R E S E A R C H Open Access © The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Abeasi et al. BMC Nursing (2024) 23:482 https://doi.org/10.1186/s12912-024-02142-1 BMC Nursing *Correspondence: Doreen Asantewa Abeasi reenasantewa@gmail.com 1Department of Nursing Science Education, University of Witwatersrand, Johannesburg, South Africa 2Department of Nursing and Midwifery, Presbyterian University, Abetifi, Ghana 3Department of Child Health, Korle-Bu Teaching Hospital, Accra, Ghana 4University of Ghana Medical School, Korle-Bu, Accra, Ghana Abstract Background Caring for a child with developmental disabilities (DD) is associated with significant stress and burden. Caregivers’ experiences are influenced by factors such as poverty, stigma, and the lack of accessibility to services, equipment, and assistive devices. These factors are prevalent in a low-resource setting like Ghana which ultimately influences the experiences of caregivers. The aim of the study was to explore the experiences of caregivers of children with DD in the context of the Stress Process Model. Methods The study employed a descriptive phenomenological design Caregivers of children with DD attending the Neurodevelopmental Clinic of a Teaching Hospital were purposively sampled. Data collection involved semi- structured interviews, reaching saturation with 14 participants. The interviews were audio-recorded transcribed verbatim and analysed using thematic analysis. Results Four main themes emerged: perception of caregiving, stressors faced by caregivers, negative health outcomes and coping strategies. Perception of caregiving had two sub-themes as stressful nature of caregiving and time-consuming. Six sub-themes were linked to stressors faced by caregivers: the child’s ADL needs, communication barrier, managing challenging behaviour, child’s health needs, unmet educational needs, and economic burden. Negative health outcomes had three sub-themes: decline in physical, mental and social well-being. While some caregivers used maladaptive coping strategies like blaming, others employed adaptive coping strategies like religious coping through prayer, self-encouragement and support from other family members. Conclusion The study highlights the complex interaction between caregivers’ perception of their caregiving situation, the stressors they experience, their coping resources,  and the negative health outcomes associated with caregiving. These findings underscore the need for context-specific caregiver programmes to mitigate the negative impacts of caregiving. Keywords Caregivers, Children, Developmental disabilities, Experiences, Ghana Caring by default: experiences of caregivers of children with developmental disabilities in Ghana mirrored in the context of the stress process model Doreen Asantewa Abeasi1,2*, Nokuthula Gloria Nkosi1, Ebenezer Badoe3,4 and Josephine Adjeman3 http://creativecommons.org/licenses/by/4.0/ http://creativecommons.org/publicdomain/zero/1.0/ http://crossmark.crossref.org/dialog/?doi=10.1186/s12912-024-02142-1&domain=pdf&date_stamp=2024-7-15 Page 2 of 22Abeasi et al. BMC Nursing (2024) 23:482 Introduction Developmental disabilities [DD] are long term condi- tions that significantly impair many domains of a child’s development [1, 2]. Consequently, children with DD face challenges in performing Activities of Daily Living [ADL] such feeding, bathing, communicating, and mobilis- ing [3]. They also experience sleep problems and exhibit challenging behaviours, including aggression, hyperac- tivity, impulsivity, self-injurious behaviour, and destruc- tive behaviour [4, 5]. These conditions result in multiple long-term impairments, activity limitations, and complex health needs. Unlike other typically developing children, those with DD may require full-time support from care- givers for effectively functioning. Information on DD is limited in developing countries, but existing evidence indicates a high prevalence, espe- cially in low- and middle-income [LMIC] countries like Ghana [6]. According to Olusanya et al., the number of children living with disabilities in Ghana increased from 241,529 in 1990 to 373,912 in 2016 representing a 54.8% increase [7]. The increasing prevalence of children with disabili- ties in Ghana implies that many people will become formal and informal caregivers. Formal caregivers, such as teachers and nurses, typically receive payment, for- mal training, and possess the skills to manage caregiv- ing responsibilities effectively [8]. In contrast, untrained caregivers (informal caregivers) in Africa are often fam- ily members like parents, grandparents, siblings, or other relatives [8], are untrained, unprepared, unskilled and unpaid [9]. This is confirmed by studies report- ing that caregivers felt they did not have sufficient skills and knowledge to provide the needed care for their child with a disability [10, 11]. They also did not have adequate information about the needs of their care recipients, including rehabilitation [12]. Thus, caregiving puts high demands on these caregivers. While some studies report that caregivers have positive experiences caring for a child with DD [13, 14] and cope effectively with caregiving demands, others have not. The experiences and outcomes of caregiving in low- and middle-income countries have been largely influenced by factors such as poverty [15] and stigma [16]. For example, the concept of stigma may be more prevalent in settings like Ghana, where people believe that children with dis- abilities are cursed, bewitched, a punishment from God or other supreme beings, or that their parents have used them for money rituals [17, 18]. Negota and Mashegoane affirm that the biomedical explanation of disability is not considered from caregivers’ perspectives, with the focus instead on spiritual explanations, which deepens the stigma they experience [19]. Other challenges include difficulty accessing social assistance grants, health care and social services, educational and recreational facilities, and infrastructure [12]. For example, some caregivers believe they lack ade- quate professional support to care for their children with disabilities [12]. Additionally, other caregivers have out- lined lack of equipment and assistive devices [12]. Thesee challenges can significantly influence caregiving expe- riences and lead to increased stress and burden of care. A plethora of studies have documented that caregiving is associated with a high level of stress [20–23]. Stress is pervasive and can influence multiple areas of caregivers’ lives. The Stress Process Model [SPM] provides a frame- work for examining the relationship between stress fac- tors and how they interconnect to influence a caregivers’ well-being. The SPM comprises four main components: background and context of stress, stressors, mediators, and outcomes of stress [24, 25]. Background and context are antecedents that influence stress outcomes [25, 26]. Various background factors including caregiver age [27]; caregiver gender [28, 29]; caregiver educational level [30]; marital status [28]; income level [31]; child’s age [27]; child’s gender [32]; caregiving history [33] have been doc- umented to influence the outcomes of caregiving though the evidence is inconclusive. Stressors are those things that create mental pressure for caregivers,  including their experiences, conditions or activities [34]. Primary stressors arise from the care recipients’ needs as well as the care required to address those needs [25]. It also includes behaviour problems, ADL dependencies, burden or overload experienced by the caregiver, functional and cognitive status of the care recipient. These primary stressors may lead to secondary stressors [25], such as strain on the caregiver’s job, social relations, recreational activities and finances. In the SPM, caregiving outcomes mark the end of the stress process and these are considered the injuri- ous impacts of stressors [24]. Studies have shown that caregivers experience poorer physical health than non- caregivers [35–37], facing issues such as sleep problems [38], low back pain [39], fatigue [40], headache [41], and musculoskeletal pains have been documented. Psycho- logically, anxiety and depression are commonly reported [31, 33, 42]. Resources like coping mechanisms and social support within the SPM serve as mitigating factors against the negative impacts of caregiving. While some studies have explored the experiences of caregivers of children with disabilities in the Ghanaian context, they have utilised any theoretical framework and have typically focused on one form of DD [17, 18]. Applying theory in qualitative research can provide a structured framework to guide the study [43, 44], orga- nize data, and elucidate connections between different factors [43]. Primarily, understanding the complexity involved in how the caregiving factors are related and Page 3 of 22Abeasi et al. BMC Nursing (2024) 23:482 how different stressors lead to negative outcomes is cru- cial in addressing the challenges faced by the caregivers. Thus, the use of the SPM in this study aims to clearly spell out the factors involved in the caregivers’ experiences and how these factors interconnect and lead to health outcomes. Additionally,  the SPM outlined which factors require interventions to improve caregiving outcomes. Although the relationship between stress and stress outcomes is well-known, further insight into this rela- tionship can guide future studies and the development of interventions to promote well-being of caregivers. Previ- ous studies have focused exclusively on mothers [19, 45] or fathers of children with disabilities [46]. Despite the fact that most caregiving responsibilities typically fall on mothers, it is also important to highlight the experiences of fathers. Furthermore, to see if the experiences will be different among the various categories of caregivers. To address these gaps, this study represents the first appli- cation of SPM to explore the experiences of caregivers using a descriptive phenomenological research design in Ghana. It broadens the scope by including various cat- egories of caregivers and types of DD. Therefore, the aim of the present study was to explore the experiences and coping strategies of caregivers within the context of the SPM. Methods Design The study employed a descriptive phenomenological design to explore the lived experiences of caregivers of children with DD. This design was chosen to provide a detailed and systematic description caregivers’  experi- ences without imposing interpretations. Research setting The study was conducted at the Neurodevelopmental Clinic of a tertiary hospital in Ghana. The Neurodevelop- mental clinic is located at the Child Health Department and operates on Mondays, excluding holidays. The set- ting is the largest tertiary health facility in Ghana, which provides specialised care to children with all forms of DD. As such, the facility was seen as having a high patient load and being accessible for most caregivers, which made it convenient for the current study. Participants Participants for this study were purposively sampled from the Neurodevelopmental Clinic of a tertiary hos- pital. According to [47], the main premise of purposive sampling is being able to select information-rich cases, which would allow gain in-depth insights into the study. The inclusion criteria were: (1) being a primary caregiver and a parent of the child with DD (2) caregiver who is 18 years and above; (3) having provided care for 6 months or more for the child with DD; (4) having a child with DD who is between 5 and 14 years of age and has received a formal diagnosis of DD; (5) being a primary caregiver who is capable and willing to give consent; and (6) being able to speak either English or Twi language. The exclu- sion criteria were: (1) caregivers receiving a form of psychological or behavioural treatment or on antihy- pertensive medication; (2) those facing other major life stressors at the time of the study, such as loss of a spouse or significant