Developmental Neurorehabilitation, December 2013; 16(6): 363–374

Parents and children with cerebral palsy discuss communication needs in hospital

BRONWYN HEMSLEY1, MELISSA KUEK2, KAELY BASTOCK3, NERINA SCARINCI2, & BRONWYN DAVIDSON2 1

Faculty of Education and the Arts, School of Humanities and Social Science, The University of Newcastle, Callaghan, Newcastle, Australia, 2Department of Speech Pathology, The University of Queensland, Brisbane, Australia, and 3 Cerebral Palsy League, QLD, Speech Pathology, Brisbane, Australia (Received in final form 9 December 2012) Abstract Objective: The aim of this study was to understand the communication needs and experiences of parents and children with cerebral palsy (CP) and complex communication needs (CCN) in hospital. Methods: Focus groups with 10 parents and interviews with seven children with CP and CCN were analysed for content themes. Results: Results demonstrated that children often want to communicate directly with hospital staff to: gain attention, answer yes/no, convey basic physical needs, give and receive information, control their environment and participate in preferred activities. Barriers to communication included lack of access to augmentative and alternative communication (AAC), staff preferring to communicate with parents and lack of time to communicate. Conclusions: Results highlight strategies for successful communication, the role of the parents in supporting communication and provision of AAC systems for children in hospital. Policy and practice implications in the preparation of children with CP and CCN for communication in hospital are discussed.

Keywords: Augmentative and alternative communication, cerebral palsy, children, complex communication needs, hospital, parents

Children with cerebral palsy (CP) enter hospital more than twice as often and have significantly longer stays in hospital, with higher levels of care, than children without disability [1–4]. Many children with CP also have complex communication needs (CCN) or limited functional speech, with 25% of children with CP being non-verbal [5]. Children with little or no speech benefit from the use of augmentative and alternative communication (AAC) systems such as communication boards, books or speech generating devices to communicate [5, 6]. Despite their repeated hospitalization and difficulties communicating, to date there is little research examining the communication needs or experiences of children with CP and CCN that might help prepare children and their families for communicating with hospital staff. Hospitalization of children with CP incurs substantial costs to the community [1, 5] and research examining the care of children

with CP in hospital, and helping these children and their families to prepare for hospitalization, might lead to improvements in care and reduce the costs associated with hospital care [1]. Research into parental satisfaction with hospital care received has shown that parents of children with CP in hospital are significantly less satisfied with their children’s care than parents of children without disability, and that this is due to problems with nurse–patient communication [7]. Parents of children with CP perceive that hospital staff often appear frightened and unable to communicate with their children and that this impacts upon the care the child receives [7, 8]. Nurses caring for children with disability have reported feeling frustrated and guilty at not having the time to communicate with children who have high support needs [9] and appreciate parents who assist them in providing care [10]. In recognition of both the stress on children and the important role of parents, hospital policies and

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Introduction

Correspondence: B. Hemsley, Faculty of Education and the Arts, School of Humanities and Social Science, Level 2, McMullin Building, The University of Newcastle, University Drive, Callaghan, NSW 2308, Australia. Tel: þ61 2 4921 7352. Fax: +61 2 4921 6933. E-mail: [email protected] ISSN 1751–8423 print/ISSN 1751–8431 online/13/060363–13 ß 2013 Informa UK Ltd. DOI: 10.3109/17518423.2012.758187

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practices routinely support parents in their role as care partners who provide valuable assistance to nursing staff in everyday care tasks [10]. To date, there are no reports in the literature on children with CP and CCN’s views on their communication in hospital. Indeed, research exploring the hospital experiences of children in the general population [11–13] or children with special needs (e.g. [1, 7, 9, 10, 14]) has excluded children who do not speak, sometimes acknowledged by authors as a limitation of the research [1, 15]. The exclusion of children with CP and CCN from research into children’s hospital experiences represents a significant gap in the literature, particularly as (a) they enter hospital significantly more frequently and stay for longer periods than children without CP, and (b) communication difficulties impact significantly upon patient satisfaction, care, and safety in hospital [7]. Nonetheless, research pertaining to children with typical speech in hospital can inform this area of inquiry. Children without disabilities have described feeling isolated, lonely, scared, and bored in hospital [14]. They like to have parents and familiar items from home nearby to improve their hospital experience [14]. Coyne [11] reported that hospitalized children aged 7–14 without disability in hospital experienced fears and concerns relating to separation from family and friends, loss of social contact at school with a negative impact on academic progress, being in an unfamiliar environment, receiving investigations and treatments, and loss of self-determination. However, children without disability also reported positive experiences in hospital, such as enjoying games on the ward and friendships with other children. Wilson et al. [14] reported that repeated hospitalization did not reduce children’s anxieties, even though they ‘knew the drill’ and ‘used more medical and hospital terminology’ (p. 99). It is not known whether children with CP and CCN, who rely upon others for assistance in all areas of daily life, are equipped to cope with the usual rigours of hospitalization faced by children in general, or whether they access the same relational experiences that ease the stress associated with being in hospital. There is recognition that children in hospital need to be engaged directly in communicating with healthcare providers, not only because of their rights under healthcare guidelines and patient charter of rights (e.g. [13, 16, 17]) but also because effective communication with children increases their compliance with and tolerance for discomforting care procedures and coping with hospitalization [11–13]. Lambert et al. [15] observed children on medical wards and proposed a Child Transitional Communication Model around the concept of ‘visibleness’ to account for the hospitalized child’s communication experiences. The model

