The researcher has secured all data gathering tools, recordings and transcripts in a locked cabinet. The researcher will destroy these objects after keeping them under lock and key for 5 years. A code is used to identify all data gathering instruments, recordings and transcripts, of which only the researcher is aware of this code.

Table 3 illustrates the subthemes for each participant group.

The authors have presented the subthemes and suggestions that were made by both the parent and professional nurse participants in Table 4. The subthemes and suggestions were grouped in themes that were guided by one of the theoretical frameworks of this study, namely: The theory of family care during critical illness by De Beer and Brysiewicz (2019). In this theory, the core concept is empowerment and is made up of four sub-concepts: ‘Information sharing, Proximity, Garnering Resources and Cultural and religious cooperation’ (Williams 2024:91). These concepts and this theory will be discussed in detail later in this article.

According to the theory of family care during critical illness by De Beer and Brysiewicz (2019:22), information sharing is defined as the communication of truths about the patient and major illness among both nurses and parents, which increases everyone’s wisdom. Receiving information on a child’s status, care, progression and results broadens parent’s understanding, allowing them to best deal with a child’s illness (De Beer & Brysiewicz 2019:22). In the current study, the theme ‘information sharing’ incorporates the subthemes: Inadequate knowledge of autism, poor communication, poor listening skills, inadequate knowledge of the specific child and lack of an individualised nursing care plan.

Subtheme 1.1: Inadequate knowledge of autism: Parent participants thought that improved knowledge would improve awareness of the nurses, thereby translating into an improved nurse–parent relationship and better parental participation (Williams 2024:150). This was also supported by the nurse participants who perceived their understanding of autism to be minimal and wanted to be trained on nursing an autistic child (Williams 2024:151). The participants had the following suggestions:

‘The nurses must be educated on autism and have some sort of in-service training on autism. The nurses need more education on autism,’ (Parent participant 2)

Subtheme 1.2: Poor communication: Some parents reported bad occurrences with ineffective communication by hospital staff (Williams 2024:154). Parent participants believed their expert knowledge of their child was being ignored, leading to a difficult hospitalisation experience (Williams 2024:154). Some of the nurse participants agreed that if the nurse effectively communicated with the family, this would promote effective family involvement:

‘Nurses must communicate with the parent more so they can understand the child,’ (Parent participant 1)

Subtheme 1.3: Poor listening skills: ‘Nurses must listen to parents more’. Parents perceive nurses as experts in their children’s health, and when they are heard, they feel respected and cared for. This promotes effective parental participation; however, when nurses don’t listen, it is seen as disrespectful and arrogant. Conversely, when nurses listen, it fosters teamwork and promotes parental participation in the hospital care of autistic children. Nurse participants found listening to parents as a coping strategy to overcome their inadequate knowledge of Autism, enhancing the child, parent and nurse experience. They saw the parents as a knowledgeable partner, leveraging their expert knowledge for better nursing care:

‘The nurses must listen to what the parents are saying and not be offended because the parents know their child better than the nurses. They must not assume that the child is naughty but ask the parent what to do,’ (Parent participant 1)

Subtheme 1.4: Inadequate knowledge of the specific child: All participants agreed nurses needed to obtain a thorough medical history from the parents so that they would understand how to manage them correctly. From the following quotes, it is apparent that parent participants believe that taking a detailed history of their autistic child promotes effective parental participation and quality nursing care. They believe that detailed history allows nurses to plan care appropriately, meet their child’s special needs and ensure a pleasant hospital experience. This approach is seen as a caring attitude and willingness to learn. Nurse participants viewed detailed history taking as an empowering exercise to gather information about the autistic child, gain trust and involve parents in their care. They acknowledged the distinctiveness of every child and the significance in understanding their unique circumstances for effective nursing care:

‘I think firstly the nurses should have found out how I take care of my son at home, how I calm him down at home, what triggers aggressive behaviour in him, they should have found out about what he likes to eat. Get a detailed history from the parent,’ (Parent participant 6)

