The psychological burden of caring for children with intellectual disabilities as experienced by care workers

doi:10.21203/rs.3.rs-4827478/v1

Download PDF

Research Article

The psychological burden of caring for children with intellectual disabilities as experienced by care workers

https://doi.org/10.21203/rs.3.rs-4827478/v1

This work is licensed under a CC BY 4.0 License

You are reading this latest preprint version

Background: Intellectual disability limits the child’s ability to perform activities of daily living independently. The disability is a neurodevelopmental condition that affects cognitive functioning such as learning, problem-solving, and judgement, plus adaptive functioning such as communication and social participation. At home, children depend on primary caregivers to assist them in fulfilling activities of daily living. When admitted to hospitals, such responsibilities lie with care workers. Caring for children with intellectual disabilities might put the psychological being of care workers at risk. Little is known about the psychological burden of caring for children with intellectual disabilities. The study explored and described the psychological burden of caring for children with intellectual disabilities as experienced by care workers.

Methods: A qualitative-exploratory-descriptive and contextual research design was used. The participants were care workers at hospitals admitting children with intellectual disabilities in Gauteng. Semi-structured interviews were conducted with 20 care workers. Data were audio-recorded and analysed using content analysis and ATLAS ti.

Results: The following two psychological burdens emerged; namely, stress and emotional trauma. The long-term strategies to manage stress and emotional trauma were further recommended to improve the working environment of care workers.

Conclusion:The study found that care workers of children with intellectual disabilities experience psychological burdens associated with caring, as evidenced by stress and emotional trauma experienced by care workers. Long-term strategies such as problem-focused coping approaches and adaptive coping strategies were recommended. If applied, recommendations will improve the health conditions of care workers. Findings will further assist future researchers who are aiming to develop programmes of support for care workers.

Care workers

Caring

Children

Experience

Intellectual disabilities

Psychological burden

Intellectual disabilities in children are complex neurological conditions that limit the child’s ability to learn at an expected level in decision-making, problem-solving, and function in daily life. It is a neurodevelopmental disorder that manifests before the age of 18 years [21]. Intellectual disability refers to significantly sub-average intellectual and adaptive functioning based on clinical assessment and as measured by individually administered, appropriately normed, standardised, and validated tests of intellectual functioning and adaptive behaviour. It can onset during the developmental period from infancy through adolescence [39]. The United Nations Children's Fund, originally known as the United Nations International Children's Emergency Fund (UNICEF) estimates that 28.9 million children aged 0–4 years and 207,4 million children aged 5–27 years have moderate-to-severe disabilities globally, whereas Sub-Saharah Africa and South Asia account for more than half of children with disabilities [27].

Due to the severity of disabilities, primary caregivers of the children face difficulties in providing normal expected functions at home. Studies have identified several difficulties related to caring for children with intellectual disabilities, such as embarrassment, financial burdens, stress, lack of outside support, poor communication, negative societal attitudes, limited resources, and limited caregiving skills [25, 28, 30]. The difficulties encountered by primary caregivers often compel them to send their children to healthcare facilities for admissions where care workers take over the role of caring. Care workers are people employed to assist patients with activities of daily living. Care work is the lowest-level job in the care sector that requires no qualifications. A person can be employed with or without training [11]. The duties related to caring include feeding, bathing, dressing, grooming, toileting, changing nappies, changing positions, providing medications, providing passive exercises to children, and providing stimulations [20]. It is a societal expectation that care workers should provide care to children without struggle or challenges because society believes that care workers are well-trained to provide such care. Studies have shown that care workers often experience social, psychological, and financial burdens related to caring [13, 17]. The financial burden is related to poverty and the social burden is related to the inability of society to accept intellectual disability. However, the psychological burden is not related because it has not yet been explored, hence the study. This study therefore seeks to explore and describe the psychological burden of caring for children with intellectual disabilities as experienced by care workers.