encapsulated the child’s preference to oscillate between two positions in their interactions with parents and healthcare providers: from being passive bystanders in communication to being active participants included in interactions with hospital staff and parent carers. Recommending further research to focus upon the needs of children with disability in hospital, Lambert et al. [15] highlighted the importance of developing policy to support hospitalized children’s communication. Children’s movement between active and passive positions in their communication might also be considered as part of their development of selfdetermination in health [18, 19]. Children’s development of self-determination underpins their successful transition from child to adult health services, and children with CCN who use AAC need to have planned goals for medical and health transitions [18, 19]. Children with CP and CCN remain reliant upon others over their lifespan and do not necessarily make the same transitions away from parental support as children without disability [18]. Therefore, it is important to understand more about how children with CP and CCN might communicate about their own health in hospital, to ensure that they are prepared for successful health transitions to adult health services and health interactions as adults [19]. There is very little information in the literature about children’s views on hospital experiences to (a) inform policy and practice in improving their care, or (b) guide parents and health professionals in helping children with CP to better prepare for or cope with future hospitalizations [18]. The aim of the current study was to investigate the views of both parents and children with CP and CCN on the children’s communication needs and experiences, and barriers to and strategies for better communication for children with CP and CCN in hospital.

Method Ethical approval for this qualitative study using two methods was granted by The University and the ethics committees of the organizations assisting with recruitment. Participants were recruited through disability organizations and informed consent was provided by parents with the children’s agreement to participate. Focus group (FG) methodology [20, 21] was selected as the most suitable method for the adult participants to discuss a topic about which little is known and to generate new ideas and insights through an interactive group discussion [22]. Narrative inquiry [23] involving individual in-depth interviews was selected as the most suitable method for children with CP and CCN to narrate their

Communication in hospital for children with CP

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Table I. Information on adult participants in focus groups. Number of participants (pseudonyms)

Focus group label

Age range of children

Children’s communication methods outside hospital

FG1

3 (Jenny, James, Tina)

2.0–2.9 years

All: Parents as interpreters; low technology communication boards and books, gesture, vocalization and facial expressions

FG2

3 (Tammy, Sylvia, Anna)

10.0–17.0 years

Parents as interpreters of communication (n ¼ 3) Gesture (n ¼ 2) Vocalizations (n ¼ 3) Speech generating device (n ¼ 1) Communication book (n ¼ 1)

FG3

4 (Lucy, Tricia, Jean, Sandra)

15.0–17.0 years

Communication board or book (n ¼ 3) Signing/gesture (n ¼ 2) Speech generating device (n ¼ 3) Dysarthric speech (n ¼ 1)

communication experiences and to allow sufficient time for children to formulate their responses using their own AAC systems.

successful and unsuccessful communication attempts for their child during their hospital stay and (d) barriers to and strategies for improved communication in hospital.

Participants In total, 10 parents of children with CP and CCN, who had supported their children with CP in hospital for at least three days in the past two years, participated in one of three focus groups. Information on each adult participant’s child is presented in Table I. In total, seven children with CP and CCN (four with spastic quadriplegia and three with athetoid CP) who had been to hospital for three or more days in the past two years (n ¼ 5), or attended at least three hospital-based clinics or day surgeries (n ¼ 2) in the past 12 months were interviewed using their AAC systems. Children were aged from 13 to 18 years and used a range of communication methods in the interview and in hospital as presented in Table II. None of the children had functional speech and all used multi-modal forms of AAC with independent access including the use of speech generating devices (n ¼ 6), communication boards (e.g. alphabet board, picture communication boards or books) (n ¼ 3), gestures (e.g. pointing) (n ¼ 7) and other non-verbal communication strategies (e.g. eye gaze, head movements, mouth movements) (n ¼ 7). Procedure Focus groups. Focus group interviews conducted at disability services in the community lasted 45–60 min and were moderated by the first author with assistance from the third author. Participants were asked to discuss (a) how they had supported their child in hospital, (b) their child’s communication experiences in hospital, (c) occasions of both

Interviews with children. Beyond set-up of the AAC system, during their individual interviews no children required hands-on assistance to select messages. Each interview lasted 30–45 min, and each second interview to verify the researchers’ interpretations lasted 15–20 min. Interviews took place in the presence of at least one of the child’s parents, and were digitally audio and video recorded. The topics raised in the interview were: being in hospital, what it was like for them, how they communicated, their communication needs, any barriers to or strategies for better communication and any ideas for improving communication. After analysis of the narrative data, all children were interviewed a second time for verification and confirmation that the researchers’ interpretations reflected each child’s views. Data transcription All focus groups with parents and individual interviews with children were transcribed verbatim with information that might potentially identify participants or service providers removed (e.g. details about the child’s specific diagnosis, presentation or medical treatment). General descriptor labels (e.g. doctor, nurse, disability service, hospital, sister) were used to replace the names of people, service providers and places. The transcripts were checked against both the audiotape and videotape by the third author in order to confirm who was speaking in the focus groups, messages conveyed by AAC, and any non-verbal contributions that added meaning to the transcript or otherwise influenced the conduct of

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B. Hemsley et al. Table II. Information on child participants in individual interviews.