other. Data collection The first author with the assistance of the clinic nurse- in- charge, examined the clinic database to identify primary caregivers meeting the inclusion criteria, and contacted them via mobile phone. These participants were pro- vided information about the study, including its purpose, risks, benefits, confidentiality, and anonymity, among others. They were informed that the interview would be recorded, and were given the opportunity to ask ques- tions. Interviews were scheduled during their next clinic visit, where participants were supported to sign the con- sent form before the commencement of the interviews. The individual interviews were conducted in one of the clinic’s consulting rooms, lasted an average of 40 min and were recorded with a voice recorder. The choice of the setting was thoroughly discussed with the participants and they preferred the clinic setting. Data collection was done using semi-structured interviews, guided by an interview guide developed by the authors  (see supple- mentary file 1). All interviews were conducted between October 2021 to January, 2022. Sample size in qualitative studies is often not deter- mined a priori [48, 49], however, saturation is usually used. Saturation is described as a point at which infor- mation collected becomes redundant and additional data does not significantly impact the study [48]. Saturation was achieved with 14 participants. Nine interviews were conducted in the Twi Language while five were in the English Language. Data was collected during the COVID-19 pandemic era, however, at the time of data collection the infection rate in the country had significantly decreased. Addi- tionally, no participant during the interview made men- tion of the any negative impact the COVID-19 pandemic had had on their caregiving role. This suggests that the COVID-19 pandemic did not significantly affect the find- ings of the current study. Data analysis Thematic analysis was systematically followed to anal- yse the qualitative data. This method is used to identify, analyse, organise, describe and report themes within dataset [50]. Though a lot of patterns could be identified Page 4 of 22Abeasi et al. BMC Nursing (2024) 23:482 across any dataset, the focus was on those patterns that were relevant especially in answering particular research questions. The analysis was guided by Braun and Clarke’s six-phase process of thematic analysis which are familia- risation with the data, generating initial codes, generating themes, reviewing the theme, defining and naming the theme and write-up [50, 51]. The essence of familiarisation was to become intimately familiar with the data and to identify information that may be relevant to the research question [50, 51]. The audio-recordings were actively listened to before the transcription began. The first author, who is proficient in the native language (Twi) and English, translated the responses from Twi into English. A professional trans- lator translated the Twi transcripts into English, and another independent translator read the English tran- scripts, translated them back into Twi and compared them to the original Twi transcripts to ensure accuracy. Manual transcription helped to facilitate deep immersion into the data, noting; breaks, pauses and tones [50]. The transcribed data or transcripts were read severally. While doing this, initial trends, patterns, interesting points and meanings were taken note of. The next stage involved generating initial codes. Codes are considered as the building blocks of themes. Cod- ing was done to produce succinct, short hand descrip- tive or interpretive labels for information that may be important to the research question. Codes were brief but offered sufficient details to stand alone [50]. In the next stage of data analysis, themes were generated based on the codes. This phase involved reviewing and analysing different codes, and possible combination of the codes to form an aggregated meaning and subsequently a sub- theme or theme. A thematic map was generated. Review of the initial themes was done in relation to the coded data items and the entire data set [51]. During the review of the themes, themes found to be overlapping were col- lapsed. The themes were then defined and named. The names were concise, informative and memorable. During the write-up stage, themes were built in a coherent man- ner. They were organised such that they built on previous reported themes. Ethical considerations The study obtained approval from the Human Research Ethics Committee (HREC) of the University of Witwa- tersrand. The Scientific and Technical Committee also approved it, as did the Institutional Review Board of the Korle-Bu Teaching Hospital, with approval numbers KBTH-STC/00021/2021 and KBTH-IRB/00021/2021 respectively. The study adhered strictly to principles of informed consent, privacy, confidentiality, respect, the right to withdraw and responsibility. Minor participants were not included in the current study, the focus was on adult participants. Trustworthiness of the study For a study to be considered trustworthy, clear pro- cedural rigor is essential [52]. The criteria commonly used are credibility, dependability, confirmability, trans- ferability, authenticity and reflexibility [53]. To ensure credibility, this study employed established qualita- tive research methods, careful comparison with simi- lar projects, engaged in prolonged interactions between the first author and participants, and obtained consent from all participants [52]. Iterative questioning was used to uncover deliberate lies, and debriefing sessions were conducted between first author and the other authors. Member checks were conducted at every stage of data collection to ensure accuracy and avoiding falsehoods. Transcripts of dialogues between six participants and the first author were provided to verify their intentions. Dependability, which refers to the stability of data over time and study conditions [54], was ensured through the use of inquiry audit technique [52]. To establish confirm- ability, the detailed recording of the research interview transcripts; raw data field notes including the date and time of the interview, how consent was obtained, and the process of the interviews were described. Transferabil- ity was achieved by giving a detailed description of the research design, methods, and processes applied [54]. Reflexibility was maintained by the authors keeping a diary to examine how their own assumptions, beliefs, and values could influence the research decisions. Results Sociodemographic characteristics of caregivers and care recipients The sociodemographic characteristics of the caregivers and children with DD are described in terms of care- giver age, gender, marital status, occupation, duration of caregiving and relationship to the patient. The findings from Table  1 indicate that both caregivers and children with DD in the study were relatively young. The major- ity of the caregivers were females (n = 11), cohabiting or divorced or unmarried (n = 9), unemployed (n = 8). Addi- tionally, majority of caregivers had provided care more than 2 years (n = 11). Most children with DD were males (n = 9), with CP (n = 4) or ASD (n = 4) being the most common diagnoses. Detailed information is presented in Tables 1 and 2: Themes, sub-themes and categories emerging from the study The description of themes, sub-themes and codes in the study is summarised in Table 3. Page 5 of 22Abeasi et al. BMC Nursing (2024) 23:482 The findings of the study were examined in the context of the Stress Process Model, which served as the theoreti- cal underpinning. It was observed that caregivers experi- enced both primary and secondary stressors, consistent with as the SPM. Furthermore, poor health outcomes were also reported, similar to the SPM. Caregivers used certain resources: spirituality/prayer, support from fam- ily and self-encouragement to cope with the stressors of caregiving. How the current study fits into the SPM is outlined in Fig. 1: Theme 1: perception of caregiving role Generally, caregivers perceived that caring for a child with DD as negative. Two sub-themes were generated: caregivers perceived caregiving as stressful and time consuming. Sub-theme: stressful nature of caregiving Caregivers were overwhelmed with the caregiving activi- ties for children with DD, leading to high levels of stress, fatigue and exhaustion. The level of dependence of chil- dren with DD on the caregiver comparable to that of a typically developing children did not appear to be the same. Children with DD exhibited greater dependency on their caregivers, had extra needs and required ade- quate support to thrive. A caregiver had this to say: “Caring is stressful. I have other children, so I usu- ally compare them, and you notice that as the “nor- mal” is growing they begin to acquire some level of independence and are able to do some little things for themselves. In the case of the child with the dis- ability, it’s not like that. You do everything for them.” (P5, mother, 24 years). Performing activities of daily living (ADL) for the chil- dren with DD was particularly stressful for caregivers especially in the absence of mechanic devices. These activities are performed daily and it would be impossible for the caregiver to skip or ignore. Any attempt by the caregiver not to perform such activities imply, the child with DD will suffer. The inability to accomplish essential activities of daily living may lead to unsafe conditions and poor quality of life. A female caregiver with a child with CP recalled: “The experience in taking care of the child is difficult. As you know, as a caregiver, I do everything for the child. If I don’t, meaning the child won’t feed, bath, dress and so forth.” (P11, mother, 30 years). Some other caregivers shared that performing mul- tiple roles in addition to being a caregiver was stressful. The caregiver had to work either full time or part time in order get some money to take care of their child with special needs. Social roles like taking care of other chil- dren and their partners made caregiving quite stressful. One caregiver narrated: “This task is not easy at all. Taking care of such a child is full time job. But you cannot also say you won’t work. Where will the money be coming from to take care of the child? You have to work; you have to take care of his siblings and you have to perform your role as a wife. In one instance I am a caregiver, Table 1 Socio-demographic characteristics of caregivers and children with developmental disabilities Participant Gender Age Marital status Employment status Duration of caregiving Gender of child Specific diagnosis 1 Female 31 Married Employed 8 months Male CP 2 Female 35 Single Employed 2 years Male ASD 3 Male 42 Married Unemployed 2.5 years Female DS 4 Female 27 Cohabiting Unemployed 5 years Female ADHD 5 Female 24 Single Employed 3 years Female CP 6 Female 28 Married Unemployed 2 years Male ASD 7 Male 36 Divorced Employed 3 years Male DS 8 Female 34 Single Employed 4 years Male ID 9 Female 35 Married Unemployed 2.5 years Female CP 10 Female 29 Married Unemployed 7 years Male ADHD 11 Female 30 Cohabiting Unemployed 3 years Male ASD 12 Male 39 Single Unemployed 2 years Male ID 13 Female 44 Divorced Unemployed 8 years Male ASD 14 Female 26 Married Employed 1.8 years Female CP Table 2 Mean age of caregivers and children with developmental disabilities Caregiver’s age Range (years) Mean (years) 32.85 SD 6.48 Child’s age Range Mean 6.86 SD 2.03 Page 6 of 22Abeasi et al. BMC Nursing (2024) 23:482 Table 3 Themes, sub-themes, and codes Themes Subthemes Codes Perception of caregiving role Stressful nature of caregiving Overwhelmed with caregiving Tiredness from caregiving role Difficulty combining caregiving role and other social roles Time consuming Caregiving takes a lot of time Caregiving is extended Caregiving takes away one’s leisure Caring for a child with DD is a task that needs time Stressors Child’s ADL needs Assisting with feeding Assisting with bathing