Research design

This phenomenological study used a qualitative-exploratory-descriptive and contextual research design to explore and describe the psychological burden of caring for children with intellectual disabilities as experienced by care workers. The method assisted the researcher in obtaining the information required directly from the people who lived the experiences [7].

Study setting

Three metropolitan municipalities in Gauteng province, South Africa, namely, Johannesburg, Tshwane, and Ekurhuleni were chosen due to their highest population and highest percentage of children with intellectual disabilities, about 8.3% [35] and the scarcity of resources. Six mental health care institutions admitting children with intellectual disabilities were selected, therefore deemed as accessible population.

Participants

The participants were care workers from Gauteng province, who work in hospitals admitting children with intellectual disabilities. To obtain rich information, the participants were expected to have an experience of 2 years and above in caring for children with intellectual disabilities. A purposive, non-probability sampling approach was used to select participants. 20 care workers agreed to voluntarily participate. The participants were males and females, with age ranges of between 24 and 45 years and experience of between 6 years and 28 years of caring.

Recruitment process

The researcher visited the institutions and used the managers to obtain access to speak to the care workers. This is where the study purpose, benefits, and risks were explained, and voluntary participation was requested. Those who wanted to participate contacted the researcher a few days later and a second meeting was arranged. On the second visit, the consent forms were signed.

Data collection

Semi-structured individual interviews were used to collect data. Two open-ended questions were asked of participants. All interviews were audio-recorded, with the consent of the participants.

Interviews were conducted in the quiet offices of the managers in the wards. All participants were asked the following two open-ended questions: How is it for you to take care of a child with intellectual disabilities? How does taking care of a child with intellectual disabilities affect you? The participants were allowed to share their experiences with minimal interruptions. Data were collected until data saturation, that is until no new information emerged. Data saturation occurred in participant number 12; however, all 20 participants were interviewed, just to confirm if indeed data saturation occurred. No new information was obtained from participant number 13.

Data analysis

Data were analysed using content analysis and ATLAS ti. The technique is used to determine the presence of certain words, themes, or concepts within the data to explain a phenomenon [7]. Creswell’s six steps of data analysis were followed. Firstly, the audio tape recorder was listened to, and data were transcribed. Each transcript was done separately. Transcripts were read and reread. Information on the transcripts was fed into the computer by clicking “new project” and adding transcripts as documents as files of a folder “new project”. The activity was done to enable the computer to assist in categorising data and creating and assigning codes using ATLAS ti software. The open coding function was selected in the codes main menu and new codes and categories appeared on the right-hand side after clicking. Codes were reviewed and revised to ensure that identified concepts are of importance to the theory of the research project. Codes were finally presented into themes and sub-themes. Themes and sub-themes were presented cohesively.

Two psychological themes and their sub-themes emerged and are summarised and explained.

Table 1

Themes and sub-themes
THEMES	SUB-THEMES
Stress	Work Conflict
	Difficulty in sleeping
	Social withdrawal
	Low self-esteem
Emotional trauma	Feeling of sadness
	Feeling overwhelmed
	Anger

Theme 1: Stress

Stress is a feeling of emotional tension, a body’s response to pressure [22]. Stress affects positivity for human survival and therefore affects an individual's whole being in different ways [41]. Stress affects health directly through autonomic and neuroendocrine responses and further affects the body indirectly through changes in health behaviour [26]. Sources of stress and stressors in the workplace are categorised into three groups; namely, environmental, professional, and social factors. Environmental stressors are all working conditions that negatively affect the well-being of workers. Professional factors include the scope of duties and requirements, workload, and the extent of control over assigned tasks. Social factors are working conditions that negatively affect the person due to contact with others such as superiors, colleagues, and individuals outside the organisation [6]. In the nursing profession, stress can hurt the quality of life related to nurses, overshadow the performance of care and reduce good behaviours and conduct [3]. Evidence of stress for participants of the study has been identified through four sub-themes; namely, work conflict, difficulty in sleeping, social withdrawal, and low self-esteem.