Participant label

Age range

Method of communication in interview

Method of communication in hospital

Number of times admitted in recent years and length of stay

P1

16–18

SGD, Parent interpreter

P2

13–15

P3

16–18

SGD, Communication book, parent interpreter Communication book, parent interpreter SGD, Parent interpreter

P4

16–18

SGD, parent interpreter, communication book

Parent interpreter

P5

13–15

SGD, dysarthric speech

Parent interpreter

P6

16–18

SGD, dysarthric speech, gesture

Alphabet board, gesture, parent interpreter

P7

13–15

SGD, dysarthric speech

Parent interpreter

Hospitalized three times in the past two years. Longest stay was for five days Hospitalized three times in the past two years. Longest stay was for three days Attends hospital outpatient clinics three times per year for treatment of spasticity and dental treatments Attends hospital day surgery three times per year for treatment of spasticity and dental treatments Hospitalized three times in the past two years. Longest stay was for four days Hospitalized three times in the past two years for surgery, staying a week at a time each admission Hospitalized for long periods in past three years: for over six weeks three years ago, for six weeks two years ago and for one day in the past year

Parent interpreter Parent interpreter

SGD: Speech generating device.

the interview (e.g. looked at parent, shook head, pointed at the communication system). No attempt was made to transcribe or interpret all non-verbal communication for further analysis (e.g. facial expression, direction of gaze).

ensure their voice was retained; as long as inclusion of details within summary would not identify the children to others who knew them. The perspective was first and foremost that of the child with views of parents noted as such and given only to add context to the child’s account.

Analysis Focus group analysis. The focus group interviews were analysed for content themes according to focus group methodology [20, 21]. All authors met twice to discuss their analysis of the data, and reach consensus on the categories of common themes across focus groups. On the basis of these discussions, the first author wrote a summary of the focus group analysis for verification with each group’s participants [20]. Narrative inquiry analysis. De-identified transcripts of each child’s interview were entered as separate documents into NVIVO for ease of data coding and retrieval. The first and third authors read and re-read the transcripts to familiarize themselves with the stories and narrative elements within each story. They then coded these according to story plots and themes to capture the narrative configuration of events [23], namely: being with parents in hospital, situations where communication was needed, problematic events, their evaluation of the experience, and strategies for communicating with hospital staff. The first and third authors together wrote the narrative summary stories for each child with temporal re-ordering of events. The children’s own words were also used in the narrative summary to

Verification. Written summaries for each participant were sent to adult participants and the parents of the children who participated. Participants were invited to add, change or remove information and to confirm that the summary reflected their discussions and perceptions. All adult participants verified that the summary interpretation reflected their discussions and views. Following analysis of the children’s narrative interviews, the first author interviewed each child a second time, to read aloud line-by-line through the child’s written story and give him or her an opportunity to remove, add or change any aspect of the story, and to verify that each element in the summary reflected his or her views. Three of the children requested no changes, and four of the children added details to the stories and once these were added they were satisfied that the story reflected their experiences.

Results Parents’ views on children’s communication in hospital Devoted carers. Parents described their main role in hospital as ‘being there’ at all times to provide direct

Communication in hospital for children with CP care and meet the children’s physical and emotional support needs. For some, this meant staying at the hospital overnight and sleeping in rollaway bed or a chair beside the child’s bed. Sylvia (FG2) explained ‘I’m always at hospital, I stay in hospital’. Tina (FG1) agreed and explained her reason for taking on most of the nursing care of her child on the ward: ‘Because [the parents] care for the child 24/7 at home, the role continues even while they’re in hospital’. There was agreement across the groups that there was ‘no way [the parent] would leave or feel safe enough to leave the child unattended’. Parents who did have to leave to attend other children in the family reported feeling guilty and anxious when away from the hospital. Parents perceived that the child would not be safe in hospital without parents being there to watch over them: ‘If you were to leave your children, they wouldn’t be safe’ (Sandra, FG3). Fears for safety were related to the perception that hospital nurses were not always capable of providing the specialized care that their child required (e.g. in administering enteral feeds, positioning in bed). However, some parents also perceived that nursing staff expected them to provide all care as the parent held more expertise, as Tina (FG1) reflected: that’s what we’ve got to do all the time . . . they [hospital staff] think that because we know how to care for them, there’s no point them sitting there tube feeding or whatever, because it’s what we do. I think the level of care is different when the parent’s there, because they just expect us to do it.