Assisting with elimination Communication barrier Caregiver communicating expectations Child with DD communicating his or her needs Managing challenging behaviour Forms of difficult behaviours Triggers of difficult behaviours Dealing with usual behaviours Child’s health needs Proximity of the hospital to caregiver’s home Visiting the hospital many times Preparing for hospital appointments Difficulty obtaining prescribed medication from hospital pharmacy Time spent at the hospital during visits or appointments Unmet educational needs Difficulty getting a special school for the child with DD Proximity of special schools High cost of enrolling in special school Gaining admission into mainstream school Attitude of teachers from mainstream school Economic burden Cost of medications Cost of assistive devices Cost of other therapies Loss of job Conflicting demands of job and caregiving Under employment Decreased output at work Negative health outcomes Decline in physical well-being Low back pains General body pains Headaches Fatigue Difficulty in sleeping at night Interrupted sleep at night Decline in mental well-being Decreased concentration Feeling angry Feeling sad Feeling anxious Decline in social well-being Unable to take part in social functions Limited social contact Loss of interest in social activities Negative attitudes from other people Strained relationship with partners Strained relationship with friends Strained relationship with community members Coping strategies Adaptive coping strategies Religious coping through prayer Self-encouragement Support from immediate family/nuclear family Maladaptive coping strategies Blaming self Blaming others Blaming supreme being Page 7 of 22Abeasi et al. BMC Nursing (2024) 23:482 in another a mother and in another a wife. All these come with responsibilities.” (P14, mother, 26 years). Sub-theme: time-consuming Other caregivers were concerned with the time-consum- ing nature of caregiving. The activities performed during caregiving took caregivers time. In the opinion of some caregivers, the activities start in the morning and contin- ues till the evening. One caregiver remarked: “I spend a lot of time in taking care of this child. Once you start the day’s activities, by the time you realise it’s evening.” (P3, father, 42 years). Caregivers barely had time to take care of themselves. Many of them channelled their energy and time in tak- ing care of their children with DD. Possibly as result of children with DD not being able care for themselves and caregivers had to do that for them. One caregiver nar- rated her experience in the following: “Caring for my child takes all my time. Everything is almost about him now. To be frank, I hardly get time for myself these days.” (P10, mother, 29 years. Theme 2: stressors faced by caregivers Caregivers had stressors that increased their burden of care and subsequently affected their well-being. The sub- themes generated were child’s ADL needs, communica- tion barrier, managing challenging behaviours, child’s health needs, unmet educational needs, and economic burden. Sub-theme: child’s ADL needs For this sub-theme, caregivers felt responsible for mak- ing sure that their children were comfortable by ensuring Fig. 1 Findings of phenomenological study examined in context of SPM Page 8 of 22Abeasi et al. BMC Nursing (2024) 23:482 they provided them with all their needs, however, this was a major stressor to caregivers. Caregivers had to han- dle tasks like feeding, bathing and assisting with elimina- tion because their children could manage these activities independently. This is explained in detail below: Feeding Caregivers encountered challenges when feeding chil- dren with DD. For some caregivers, children with DD preferred certain types and textures of food. Feeding ses- sions also took longer than usual, and any attempt to rush through meals resulted in negative consequences such as choking. Despite trying various types of food, caregivers found that their children often struggled to tolerate new options, making them hesitant to introduce unfamiliar or new foods. A caregiver had this to say: “My daughter can only take liquid diets. If you’re not careful and you overfeed or don’t feed well, she will vomit everything. Because of this, I am always very careful when feeding, so it takes a while to finish with one feeding. If you do not feed her well too, she will be crying throughout the day because she is hun- gry. Anytime I try solid food, it is as if she is choking, so I have stopped.” (P5, mother, 28 years). Children with DD often had specific food preferences and would refuse any food outside their preferences. Thus, in some instances they could not be fed with what the entire family would eat. This meant extra work and cost to the caregivers as they had to spend extra money to prepare different types of foods tailored to their child’s preferences. One caregiver narrated her experience in the following: My child prefers only smooth foods. If the texture of the food is not what she wants, she will reject it. No matter what you do, he will not eat it. So most often, I have to prepare his food differently from what the whole family is coming to eat.”(P13, mother, 44 years). Some caregivers had successfully trained their chil- dren to perform some activities of daily living, however, those activities could not be performed without constant supervision. Regarding feeding, some children could feed themselves but spent more time in doing so. Apart from the time spent, the children with DD spread food parti- cles all over, creating additional work for the caregivers after every feeding episode. A caregiver remarked: “In terms of his feeding, it is not easy. He will soil himself with the food, a large quantity of food par- ticles will be spread on the floor after eating. He will not also allow me to feed, but we end up taking a lot of time because I have to supervise. After feeding, what spreads on the floor is greater than what goes inside.” (P11, mother, 30 years). Elimination Caregivers mentioned they had difficulty regulating elimination needs for children with DD, as these children could not communicate when they needed to urinate or defecate. Sometimes, immediately, after bathing them, they needed to be cleaned again because they have soiled themselves. One caregiver illustrated: “My son is not 100% strong compared with the elder sibling, who is not facing any challenge. Due to his condition, taking care of him is very difficult. One problem is his inability to inform me when he wants to urinate or defecate. He totally depends on me. Sometimes after bathing, he soils himself.” (P1, mother, 31 years). The use diapers had become part of caregivers’ strategies to deal with issues of elimination among children with DD. Its usage was more preferable as non-use was asso- ciated with more work and stress for the caregiver. One caregiver narrated: “He is always in diapers because you cannot be sure when he will want to urinate or defecate. If you allow him to soil himself, usually that is more dif- ficult work, compared with him having diapers on.” (P12, father, 39 years). Bathing Bathing was another activity of daily living caregivers found challenging . For those children with DD who have movement and coordination issues, the caregivers had to physically carry them to the bathroom. The issue of gain- ing the cooperation of children whilst performing activi- ties of daily living is a concern for caregivers. For them, without cooperation, more time is spent on performing certain activities including bathing. A caregiver’s experi- ence is excerpted in the following: “He cannot walk. So, you have to carry him to the bathroom. A lot of time is spent because sometimes there is no cooperation and for a shared bathroom, I worry a lot.” (P2, mother, 35 years). Some caregivers bathing their children with DD in basins so as not to cause undue stress for the child with DD. A caregiver recalls her experience as: Page 9 of 22Abeasi et al. BMC Nursing (2024) 23:482 “I most often bathe her in a basin and afterward go and pour the water away. When I take him to the bathroom, she cannot stand, and I cannot let him sit on the bare floor, so that is the strategy I use. As she is maturing, I am becoming more concerned about this.” (P9, mother, 35 years). Sub-theme: communication barrier Caregivers struggled in communicating their expecta- tions to the children with DD. There are things they expected the children to do but they did not seem to understand the expectations of the caregivers. Caregivers had resorted to inappropriate ways of communicating to the children with DD such as screaming or shouting. A caregiver shared her experience as follows: “Caring for him is difficult because, currently, he is not communicating, so you have to be very smart and be able to read his patterns. When I want him to do something, it’s difficult to tell him. Sometimes, regardless of how hard I try, he just seems not to get what I am saying. I end up screaming. Screaming has now become part of the way I talk to him. I know it is wrong, but I don’t know how to get him to either do something or stop doing something bad or nega- tive.” (P8, mother, 34 years). Other caregivers observed that the children with DD had difficulty communicating their needs to them, leading to misunderstandings and feelings of helplessness among caregivers. Two caregivers gave the following account: “I am trying hard to learn how he communicates his needs, but it looks like I have not gotten there yet. I sometimes feel so helpless when I am unable to figure out what exactly he needs or wants. Sometimes it’s like he’s demanding something and I also do some- thing else.” (P12, father, 39 years). “This child does not talk, nor is he able to express his mood or feelings to you for you to be able to identify the problem he is facing and the necessary help you need to offer.” (P1, mother, 31 years). Sub-theme: managing challenging behaviours Caregivers reported that inappropriate behaviours in children with DD were a significant source of stress. When these children are idle, they often exhibited chal- lenging behaviours like hyperactivity. Findings ways to keep the children meaningfully engaged was essential to reducing such challenging behaviours. A female caregiv- er’s experience is excerpted in the following: “I have experienced a lot of challenges. The child eas- ily messes his immediate environment; he fights with people around him; and he becomes hyperactive. He makes you complain and correct him over and over again because of his hyperactivity. He usually thinks his actions are right, but they end up dam- aging things around him. He is distracted when he watches cartoons on the television set, before I can also concentrate on my house chores.” (P10, mother, 29 years). Caregivers reported some level aggressiveness in their children with DD. Challenging behaviours were trig- gered by some factors. Identifying the triggering factors and dealing with them was a good way of manging chil- dren with DD. Thus, it is the responsibility of caregivers to identify and manage triggering factors which will help decrease the incidence of challenging behaviours. One caregiver, for instance, indicated that hunger in her child with DD triggered aggressiveness. She gave the following account: “She sometimes becomes aggressive. I observed that this happens when she is very hungry. So, I ensure there is always food available, and I don’t let her get hungry. I have timed her feeding pattern so I know the right time to feed him. However, there are times she will stop eating and may not really be satisfied; that is when she will display aggression, though it may not be time to feed her.” (P9, mother, 35 years). Caregivers observed that children who exhibit challeng- ing behaviours need constant monitoring and supervi- sion in order to prevent them from injuring themselves or others. A caregiver recounted: “My child is very hyperactive and it is almost impos- sible to let him sit for a few seconds. He is always up, doing