Work conflict

Conflict

at work involves serious disagreements and arguments between two people at work and is often related to pressures at work. Conflicts relating to tasks and those relating to interpersonal relationships intertwine and influence each other, triggering escalating strong emotionally aggressive reactions in which the reasons for the dispute are often lost sight of, while actions aimed at destroying the self-esteem and social identity of the person are exacerbated [9]. The main theme for this sub-theme shows that the participants of the study are stressed. In this case, the stress manifests itself through engagement in work conflicts as displayed by regular arguments among themselves:

“We fight a lot because sometimes one sees another colleague as not working because we are overwhelmed. There is a lot of work, and the staff is not enough” P-C. “I think we take our frustration on each other because we always argue about silly and little things” P-F. “This job is demanding. It is not easy to take of these children. We are stressed and that is why we take our frustration on each other. The working environment is not nice at all” P-A.

Difficulty in sleeping

Insomnia or difficulty in sleeping means a person stays awake at night or wakes up in the early morning and is unable to go back to sleep for at least 3 nights per week over at least 3 months. The cause is often stress [19]. Life stress, including work stress, contributes to an individual difference in the level of brain function and personality thus resulting in difficulty in sleeping [31]. It is for this reason that irregular sleep is linked to poor mental health. A study further highlighted that insomnia is associated with increased health and economic burdens. The participants cited difficulty in sleeping:

“I cannot sleep at night. I think about these children all the time. It is so sad to see a child bound to bed, not being able to play like any other normal child” P-K. “The first month of working in this ward was a difficult one, I could not sleep when I think of these children. My body now has adjusted to not sleeping. I come to work very tired because I was not sleeping at night” P-N. “I had to ask my doctor to prescribe a sleeping tablet for me because I could not sleep. All that my mind was thinking about was these children, their conditions, and asking myself why God made them to be like this” P-P.

The citations are proof that care workers were stressed, and the manifestation was difficulty in sleeping.

Social withdrawal

Social withdrawal is when a person avoids opportunities to interact with others and can be associated with shame, low self-esteem, and fear of rejection. The signs include avoiding social activities that one previously enjoyed, wanting to be alone, preferring to stay at home, and avoiding interacting with colleagues [2]. Social isolation may be considered a risk factor for health and may contribute to the development of mental health disease. Furthermore, social withdrawal has been shown to imply a decline in cognition and mood, worsening immune function, sleep disturbance, and increased body weight. Individuals who are withdrawn or isolated are more likely to develop depression symptoms [34]. The participants of the study displayed signs of social withdrawal:

“I do not look forward to going to work, I wish I had another source of income so that I can just stay at home” P-C. “I used to interact a lot with my colleagues, but now I don’t feel like talking to them. They annoy me when they speak to me” P-H. “I always lock myself in my room at home. My family would want to spend quality time with me, but I always come up with excuses such as I am tired, it is hectic at work. This is just to avoid them” P-M.

All of these are confirmations of social withdrawal, which can later complicate an individual’s health.

Low self-esteem

Low self-esteem is when someone lacks confidence about who they are and what they can do. They often feel incompetent, unloved, or inadequate and are extremely critical of themselves. They downplay or ignore their positive qualities and judge themselves as stupid, ugly, or unlovable. In addition, low self-esteem has been associated with several psychiatric conditions, particularly anxiety and depression [32]. The participants in this study displayed signs of low self-esteem:

“I feel useless because I am unable to perform a simple skill such as bathing the child, yet I can bath my children at home” P-I. “I do not think I belong to the health care profession. I mean, if I cannot even feed the child, why do I have to call myself a healthcare professional?” P-L. “Because we were not even trained to provide specialised care for the children, I am not confident to provide care for the children” P-T.