Advocates. Parents also perceived that it was their role to protect the child from harm, to raise awareness of the child’s humanity, and ‘advocate for the child’s basic human right to be respected’ (Sandra, FG3). There was agreement across groups that being unable to communicate left the child with CP and CCN vulnerable to being ignored and/or neglected. Parents feared that if there were no family member or carer in the hospital ward with the child, the child would have little interaction with other people and that this would expose them to harm. Tricia (FG3) explained: ‘There’s a lot of assumptions made about people with disabilities particularly people who can’t talk – it’s like, they ignore them, ‘‘oh you’ll be alright you’re only in a little bit of pain’’’. Parents of very young children in FG1 described challenging hospital staff in care decisions. Tina (FG1) explained: ‘We let the nurses know this is what we need, this is what’s wrong’. James said: The reason we chose to stay is because they wouldn’t let him sleep on his stomach . . . The nurses would come and say ‘‘he’s got to be on his back’’, and he just kicked

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crying for good half an hour. I said ‘‘nah we’ll turn him over’’ and as soon as we flip him over on his stomach he was out like a light. [James, FG1]

Supporting communication. Parents of children of all ages saw it as their role to ‘be the child’s voice’ and interpret the child’s non-verbal communication for the hospital staff. According to parents, children needed to communicate pain, toileting needs, comfort, positioning and nausea or being sick. Tina (FG1) explained how parents might be very quick to interpret these basic communication needs through their knowledge and experience of the child’s nonverbal communication: ‘We know how to read them and when something’s wrong these little ones can’t sort of say . . . ‘‘I’m in pain’’ where we just pick it up’. Jean (FG3) agreed and said ‘I’m virtually his voice as a mother, we can just tell without our children saying anything what they’re going through and how much pain they’re in’. Parents also described modelling good communication – talking with the child when staff were present to demonstrate that the child was capable of understanding and communicating. Two parents of older children (FG2 and FG3) expanded their roles to include encouraging their child to communicate independently and directly with hospital staff. Jean (FG3) said: I’ll say ‘‘OK this is [child’s name], he doesn’t speak, he understands everything fully. You need to ask him a question, ask him for yes/no answers’’. I’ll sit there and just explain, and if a new one [nurse] comes on I say it to her too.

Tammy (FG2) described deliberately not talking for her son: ‘I’m now getting him to advocate for himself medically and trying to give him those skills to be able to talk to the doctors himself’. Children’s narratives on communication in hospital The children’s stories about their communication in hospital supported parents’ accounts and reflected their strong reliance upon their parents to remain at the bedside almost all of the time to provide care and speak on their behalf. P1 said ‘When I go to hospital, Mum is normally there and the hospital staff talk to her’ and P2: ‘They are very good with my yes and no but if there’s an adult around they’ll tend to ask them and not me’. While children described hospital staff preferring to speak to the parent, they also appreciated nurses looking at them and having the chance to respond to nurses’ questions with yes or no. Being observed closely by nurses meant that the children could then convey other messages with non-verbal communication, as P3 explained: P3: Mum and dad are always with me but the nurses and doctors usually speak to me, asking me questions,

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and I say ‘‘yes’’ and ‘‘no’’. I say ‘‘ow’’ and show them where it hurts by pointing. I wriggle when I am uncomfortable, and gesture when I want to eat or drink and a sign to show that I need to go to the toilet. Mum and dad tell the nurses what my gestures mean.

Children’s accounts reflected varied experiences according to: (a) their communication needs in different situations, (b) their preferences at different times for direct or indirect communication with staff and (c) the communication tools made available to them in the hospital. All told children stories that reflected them using multiple communication modalities in hospital including: speech with a parent interpreter, yes/no responses, eye gaze, facial expressions, pointing, and symbolic gestures. Although most of the children took a low technology communication board or book with them to hospital (n ¼ 6), these were used infrequently, as P3 noted: ‘I haven’t taken my device – I have taken my book but I don’t tend to use it much’. Although all of the children used a speech generating device at home, few had ever taken a speech generating device to use in hospital setting, with limited success. The children’s stories reflected that their parents could not meet all of their communication needs in all situations, even when they were present. When parents were not present, staff who were not familiar with communicating with the child did not know how to use the child’s available communication system. P2 explained: ‘I’ve always had my communication book at hospital but staff are not always keen on using it . . . The book is hard for the nurses since they have to scan [speak] through the columns [for the child to choose] and they don’t know how to do that’. Despite the children’s stories reflecting low frequency of use of available communication aids in hospital, the children’s stories reflected a number of situations where they had been successful in communicating in both triadic (parent/child/staff) and dyadic (child/staff) interactions. For example, one child reported that his or her parents told hospital staff about his or her method of indicating yes and no and ability to understand speech, and promoted the child’s need to communicate independently and actively on the ward: When we first get to hospital, Mum always makes sure that the nurses and doctors are looking after me know that I understand what they’re saying. She makes sure that they talk to me instead of to her. [P6]

All but one of the children in this study narrated situations in which they would have liked to communicate directly with hospital staff. Their stories provide additional insights to reports from parents about their communication attempts when parents are not present. When alone, some were able to gain the nurses’ attention and use gestures to

communicate, and one (P5) used a communication board to request items such as DVDs or games. Staff who were familiar with the child also featured in the stories of five children as providing positive experiences when parents were not present. P5 told of a nurse who was a family friend popping in to chat to him and P6 described a familiar physiotherapist being nearby and understanding his non-verbal communication when there was a problem with the cannula in his arm: There was a time that Mum wasn’t there and I had to tell someone there was blood in my bed. I was quite lucky because a physio who knows me really well was there at the time, and I was able to show him. [P6]