something. He is here, and the next moment he is there. You have to be monitoring him con- tinuously; otherwise, he may injure himself before you can even tell. I keep chasing him around and screaming. That alone takes a lot of energy. It really drains me and makes me exhausted”. (P11, mother, 30 years) Sub-theme: child’s health needs Caregivers understood the importance of seeking medi- cal attention for their children with DD and considered as one of the priority areas for them. However, preparing for hospital appointments required significant planning and effort. Hospital visits implied caregiver could not engage in any other activity. This is because they spent Page 10 of 22Abeasi et al. BMC Nursing (2024) 23:482 most of the time at the hospital and returned home late. A caregiver had this to say: “When you have hospital appointments, you cannot say you will miss them because you think about your child first. You have to wake up very early and pre- pare. When you get to the hospital, you may end up spending almost the whole day there.” (P4, mother, 27 years). Proximity of the hospital was a problem mentioned by caregivers. Some caregivers had to travel from other regions to the capital city in order to access health care for their children with DD. Getting prescribed medica- tions created a challenge for them as the medications were sometimes unavailable at hospital pharmacy. A caregiver recounted: “Anytime we have an appointment, I begin to think, and it makes me anxious. Travelling to the hospital, going through the OPD, meeting the doctor, going to the laboratory, going for the medications, and trav- elling back home is stressful. Sometimes getting the medications is really a struggle, you may not get some at the hospital pharmacy, so you have to roam from pharmacy to pharmacy just to get what has been prescribed.” (P11, mother, 30 years). Sub-theme: unmet educational needs Caregivers struggled to access quality education and maintain their children with DD in school. They would have preferred if their children could easily have some form of special education, which they believed would have assisted the child in developing certain key skills. Unfortunately, it does not appear so, and hence, caregiv- ers identified the unmet educational needs of their chil- dren with DD as a stressor. They were concerned about enrolling the children in school and the challenges asso- ciated with keeping them there. Caregivers expressed worries about finding the appro- priate schools for their children, for them inclusive edu- cation would have been ideal. However, the concept appears not to be practical and most mainstream schools rejected children with special needs. Therefore, caregiv- ers were usually forced to consider special schools for their children with DD. Unfortunately, special schools were few, expensive and inaccessible to a lot of caregiv- ers. Some caregivers expressed their concerns as follows: “I really had a tough time enrolling her in the main- stream school. In Ghana, we always talk about inclusive education, but I doubt if it is really work- ing. No school wants to accept him. It makes me consider special schools, but these schools are not common, especially the government-based ones, and the private-based ones are also quite expensive.” (P3, father, 42 years). “Special schools are expensive. The one I know of is not so close. You have to pick up about three vehi- cles before you get there. In government schools, once they know the child has a problem, they won’t even admit him or her. But I believe when he is enrolled, at least he will be taught some basic things that will be useful at home.” (P8, mother, 34 years). Due to the unique nature in addressing the needs of children with DD, some teachers in mainstream schools often complained about the behaviour of children with DD. Caregivers were not comfortable receiving constant negative reports about their children. One caregiver illustrated: “There are too many complaints that sometimes I can’t bear. Today your child did this; tomorrow your child has done that. Every day and its story. This can be really stressful. So, once he goes to school, I keep wondering what complaints I will receive when I pick him up from school.” (P6, mother, 28 years). Caregivers attributed the constant complaints by teach- ers in the mainstream schools to the inadequate knowl- edge they had on managing children with special needs. There are teachers who have been specifically trained to understand and manage children with special needs. Inadequate knowledge may translate into poor skills lead- ing to frustration on the part of the teacher and finally constant complaints. One caregiver had this to say: “Teachers complain a lot about my child’s behav- iour in school, but I also think it’s because the teach- ers do not have much knowledge in taking care of such children. You can’t blame them. Taking care of one is difficult, so in a class where you have 30 to 40 children, it’s going to be extremely difficult. And you cannot also spend time on only one child.” (P11, mother, 30 years). Sub-theme: economic burden Caregivers explained that caregiving had a negative impact on their finances as they invested money in the pre-diagnosis, diagnostic, and post-diagnostic stages. All caregivers were at the post-diagnostic stage, where their children had received a definite diagnosis from the spe- cialist. The caregivers were overwhelmed with the cost of medications, other therapies and assistive devices. Page 11 of 22Abeasi et al. BMC Nursing (2024) 23:482 Caregivers did not receive any form of financial sup- port and they recounted the medications were expensive. The National Health Insurance Scheme did not cover all the medications, usually brands of medications covered were not preferred by the caregivers. They shared their experiences as follows: “The medication for the child is expensive and is really draining me financially, especially consider- ing the fact that I have no form of support and my income is also nothing to write home about. When they get finished and you do not have money, it is a big problem. The medications I buy are very expen- sive. Sometimes the National Health Insurance cov- ers some of the medications, but those are not the original medication brands prescribed by the doc- tors. I usually do not go for those ones. I usually buy the original medication brands. Monthly, I spent not less than five hundred Ghana Cedis (GH¢ 500.00) on medication. The greatest challenge is money to buy those medications to last for a month.” (P13, mother, 44 years). Apart from medications, other services like physiother- apy was expensive. A caregiver had this to say: “There is physiotherapy, there are other devices that we buy as well as medications. These are very expen- sive. Sometimes, there is no money to cater for her and her other siblings.” (P9, mother, 35 years). Some concerns were raised about lifting the children, especially in the absence of assistive devices, which could have made it quite easy for the caregivers. For caregiv- ers with little or no financial support, purchasing assis- tive device may be difficult. The challenge involved with lifting increases as the child with DD ages which is asso- ciated with weight gain. Increased weight requires care- givers to exert a lot of energy to lift their children with DD. A caregiver had this to say: “I have not been able to purchase a wheel chair for easy movement around, so I end up carrying him. Initially, it wasn’t so stressful. But now, day in and day out, he is gaining weight, so it is becoming increasingly difficult to carry him and be lifting him around like I used to do.” (P1, mother, 31 years). The job of caregivers was directly linked with their income levels. Being underemployed or finding difficulty balancing work and caregiving responsibilities often had a negative impact on their finances. Fully employed care- givers frequently had to request time off from work for hospital appointments. This affected their efficiency at the work place, however, they had no options. It was also likely to lead to their dismissal especially if the institution is private. One caregiver asserted: “I am a nurse, and I am supposed to be on duty. I frequently ask permission to absent myself from work. My employer knows my child’s condition, so I am able to seek permission so I can attend to her or bring her to the hospital. My employer does not com- plain whenever I ask permission, but I know others will complain.” (P3, father, 42 years). Self-employed caregivers had difficulty balancing their caregiving role with their job. They believed their role had caregivers interfered with their jobs. Caregivers had to desert their jobs which was the only option. This could afford the caregivers ample time to perform their caregiv- ing roles. The narratives below throw more light on these reports: “I used to be a seamstress, but now I have stopped because of him. He takes all my time. I don’t want to be in a situation where I take people’s clothing and I won’t be able to sew for them. Besides, taking care of him is quite stressful.” (P6, mother, 28 years). “Caring for him has affected my job. I was a local contractor who was hustling to take care of the fam- ily. Now I don’t get the chance to move around like I used to do before.” (P12, father, 39 years). “She is unable to stand or sit, so even if you get a work, you can’t leave her and go. Currently, I am not working. I use to sell but no more.” (P5, mother, 24 years). Theme 3: negative health outcomes Caregivers mentioned that their caregiving role affected them negatively. Three sub-themes were generated: decline in physical, mental and social well-being. In terms of the decline in physical well-being, caregivers men- tioned pain-related effects, fatigue, and compromised sleep. The decline in mental well-being was marked by lack of concentration, feelings of anger, sadness and anxi- ety. Sense of social isolation and changes in social rela- tionships were highlighted in the sub-themes of decline in social well-being. Sub-theme: decline in physical well-being The participants highlighted that caregiving had multi- faceted impact on their physical well-being. Caregivers’ ability to perform physical activities and carry out social roles were hindered by physical limitations and experi- ences of low back pains, body pains, fatigue, poor and compromised sleep. Caregivers observed deterioration Page 12 of 22Abeasi et al. BMC Nursing (2024) 23:482 in physical well-being, which hampered their ability to achieve optimal functioning. Thus, carrying out normal daily tasks was marked with exhaustion and discomfort. Pain-related effects Pain-related effects were mentioned by caregivers. They mentioned they experienced low back pains and body pains which they attributed mainly to carrying the chil- dren with DD around whilst performing other activities. Two caregivers shared their experiences as: “You know…. you have to carry her wherever you go. When I am going to church, she’s at my back. When I am going to the market, she is at my back. When I am going to the hospital, she’s at my back. She can- not walk so you have to carry her. I have low back pains and feel very tired. The only instances I do not carry her is when there is someone at home espe- cially the father. Even in those instances, I am in a hurry to come home.” (P5, mother, 24 years). “It is something I did not expect but it has come. Sometimes I really find it difficult. Caring for him has been stressful. I experience body pains, back- pains.” (P9, mother, 35 years). Caregivers experienced body pains and resorted to tak- ing over-the-medications. Though the caregivers knew taking unprescribed medications had negative conse- quences, they had to take the medications. Other care- givers found some time to rest. The essence of taking the medications and resting was to ensure the caregivers had renewed strength for the next day’s caregiving activities. Two caregivers shared their experiences as: “Sometimes, I feel very tired with a lot of