Subtheme 1.5: Lack of an individualised nursing care plan: Parent participants suggest that nurses should understand their children’s likes and dislikes, creating a suitable physical and psychological environment for their autistic children. This individualised care demonstrates a caring attitude towards the children and their parents. Nurse participants agree that understanding a child’s likes and dislikes is crucial for effective parental participation. This knowledge helps nurses provide better care, maintain parent and child happiness and deliver good nursing care. They acknowledge that each autistic child is unique and needs to be understood to plan effective nursing care and involve parents:

‘Music calms him down, they did not have any music to calm him down. I think firstly the nurses should have found out how I take care of my son at home, how I calm him down at home, what triggers aggressive behaviour in him, they should have found out about what he likes to eat. Try and keep to the child’s routine.’ (Parent participant 6)

De Beer and Brysiewicz (2019:22) define ‘proximity’ as the nurse’s readiness to assist the parent’s access to their child (Williams 2024:190). The nurse should facilitate parent’s physical and emotional closeness to the child, permitting them to monitor the situation, follow the treatment given to the child and establish confidence and trust in the care received by the patient (De Beer & Brysiewicz 2019:22). When parent’s entry to their admitted child is limited, unpleasant feelings like dread, worry and powerlessness are exacerbated (De Beer & Brysiewicz 2019:22). Permitting parents to be near their child lessens these bad feelings as they may give assistance without sacrificing closeness (De Beer & Brysiewicz 2019:22). This sub-concept of proximity incorporates this study’s subthemes, decreased parental participation and a weak nurse–parent relationship.

Subtheme 2.1: Decreased parental participation: Parent participants express a desire for increased participation in their child’s care, including consultation on healthcare decisions. Parents require acknowledgement as expert partners (Williams 2024:144), and their concerns should be considered by nurses. The nurse participants also made this suggestion and emphasised the significance of parental participation in the hospital care of autistic children, as they believe parents are experts and can assist in the child’s care (Williams 2024:144):

‘I believe getting the parents involved in caring for their child, will help develop a good relationship between the nurse and the parents,’ (Parent participant 7)

Subtheme 2.2: A weak nurse–parent relationship: The parent and nurse participants both agreed that developing a courteous connection between the parents and nurses is beneficial for all concerned and will also improve parental involvement in the hospital care of autistic children:

‘The nurses need to build a relationship with the child and the parents,’ (Parent participant 3)

When nurses demonstrate awareness, respect, understanding and acceptance of parents’ attitudes, values, beliefs and practices throughout their children’s hospital admission, this is referred to as cultural and religious cooperation (De Beer & Brysiewicz 2019a:23). In this study, the subtheme of impatient attitude is incorporated under this theme.

Subtheme 3.1: Impatient attitude: Many parents had experienced discrimination from nursing staff because of their child’s autism spectrum disorder (ASD) and perceived nurses as impatient, cold, unfriendly and aggressive. They suggested that a caring, friendly, understanding and patient attitude can create a more conducive environment, build better nurse–patient/nurse–parent relationships and promote parent participation for hospitalised autistic children. The professional nurses also agreed with this suggestion, saying:

‘I expected the nurses to be more patient and to help the parents to care for the child. The nurses need to be calm and friendly with the parents and children. They need to build a relationship with the child and the parents,’ (Parent participant 3)

De Beer and Brysiewicz (2019:22) define ‘Garnering resources’ as parents and an autistic child receiving the resources they require. These resources are required so they can meet their basic physiological and psychological needs such as food, sleep and hope (De Beer & Brysiewicz 2019:22; Williams 2024:190). Parents and autistic children require non-material resources such as people to share their pain with (Williams 2024:190). Parents and autistic children also require a comfortable waiting area, where they can get enough rest and sleep, if feasible (Williams 2024:190). Parents frequently feel compelled to remain close to the child; therefore, it is critical to have easy access to water and food in the waiting room (De Beer & Brysiewicz 2019:22). This sub-concept incorporates subthemes: Lack of therapeutic resources in the hospital, harsh hospital environment and unmet nutritional needs

Subtheme 4.1: Lack of therapeutic resources in the hospital: Autistic children have a short concentration span and become irritable in an unfamiliar environment. Parent participants believe that children need toys or entertainment in hospitals to promote effective family involvement. Parent participants explained how they had created a soothing home environment by using toys and entertainment, which reduced parental stress.