Theme 2: Emotional trauma

Emotional trauma is a natural reaction to certain types of disturbing or jarring events and can manifest itself with symptoms such as fear, helplessness, change in concentration, denial, anger, depression, anxiety, mood swings, guilt, blame, and social withdrawal [14]. Signs of emotional trauma are anxiety, panic attacks, fear, anger, irritability, obsessions and compulsion, shock and disbelief, emotional numbing, detachment, and sadness [40]. Three sub-themes emerged: feelings of sadness, feeling overwhelmed, and anger. If not urgently managed, a specific brain region, including the amygdala and prefrontal cortex undergo a physiological change that leads to memory impairments, attention deficits, and emotional disturbance. A person can have difficulty rapidly adapting to a new environment and maintaining cognitive coherence, thus a cognitive processing delay [37]. The participants were emotionally traumatised as evidenced by the sub-themes below.

Feeling of sadness

The signs of emotional trauma as explained above include a feeling of sadness. Sadness is a natural emotion that may be related to stress, lack of sleep, or other factors [37]. The participants felt sad:

“Taking care of children with intellectual disability is traumatic. It breaks your heart seeing them in beds, helpless, not being able to play, speak, or even go to school like other children” P-D. “Seeing the children daily is traumatic. These are just innocent souls, and one asks herself how come God allowed them to be like this” P-G.

The quotes are indications of emotional trauma experienced by participants as evident above.

Feeling overwhelmed

Overwhelming is an emotion that happens when something causes an intense reaction in you and can manifest in symptoms such as the inability to feel happy, insomnia, constant strain, depression, unable to concentrate, unable to enjoy normal activities, loss of confidence, unable to overcome difficulties, unable to face up to problems, unable to decide and a feeling of worthlessness. The negative feelings associated with being overwhelmed are job burnout, job dissatisfaction, and ill feelings toward the employed [33]. The participants of the study expressed the overwhelming emotion:

“We are all tired. There is a staff shortage. We cannot even be allowed to take our leave days due to shortage” P-D. “There are many children with less staff. We are only eight, and the children are forty. This means that each one of us takes care of no less than three children, and imagine, you do everything for a child because these children are fully dependant on staff with activities of daily living” P-K. “This job is overwhelming because it is hectic. Children are heavy, and there are no equipment that assist us, such as lifting machines”. “Taking care of the children daily is depressing. I wish some counsellors provide counselling to us after caring because the truth is, it is not easy for us” P-N.

Anger

Anger is an emotional response to a real or imagined threat or provocation and can be triggered by many things such as stress, family problems, financial issues, and underlying disorders such as alcoholism or depression. If not well managed, anger can have numerous negative consequences on the body. It can increase the risk of heart disease, it can disrupt digestion, can hinder mental health, and can cause insomnia [18]. The participants in the study displayed anger:

“I am angry at God. Why did He allow children to be like this?” P-G. “One of the children died a few hours after I fed her. I blame myself because I am not sure if I followed the correct way of feeding her. Why must she die immediately after I fed her? I am so angry at myself” P-P. “I am angry at management for lack of support for care workers. They treat us like we have no value in the health care profession because we do not have degrees that others have” P-M.

The findings of the study outline the psychological burdens of caring for children with intellectual disabilities as experienced by care workers. The theme of stress outlines the negative impact of caring. Stress denotes a feeling of emotional tension [22]. In this study, stress manifested itself with conflicts, difficulty sleeping, social withdrawal, and low self-esteem. Stress is the lack of fit between the environment and the person, the notion that things are getting too much and out of balance [38]. People are stressed out because of specific events or chronic pressures that place demands on them or threaten their well-being [16]. Additional stressor exposure attributes that can be described and captured to thoroughly assess the exposure include the duration, severity, controllability, life domain, the target of the stressor and the potential of the stressor to elicit a specific harmful emotional response, and the lack of control to those worsen the outcomes [10]. The participants constantly had to be exposed to the strenuous working environment of caring, which is perceived as a stressor. The exposure was a prolonged, intense, and uncontrollable one, hence the participants were stressed.