body pains. You have to be lifting, feeding, bathing and do almost everything for him. You know I have two other chil- dren, so combining all those tasks makes it difficult. I end up relying on pain killers just to make sure I have enough strength to carry on for the next day. I know too much of pain killers is not good especially when they are not prescribed by the doctor but I’m unable to stop.” (P3, father, 42 years). “She is very heavy, carrying her leave me with a lot of body pains. Sometimes it is like you have been beaten. I carry her throughout the day unless of course she’s sleeping. If not, she’s at my back. She doesn’t like going to other people. If I attempt, she will cry uncontrollably. I sometimes take pain kill- ers, other times I try to sleep when she’s also asleep.” (P9, mother, 35 years). Fatigue Beyond the low back pain and the body pains, the care- giving demands affected the caregivers with some report- ing palpitations and exhaustion. They attributed the above to their inability to get adequate rest and sleep for themselves. One caregiver stated below as: “Sometimes, I get palpitations, my heart beats very fast. This I am sure is as a result of the stress in tak- ing care of him. You know you don’t actually get adequate time for yourself. The attention shifts from yourself to ensuring that your child has the best. Then you end up getting drained.” (P8, mother, 34 years). Some caregivers had to visit the hospital for medical attention because their experiences were beyond what they could manage at home. For some caregivers they were given medications while others were advised to reduce the stress. To reduce caregiving stress and burden, caregivers have had to rely on spousal support. Two care- givers shared their experiences as: “After feeding, bathing, and doing all the other tasks I feel very exhausted. My heart beats so loud. At a point I had to even visit the hospital, to go for medi- cations.” (P11, mother, 30 years). “I sometimes experience palpitations from my inability to sleep at night and also the stress in care- giving. I have even visited the hospital to check my blood pressure. They advised me to reduce my work load. Sometimes my husband supports but you can- not leave everything for him to do. I end up perform- ing most of the tasks.” (P6, mother, 28 years). Compromised sleep Caregivers observed that there had been changes in their sleep patterns, they did not have adequate sleep and most at times stayed awake during the night. The caregiv- ers did not sleep because of poor sleep patterns in their children with DD. It was extremely difficult to sleep dur- ing the day as well as they were engaged with caregiving activities. Two caregivers commented: “Sometimes, I become very restless. Sometimes in the night when I am sleeping, I have to get up just watch- ing him, looking at him. Thus, most at times whilst he is sleeping, I am awake. You know that in the day I can’t sleep because of the caregiving roles, so once I am unable to sleep at night, then during the day the work continues. So, the cycle of not having adequate sleep at night is really draining me. Most at times, I Page 13 of 22Abeasi et al. BMC Nursing (2024) 23:482 feel restless. I need adequate sleep.” (P8, mother, 34 years). “My son prefers to be active during the night, so you can imagine. How can you comfortably sleep whilst he is awake? It is practically impossible. When he’s awake, you also have to be awake. When he sleeps, you also sleep. Most nights I don’t have a good sleep and during the day I’ll be at work so no time to have some nap during the day.” (P7, father, 36 years). The challenge of some children with DD not being able to sleep well at night and being overly active at night had been reported to the hospital. However, the side effects of the prescribed medications deterred the caregivers from adhering to the right time of medication administration. A caregiver narrated: “As for having adequate sleep, it is out of the pic- ture. He does not sleep. He could go a week without sleeping well at night. In instances when he sleeps at night, it is very short. I am thinking, he thinks when he sleeps, I will run away. So, I am unable to sleep and I get tired. I even reported at the clinic about his inability to sleep and they gave him some medica- tions. However, the medications make him very weak so I don’t often give them to him.” (P6, mother, 28 years). Sub-theme: decline in mental well-being Caregivers mentioned that there were some changes in their mental well-being. They mentioned they could not concentrate, they experienced sadness, anger and anxiety. Additionally, they blamed themselves and others. Lack of concentration Caregivers expressed that they could not concentrate and were easily forgetting things because their thoughts were always flooded with that of their children. It caused them to make some unavoidable mistakes on their job. They shared their experiences as: “It’s too tough, it has really affected me to be frank psychologically it has affected me. It is something I did not expect but it has come. it’s so frustrating and I can’t concentrate. At work I easily lose focus of what I am doing. Sometimes some mistakes are so avoidable but I still go ahead and make them because of lack of concentration.” (P2, mother, 35 years). “It’s interesting how I easily forget these days. Some- times, I’ll keep something in the room. Only the next day I try to recollect where I have kept them, I don’t even remember where exactly I placed them. I have to search and search till I find them or sometimes even forget about the searching because I am unable to find the thing.” (P4, mother, 27 years). “For me, I am unable to think clearly. My thoughts are always flooded with a lot of questions bother- ing on my child’s condition. I ask myself if ever my child will walk, will be able to have a fulfilling life. This even becomes worse when I see other “normal” children who are of my child’s age.” (P8, mother, 34 years). Anger Caregivers admitted that expressing anger was a natu- ral response to situations, however, the frequency with which they expressed anger was beyond normal. The issues were not things they needed to be angry with. Some had this to say: “I am a well composed person. I used to hardly react to issues. It was difficult to make me angry but off late I noticed I am losing myself. I am no longer me. I can’t find myself any longer. Why do I say so? It’s because I get angry when I truly I am not supposed to be. I guess it is as a result of the stress I am going through.” (P 11, mother, 30 years). “It’s normal to be angry once a while. But when it becomes continuous, then you can say that some- thing is really wrong. I get angry more often and I know this is not good for my health. I don’t know if I am right but I have heard that getting angry often may give you high BP.” (P7, father, 36 years). Caregivers were mainly angry towards themselves or oth- ers. The frequent expressions of anger had affected their relationship with their immediate family. One caregiver illustrated: “I easily become angry these days. It used not to be like that. I noticed that with the least provoca- tion then I get angry. I think it’s even affecting those around me in a way. They feel I would scream or shout at them so they as much as they can to avoid having contacts with. Sometimes I would regret my actions but most often you can turn back the hands of time.” (P2, mother, 35 years). Sadness Caregivers felt sad and at times cried. This feeling is usu- ally triggered when caregivers are alone or isolated. Two caregivers illustrated: Page 14 of 22Abeasi et al. BMC Nursing (2024) 23:482 “I don’t know how to describe how I sometimes feel to you. I sometimes feel very sad. I can be in the room crying and asking myself a lot of questions. The cry- ing does not make me feel better but I become sad- der.” (P5, mother, 24 years). “The thoughts of having to deal with this difficult situation really makes me sad. You see when you started asking me questions, I began to have tears in my eyes. When I am outside, I try to show that I am strong but the story is different when I am alone. When I am alone, I feel sad and cry a lot.” (P4, mother, 27 years). The feeling of sadness was attributed to stress they were going through and the stigma they face from society. A caregiver shared her experiences as: “I feel down most of the times. Not knowing what the future holds and if really, I will be able to go through all these stresses. The society even makes it worse. The comments they will make are so painful. Some of them when you hear them you just can’t control yourself, the only response that comes is tears flow- ing down your eyes.” (P13, mother, 44 years). Anxiety Another theme that evolved was caregivers being anxious about how the caregiving process was going to evolve. P2 and P10 expressed their views as: “Personally, I don’t know what the future holds for my son. I keep thinking about how our lives, I mean myself and my child, will evolve.” (P2, mother, 35 years). “When you cannot predict what will happen to your child it’s really disturbing. Sometimes you feel like your hopes and aspirations have been brought to a halt.” (P10, mother, 29 years). Sub-theme: decline in social well-being Caregivers expressed that caregiving affected their social interactions and relationship. Caregivers mentioned that they felt isolated and were unable to take part in social functions because it was difficult to manage their chil- dren in public and also because of the negative attitudes from the public. Hence, to avoid these, they stay at home. Some caregivers had this to say: “I hardly go for social functions like funerals, wed- dings and others. If the ceremony is not really close, I mean if it is not family-related ceremonies you won’t find me there. I stay at home most often. When you take her, you may have to feed her, she will soil her- self and yourself as well. She will also cry especially when she sees crowd and all attention will be drawn towards you. Some people will say take her for walk and all that. To avoid all of these, I stay at home.” (P2, mother, 35 years). “I have lost interest in the activities I use to enjoy, so most often you would find me indoors. I tell myself it’s better not to hear anything form people which will irritate me and create problems for me.” (P9, mother, 35 years). For some caregivers, they defied all odds and attended public gatherings, however, they kept to themselves dur- ing these gatherings. So, though they were in public, they were still socially isolated. A caregiver narrated: “I can’t mingle as I used to. I have a feeling when I approach people they talk about my situation and my ridicule me when I am not even around. Because of that I do go out very often. When I do, I try as much as I can to keep to myself so that people do not insult or laugh at me.” (P5, mother, 24 years). Caregivers mentioned that there had been changes in their social relationships. The changes had affected the relationship between their partners/spouse, their fami- lies, friends and society at large. Some caregivers nar- rated their experiences as: “As for the rejection and the stigma it is not easy. Initially, there was a battle between myself and my husband’s family. They said they don’t have such children in their family and that it was coming from my family. As it stands now, I don’t have a cordial relationship with them like I use to have. Even now my husband is also behaving in some way, anytime I ask for money to buy something for the child, he tells me he is not having money which I know he has.” (P9, mother, 35 years). “Once your child is a special child, you lose your friends. Currently speaking, I don’t have friends. All my friends are gone. They just don’t want to have anything to do with you any longer through no fault of yours.” (P6, mother, 28 years). “There is so much discrimination. Society makes you feel there is something really wrong and as a result of that you and the child should not come close to peo- ple. The public