Background
Intellectual disability (ID) diagnosis requires families as primary caregivers to support their children during the developmental stages of life. ID as a neurodevelopmental disorder limits intellectual functioning and adaptive behaviour during the developmental period of a child [
1]. ID ranges from mild, moderate, severe and profound impairment. The diagnosis affects the child’s communication, cognitive and self-care skills development, leading to dependency support living [
2]. Children with ID are prone to physical conditions, including obesity and constipation, often exposing them to misdiagnosis and underdiagnosis [
3], limiting their access to healthcare services. Early diagnosis of ID enables early intervention and enhances acceptance of the child by the community [
4].
Globally, ID affects approximately 2–3% of the general population [
5], and the prevalence of children under five is 3.2% [
6]. The incidence in low-income countries is 16.41/1000; in middle-income countries, it is 15.94/1000 persons, higher than in other countries, with approximately 9.21/1000 persons [
4]. South Africa experiences a lack of data on the prevalence of ID and is further dependent on the census.
ID diagnosis generally increases the lifelong dependency of the children on their families regarding self-care and support to thrive. As a primary caregiver, every family is an environment where essential interpersonal experiences of a child’s development occur [
7], including personality, behaviour, and attitudes. Even though families take the lead in raising these children, ID awareness and information among the carers has been a continued concern [
8]. In addition, information created for childrearing may not benefit caregivers of children with ID [
9]. In most cases, families of children with ID experience parenteral barriers, including limited knowledge related to a lack of resources or support [
10].
Past research established that children with ID are more at risk of experiencing childhood problems than their peers without ID [
11]. As most children with ID have a prevalence of developmental delay impacting their independence ability [
12], their care requires information and understanding of ID. Past research has shown that adequate knowledge is measured through the caregiver’s confidence in a particular realm or topic to declare the knowing of what, how, when and why questions that inform one’s attitudes and further influence one’s behavioural changes [
13].
Quality caregiving of a child with ID influences their developmental outcomes [
14]. It is noteworthy that parents’ understanding of the capacity to care for children with ID is assessed based on their responses to the needs of such children [
15]. Previous studies highlighted how the families were more reactive than proactive regarding caring for their children with ID, leading to social exclusion by their communities [
16]. Although the need for training of parents raising children with ID has broadly been investigated successfully [
17], exploring information needs on the care of ID among primary caregivers in rural areas has yet to be fully established.
South Africa surpassed an estimated population of 60 million, with more than 19 million people residing in rural jurisdictions. The country still needs improvement in service delivery problems, especially in rural states. The pastoral population’s life challenges are unique and mainly complex due to geographical and race/ethnicity characteristics [
18]. Previous studies on the experiences of families of children with ID in the South African rural context revealed challenges related to poverty, poor education, and unemployment, including limited transport to access professional services and support systems for ID [
19‐
22]. Furthermore, rural communities report low access to health services, including a scarcity of professionals and specialist care, exposing them to health risks resulting in shorter life expectancy [
23,
24].
Evidence from previous research established that the diagnosis of children with ID in rural areas is likely delayed due to geographic barriers to access services, causing health disparity for children compared to their peers in urban areas [
25]. This delay prevents families from receiving information relevant to planning and managing the child’s care, which is considered a way of simplifying the processes of the professionals [
26]. The family caregivers of children with ID require information including health specialists and rehabilitation services for their children, government support grants, networking and educational services [
27,
28]. The social model posits that the lack of information access experienced by caregivers of children with ID limits their parenting abilities and further impacts the support of the functioning level of their children [
29]. The study aimed to explore the family caregivers’ information needs regarding understanding the care of children with ID in rural areas to fill the gaps in the caring and management challenges of ID in the home environment. Adequate information by families regarding the care of ID is vital in meeting the support needs of their children with ID in rural areas. These require comprehensive care, support, and rehabilitation for children and their families. The study’s objective was to explore and describe the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa.
Methods
Study design
This qualitative explorative research helped the researcher facilitate data collection, analysis, and interpretation of the finding processes [
30]. The approach enabled an unrestrained process that explored the participants’ information needs regarding the care of children with ID in a rural home environment. The focus group discussion and in-depth individual interviews allowed participants to share their experiences caring for and managing a child with ID in a rural community. The first researcher recruited participants, collected data, analysed, and wrote manuscripts. The second author reviewed the manuscript.