Barriers to communication for children with CP and CCN in hospital Across all focus groups, parents agreed that the ‘lack of time’ was a major barrier to communication. Sandra (FG3) noted that doctors often do not appear to take time to communicate with the child instead ‘they [doctors] are just like, ‘‘I’m here, I want to tell you this’’’. Discussions reflected that in hospital there is a need for a quick response and parents often communicated for their children to save time. Jean (FG3) explained: ‘In hospital you feel like you’ve got to get your point across quickly especially if you’ve got a child in pain, you’re not going to sit there and try and find the words and delay, you want quick things’. There was strong agreement across all parent groups that hospital staff seldom attempted communication with the child while parents were present, preferring instead to interact with the parent. Maria (FG2) explained: ‘I don’t find they ask [child] anything, they ask me. I don’t find they talk to her much’. This was echoed by Sandra’s (FG3) comment of communication with the child being ‘all through me’. Participants reported that hospital staff often assumed that the child would be unable to comprehend or communicate with others due to their disability, and this resulted in hospital staff not attempting communication with the child. However, parents in FG1 expected that hospital staff should be more competent in communicating with their child. James (FG1) explained: My three kids know exactly how to treat my boy [with CP], and they communicate with him fine. If they can do it, I’m sure a nurse or a doctor could do it the same way. Tina: And they should know better because they are in that role everyday, so they should know how to communicate with a child that has less communication skills.

Communication in hospital for children with CP Like the children’s accounts, parents’ discussions reflected that simply having a communication aid present at the bedside might not help the staff know what it was or how it was to be used. Sylvia said of the board: ‘nobody ever picks it up’ and Sandra (FG3) ‘I haven’t really had many nurses that will access the board’. Most parents and children’s accounts reflected children having a passive role in their interactions with hospital staff, particularly when unwell or if the complexity of the message seemed beyond what they could manage with their limited communication (yes or no and gestures). However, being in the background did not mean being disengaged, as reflected in the following accounts: Mum sometimes tells them to ask me instead, and other times just answers. It depends on how sick I am, and also I look at her to show her I’d rather she talk for me, instead of me trying to struggle with it. Sometimes it’s just too complicated to explain, but I might just try to get across one word, with a gesture, or nod along with Mum to show them that I am listening and following. [P2]

Indeed, environmental factors might facilitate passivity in children on the hospital ward. For example, P7 actively avoided calling out to nurses when alone at night, and in the recovery ward, where he said nurses did not understand him: If Mum or Dad have gone for a walk it’s difficult to get the nurses’ attention – I can’t press the buzzer and don’t want to call out. It’s hard in Recovery, because Mum and Dad aren’t there. I try to speak as little as possible, because Recovery nurses find it hard to understand my speech. [P7]

However, children in this study were not always satisfied with being in the passive role for communication. Like adults with developmental disabilities [24, 25], two children expressed their negative emotional responses to being overlooked in interactions staff’s interactions with their parents: I do want people in hospital to talk to me. It makes me feel mad when the nurses don’t speak directly to me. I think if I go to hospital again then I’ll take my device and my communication book. [P4] A lot of the time, people talked to mum and dad, instead of me, which was frustrating. I felt like saying to them ‘I can talk. Talk to me!’ It made me feel really horrible. I don’t like it when they tell mum and then mum tells me. They should just talk to me about it. [P5]

Barriers to the use of high technology AAC in hospital Across the groups, parents listed numerous barriers to taking and using high technology AAC in hospital. Parents agreed that, in general, hospital staff discouraged families from bringing valuables to the

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hospital, and that high technology systems were simply too valuable to risk damage or loss. Sandra (FG3) said ‘They [hospital staff] just warn you when you get in there, not to leave any valuables there. We spoke to them about bringing his [speech device], and they said that they would highly recommend not doing that’. Tina (FG1) also expressed her reticence to take her child’s speech generating device to hospital and explained: ‘A lot of that would be because they are bloody expensive and there’s no safety, there’s no security for them’. Parents hypothesized that hospital staff not knowing how to use the system without guidance from the parent would not reduce reliance upon the parent to assist with communication, and that the additional effort required to support the use of high technology AAC would outweigh any benefit arising from its use. Other personal and environmental factors also proved barriers to the use of high technology in hospital. Parents also agreed that in hospital the child spent most of the time lying down in bed, and that use of the system would require repositioning to be sitting in his or her usual wheelchair. Tricia (FG3) told of her daughter’s difficulty with accessing her own AAC in the hospital: ‘especially to use a device or to use a low-tech book, if you’re lying in bed that is really hard’. Parents in FG2 were in agreement that the child is often too lethargic or unwell in the hospital to communicate using AAC. Tammy said: ‘Any other time in hospital, he hasn’t been well enough to have his device. [Child] just had a communication book or me reading him’. This was supported by Maria who reported: ‘unless she’s sitting in a chair, she can’t access her device’. Only Tammy (FG3) described her son’s successful use of a speech generating device in hospital, reporting that it was used to explain symptoms that enabled doctors to reach a diagnosis. In contrast, although Lucy (FG3) had taken her son’s speech device to the hospital, staff treated her child’s speech generating device ‘as a toy’ and did seem to know how to interact with him using the system. Strategies to improve communication Parents acknowledged that communicating with their child was difficult at times and that they did not always know what the child was communicating. However, they wanted hospital staff to at least ‘have a go’ and attempt direct communication with their children. As Tammy (FG2) explained: ‘I don’t always understand exactly what [my child’s] message is . . . you don’t always infer the correct message that he is getting across, so it might be something else. It’s ok’. Sylvia (FG2) also valued hospital staff’s attempt at communication and added, ‘It’s ok to be