stares are enough to bring you down any day.” (P14, mother, 26 years). Page 15 of 22Abeasi et al. BMC Nursing (2024) 23:482 Theme 4: coping strategies Caregivers expressed how they have been dealing with the stress they go through. Some coping strategies were adaptive, others were maladaptive. One adaptive cop- ing mechanism frequently mentioned was prayer. They expressed that anytime they felt overwhelmed, they resorted to prayer, and the prayer really made them feel good afterwards. Others expressed that they encouraged themselves. Some caregivers also had some support from their families. Other caregivers blamed themselves, oth- ers, or God as a way to deal with stress. Sub-theme: adaptive coping Caregivers included in the study relied so much on prayer to a higher being. They mentioned it was an ave- nue to pour their hearts out. They felt better after prayer because they got the opportunity to talk about their problems not with man but God. Some caregivers had this to say: “…. What has really helped me all these periods is prayer. I pray a lot by myself. Anytime I pray, I feel relieved as if a burden has been lifted from me.” (P8, mother, 34 years). “One thing that has really helped me cope is prayer. In instances where the feeling is uncontrollable but, at the same time, you have no one to talk to, the option becomes God. And for God, the only way we can talk to him is through prayer.” (P9, mother, 35 years). Encouraging themselves as caregivers was also used as a coping strategy. The caregivers used the opportunity to talk to themselves about the situation. The encourage- ment was mainly based on positive things. Some caregiv- ers expressed their views as: “I encourage myself a lot. I tell myself; it shall be well with me and my child.” (P10, mother, 29 years). “If you don’t encourage yourself, nobody will do that for you. I talk to myself a lot and encourage myself. After all, I can’t change the situation.” (P12, father, 39 years). Caregivers were able to cope due to the support of their partners and children. Some partners fully understand that the caregivers are not to be blamed for the happen- ings and a such offer them the needed support. Support is mainly emotional. Some of the caregivers shared their experiences as: “My family has been very supportive as well as my other children. My husband is educated, so he is fully aware it is no fault of mine, and hence I cannot be blamed for having a child with a disability.” (P2, mother, 35 years). “My husband has been helpful. He is a pastor, so he encourages me a lot. When I’m sad, down and feel very worried, he advises and encourages me not to worry. He tells me that worrying will not change the situation and that we should leave everything to God.” (P10, mother, 29 years). Sub-theme: maladaptive coping Shifting blame was identified as a way of dealing with stress and making some caregivers feel better. They either blamed a supreme being for failing her after many years of trust. A caregiver mentioned: “As hard as I try, there are moments when I question God about what is happening in my life and to my child. Why did he have to let it happen to me? Espe- cially when over the years I trusted him so much.” (P8, mother, 34 years). Caregivers believed negligence and lack of prompt response from health workers caused the negative out- come on their children. Issues surrounding delivery and post-delivery care were cited as the cause of the DD. A caregiver shared her experience as: “My brother is outside the country and has explained to me what really causes such conditions. He told me that when there is a delay in delivery or if the child is pulled wrongly during delivery, such conditions can develop. When I went to deliver, it took so long for the baby to be delivered, and when the baby came, she was blue and needed special care. And so, when I reflect on such issues, I blame the midwives and doc- tors for my child’s condition.” (P10, mother, 29 years). Caregivers blamed themselves for getting pregnant at an old age. They believed there was a connection between old age and giving birth to a child with DD. A caregiver illustrated: “Sometimes, I blame myself. I was told some of these conditions occur when you give birth in your old age. At the time I became pregnant, I was 44 years old. Maybe if I had not been pregnant in the first instance, the child would not go through this.” (P13, mother, 44 years). Page 16 of 22Abeasi et al. BMC Nursing (2024) 23:482 Discussion The current study explored the experiences of caregiv- ers’ children with DD using SPM as a framework. The use of the SPM did not limit the findings of the current study. Though the foundation of qualitative work is rich, detailed descriptions, but in a highly contextualised case, a weak framework may cause the details to become a story that is hard to adapt to different contexts [44]. The use of SPM helped make sense of complex social inter- actions and phenomena and facilitated a more explicit sense-making process. The experiences and coping mechanisms of mothers and fathers did not differ in the current study. Participants in the current study were mostly females and reported that caregiving was stressful. The finding of the current study confirms another study which reported that being a female caregiver is linked with high levels of stress [55]. Also, stressful caregiving experiences are linked with low income levels [56] and most caregivers were unemployed or underemployed. Additionally, being married has been reported to buffer the stressful caregiv- ing experience by providing certain resources [57] but half of caregivers were not married or had strained mari- tal relationships. Perception of the caregiving role Caregivers in the current study reported that caregiv- ing was a highly stressful experience. One of the primary stressors in the SPM is the burdensome nature of care- giving. The diagnosis of DD alone has been identified as a significant predictor of stress among caregivers [58]. This may affect the caregiver as well as how they handle their children with DD. Parents experiencing high levels of stress may respond in several negative ways, includ- ing being less responsive towards the child, exhibiting an authoritarian style of parenting, and exhibiting neglectful behaviour [59]. Other outcomes of stress include being inconsistent with the disciplining of a child with a disabil- ity, having unrealistic expectations for the child with DD, and poor guidance [60]. The SPM affirms that, stress- ful caregiving experiences may lead to negative mental health outcomes for caregivers. Caregivers stated that caring for a child with DD was time consuming. The National Alliance for Caregiving in collaboration with American Association of Retired Per- sons (AARP), reported that comparing the intensity of caregiving among children with special needs and adults with special needs, the former was quite intense and this was attributed to the number of hours involved in pro- viding care [61]. It is estimated that the average number of hours spent providing care for a child with special needs was 29.7 h per week, which is more than the aver- age 18.9 h per week spent caring for adults with special needs. The difference amounts to 11 h per week [61]. A systematic review assessing the daily patterns of time used by parents of children with complex needs revealed that these parents spent considerable time performing healthcare-related tasks beyond the normal parenting role [62]. This increased time commitment affects their ability to perform other tasks, including work, leisure activities and personal care [62]. As a result, most care- givers end up giving up on employment opportunities because they find it difficult to balance work with care- giving [62]. Stressors associated with caregiving In the context of the SPM, the current study identified both primary and secondary stressors. Primary stress- ors included the ADL needs of the child, communica- tion barrier, managing challenging behaviours, child’s health needs and unmet educational needs. The second- ary stressor identified was economic burden. Caregiv- ers mentioned that assisting their children with ADLs was a source of stress, consistent with the SPM, which identifies ADL ability of the child with DD as a primary stressor. For example, Maridal et al. reported a correla- tion between psychological distress and performance of feeding ADL in caregivers of children with neurodevel- opmental disorders [32]. Challenging behaviour exhibited by the children was identified as a main source of stress by caregivers of children with DD. The SPM and other studies recognize challenging behaviour as a primary stressor [63–65] and is linked to depression in caregivers [66, 67], distress [68], poorer family functioning [69], caregiver self-reported physical health problems [36, 70], fatigue [40], caregiving burden [20, 71], and poor immune responses in caregiv- ers [72]. Behaviour problems in children have been cat- egorized as internalising and externalising behaviours [73]. In the current study, caregivers predominantly men- tioned externalising behaviours such as hyperactivity, poor impulse control, and aggression [73] as the sources of stress. Some studies have argued that the exhibition of a dominant dimension of behaviour problems, is influ- enced by the developmental stage of the child [73] with externalising behaviour more common in younger chil- dren and internalising behaviours in adolescents [74]. In the current study, mean age of children with DD was 6.28 years, possibly explaining why externalising behaviours were mainly mentioned by the caregivers. Caregivers identified challenges with communication as a stressor. Communication skills of a child with DD has been strongly linked to the levels of caregiver stress [75]. The current study reported that poor communica- tion skills led to high levels of stress and vice versa. Simi- larly, [76] reported that there was a statistically significant relationship between communication skills and caregiver wellbeing. Comparing children with DD to typically Page 17 of 22Abeasi et al. BMC Nursing (2024) 23:482 developing children, children with DD exhibit some delay in their language development, articulation, and fluency [76]. This makes their level of communication very lim- ited because of their inability to comprehend language. Caregivers understood the health needs of their chil- dren with DD; therefore, they did not underestimate the need for frequent medical assessment and care. Frequent visits to the hospital was identified as a source of stress. A systematic review indicated that children with DD were more likely to visit the emergency department compared to children without DD [77]. Similarly, [78] posited that children with intellectual and developmental disabilities use inpatient and emergency department services care at 1.8 times the rate of the general population. Frequent hospital visits disrupt caregivers’ schedules of activities and create additional stress, especially when healthcare facilities are far from home. A study shows positive rela- tionship between caregiver stress and living more than 25 km from a healthcare facility or more from the care- giver’s residence to the health facility has been reported [79]. The distance created transportation difficulties for the caregivers in transporting their children to a health facility for care. Caregivers living in under-resourced or more distant areas from the health facility could attribute these issues to delaying or missing the child’s appoint- ment [80]. During the extended journey to a healthcare facility, behavioural issues could intensify, leading to the child becoming increasingly uncooperative, thereby lim- iting the value of the visits [81]. Consequently, the child’s condition, cognitive functioning, and social interaction may not able to be improve and/or could even worsen. Additionally, caregivers were worried about the edu- cation of their children. They reported difficulty finding and maintaining appropriate schools for their