Setting
The researcher conducted the study in the Capricorn district municipality of Limpopo Province, which is approximately 80% rural and estimated at 5.8. million population [
31]. The district is one of the five municipalities of the province and has a growing economic centre. It is known for providing better community services such as job opportunities, schooling, and health care facilities in the province. Thus, it attracts a high population density with a unique cultural heritage, diverse ethnicities, and five languages under 30 traditional authorities [
31,
32]. The district’s households in the rural community experience challenges regarding limited access to basic needs, including piped water, poor hygienic sanitation conditions and restricted access to health and education services. The high unemployment in this rural status contributed towards people migrating to other provinces for job opportunities, leaving most families to female and single-headed households [
33].
Participants and sampling
The study sampled 26 families from different tribal authorities of Capricorn district with the core function of directly caring for and raising children with ID in home environments. The vulnerability of family caregivers resulted in some hiding their children from their communities due to social stigma related to ID diagnosis. The researcher recruited participants whose children were accessing education and health facilities in their communities through purposive and snowballing sampling strategies. The strategies assisted the researcher in reaching those families not known to community facilities, including schools and health care services, as their children were not utilising such services. The family caregivers recruited, invited, and introduced other families who were relatives or neighbours or encountered them at churches or community meetings and met inclusion criteria to the researcher [
30]. Such families’ children were diagnosed with ID from hospitals in other provinces and private health care services. They did not use public services, fearing discrimination related to stigmatisation from their communities.
Eligibility criteria included any family caregiver above 18 years who was living and directly involved with raising children with ID and was voluntarily willing to share their experiences regarding caregiving informational needs in the rural home environment. Furthermore, the researcher’s judgement stayed instrumental in the selection of family caregivers whose children were of school-going age or over six years old, indicating that they were not recently diagnosed with ID. For most children at this age, healthcare professionals have already established their diagnosis of ID, as their developmental capabilities were able to be assessed with their peers at school. Furthermore, on this ground, the researcher’s opinion assumed that children were emotionally ready to express their feelings in their life circumstances. The researcher further believed such participants had adequate information to relate their experiences as primary family caregivers raising children with ID. The researcher excluded family caregivers of children with IDs less than 6 and above 19 years old and those family members who did not live with the children in a home environment.
The family caregivers were between 19 and 67 years old, and most left schooling at the secondary level. The sample comprised 16 mothers, one father, two grandparents (one grandfather and one grandmother), three aunts, two uncles and two guardians of the children with ID. Table
1 below indicates the participants’ demographic information and the profile of children with ID.
Table 1
The socio-demographic data of family caregivers and the profile of children with ID
Participants’ gender | Females | 22 | 85% |
Males | 4 | 15% |
Participant’s age distribution in years | 19–28 years | 3 | 12% |
29–38 years | 4 | 15% |
39–48 years | 11 | 42% |
49–58 years | 5 | 19% |
59–68 years | 3 | 12% |
Participants’ educational data | Degree | 1 | 4% |
Diploma | 3 | 12% |
Grade 11–12 | 13 | 50% |
Grade 8–10 | 5 | 19% |
Grade 4–7 | 4 | 15% |
Gender of children with ID | Males | 19 | 73% |
Females | 7 | 27% |
Health problems of children with ID | Epilepsy | 4 | 14% |
Speech | 10 | 37% |
Physical impairment | 2 | 8% |
Hearing | 3 | 11% |
Dental | 7 | 30% |
Most participants were females, 85%, showing that caring for children with ID was on their shoulders. Most men migrated to cities looking for jobs. Half of the participants left schooling before Grade 12, while few obtained tertiary qualifications. Participants indicated a need for more funds as a contributory factor for not proceeding to tertiary education. Most participants were unemployed at 61%. The interview guides helped the researcher to profile information about the children, including age, gender, and other health problems. In addition, the researcher asked participants for more details of medical treatment for those experiencing other health problems besides ID diagnosis. Participants reported their children with ID experiencing comorbidity problems, including speech and hearing, dental and epilepsy, requiring health care support. Female-headed households were at 38%, and single parents at 42%. Most children were males with fewer father figures. The ages of the children were between 6 and 17 years and mostly experienced speech problems at 37% and unattended dental issues, including missing teeth and tooth decay at 30%, requiring health care services. The dental problems were mainly related to the difficulty of the children with ID to identify and report their needs to their caregivers compared to their peers without ID.