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wrong sometimes, just attempt it’. Parents appreciated staff who made an effort to talk directly to their child, with many parents describing ‘one good nurse’ or ‘one good doctor’ who had taken the time to talk to the child. Parents also agreed that it was important for hospital staff to realize that the child understood information, even if he or she could not speak. James (FG2) the father of a two-year old explained: ‘[Staff] talking to them is a really big thing, and not as babies either’. Parents in FG3 also raised the issue of using appropriate language with children:

instead of having all the words in text, you can symbolize that’ to help the child provide information. Tricia (FG3) shared a positive experience she had when a doctor observed the child’s gesture and asked the parent to interpret:

Tina: That’s right, they do treat them like they are babies, like as if they don’t understand, and they [children] pick up on that. We don’t treat them like babies at home. Lucy: There’s a fine line between talking to somebody like a child and talking to him or her like an adult but using simpler language. I still want them [children] to be treated like they are the age they are, but still with the little that they can understand.

Tammy (FG2), who had spent some time preparing her child for direct communication with healthcare staff at pre-hospital appointments, said: ‘I’ve actually come back into a room and had a doctor using a board with [child]’. In another scenario, Tammy recounted a similar experience of her son using his SGD to communicate his medical condition to hospital staff:

Acknowledging that time to communicate in hospital is limited, parents suggested that hospital staff could ‘take a little more time . . . and build that bond with them’ to improve communication. Participants felt that the familiarity and rapport between the hospital staff and the child is crucial. Lucy (FG3) explained:

It was pretty amazing, like . . . he was well enough to have his SGD but what was happening is he felt like he was moving in his head . . . it was really hard for him to describe . . . and the doctor happened to be on the ward they called him and [child] could still communicate with his device . . . whereas normally he any other time in hospital hasn’t been well enough to have his device.

It [communication] is better when they have a team that is regular and the same. It only works when the issue is an ongoing and that team is the same and they do get to know [the child’s communication] and they communicate a lot better.

Parents also suggested that hospital staff need ‘to be very observant, when you have people who are non-verbal, because it is those (visual) cues that you have to pick up’. Half of the parents in this study, and almost all of the children, had taken low technology communication boards or books with them for the child to use in hospital if the opportunity presented itself. Although participants noted that these boards were rarely used in the parent’s presence, leaving a communication board with the child meant that parents could leave the child unattended with less fear that the child had no way to communicate. Thus, taking a communication board helped the parents to feel more comfortable in leaving the bedside for short periods. Maria (FG2) said ‘[The board] is a back up for when I’m not there or something like, when I’m not available. It’s something that [child] is still familiar with . . . I know what’s on there. I can get there quicker’. One parent, Tammy (FG2), suggested ‘symbolising (picturing) things around the hospital room’ to help the nurses communicate with the children, and Maria agreed that ‘[At] admission –

Well there’s one doctor who’s really good with [child] and he will say to [child], ok [child] got to give me a smile and she’ll give him a smile and say hello. When [child] hears the word surgery, she goes no and put her hand over her mouth . . . and he’ll go ‘what’s she doing, what’s she trying to say?’ Which is quite nice, no other doctor does that.

Also, parents perceived that having hospital staff being supported ‘to have multiple different methods [of communication] that they were prepared to use at once’ would improve their child’s hospital care experience. Maria (FG3) echoed in agreement: [To have] A nurse or two, or five, trained in AAC somehow, and then they’re not so afraid of different types of communication. People who are trained in that know that, even though they might look really different, [different] types of ways of communicating – it’s the same principle – often it’s just using whatever the child can use.

Participants also valued having hospital staff who are familiar, confident and up to date with their knowledge and use of AAC. Tammy (FG2) further suggested that hospital staff ‘keep their training up to date, so they could be aware [of] all the variants that [AAC] come in, with equipment’. Although parents reported staff rarely using available communication aids, children’s stories reflected that the aids were occasionally useful when parents were not present: P2: During my last visit we used the book a lot . . . when I said my back was really sore. I was able to tell everyone using the describing page what the pain was like, was a sharp pain. I’m so glad I have that book, because no one can just guess everything. P5: Whenever I’ve gone to hospital for overnight, I’ve taken a communication board with me. Mum and some

Communication in hospital for children with CP of my teachers made it for me. It’s got information about pain and other things like food and drink and toilet on it. The physiotherapists I’ve seen in the hospital have tried to use the card with me. I used it once when I was in hospital and mum wasn’t there – I rang the buzzer and I pointed [to the board].