children with DD. This challenge of unmet educational needs for children with DD, is similar across low-, middle- and high-income countries. Tilahun et al. found that the majority of caregivers (74.5%) mentioned that their chil- dren did not have an appropriate educational provision [82]. Ambikile and Outwater reported that caregivers had social challenges pertaining to the child’s education as a result of the inadequate number of schools [83]. In their study, caregivers, had to spend a lot of time in try- ing to secure a school that could take their children. Con- sistent with the above studies, [84] reported that scarcity of educational activities as one of the main stressors for caregivers. This is known to impair the quality of life of the caregiver. Every parent would like their children to have access to education so they can become indepen- dent. Thus, not having access may be quite stressful for the caregivers. Economic burden emerged as a significant stressor caregivers. They reported that the high cots associated with medication, diagnostic procedures and other related treatments had a negative impact on the finances. Con- sistent with the findings above, [85] and [86] reported that female caregivers experienced economic hardships as a result of increased expenses involved in health and transport, loss of their jobs as caregivers and a lack of savings. Caregiving had a negative effect on caregivers’ finances [32] because they were mostly housebound and had limited opportunities for working outside the home [87]. In many LMICs like Ghana, there is usually little or no governmental support which could lead to increased poverty. Consequently,   this situation could affect not only the caregiver but also the entire family. Studies have found a strong correlation between disability and pov- erty. The presence of disability heightens poverty risk and vice versa [88]. Caregivers reported that caregiving responsibilities often led to an inability to work, job loss, decreased work output and frequent excuses from work. The SPM identi- fies job strain as a secondary stressor that could affect the caregiver’s health negatively. Stabile and Allin reported described three pathways of economic cost related to caregiving: direct costs (related to the child’s disabil- ity), indirect costs (related to family coping strategies), and long-term costs (related to child’s future economic performance) [87]. Caregivers with children with dis- abilities frequently reduce their working hours or stop working altogether to meet caregiving demands[84, 87, 89] and this is consistent with the findings of the current study. This could be explained by the fact that the care- giving demands are often overwhelming coupled with inadequate social support which may lead caregivers to make such decisions about work. In the current study, few participants were employed in the formal sector, while most were involved in the informal sector. Regard- less, caregiving had made some caregivers decide to quit their jobs because their time was diverted into caregiving such that they could no longer support their businesses. Others, too found that the hours involved in caregiving did not allow them to effectively combine or continue with their jobs and had to quit. Brehaut and colleagues reported that caregivers of children with disabilities were more likely to be unemployed [90]. In the this study, most caregivers were unemployed (8 out of 14). Negative health outcomes Caregivers in the current study reported experiencing low back pain, headache and general body pains. This aligns with findings from other studies that have high- lighted low back pain [28], generalised body aches [41]. Factors that have been associated with pain-related effects in caregivers include assisting with transfer the of children, caregivers mood and history of pain effects [91], dealing with problem behaviours and levels of dif- ficulty in performing daily activities [28], regular carrying Page 18 of 22Abeasi et al. BMC Nursing (2024) 23:482 of the children [41]. Pain-related effects are something to be worried about because the caregivers may resort to poor coping mechanisms. For example, some care- givers in the current study resorted to regular abuse of analgesics which may have negative health consequences on their health. Again, increased pain related symptoms could interfere with the amount of available time needed to provide care for the child with DD. In the current study, caregivers reported having inter- rupted sleep, restlessness at night and frequent awak- enings. Consistent with the above, other studies have documented similar sleep problems among caregivers including lack of sleep, altered sleep patterns, increased wakefulness after sleep, and reduced sleep duration [38, 92, 93]. Caregivers in the current study attributed the sleep changes to worrying and poor sleep patterns in their children with DD. Similarly, [94] reported that changes in the sleep patterns of children with DD may negatively influence the sleep patterns and daytime func- tioning of other family members. Poor sleep quality has been linked to increased levels of stress, anxiety and depression [95]. Psychologically,  caregivers reported a lack of concen- tration, anger, shifting blame and feelings of sadness. The SPM identifies changes in the psychological well- being of the caregiver as outcomes of caregiving. In line with the above study, a qualitative study examining the burden of caregivers of children with CP, reported that mothers experienced guilt, blame, and worry in rela- tion to the future of the child with DD disability [96]. In a qualitative study, Asa et al. reported caregivers feeling frustrated, sad, angry, worried, inferior due to the rejec- tion of their children by other children without disability [86]. Caregivers in the current study reported that they were anxious about the future. Gomez et al. reported in a literature review that caregivers had concerns about the children’s future, attributed to the caregivers identifying that they had limitations in providing support for them [97]. In their systematic review, [15] posited that one of the themes identified was caregivers worries about the future. Other studies have reported the same [98, 99]. It is possible caregivers of the current study had little or no emotional support, as many mentioned feelings socially isolated and having strained social relationships. In the current study, caregivers reported social isola- tion mainly due to the difficulty of managing the child with DD in public and negative attitudes from the pub- lic. Consistent with the above, [96] reported that care- givers felt a sense of isolation in society. Mkabile et al. further explain that caregivers felt ashamed about their child’s condition, which influenced their inability to take them out, thus hiding them from the community to avoid discriminating and stigmatising them [15]. Lamptey reported that parents had difficulty managing behaviour challenges in children with IDD in public [100], lead- ing to social isolation. Though related but not the same concept, other studies have found a relationship between informal caregiving and loneliness [101, 102]. Loneliness refers to the feeling of poor quality or size of the caregiv- er’s social network while social isolation is the perception of the caregiver that he or she does not belong to society. In terms of relationships, caregivers reported strained relationships with partners, family, friends, and soci- ety at large, which means that their social network size has reduced leading to a feeling that they are no longer needed in society. The SPM identifies family strains as a secondary stressor meaning they could lead to negative physical and mental health outcomes. Consistent with the current study, the findings by [86] showed that care- givers experienced reduced social interaction. Caregiv- ers explained it was a result of fathers not accepting their children with disabilities, increased time spent providing care for the child and stigmatisation and discrimination towards their children with disability. Coping strategies Caregivers used both adaptive and maladaptive cop- ing strategies in caring for their children. The caregiv- ers identified that they used prayers to cope. A review of the literature indicates that one of the main mechanisms used in coping with stress associated with caring for a child with DD is the use of spirituality [82, 103, 104]. Asa et al. in a qualitative study reported that all partici- pants in their study mentioned that they prayed to God [105]. Resorting to religious coping has been identified as an effective way of coping with stress [106]. The exact mechanism by which it works cannot be determined, however, it may be because it helps in accepting the cur- rent situation and accepting to deal with it according to God’s will [15]. Additionally, religious belief may produce endurance and resistance in individual’s dealing with stress [106]. Engaging in religious coping is likely to lead to being calm, feeling peaceful and being less stressful. While some studies support the idea that religious cop- ing may reduce stress and other mental health outcomes, other studies did not find such a relationship both in the short term [107] and the long term (Lyons et al., 2010). Some caregivers in the current study mentioned that they depended on themselves to cope with the stress associated with caregiving. Asa et al. reported that care- givers used self-reliance to cope with challenges in car- ing for children with disabilities [105]. They report that caregivers relied on their own capabilities. In the current study, caregivers sought support from family and friends. It was emotional support and they believed it helped them to deal with the stress involved in caregiving. Con- sistent with the above, [106] identified seeking support (37.8%) as the second most useful coping resource. The Page 19 of 22Abeasi et al. BMC Nursing (2024) 23:482 findings of the current study indicate that some caregiv- ers use maladaptive coping strategies to deal with stress. Specifically, the use of blame was quite significant. Stud- ies have indicated that blame is used as a defense mecha- nism to avoid feelings of guilt, sadness, powerlessness, and shame [108]. Limitations of the study There are some limitations to the current study that are typical of qualitative research.The translation of the inter- view transcripts was done from Twi to English, this car- ries inherent limitations that need to be acknowledged. Some words in Twi do not have direct translation in Eng- lish; in some cases, words near in English meaning are used or adopted to (re)present participants’ experiences. Our findings might not apply to all caregivers of chil- dren with disabilities due to potential bias selection. A few caregivers who possessed significant insights might not be attending the Neurodevelopmental clinic at the KBTH, which would have prevented them from taking part. Perceptions may differ among caregivers of children with disabling conditions that were not included in this sample, despite the fact that the children of the caregivers in this study had a wide range of diagnoses. Recommendations Based on the findings of the current study, the authors recommend that: First and foremost, programmes aimed at helping care- givers change their perception should be instituted. Neg- ative perception of the caregiving roles and process could impact negatively the health and well-being of caregivers. Programmes that could help the caregivers perceive their caregiving role more positively should be implemented Ministry of Health and Ghana Health Service. Second, stress management programmes should be instituted for caregivers of children with DD. The pro- grammes should compromise those that they can do without support at home such that days during which they do not bring their children to the hospital, they can still practice at home. Third, the Ministry of Health together with other stake- holders should implement a national