Data collection
The researcher conducted 16 in-depth interviews followed by one focus group discussion of 10 family members raising children with ID in a home environment. The individual in-depth interviews enabled the asking of predetermined questions and focus group discussion triangulation to enhance the richness of data. The participants shared their experiences of caring for their children with ID in a rural environment with the first author. All family caregivers signed written consent to participate before the commencement of data collection. Observational field notes complemented capturing pertinent data not documented through the audio recorder, including the participants’ emotional expressions towards answering questions. Participants gave verbal consent for their narratives to be audio-recorded. The researcher maintained the anonymity and confidentiality of participants throughout the data collection process to protect their human dignity.
Semi-structured interview guides directed the interviews and focus group discussion to explore family caregivers’ experiences raising children with ID in rural communities. The researcher used professional assistance in translating interview guides into the Sepedi language, which is dominant in the district and understood by participants. The researcher was fluent in languages preferred by the participants. The interview guides for in-depth interviews and focus group discussion collected socio-demographic information under section A. The central question was asked about the experiences of raising a child with an intellectual disability, followed by probing questions. The guides enabled comparability amongst data sets of focus group discussions and in-depth individual interviews.
Data analysis
The researcher analysed data concurrently with the collection process. The inductive thematic data analysis with the assistance of the Atlas Ti software program followed qualitative analysis steps (Rubin & Rubin, 2012) [
34] of familiarising oneself with data, generating initial codes, searching emerging themes, reviewing them, and naming their related and subthemes. Data analysis consolidated individual in-depth interviews and focus group discussion data. The first researcher (MJM) translated data into English and transcribed audio-recorded information from both data sets on an Excel Sheet. The researcher read written transcripts with written observational field notes to acquaint oneself with the collected data. The observational field notes maximised analysis in documenting participants’ emotional and psychological status attached to their narratives, further increasing reliability and validity. The researcher allocated various codes to participants according to associated themes. The researcher removed any information linking participants to data to ensure anonymity and confidentiality. Transcripts were loaded to Atlas Ti software to arrange similar codes using the coding manager. The Atlas Ti assisted the researcher in handling multiple overlapping codes without losing their contexts. The researcher conducted content analysis to determine themes and subcategories from frequently occurring styles and patterns in the participants’ narrative statements. Data from both participant groups were duly categorised and compared, including examination of any connections, regularities, variations and peculiarities. The researcher summarised information into meaningful units, presented in thick descriptions and quotes from the participants to demonstrate their authenticated voice in the context of supporting literature-based evidence [
35]. The academic supervisor of the study confirmed the appropriateness of the findings.
Discussions
The study explored the information needs of family caregivers regarding the care of children with ID in rural home environments. The results established that most families as primary caregivers experienced information challenges regarding caring for their children’s challenging behaviour and the available support resources in their communities. Furthermore, the need for more information on social support structures in rural areas environment regarding the care and raising of children with ID restrains the inclusiveness of these children to participate in societal activities [
36].
Family caregivers needed information to understand and handle challenging behaviour and grooming of their children to possible independence. In support, past research found that parents seek information on the care of their children with ID from professionals to cope with the burden [
37]. On the other hand, research revealed that the knowledge of families of children on ID mostly depends on the type of information provided by the professionals educating them [
38]. In line with the findings, the previous research found a lack of dissemination to family caregivers of children with disabilities in welfare information by the Indian government [
39]. The results extend to prior studies that found information increasing, knowledge and understanding of the parents’ level of children with ID, further leading to self-advocacy in proactive decision-making on the care [
40].
Previous research that resonates with this study found that knowledge is good if shared with caregivers who require it to meet the children’s developmental needs [
41]. However, the empowerment of families of children with ID is mainly determined by their economic status and educational level [
42,
43]. In support, previous results indicate that the caregivers’ awareness of ID is allied to resilience ability, which mainly enhances the care of children with ID [
44].
This study is congruent with the reflection that reported that caregivers found the behavioural needs of their children with ID challenging to fit into other environments and required expertise to handle them [
45]. Behavioural challenges in ID may indicate the children need attention regarding stimulation, pain reduction, social escape and tangible reinforcement [
46]. Some children presented with impaired social interaction with other family and community members. Similarly, it was revealed that children with ID have few interactions with other people and experience rejection or isolation [
47]. This finding supports the study established that the environmental and social enablers, including inclusivity in activities by their communities, can determine the children’s social interaction [
48]. Congruent with these findings, previous results found that information given to the family caregivers on the children’s behaviour, including emotional changes and aggression, improved their skills to handle the child and further increased feelings of competence and confidence [
49].
