a significance of p < .05 was 60, as suggested by prior studies (Breakey et al., 2014; Heidari et al., 2007) (Figure 1).

Figure 1. The participant CONSORT flow diagram.

Intervention

We adopted the approach of García-Dasí et al. (2016) about psychological support in adolescents with haemophilia (García-Dasí et al., 2016). According this approach, we focused on four areas: communication issues, experience, decision-making and adherence. One week was devoted to each area. A brief explanations of the emphasized areas are brought to Table 1. We considered a total of 16 practice sessions for the intervention, which were held in the form of biweekly 90-minute sessions. Each psychological empowerment session included two parts. First part consisted of brief education about self-care issues, various conflicts resulted in communication with others, psychological complications such as negative emotions, anxiety, stress, depression and their symptoms and management. Second part included various types of coping strategies such as problem-focused and emotion-focused. The focus was on understanding and internalizing positive coping strategies. We tried that the adolescents realize how those work and how we use those in everyday life, through role-playing, rehearsal and empty chair. That would be an opportunity for the adolescents to express their positive and negative emotions in oneself and its effects on the other. At the end of every session, educational materials besides some tasks related to the use of positive coping strategies were given to the participants to review and perform in their free time at home along with others.

Table 1. The areas of psychological empowerment intervention in adolescents with haemophilia.

Area	Adolescent
Communication issues	Adolescent ↔ parents
	Adolescent ↔ healthcare team
	Adolescent ↔ peers and friends
	Positive coping with interpersonal conflict
Experience	Explanation of personal and social identity
	Taking responsibility for self-care
	Awareness of problems: limitations, risks, consequences
	Positive coping with the conditions and the disease
Decision-making	Training on the disease management
	Personal autonomy, independence, acceptance of conflict
	Focus more on the problem but on the emotion
Adherence	Active participation in self-care, healthy lifestyle
	Practicing assertiveness
	Active participation in verbalizing the emotions
	Expression of the feelings and emotions in a healthy way

Measurement tool

The level of depression, anxiety and stress was evaluated based on DASS-21. It was designed in 1995 by Lovibond and has 21 questions in the three areas of depression, anxiety and stress, based on a 4-point Likert scale, and each examinee responds to each question as 0 = none, 1 = little, average = 2 and much = 3. Total scores of 0–4 show being natural, 5–11 show a moderate disorder and 12–21 show an intense disorder. These scores can be used to diagnose the mental problems of individuals in all the three areas of depression, anxiety and stress (Lovibond & Lovibond, 1995). Its reliability has been verified in Iran (Cronbach’s alpha obtained for the subscales of depression, anxiety and stress were 0.62, 0.74 and 0.73, respectively) (Sepehryan & Hossieni, 2011).

Use of coping strategies was evaluated based on LFCSQ that includes 66 terms which investigates eight stress coping strategies. These eightfold strategies are divided into the two categories of emotion-focused and problem-focused which, based on a grading scale, range from 0 to 3. This questionnaire measures the coping strategies as follows: I use it a lot (=3), I often use it (=2), I seldom use it (=1) and I never used it (=0) (Saatchi & Askarian, 2010). The reliability and validity of this questionnaire were confirmed by Padyab and Ghazinoor in Iran and the consistency coefficient of its intra-items was reported as 0.8 (Padyab & Ghazinour, 2009). DASS-21 and LFCSQ were assessed at baseline, immediately after intervention and one month later, done by an independent outcome assessor, who was uninformed of patients’ assignment.

Statistical analysis

The demographic data were analysed using descriptive statistics. Chi-square and independent sample t-tests were performed to test the differences between the experimental and control groups. The Kolmogorov–Smirnov test was used to evaluate normal distribution of the data. Paired t-tests and independent t-tests were used to examine the differences in the mean scores of coping strategies, stress, anxiety and depression. The participants were evaluated for frequent time points (baseline, immediately after and one month after intervention). So, we conducted Friedman test to compare mean ranks of stress, anxiety and depression in the three different time points, and also a repeated measures ANOVA to evaluate whether there was a significant effect of intervention, time or interaction between intervention and time on using different coping strategies. All data were analysed by using SPSS 16 software. In all analyses, a P value of less than 0.05 was considered to be statistically significant.