Caregiver Policy, wherein, under the policy, caregivers of children with DD will undergo regular screening assessing physical, psychological and social health. The screening could be incorporated into the regular clinic visits of the child with DD. Caregivers who perform poorly on the screening tool may then be given further assessment and support. Lastly, a support group should be created, wherein caregivers are given the opportunity to share their expe- riences and coping resources. This could be a strong buff- ering system for caregivers. A different meeting day could be problematic, as caregivers already have full schedule associated with their caregiving role. Thus, these sup- port groups could be incorporated into the normal clinic attendance. Conclusion The findings of the current study as mirrored in the con- text of the SPM highlights that caregivers have varied caregiving experiences and most express negative con- sequences mainly affecting their physical, psychologi- cal and social well-being. Thus, the health of caregivers should be prioritized as a caregiver who is healthy may translate into providing proper support for the child with DD, subsequently, improving the well-being and overall quality of life of the child with DD. The SPM emphasizes on how various factors are linked in providing nega- tive health outcomes in the caregiver, a comprehensive approach which considers how these factors are linked, should be used in addressing the caregiver’s challenges. Supplementary Information The online version contains supplementary material available at https://doi. org/10.1186/s12912-024-02142-1. Supplementary Material 1 Acknowledgements The authors thank all caregivers of children with developmental disabilities who accepted our interview and shared their views with us. We appreciate Ms. Faith Esinam Wormenor who aided data collection. We also thank Dr. Paul Agyei Kwakwa for critical review of this manuscript. Author contributions All authors participated in the study design. DAA collected the clinical data, and data analysis was conducted by all the investigators. DAA wrote and revised the draft and subsequent manuscripts. NGN, EB and JA assisted with drafting and revising the manuscript. All authors read and approved the final manuscript. Funding The study received no funding. Data availability The authors confirm that the data supporting the findings of this study are available within the article and its supplementary materials. Declarations Ethics approval and consent to participate The study gained approval from the Human Research Ethics Committee (HREC) of the University of Witwatersrand. The Scientific and Technical Committee also approved it, as did the Institutional Review Board of the Korle-Bu Teaching Hospital, with approval numbers KBTH-STC/00021/2021 and KBTH-IRB/00021/2021 respectively. The authors obtained informed consent from all participants. There was no need to seek consent from the parents/guardians of children with DD because they were not the focus of the study. All methods were carried out in accordance with relevant guidelines and regulations. Consent for publication Not applicable. Competing interests The authors declare no competing interests. https://doi.org/10.1186/s12912-024-02142-1 https://doi.org/10.1186/s12912-024-02142-1 Page 20 of 22Abeasi et al. BMC Nursing (2024) 23:482 Received: 20 July 2023 / Accepted: 1 July 2024 References 1. Zablotsky B, Black LI, Maenner MJ, Schieve LA, Blumberg SJ. Estimated preva- lence of autism and other developmental disabilities following questionnaire changes in the 2014 national health interview survey, Natl. Health Stat. Report, vol. 2015, no. 87, 2015. 2. Zablotsky B, Black LI, Blumberg SJ. Estimated prevalence of children with diagnosed developmental disabilities in the United States, 2014–2016. NCHS Data Brief. no. 2017;291:1–8. 3. World Health Organisation (WHO). Developmental difficulties in early child- hood- Prevention, early identification, low- and middle-income countries. 2012. 4. Lundqvist LO. Prevalence and risk markers of behavior problems among adults with intellectual disabilities: a total population study in örebro County, Sweden. Res Dev Disabil. 2013;34(4):1346–56. https://doi.org/10.1016/j. ridd.2013.01.010. 5. McQuire C, Hassiotis A, Harrison B, Pilling S. Pharmacological interventions for challenging behaviour in children with intellectual disabilities: a systematic review and meta-analysis. BMC Psychiatry. 2015;15(1):67–73. https://doi. org/10.1186/s12888-015-0688-2. 6. Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil. 2011;32(2):419–36. https://doi.org/10.1016/j.ridd.2010.12.018. 7. Olusanya BO, et al. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: a systematic analysis for the global burden of Disease Study 2016. Lancet Glob Heal. 2018;6(10):e1100–21. https://doi.org/10.1016/S2214-109X(18)30309-7. 8. Coetzee O. Caregiving experiences of South African mothers of adults with intellectual disability who Display Aggression. Clinical Case Studies; 2016. 9. Abeasi D. Depression and quality of life among family caregivers of stroke survivors in Ghana: the role of social support. Arch Ment Heal. 2020;21(2):83– 9. https://doi.org/10.4103/AMH.AMH_21_19. 10. Bizzego A et al. February., Child disability and caregiving in low and middle income countries: Big data approach on open data, Res. Dev. Disabil, vol. 107, no. 2021, 2020, https://doi.org/10.1016/j.ridd.2020.103795. 11. Moosa-Tayob S, Risenga PR. Challenges of caregivers providing care to children with disabilities at non-governmental organisations in Tshwane townships, South Africa. Afr J Disabil. 2022;11:1–10. https://doi.org/10.4102/ AJOD.V11I0.930. 12. Mathye D, Eksteen C. Investigation of challenges experienced by caregivers of children with disability in rural South Africa: caregivers and rehabilitation professionals’ perspectives, Physiotherapy, vol. 101, no. November 2017, p. e961, 2015, https://doi.org/10.1016/j.physio.2015.03.1815. 13. Adithyan GS, Sivakami M, Jacob J. Positive and negative impacts on caregiv- ers of children with intellectual disability in India. Disabil CBR Incl Dev. 2017;28(2):74–94. https://doi.org/10.5463/DCID.v28i2.595. 14. Beighton C, Wills J. Are parents identifying positive aspects to parent- ing their child with an intellectual disability or are they just coping? A qualitative exploration. J Intellect Disabil. 2017;21(4):325–45. https://doi. org/10.1177/1744629516656073. 15. Mkabile S, Garrun KL, Shelton M, Swartz L. African families’ and caregivers’ experiences of raising a child with intellectual disability: a narrative synthesis of qualitative studies. Afr J Disabil. 2021;10:1–10. https://doi.org/10.4102/ AJOD.V10I0.827. 16. Scior K, Werner S. Changing Attitudes To Learning Disability, 2015. [Online]. Available: https://www.mencap.org.uk/sites/default/files/2016-08/Attitudes_ Changing_Report.pdf. 17. Badu E. Badu_Experiences of Ghanaian parents intellectual disability. J Soc Incl, 7, 1, 2016. 18. Oti-boadi M. Exploring the lived experiences of mothers of children with intellectual disability in Ghana. Sage Open. 2017;1–12. https://doi. org/10.1177/2158244017745578. 19. Negota AJ, Mashegoane S. Mothering children with schizophrenia in a village setting: a multiple case study. J Psychol Afr. 2012;22:259–62. https://doi.org/1 0.1080/14330237.2012.10820527. no. 2. 20. Vogan V, Lake JK, Weiss JA, Robinson S, Tint A. Factors Associated with Caregiver Burden among parents of individuals with ASD: Differences across Intellectual Functioning. Fam Relat. 2014;63:554–67. https://doi.org/10.1111/ fare.12081. 21. Vohra R, Madhavan S, Sambamoorthi U, St Peter C. Access to services, quality of care, and family impact for children with autism, other developmental dis- abilities, and other mental health conditions., Autism Int. J. Res. Pract, vol. 18, no. 7, pp. 815–826, Oct. 2014, https://doi.org/10.1177/1362361313512902. 22. Barros ALO, Barros AO, de Barros GL, Santos MTBR. Sobrecarga Dos Cuidadores De crianças E adolescentes com síndrome de down. Cienc E Saude Coletiva. 2017;22(11):3625–34. https://doi. org/10.1590/1413-812320172211.31102016. 23. Al-dujaili AH, Al-mossawy DAJ. Psychosocial burden among caregivers of children with autism spectrum disorder in Najaf province. Curr Pediatr Res. 2017;21(2):272–82. 24. Pearlin LI, Bierman A. Current Issues and Future Directions in Research into the Stress Process, 2013, pp. 325–340. 25. Wilborn-lee B. The effects of stress and Burden on caregivers of individuals with a chronic illness. Walden Univ, 2015. 26. van Ryn M, et al. Objective burden, resources, and other stressors among informal cancer caregivers : a hidden quality issue ? Y. Psycho-Oncolgy. 2011;52:44–52. https://doi.org/10.1002/pon.1703. 27. Pocinho M, Fernandes L. Depression, Stress and Anxiety among Parents of Sons with Disabilities, Psychol. Pract. Res. J, no. December, 2018. 28. Zamora MAL, Labao HC. Correlates of low back pain among Filipino caregiv- ers of children with disability: A preliminary study, Enferm. Clin, vol. 30, no. February, pp. 120–123, 2020, https://doi.org/10.1016/j.enfcli.2019.09.033. 29. Sit HF, Huang L, Chang K, Chau WI, Hall BJ. Caregiving burden among infor- mal caregivers of people with disability. Br J Health Psychol. 2020;25:790–813. https://doi.org/10.1111/bjhp.12434. 30. Farajzadeh A, Dehghanizadeh M, Maroufizadeh S, Amini M, Shamili A. Predic- tors of mental health among parents of children with cerebral palsy during the COVID-19 pandemic in Iran: a web-based cross-sectional study. Res Dev Disabil. May, 2021;112. https://doi.org/10.1016/j.ridd.2021.103890. 31. Power R, et al. Depression, anxiety and stress among caregivers of adoles- cents with cerebral palsy in rural Bangladesh. Disabil Rehabil. 2019;0:1–8. https://doi.org/10.1080/09638288.2019.1692378. 32. Maridal HK, et al. Psychological distress among caregivers of children with neurodevelopmental disorders in Nepal. Int J Environ Res Public Health. 2021;18(5):1–14. https://doi.org/10.3390/ijerph18052460. 33. Minichil W, Getinet W, Derajew H, Seid S. Depression and associated factors among primary caregivers of children and adolescents with mental illness in Addis. BMC Psychiatry. 2019;19:1–9. 34. Aneshensel C, Mitchell U. The stress process: its origins, evolution, and future. In: Turner RJ, Turner JB, Hale WB, editors. in Springer briefs in sociology. Sociol- ogy of mental health: selected topics from forty years. New York: Springer Science + Business Media; 2014. pp. 53–74. 35. Eisenhowera AS, Bakera BL, Blacher J. Children’s delayed development and behavior problems: impact on mothers’ perceived physical health across early childhood. Soc Sci Med. 2009;68(1):89–99. https://doi.org/10.1016/j. socscimed.2008.09.033.Children. 36. Eisenhower A, Blacher J, Baker BL. Mothers’ perceived physical health during early and middle childhood: relations with child developmental delay and behavior problems., Res. Dev. Disabil, vol. 34, no. 3, pp. 1059–1068, Mar. 2013, https://doi.org/10.1016/j.ridd.2012.12.002. 37. Fairthorne J, De Klerk N, Leonard H. Health of mothers of children with intel- lectual disability or autism spectrum disorder: a review of the literature. Med Res Arch. no. 2015;3:1–21. https://doi.org/10.18103/mra.v0i3.204. 38. Bourke-Taylor H, Pallant JF, Law M, Howie L. Relationships between sleep disruptions, health and care responsibilities among mothers of school-aged children with disabilities. J Paediatr Child Health. 2013;49(9):775–82. https:// doi.org/10.1111/jpc.12254. 39. Suzuki K, Tamakoshi K, Sakakibara H. Caregiving activities closely associated with the development of low-back pain among female family caregivers. J Clin Nurs. 2016;25:2156–67. https://doi.org/10.1111/jocn.13167. 40. Seymour M, Wood C, Giallo R, Jellett R. Fatigue, stress and coping in moth- ers of children with an Autism Spectrum Disorder. J Autism Dev Disord. 2013;43:1547–54. https://doi.org/10.1007/s10803-012-1701-y. 41. Nimbalkar S, Raithatha S, Shah R, Panchal DA. A qualitative study of psycho- social problems among parents of children with cerebral pa