The children outlined what they needed to communicate in hospital, and for the most part these reflected a reliance upon indicating ‘yes’ or ‘no’ to questions about basic needs, numbers 1 to 10 for pain, and unaided communication in gestures or facial expression: P2: I want to be able to tell them that I need to be sick, or if I have trouble breathing. I use the pain scale one to ten really well. Normally mum does an auditory scan with me and then I’ll say, I’m at a level seven pain or a level ten pain. P6: I’ve told nurses about my health, all about my pain and whether I could feel them touching my foot when I had the cast on my leg. When a nurse asks me about pain, I usually tell them yes or no, and then they ask me to give them a number 1–10 on how much pain I’m in . . . One thing that would be important to me to be able to do if mum and dad weren’t there would be to ask for a sandwich or a drink of milk.

Beyond communication about basic needs (i.e. pain, comfort, toilet, hunger, thirst, nausea), children expressed a desire to communicate healthrelated information: P2: I want to be able to ask to see the doctor, or ask when he is coming. One time, I wasn’t happy that I couldn’t have the oxygen mask, and I just looked back and forth from the wall to the doctor and put my hand up to my mouth, and he explained why I couldn’t have it. P3: Sometimes I’ve had to remind mum and dad about something that they should be saying to the doctors or nurses.

P1 took his speech generating device with him to hospital and was able to use this while sitting in his wheelchair to explain his neurological symptoms to the medical staff and assist in his diagnosis. Nurses communicated directly with P6 helped him to manage his own pain: ‘they explained to me how to use the patient administered medication . . . it worked well because then I didn’t need to ask anybody – I could just press it when I needed to’. Children also described communicating for social interaction, leisure, and to control their environment: P6: I like to have something to do while I’m in hospital. Mum brings my MP3 player but I need to ask for the TV or DVDs to be on, or to be changed. P5: I sometimes get bored in hospital. I really wanted my laptop when I stayed in there overnight, the boy across from me had one. I remember asking for the

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hospital computer games a lot so that I had something to do. When I get my new speech device, I’ll take that with me to hospital because it has a computer built into it. I can use it to talk to mum, dad, and the nurses. P7: The other people I talk to are the people from the [hospital service], they come around to cheer people up and make them laugh, and I’ve told them what they could do (to play). By the end of my long stay they could understand some of my speech and so could some of the nurses.

Overall, the children’s stories reflected a positive aspect of increased activity in direct communication with hospital staff while parents were not present. Two of the children in this study expressed the hope that they might take and use their high technology AAC systems in hospital in the future. The findings of this study reflect that, indeed, although children with CP and CCN often rely upon parents to fulfil most of their communication needs, they still desire and need to establish a direct communication with nurses and benefit from being actively included in social interactions on the ward.

Discussion The results of this study provide new insights into the perceptions of parents of children with CP and CCN on the child’s communication needs and experiences in hospital. Parental roles in supporting their sons or daughters with CP in hospital are similar to those reported by older parents and adults with CP and CCN in hospital [24, 26, 27]. Thus, parental vigilance over protecting and advocating for their son or daughter apparently commences early and continues across the lifespan. To facilitate parental transfer of roles in care over the lifespan and encourage parents to take a break from care roles at the bedside, hospital staff might need to demonstrate, in the parent’s presence, their willingness and ability to provide direct care to the child and to respond to the children’s communicative attempts. Rather than simply replacing nurses in direct care, parents might be important figures in educating, mentoring and guiding hospital staff in acquiring new skills in communication. To date, the involvement of interested parents in either pre-service training of hospital staff or transfer of skills in communication at the bedside has not been explored. As reported previously by parents of children with developmental disabilities [8, 27] and hospital staff [10, 28], children with CP and CCN in this study relied heavily upon their parents to communicate on their behalf with healthcare providers. Results indicated that like other children in hospital [15], children with CP and CCN move between the passive and active roles in communication. However,

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they were limited in the active role, as they (a) struggled to indicate more than basic needs and respond with yes–no or non-verbal signals relating to pain, (b) were not supported greatly in the use of communication boards, and (c) rarely if ever used their speech generating devices. While it is important to recognize a lack of support for aided communication, children’s stories did not reflect them being left alone or lonely for long periods when parents were not present. Rather, their stories revealed that some hospital staff took the time to chat and listen to the child, and this improved the child’s hospital experience. Results of this study show that lack of availability of AAC as tools for communication and lack of time to communicate are common environmental barriers to communication in hospital for children with CP and CCN [29]. Investing sufficient time to apply adaptive strategies in communicating with the child with CP and CCN might lead to improvements in the quality of nursing care. Results relating to opportunity and access barriers to communication reflect the lack of hospital policies about the security and set-up of communication devices in hospital. Parents of children with CP and CCN who utilize AAC system need to be aware of relevant hospital policies so that they can make an informed choice about bringing their system to hospital or leaving it at home. There is emerging evidence on the views of hospital staff (e.g. speech pathologists, occupational therapists, nurses) on the use of AAC in hospital [28]. However, it is not yet known which personal or environmental factors in the ICF-CY [29] might (a) influence some hospital staff to engage in communication with children with CP and CCN, while others reportedly primarily speak to the parent, or (b) influence some children to take up an active versus a passive role in communication on the hospital ward. The results of this study reveal that at least some communication problems experienced by patients with CP and CCN may be prevented or reduced if nurses have the relevant knowledge and skills related to AAC [24, 30]. It is important that staff competency in communicating with children with CP is addressed in pre-service and in-service training, and in the everyday communication situations arising on the ward. The results of this study support the notion that good communication strategies implemented by hospital staff can improve patient’s hospital experiences: (a) coming in close and looking at the patient, (b) acknowledging the patient’s communicative attempts, (c) recognizing the patient’s non-verbal cues and (d) establishing a consistent system for the patient to say ‘yes’ or ‘no’ [30]. Knowing how the patient might access and use a communication board would also help children