Many people cannot find a way to put the brake on stress because, after a while, it affects the body, thus contributing to health problems [15]. triggers of stress must be addressed urgently because failure to do so leads to chronic stress, anxiety, and depression and is further attributed to serious physical health conditions such as cardiovascular diseases [8]. It is, therefore, the responsibility of an employee and employer to address the stressors. Stress management strategies include advising employees to know their boundaries and never cross them, not to take more than they can handle, participating in group activities, learning to maintain a healthy balance in life, expressing dissatisfaction if upset, avoiding alcohol and smoking, eating a healthy diet, exercise and sleep more [36]. An employer is under a duty to take reasonable care to protect employees from injuries at work, including removing stressors in the workplace [12]. Managers must therefore assist care workers by creating a conducive environment that is stress-free. A conducive environment entails alleviating a heavy workload by helping an employee to set expectations and model behaviour, boosting an employee's career happiness by uncovering their feelings and helping motivate employees to continue achieving their personal and professional goals, building relationships among team members, where honesty and integrity prevail, improving relationships with employees by reflecting and developing the skills needed to handle employees more professionally, communicating future fit in an organisation because when employees are unsure of what they will be doing in the organisation [29]. In further managing stress in the workplace, the human resource department should not only focus on hiring and firing but should also make sure that managers are not stressing out employees, and must further recognise signs of stress amongst staff, understand the importance of stress prevention and take actions in situations where stress has been identified as a problem [38].

The theme of emotional trauma explains the negative psychological impact that caring. The emotional trauma manifested itself through feelings of sadness, being overwhelmed, and anger. Emotional trauma is a natural reaction to certain types of disturbing events [14]. Employees who are exposed to trauma at work may experience psychological symptoms that may negatively affect their health, productivity, and relationships with others [5]. Psychological or emotional distress can influence an individual's health, well-being, and quality of life, hence post-traumatic stress must be addressed urgently, appropriately, and early because negative alteration in mood and cognition and hyperarousal are the most significant clusters of an impact of stress [1]. People who are stressed often utilise behavioural disengagement as a strategy for stress management. The approach involves a person distancing herself or himself from the source of stress when they believe that they have little control over their circumstances. Where behavioural disengagement is not an option, self-blame is used as a coping style in which the person holds herself or himself accountable for the situation. Unfortunately, the approach is a short-lasting solution as it only provides temporary relief [24].

It is evident that participants were utilising a short-term lasting approach to trauma management hence the problem continues to exist. A long-term approach called the problem-focused coping approach is ideal because it further addresses the root causes of stress and trauma, thus leading to a more long-lasting solution. Developing adaptive coping strategies can benefit people in coping with a stressful and traumatic situation. These coping strategies should be strengthened to help prevent people from experiencing long-term negative effects that could arise from the traumatic events. Active coping strategies instead of avoidance strategies should therefore be promoted. [24]. Healthcare organisations have to protect staff from physical and psychological harm [4]. As a long-term approach to the management of emotional trauma, managers must recognise employees who are distressed and assist them. Effective social support, adequate training on how to respond to emergencies at work, and effective strategies such as confronting coping rather than denial or avoidance are factors that protect employees from adverse mental health consequences following a disaster [5]. Counsellors in the workplace must provide trauma-informed career counselling to employees who have experienced work trauma [23].

Limitation and recommendations

The study was confined to one province of the country thus making the experiences of care workers in other provinces of the country unknown. Therefore, due to the qualitative nature of the study, the results of the study cannot be generalised to other provinces. However, the results of this study are likely to apply to other settings in South Africa as the themes mentioned are universal issues and can therefore be used to improve conditions of care workers nationally. The researcher therefore recommends future studies that will include participants in all provinces of the country.

Care workers of children with intellectual disabilities encounter psychological burdens during caring. Stress and emotional trauma are key psychological burdens associated with caring. The study further identified the short-term coping strategies that care workers use to temporarily relieve themselves. Long-term strategies such as problem-focused coping approaches and adaptive coping strategies have been recommended as permanent relief. If applied by various stakeholders in health departments where care workers are providing care to children with intellectual disabilities, the working environment of care workers can improve, work-related stressors can be eradicated and job satisfaction and the quality of care for children can result. The findings of the study can further assist future researchers who are aiming to develop programmes of support for care workers.