Results

Approximately, 95% of the adolescents were suffering from haemophilia type A and 5% were with haemophilia type B. The mean age of the adolescents was 16.56 (SD = 2.01) years, and their age range was from 13 to 19 years. All the participants were taking prophylactic factors in the mean duration of 99.6 (SD = 38.9) months (range 0.7–197 months). The monthly family income of majority of the participants (82%) was between 60.000.000 and 10.000.000 Rls (150–250 USD). Only 18% had family income more than 10.000.000 Rls. The severity measure of the disease was severe 46%, moderate 31.1% and mild 22.9%. According to their medical records, 19% of the samples were positive for HCV and the rate for both the HCV and HBV was 2.1%. For the rest of the participants, we had no information; therefore, they were categorized as unknown. There was no statistically difference in respect of demographic characteristics between the two groups (p > 0.05) (Table 2).

Table 2. Comparison of demographic characteristics in the intervention and control groups (n = 60).

Characteristic	Intervention group n (%) or M ± SD	Control group n (%) or M ± SD	χ2 (t)	p
Age	16.57 ± 1.96	16.57 ± 2.09	(<.001)	1.000
Adolescent’s educational status			2.09	0.35
Primary	0(0)	2(6.7)
Secondary	7(23.3)	7(23.3)
High school	23(76.6)	21(70)
Parent’s educational status			2.58	0.63
Illiterate	4(13.3)	3(10)
High school	19(21.1)	23(25.5)
Academic	7(23.3)	4(13.3)
Father’s job			1.27	0.73
Unemployed	3(10)	4(13.3)
Employee	5(13.6)	5(16.7)
Freelance	22(73.3)	21(70)

Anxiety, stress and depression scores were statistically the same at the baseline. The scores immediately after the intervention (post intervention) and one month after the intervention (follow-up) significantly decreased compared to baseline in the intervention group (p < 0.001) (Table 3). Friedman test revealed that the comparison of the average rankings of stress, anxiety and depression in intervention group was significant in the three different time point measurements (p < .001).

Table 3. Comparing the mean scores of anxiety, stress and depression over time by the intervention (n = 30) and control groups (n = 30).

Variables	Baseline mean (SD)	Post intervention mean (SD)	Follow up mean (SD)	χ2*	p
Stress
Intervention	5.54 ± 2.96	0.50 ± 1.50	0.43 ± 1.23	32.66	<.001
Control	4.95 ± 2.90	0.84 ± 1.90	0.84 ± 1.30
Total	5.36 ± 2.89	0.64 ± 1.8***	0.61 ± 1.28**
Anxiety
Intervention	0.88 ± 2.03	0.68 ± 1.50	0.46 ± 1.30	33.41	<.001
Control	0.82 ± 2.29	0.82 ± 1.93	0.82 ± 1.54
Total	0.85 ± 2.14	0.73 ± 1.69***	0.62 ± 1.41***
Depression
Intervention	0.85 ± 1.96	0.68 ± 1.46	0.40 ± 1.20	32.66	<.001
Control	1.06 ± 1.90	1.13 ± 1.71	1.06 ± 1.84
Total	0.95 ± 1.94	0.88 ± 1.54**	0.71 ± 1.49**

*χ2 score is from Friedman test.

**p <.01; ***p <.001.

There was no statistically difference in the use of coping strategies between the two groups at the baseline (p > .05). Repeated measures ANOVA showed that the mean score of the problem-focused coping strategy in the intervention group at the baseline and post intervention was significantly different (p < .001) (Table 4).