with CP and CCN to explain their needs and preferences beyond the ‘yes’ or ‘no’ response. Results of this study highlight that children who use multiple methods of AAC at home are not yet supported to take their usual communication systems with them to hospital. As such, their options for communication are restricted in hospital. It is a fundamental human right of people with communication disability to have access to an appropriate AAC system in all environments in which they need to communicate (see [31 article 21], [32]). In that early hospital experiences influence later expectations of hospitalization [8] children not taking AAC to hospital might influence them as adults to leave their AAC devices at home and encourage them towards the passive role in healthcare interactions. The results of this study suggests that there may be a subtle shift in parental roles around communication and advocacy as children enter older adolescence. Parents of older children in this study moved to supporting the child to communicate directly with healthcare providers in preparation for transition to adult healthcare experiences. Therefore, interventions to increase the child’s competence in communicating with unfamiliar listeners about health might be especially important to strengthen development of self-determination in health before transition to adult wards [18]. The use of both generic pre-made and individual custom-made communication boards may relieve communication problems for patients who are unable to speak in hospital (e.g. [33]). However, even when low technology AAC systems were available to the children, these tools were reported to be used rarely. A multi-disciplinary team approach, such as that described by Beukelman and Ray [34] and Blackstone [35], involving all relevant allied health staff or assistive technologists, is needed so that children can access their communication aids effectively and efficiently in hospital. Also, additional interventions and resources (e.g. digital photos, video or live demonstrations of the hospitalized child’s equipment; information about communication partner behaviours) for healthcare staff might be needed to enable successful use of available communication aids and subsequent healthcare benefits as are reported for other populations in hospital [36, 37]. Limitations and directions for future research The results of this study are based upon a relatively small number of participants and as such the findings might not reflect the views of all parents of children with CP and CCN or children with CP and CCN. Furthermore, two of the focus groups in this study comprised three participants, being the minimum recommended size for focus group research [22]. The

Communication in hospital for children with CP rich data collected by even small focus groups in this study support the notion that the small group size need not disrupt the validity of focus group data [38]. However, it is possible that if a greater number of participants were included in each of the groups, further insights regarding the communication needs of children with CP and CCN in hospital might have been gained. If more children had been included in the study a greater diversity of experiences might have been captured to show contrasting experiences or to expand further on the strategies adopted to overcome barriers to communication. Although this study included valuable reports from older children who use AAC, there is a need for further research examining the experiences of children at younger ages and at the periods of transition to adolescence and from child to adult health services in regards to their communication experiences. It is also important to discover the experiences of children who have used AAC systems successfully in hospital to determine which environmental and personal factors facilitate successful access and use in hospital. Further research is needed to evaluate the impact of the communication strategies raised in this study and in Hemsley et al. [28] on the hospital care experience for children with CP and CCN.

Conclusion As is their right [11–13, 15, 31], children with CP and CCN want at times to talk directly with hospital staff and need access to AAC systems to do so effectively. Apart from communicating with their parents, the children in this study needed AAC to communicate to gain attention and convey basic needs to hospital staff. Some parents in this study helped prepare their child by coaching them in communicative interactions expected in health settings, and reported that this had helped their child to become more confident and competent in communicating directly with healthcare providers. It is apparent that parents of children with CP and CCN manage several competing demands when their child is in hospital. Parents remain at the hospital for long periods to provide everyday care and support the child’s communication. However, parents cannot always be present at the bedside, (e.g. at the Recovery ward) and must also, often reluctantly, leave the hospital to fulfil other familial or work responsibilities. At times, they leave communication aids for staff to use in attempting to communicate directly with the child, but report these are rarely used. Lack of access to an AAC system was not the only barrier that parents perceived impeded effective communication for the children. Parents also described environmental factors, including lack of

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time for the child to communicate and hospital staff apparently lacking confidence and competence in using AAC systems. New hospital policies are needed to remove both opportunity and access barriers faced by children with CP and CCN in hospital, and to support the child’s competence in communicating using AAC systems with hospital staff. Training of communication partners and assessment of the child’s physical access needs in hospital might be necessary to use any communication boards made available to children to improve communication in hospital. One child’s story of successful communication using his own high technology AAC in hospital highlights the promising potential for children to be supported towards using AAC in direct communication with their healthcare providers. Addressing environmental barriers to communication in the hospital setting will require a multidisciplinary collaborative approach by healthcare providers in both community-based disability and hospital services [6, 28, 35]. Moving the findings of this research into policy and practice demands consideration of the views of hospital and community healthcare staff as key stakeholders in preparing children with CP and CCN for hospitalization and in supporting their communication in the hospital setting.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

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