Acknowledgement: The author would like to acknowledge participants of the study and various authors of journal articles used.

Author contribution: The corresponding author, who is the only author, planned and designed the study, collected and analysed data, compiled the findings, and proofread the manuscript.

Funding: No funding was received for this study.

Data availability: The data that support the findings of this study are available on request from the corresponding author.

Competing interests

The author declares no competing interests.

Ethics approval and consent to participants

The author declares that a valid ethical clearance certificate was obtained before the study could commence, reference number NWU-00462-20-S1. Managers in the facilities further gave permission to access the facilities. All participants signed consent forms to voluntary participate. All sources used are duly acknowledged.

Funding

The study did not receive any funding.

Agarwal TM, Muneer M, Asim M, Awad M, Afzal Y, Al-Thani H, Alhassan A, Mollazehi, M, El-Menyar A. Psychological trauma in different mechanisms of traumatic injury: A hospital-based cross-sectional study. PlosOne. 2020, 1:1-6. https://doi.org/10.1371/journal.pone.o242849.
Barzev SA, Richards S, Meeus WHN, Oldehinkel AJ. The social withdrawal and social anxiety feedback loop and the role of peer victimisation and acceptance in the pathways. Journal of Development and Psychopathology. 2020, 32(4):1502-1417. doi:10.1017/D0954579419001354.
Babapour AR, Gahassab-Mozafaria N, Fathnezhad-Kazemia A. Nurses ‘job stress and its impact on quality of life and caring behaviours: A cross-sectional study. Bio Med Central (BMC) Nursing. 2022, 21(75): 1-10.https://doi.org/10.1186/s12912-022-00852-y.
Berry K, Allsopp K, Gaskin F, Price O. Staff support for workplace trauma: a freedom of information act request survey for NHS trusts providing mental care in England. Journal of Mental Health. 2023, 1:1-5. https://doi.org/10.1080/09638237.2023.2278094.
Brooks S, Rubin GJ, Greenberg N. Managing traumatic stress in the workplace. Occupational Medicine 69. 2019, 1: 2-4. https://doi.org/10.1093/occmed/kqy146.
Buczer AP, Nowicka J, Ciekanowski Z, Marciniak S. Stress in the working environment and its causes. European Research Studies Journal. 2023, 2:138-151. https://ersj.eu.
Burns N, Groves SK. Understanding nursing research: Building an evidence-based practice. 8^th^ed. USA: Elsevier2,016.
Can YS, lles-Smith H, Chalabianloo N, Eriz D, Fernández-Álvarez J, Repetto C, Riva G, Ersoy C. How to relax in stressful situations: A smart stress reduction system. Health Care. 2020, 8(2): 100. doi:10.3390/healthcare8020100.
Castellini G, Consonni D, Costa G. Conflict in the workplace, negative acts, and health consequences: Evidence from a clinical evaluation. Industrial Health. 2023, 61(1): 40-55. doi: 10.2486/indhealth.2021-0283.
Crosswell AD, Lockwood KG. Best practices for stress measurement: How to measure psychological stress in health research. SAGE Journals. 2020, 7(2):1-6. https://doi.org/10.1177/2055102920933072.
Daly M. Care workers in England care homes: Managing commodification, motivations, and caring ideals. Social Politics: International Studies in Gender, State & Society. 2023, 30 (3): 55-67. https://doi.org/1.1093/sp/jxad012.
Davies ACL. Stress at work: Individuals or structures? Industrial Law Journal. 2022, 51 (2): 403-434. https://doi.org/10.1093/indlaw/dwab006.