However, many parent participants verbalised a lack of toys and entertainment (distractions) in the hospital, which caused stress for the child and parents. Older participants brought entertainment like iPads with music to keep the child entertained. Therefore, having toys or entertainment is crucial for a child’s comfort and well-being. Nurse participants agree that toys and entertainment are crucial for children with ASD when admitted to the hospital. They recognise the value of play in treating children and see them as positive distractions. Nurse participants believe that it is the duty of parents and management to provide these toys (Williams 2024:169), addressing the child’s sensory challenges in a new environment. Following are some verbatim quotes from some participants:

‘The paediatric ward should have a playroom with sensory toys to use in the playroom to calm the child down and be a form of distraction,’ (Parent participant 5)

Subtheme 4.2: Harsh hospital environment: All parent participants suggested that the autistic child be nursed in a private room to cater to the sensory needs of the child. It was noted that those parents and children who were given private rooms had a good lived experience and vice versa:

‘We were put in a private room, which was very good because I kept the curtains closed and lights off because the light affects my son, who is sensitive to bright lights. The child must be admitted in a private room because of the sensory issues of children with ASD, the curtains, room lights, et cetera, are important,’ (Parent participant 5)

Subtheme 4.3: Unmet nutritional needs: Autistic children are known to have restricted diets because of sensory problems, and many parents recounted the experience of their child not eating the food in the hospital, which the parent participants perceived as the uncaring hospital not meeting the child’s basic need (Williams 2024:178). Parent identified this as a major concern for them. Parents also observed this to be ignorance of the special sensory and dietary requirements of their child (Williams 2024:178):

‘He did not eat at all in the hospital and did not like any of the food they offered so he did not eat all day. They need to ask what food the child eats, so they can make that food for the child,’ (Parent participant 3)

According to Litwin and Sellen (2023), although there is substantial individual variance in preferences and aversions, the majority of children and teenagers with ASD exhibit sensory sensitivities, and many healthcare settings are not suited to adequately meet their requirements.

In an integrative review of recent literature conducted by Magalhães et al. (2020:557), the authors reported that nurses found the following strategies help improve the nursing care of the child with ASD: (1) strategies that enable the insertion of playful experiences as a way to promote care; (2) musical intervention as a technique of caring for children with ASD, which can provide a moment of creative interaction, stimulate communication and change the behaviour of these children; (3) the use of ludic resources (toys), which are used by nursing professionals to encourage the child’s sense of autonomy, communication and behaviour change through creative interaction. Drake et al. (2012:215) conducted research in which they deployed a coping kit for paediatric inpatients and examined the cost-effectiveness and nurse assessment of the kit’s usefulness, finding that it was a very successful tool embraced by autistic children, parents and nurses.

Autistic children have a higher rate of injury and a higher death as a result of injuries; therefore, nurses who care for children with ASD must be ready to discuss safety with the parent and provide a safe environment for the child (Celia et al. 2020:222). The primary caregiver parent is an expert on their child and a vital source of knowledge, and all medical personnel should recognise this, especially when it comes to safety (Celia et al. 2020:228). McIntosh and Thomas (2020:2) explain that autistic children can be exposed to unintentional injuries, for example: Needles, tablets, bodily injury, food and too much stimulation during hospitalisation.