Table 4. Comparing the mean scores of using coping strategies over time by the intervention (n = 30) and control groups (n = 30).

Variables	Baseline mean (SD)		Post intervention mean (SD)		Follow up mean (SD)		F*			p
	Intervention	Control	Intervention	Control	Intervention	Control	Time	Group	Time / group	Time	Group	Time / group
Problem-focused	19.26 ± 4.69	24.66 ± 4.55	28.46 ± 6.82	24.20 ± 4.48	37.43 ± 8.16	25.10 ± 4.30	156.76	7.76	142.71	<.001	.007	<.001
Emotion-focused	58.20 ± 15.10	59.03 ± 13.11	49.70 ± 11.93	58.20 ± 13.78	43.10 ± 10.27	60.90 ± 12.57	60.41	7.75	94.31	<.001	.007	<.001

*F score is from repeated measures ANOVA.

We found significant difference between the two groups at post intervention (p = .006) and follow-up (p < .001), and the time period was also significant (p < .001). In addition, there was a significant difference in interaction between time and intervention (p < .001). In this case, ANOVA was done for each group separately, and the results showed that the trend of changes due to the use of the problem-focused coping strategy was significantly meaningful in intervention group but not in control group. Figure 2 illustrates the patterns of change in respect of using problem-focused coping strategy in the two groups over time. As we can see in Figure 2, the use of problem-focused coping strategy in intervention group statistically increased at post intervention and follow-up.

Figure 2. Problem-focused coping strategy scores (means) over time in intervention and control groups.

Note: BI = before the intervention; IAI = immediately after the intervention; OAI = one month after the intervention

Repeated measures ANOVA also revealed that the mean score of the emotion-focused coping strategy significantly reduced over time in the intervention group but remained the same in the control group at post intervention and follow-up (Figure 3). The time course and interaction between time and intervention were also significant (p < .001) (Table 4). ANOVA for each group separately revealed that the trend of changes due to the use of the emotion-focused coping strategy was significant only in intervention group.

Figure 3. Emotion-focused coping strategy scores (means) over time in intervention and control groups.

Note: BI = before the intervention; IAI = immediately after the intervention; OAI = one month after the intervention

Discussion

This model must increase patients’ self-care knowledge, self-awareness and individual autonomy to enable them to accept the responsibility of caring for their own disease (Hämel et al., 2022). The results of a study showed that empowerment can increase patients’ efforts at gaining social support, increase their motivation and decision-making power and also help them properly manage stresses accompanying diabetes, which are in agreement with the results of the present study (Gómez-Velasco et al., 2019).

Iranian haemophilic adolescents face many physical and psychological problems (Rambod et al., 2018; Valizadeh et al., 2015). Depression disorder is more common in patients with physical illness. People with physical illness and depression have a lower performance level and higher mortality and morbidity compared to those without depression (Kang et al., 2015). Haemophilic adolescents always worry about bleeding and the continuing deterioration of their health. Deformation of joints leads to changes in the appearance of the person’s body, which is another concern for haemophilic adolescents. Each of these factors alone or collectively can cause problems for different aspects of a person’s life. Therefore, the person will be prone to the impairment of quality of life and other psychological factors such as anxiety and depression (Coppola et al., 2011). The results of this study showed that the level of anxiety, stress and depression in the intervention group decreased significantly after the intervention, demonstrating the effectiveness of the intervention, while in the control group, no tangible change was seen in the three variables. The results of a study revealed that muscle relaxation, the technique used during psychological empowerment, alleviated anxiety and depression symptoms in women with breast cancer (Fang et al., 2022).