Fernández-Ávalos M I, Pérez-Marfil MN, Ferrer-Cascales R, Cruz-Quintana F, Clement-Cabonell V, Fernández-Alcántara M. Quality of life and concerns in parents’ caregivers of adult children diagnosed with intellectual disability: A qualitative study. International Journal of Environmental Research and Public Health. 2020, 1 (1):1-19.
Giokatos O. Neurobiology of emotional trauma. Journal of Psychiatry. 2020, 31(2): 162-171. Doi:10.22365/jpsych.2020.312.162.
Howard L. Understanding the stress response. Harvard Health Publishing. 2024, 1:1-5. https://www.health.havard.edu>staying-healthy.
Hutmacher F. Putting stress in historical context: Why it is important that being stressed out was not a way to be a person 2,000 years ago, Frontiers in Psychology. 2021, 12:1-9. doi:10.3389/fpsyg.2021.539799.
Islam MA, Rahman A, Akhtar S. Psychosocial impact of caring for children with intellectual disabilities in Bangladesh. International Journal of Public Health Science. 2021, 11(1): 211-219.doi:10.11591/ijphs. v11i1.21072.
Kjaervik SL, Bushman BJ. Meta-analytic review of anger management activities that increase or decrease arousal: What fuels or douses rage? Clinical Psychology Review. 2024, 109:1-14. https://doi.org/10.1016/j.cpr.2024.102414.
Krystal AD, Ashbrook LH, Prather AA. What is insomnia? JAMA. 2021, 326 (23): 2444. doi:10.1001/jama.2021.19283.
Larkin M, Henwood M, Milne A. Carer-related research and knowledge: Findings from a scoping review. Health and Social Care in the Community. 2019, 27: 55-67. https://doi.org/10.1111hsc.12586.
Leonard H, Montgomery A, Wolff B, Strumpher E, Masi A, Woolfenden S, Williams K, Eapen V, Finlay-Jones A, Whitehouse A, Symons M, Licari M, Alvares G, Evans K, Downs J, Glasson E. A systematic review of the biological, social, and environmental determinants of intellectual disability in children and adolescents. Frontiers in Psychiatry. 2022, 1:13. doi:10.33389/fpsyt.2022.926681.
Levin GN. Psychological stress and heart disease: Facts or folklore? The American Journal of Medicine. 2022, 135(6): 688-696. https://doi.org/10.1016/j.amjmed.2022.01.053.
Linnekaste JJ. Trauma-informed career counseling to address work traumas. Journal of Career Development. 2021, 3 (1):42. https://doi.org/10.4102/1jcd.v3i1.42.
Mashego BB, Boshoff PJ, Fourie E. Association between coping strategies and secondary traumatic stress among forensic social workers in South Africa. Social Work (Stellenbosch. Online). 2023, 59 (4):1-10.http://dx.doi.org/10.15270/59-4-1175.
Moosa-Tayob S, Risenga P. Challenges of caregivers providing care to children with disabilities at non-governmental organisations in Tshwane townships, South Africa. African Journal of Disability. 2022, 11(1):1-10. http://doi.org/10.4102/ajod.v11io.930.
O'Connor DB, Thayer J, Vedhara K. Stress and health: A review of psychological processes. Annual review of Psychology. 2021, 72:663-688. https://doi.org/10.1146/annurev-psych-062520-122331.
Olusanya BO, Kancherla V, Shaheen A, Ogbo FA, Davis AC. Global and regional prevalence of disabilities among children and adolescents: Analysis of findings from global health databases. Frontiers in Public Health.(2022, 10:1-10 Doi:10.3389/fpubh.2022.977453.
Opoku MP, Nketsia W, Banye M.A, Mprah WK, Dogbe JA, Badu E. Caregiving experiences and expectations of parents with in-school children with intellectual disability in Ghana. Research in Developmental Disabilities. 2020, 96: 1-8. https://doi.org/10/1016/j.ridd.2019.103524.
Panigrahi A. Managing stress at the workplace. Journal of Management Research and Analysis. 2024, 1: 1-4. Doi;10.18231/2394-2770.2016.0001.