McIntosh and Thomas (2020:2) warn that it is important to take safety precautions while changing the surroundings, which should include securing sharps containers to prevent children from sticking their hands inside them, securing sharp items in a cupboard (Williams 2024:174). Minimal furniture and removal of dangerous medical equipment from the room may prevent injuries to the child (Williams 2024:174). To prevent unintentional drug intake, all cabinets must be secured, as people with ASD may try to open drawers and cabinets to start sorting the contents (McIntosh & Thomas 2020:2).

According to Mendive Dubourdieu and Guerendiain (2022:1), it is a well-known and researched fact that many children with ASD follow a gluten- and casein-free (GCF) diet or have a limited diet because of sensory issues. Nurses should therefore discuss dietary requirements with parents on admission of the child to the hospital (Williams 2024:179).

According to Gray and Grove (2021:182), the first step in framework development is defining the relevant concepts. According to these writers, concepts are selected for the framework based on their applicability to the issue statement, literature and phenomenon of interest. Every concept in a framework needs to have a conceptual definition and be able to be found in previously published theoretical works (Williams 2024:188).

The following concepts are included in the framework:

Eleven suggestions emerged from the empirical findings from this study; to improve parental participation and effective family involvement, these suggestions were amalgamated into the relevant sub-concepts of empowerment in the process of developing a framework.

De Beer and Brysiewicz (2019:22) explain that empowerment consists of the sub-concepts of Information sharing, proximity, garnering resources and cultural and religious cooperation (Williams 2024:190). These four sub-concepts were discussed in detail, in the findings section and therefore will not be discussed again here.

Parents frequently feel compelled to remain close to the child; therefore, it is critical to have easy access to water and food in the waiting room (De Beer & Brysiewicz 2019:22). This sub-concept incorporates subthemes: The hospitalised child needs entertainment, safety, accommodation of their sensory needs, suitable food, and a quiet environment (Williams 2024:190).

Gray and Grove (2021:183) described how the next step in the framework development process is to connect all the study ideas through relational statements. To combine research findings, the researcher must establish evidence that there are connections between some or all of the concepts (Williams 2024:191). Relational statements connect concepts. The relational statements for this study have been described in the subheadings that follow (Williams 2024:191).

Relationship between the nurse and the autistic child: Neuman’s system model (NSM) shows that the nurse has a direct impact on the autistic child as the child relies on the nurse to regulate stressors in the hospital setting and thereby aid the child in reaching a state of wellness. The relationship between the nurse and the child is clearly illustrated by this framework (Williams 2024:191).

The relationship between the parent and child with ASD: With the Bowens Family Systems Theory (BFST), the parent has a direct impact on the autistic child, as well as the child’s health, and can be represented as follows (Williams 2024:192):

The relationship between the nurse, parent and autistic child: Pfeiffer and In-Albon (2022:186) point out that a ‘triangle’ – three people – is the smallest component of a family system in BFST (Williams 2024:193). A three-person relationship is more stable as a two-person relationship is too little and stress may develop quickly. The friction shifts between the three persons when a third person enters the relationship, in order to maintain the stability of all relationships (Williams 2024:193). If tension between the two closest members, referred to as the ‘insiders’, rises, they can choose to get closer to the third member, referred to as the ‘outsider’ (Williams 2024:193). Any conflict or tension that develops between any two people in a triangle tends to change the dynamics of that triangle (Pfeiffer & In-Albon 2022:186). Because everyone involved – the child, the nurse and the parent – perceives hospitalisation as a period of worry and stress, the child, nurse and parent would create Bowen’s notion of the triangle relationship in the present investigation. In the event of hospitalisation, the parent may help alleviate the stress on the nurse and vice versa (Williams 2024:193).

A conceptual map, according to Gray and Grove (2021:184), is a graphical depiction of a research framework. This conceptual map, also known as the relational statements, shows the connection between all the key ideas in the research in a visual manner (Williams 2024:193).

Figure 1 is the conceptual map, ‘The framework for the improvement of parental participation in the hospital care of an autistic child’.