Most family caregivers resorted to coping mechanisms that involve caretaking attachment and overprotective towards their children with ID. This finding resonates with the research that found that parents with less information on ID were inadequately involved in modelling behaviour that was adaptive to the development of their children with ID [
50]. The study results support the finding that Australian children with ID experience emotional and behavioural problems challenging to their caregivers [
51]. In addition, the conclusions aligned with the study, which found that in Spain, parents felt responsible for the happiness of their children and developed an overprotective approach towards their care [
52]. Comparably, a caretaking attachment bond mainly develops between the child and caregiver based on love, interaction, and the child’s feeling more uncomfortable in the caregiver’s absence [
53]. Hence, the overprotectiveness of children with ID sometimes makes it difficult for caregivers to combine their work life and the care of their children with ID [
52]. However, a similar study revealed that households with extended family members share the care responsibilities for children with ID, reducing the caring burden [
54].
The study highlighted the need for information to empower the family caregivers on the services available in the communities to offer them support, including counselling, social work, psychological care, and health care services for their children. The findings further resonate with the study, which reported that the caregivers of children with ID needed to be made aware of the support resources available to their health needs [
25]. Most families with children with ID are highly vulnerable and require support interventions for their well-being [
39]. This study highlights that family caregivers, primarily mothers, need information on counselling services to cope with the care challenges of raising their children with ID. In support of this finding, a study conducted in South Africa indicates that most children with developmental disorders were under the care of mothers who are primary caregivers [
55]. Similar research established that counselling of families of children with ID decreases their stress levels, increases their self-esteem and further reduces the risk of disorders related to anxiety [
56]. Furthermore, congruent with these findings, a study revealed that counselling was crucial in enabling family members to create a friendly, positive home environment for their children with ID [
57].
The information needed for health care services included medical, dental, and speech challenges experienced by the children with ID. Some family caregivers reported their children presenting with dental problems such as loose and missing teeth. Comparable studies found that caregivers could identify the dental pain of their children with ID through salivation and putting hands in their mouths more often than their typical peers [
58]. In addition, congruent with this finding, the speech of children with ID is more emotional and requires stimulation than their typical development peers [
59]. In alignment with this finding, accessing appropriate professional services in rural Australia was challenging due to geographical distances [
60]. In support, the study in South Africa revealed that public facilities experience a long list of bookings [
61,
62]. These reduce access to available rural support services and resources to cater for the needs of the children with ID and their families.
Suggestions and recommendations for practice
The study recommends prioritising the information needs of children with ID and their families to receive professional assistance. Policymakers should establish, support, and provide resources on awareness of ID within health and education facilities. Furthermore, the development of directive policies and regulations should strengthen the implementation of education and training programmes on ID awareness within societies. Collaboration of health care professionals and essential service providers, including teachers and educators in early childhood development centres and schools, should support the dissemination of information on ID to the public. In addition, the results recommend ID awareness campaigns and community education regarding the care of children with ID and the support of caregivers. Thus, training nurses, midwives, social workers, and other health professionals, including educators, is vital to enable them to provide ID awareness and train family caregivers. Training of available community healthcare workers and traditional and religious leaders on ID will equip them with the knowledge to be able to support the vulnerable family caregivers of children with ID. These will provide the families with continuous, valuable, updated information to help their children.
Furthermore, the study highly recommends collaborative professionals for training, empowerment, and providing psychoeducational interventions that will strengthen caregiver competence and confidence in ensuring continuity of the caregiving of children with ID from the home environments. Collaboration and coordination of educational facilities, social development, rehabilitation, and health care services will further enhance information on ID for the public. The study suggests that professionals should actively facilitate forming community support groups and home-based care services to interact and equip family caregivers with relevant information regarding ID awareness to reduce social stigma. Forming partnerships with family caregivers will strengthen information giving and access.
The study’s limitations involve data on the prevalence of children with ID in Limpopo Province that were not available. The study could not capture the experiences of family caregivers of children with ID not accessed through snowballing and known to community health care facilities. Fathers of the children with ID were less presented, limiting their narrative experiences on the caregiving of their children. The study has no information on professional facilities available for support services in rural communities.
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