Adolescents with disabilities are more prone to negative feeling like loneliness compared to healthy peers because they often experience multiple obstacles to social involvement (Santino et al., 2021). Familiarity with adaptive coping mechanisms could help the adolescents to face the problem and try to solve the problem with the least of fear or anxiety (Moos, 2002). Some studies have shown that people who arm themselves with a series of coping skills and abilities are more successful when dealing with problems because the use of effective coping responses helps them overcome their physical and mental problems, interpersonal and social relationships and personal conflicts; therefore, these individuals have a higher quality of life and mental health (Ding et al., 2021; Thomas & Zolkoski, 2020). The higher use of emotion-focused coping response is related to physical harm, depression and social dysfunction, while problem-focused coping strategy affects a person’s individual interactions and social performance (Ding et al., 2021). Grey et al. (1999) identified the education of coping skills to children and adolescents with diabetes as being effective coping strategy (Grey et al., 1999). It seems that the use of an educational program increases the use of problem-focused coping strategies and decreases emotion-focused strategies in pregnant adolescents (Hashemi et al., 2015), which is in alignment with our study. Besides, some results showed that coping strategies affect the relationship between the perception of illness and quality of life in patients with type 1 diabetes (Knowles et al., 2020).

In our study, all participants completed the research course successfully. They were educated and trained to be able to overcome their emotional conflicts and be more assertive in communication with others alongside with better self-care ability. Compliance was good with no obvious side effects, and the findings supported the positive impacts of psychological empowerment program on decrease in psychological vulnerabilities of haemophilic adolescents. The current study empirically demonstrated that psychological empowerment program could improve haemophiliacs’ coping strategies as well as reduce their stress, anxiety and depression. It seems that using of multiple positive coping behaviours besides avoiding negative coping behaviours may have a larger significant difference than solely the use of positive ones (Riazi et al., 2023), and this was exactly what we have done during the intervention. We focused simultaneously on increasing the use of positive coping strategies and decreasing the use of negative coping strategies.

One limitation of the present study is that it cannot be readily generalized due to the relatively small sample size. Also, all haemophiliacs in our study were male, so the results could not be generalized to females. Furthermore, some personality characteristics can affect stress, anxiety and depression in people who were not considered. Previous psychiatric histories of the patients may also affect the results.

Conclusion

Our study tried to examine the impacts of psychological empowerment on stress, anxiety, depression and coping strategies in haemophilic adolescents for the first time in Iran. The results demonstrated that psychological empowerment decreases anxiety, stress and depression and increases the use of adaptive coping strategies in adolescents with haemophilia. This shows the importance of patients’ training and participation in self-care and problem solving ability, and increased awareness about coping behaviours for haemophilic patients. It can be concluded that psychological empowerment of adolescents with haemophilia via coping skills education and training might have a positive effect on decreasing physical, mental and social problems. Therefore, psychological empowerment may be considered an effective and viable approach to relief psychosocial problems in haemophilic adolescents. More study is needed to further validate our findings.

Acknowledgments

This paper is taken from the findings of Azam Karami’s dissertation approved by the Research Deputy of Shiraz University of Medical Sciences with the clinical trial registration number 23 201502079267N4, which was operationalized with financial support from the university (Grant No. 93-7364). This study was approved by the Ethics Committee of Shiraz University of Medical Sciences in Iran. This research was registered in IRCT (number: 201502079267N4). We express sincere appreciation to those who helped us with this study, including the director and staff members of the Dastgheib hospital and the study participants, whose commitment was admirable.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Research Deputy of Shiraz University of Medical Sciences [93-7364].

Notes on contributors

Giti Setoodeh

Giti Setoodeh is an Assistant Professor of Nursing, Director of Mental Health and Psychiatric Nursing Department at Shiraz University of Medical Sciences.

Azam Karami

Azam Karami is a Masters of Nursing at Shiraz University of Medical Sciences.

Mitra Edraki

Mitra Edraki is an Educator of Pediatric Nursing, Faculty member of Shiraz University of Medical Sciences.

Narjes Nick

Narjes Nick is a Ph.D. in Nursing, Instructor of Public Health Nursing, Shiraz University of Medical Sciences.