Raliphaswa N, Maluleke M, Netshikweta ML. ‘Not my dream’: Mother’s challenge of raising intellectual disability child in Vhembe district. Health SA Gesondheid. 2022, 27: 1995. doi:10.4102/hsag. v27i0.1995.
Riemann D, Benz F, Dressle RJ, Espie CA, Johann AF, Blanken TF, Leerssen J, Wassing R, Henry AL, Kyle SD, Spiegelhalder K, Van Someren EJW. Insomnia disorder: State of the science and challenges for the future. Journal of Sleep Research. 2022, 1:1-18. Doi:10.1111/jsr.13604.
Rouault M, Will GJ, Fleming SM, Dolan RJ. Low self-esteem and the formation of global self-performance estimates in emerging adulthood. Translational Psychiatry. 2022, 12: 272, https://doi.org/10.1038/s41398-022-02031-8.
Saavedra JMS. Overwhelm: Definition, feelings, and symptoms. Berkeley Well-being Institute 2023, 1:1-10. http://www. Choosingtherapy. com>feeling-overwhelmed.
Santini ZI, Jose PE, Cornwell EY, Koyanagi A, Nielsen L, Hinrichsen C, Meilstrup C, Madsen KR, Koushede V. Social disconnectedness, perceived isolation, and symptoms of depression and anxiety among older Americans (NSHAP): A longitudinal mediation analysis. Lancet Public Health. 2020, 5:62-69. www.thelancet.com/public-health.
Statistic South Africa, 2014, Census 2011: Profile of persons with disabilities in South Africa, Statistic South Africa, Pretoria. https://www.statssa.gov.za. Accessed o9 September 2014.
Sujaritha J, Deepa N, Nandhini J, Vandhana V, Mahalakshmi D. Stress and stress management: A review. Indian Journal of Natural Sciences. 2022, 13(73): 45558- 45571.
Theodoratou M, Kougioumtzis GA, Yotsidi V, Sofologi M, Katsarou D, Megari K. Neuropsychological consequences of massive trauma: Implications and clinical interventions. Medicina. 2023,59 (12):2128. https://doi.org/10.3390/medicina59122128.
Tran CTH, Tran HTM, Nguyen HTH, Mach DN, Phan HSP, Mujtaba BG. Stress management in the modern workplace and the role of human resource professionals. Business Ethics and Leadership. (020, 4 (2): 26-40. http://doi.org/10.21272/bel.
World Health Organisation. Disorders of intellectual development. https://icd.who.int/browse11/1m/en#/https%31%2f%2fid.who.int%2ficd%2fentity%2f605267007. 2020, Accessed January 21, 2020.
Xue F, Suh HN, Rice KG, Ashby J. Cumulative trauma and trauma symptoms: A three-way interaction. Behavioural Sciences. 2023, 13(7):567.https://doi.org/10.3390/bs13070576.
Zafar MS, Nauman M, Nauman H, Nauman S, Kabir A, Shahid Z, Fatima A, Batool M. Impact of stress on human body: A review. European Journal of Medical and Health Sciences. 2021, 3 (3): 1-7, doi: http://dx.doi.org/10.24018/ejmed.2021.3.3.821.

No competing interests reported.

Download PDF

Editorial decision: Revision requested
07 Aug, 2024
Editor assigned by journal
01 Aug, 2024
Submission checks completed at journal
01 Aug, 2024
First submitted to journal
30 Jul, 2024

You are reading this latest preprint version

The psychological burden of caring for children with intellectual disabilities as experienced by care workers

Status:

Version 1

Abstract

Background

Methods

Research design

Study setting

Participants

Recruitment process

Data collection

Data analysis

Results

Theme 1: Stress

Work conflict

Difficulty in sleeping

Social withdrawal

Low self-esteem

Theme 2: Emotional trauma

Feeling of sadness

Feeling overwhelmed

Anger

Discussion

Limitation and recommendations

Conclusion

Declarations

References

Additional Declarations

Status:

Version 1