Communicating with nurses: The experiences of 10 adults with cerebral palsy and complex communication needs

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1 Applied Nursing Research 20 (2007) Original Articles Communicating with nurses: The experiences of 10 adults with cerebral palsy and complex communication needs Susan Balandin, PhD a, 4, Bronwyn Hemsley, BAppSc a, Jeff Sigafoos, PhD b, Vanessa Green, PhD b a School of Communication Sciences and Disorders, The University of Sydney, Sydney, NSW 1825, 7001 Australia b The University of Tasmania, Hobart, Tasmania, 7001 Australia Received 25 September 2005; revised 18 February 2006; accepted 23 March This article is dedicated to Peter LoSurdo, whose in-hospital experiences inspired this research. Abstract The aim of this study was to explore the experiences of patients with cerebral palsy and complex communication needs (CCN) in hospital. Ten adults with cerebral palsy and CCN participated in semistructured interviews about their recent hospital experiences. Along with identifying barriers to successful communication, the participants suggested strategies to improve the hospital communication experience. The findings are discussed in relation to (1) preparing adults with cerebral palsy and CCN for communication in hospital communication and (2) training and supporting nurses in effectively communicating with these patients. D 2007 Elsevier Inc. All rights reserved. 1. Introduction Effective communication in hospital between patients and nurses is both an essential component of nursing care (Adair, 1994; Young, 1995) and a critical factor that affects the quality of patient care (Jarrett & Payne, 2000; Schmidt, 2003). Communicative interactions between hospital patients with cerebral palsy and complex communication needs (CCN) 1 and nurses can be problematic (Balandin et al., 2001; Barr, 1997; Kacperek, 1997). For example, difficulties may arise if the patient is unable to gain the attention of a nurse or if the nurse does not understand a patient s communicative attempts (Balandin et al., 2001; Hemsley et al., 2001). Furthermore, ineffective communication can be distressing for both patients and nurse and have serious 4 Corresponding author. P.O. Box 170, Lidcombe NSW Tel.: address: s.balandin@usyd.edu.au (S. Balandin). 1 Complex communication needs is the internationally preferred term to describe having limited or no functional speech: bsome people have complex communication needs associated with a wide range of physical, sensory and environmental causes which restrict/limit their ability to participate independently in society. They and their communication partners may benefit from using Augmentative or Alternative Communication (AAC) methods either temporarily or permanently.q (Balandin, 2002, p. 2). negative health consequences (e.g., anxiety and less-thanoptimal recovery; Russell, 1999). Nurses lack specific preparation in the care of patients with communication difficulties arising from a developmental disability (Walsh, Hammerman, Josephson, & Krupka, 2000) and have identified a need for training to help them communicate more effectively with patients who have developmental disabilities and CCN (Hemsley et al., 2001). A better understanding of the barriers to effective communication between patients with CCN in hospital and nurses as well as strategies to overcome these is necessary to develop appropriate communication training for nurses. The results of a study on nurses experiences in caring for patients who are unable to speak (Hemsley et al., 2001) indicated that although nurses are able to generate some successful communication strategies, overall, they experience considerable difficulty when attempting to communicate with patients who have little or no speech. In another study, patients with acquired communication impairment often relied on family members to support their communication and noted that problems in communicating with nurses affected their feelings of health and well-being (Balandin et al., 2001). Little is known about the communication experiences of patients with a developmental /$ see front matter D 2007 Elsevier Inc. All rights reserved. doi: /j.apnr

2 S. Balandin et al. / Applied Nursing Research 20 (2007) disability such as cerebral palsy. Given that these patients often lack functional speech, their communicative interactions with nurses may present a unique set of problems (Robillard, 1994). There is evidence that people with cerebral palsy may present challenges to health care providers. People with cerebral palsy have an increased risk of developing health problems (e.g., swallowing difficulties, depression, and chronic back and shoulder pain; Balandin & Morgan, 1997; Klingbeil, Baer, & Wilson, 2004), particularly as they get older (Australian Institute of Health and Welfare, 2003); as a result, they may enter the hospital more frequently than their nondisabled peers. Once hospitalized, these patients are likely to encounter a number of difficulties (Buzio, Morgan, & Blount, 2002), such as experiencing high levels of discomfort or anxiety related to their hospital care and relying on unpaid caregivers (e.g., family members) to meet their basic care needs. Some of these difficulties may stem from communication breakdowns between patients and nurses; however, there are limited data on this specific issue. For example, Buzio et al. reported that patients with communication impairments experience lower levels of satisfaction with hospital care than patients without communication impairments but did not explore the nature of the communication difficulties between patients and staff. The aim of this study was to explore the hospital experiences of adults with cerebral palsy and CCN to identify communication barriers and effective communication strategies between these patients and nurses. 2. Methods 2.1. Ethics approval Ethics approval for this study was granted by the University of Sydney Human Research Ethics Committee and the nongovernment organization that assisted in the recruitment of participants Participants Ten adults with cerebral palsy and CCN were recruited through a nongovernment organization that provides a range of services to patients with cerebral palsy. The head of the speech pathology unit within the service invited adults with cerebral palsy and CCN who had been hospitalized for 3 or more days in the past 2 years to participate in this study. Only those adults who could serve as their own informants (i.e., those who did not have an intellectual disability and had a functional method of communication) were included. The information sheet and consent forms were read to each participant to overcome any problem with literacy. All participants signed the consent form or instructed a witness to sign it in their behalf. Six participants used dysarthric speech to participate in the interviews, without the assistance of a family member or a friend as an interpreter. Four participants used their usual system of augmentative and alternative communication (AAC) Procedures Instrument development and pilot study The investigators, three nurses, and three individuals with disability and CCN (one with acquired brain injury and two with cerebral palsy) developed a draft version of the interview protocol (Balandin et al., 2001; Hemsley et al., 2001). This protocol was tested in pilot interviews with two adults with cerebral palsy and CCN who had been hospitalized in the past 12 months. We and the reference group then drafted a final interview protocol to address problems or gaps that were identified in the pilot interviews. The interview protocol was designed to explore the participants perspectives on the positive and negative experiences of being hospitalized with CCN with a specific emphasis on communication-related issues. The questions focused on (1) demographics, (2) communication in hospital, (3) preparation for hospital admission, (4) most recent hospital experiences, (5) use of communication systems and communication methods in hospital, and (6) communication strategies that would be helpful for nurses and patients alike. The interview protocol contained closed questions (e.g., bwere you able to communicate whenever you wanted to?q), rating scales with Likert-type scale response sets (e.g., never, sometimes, or always), and open questions (e.g., bwhat did the nurse do that made communication more successful for you?q) to encourage participants to elaborate on their experiences or explain their responses to the closed questions (Taylor & Bogdan, 1994). A copy of the protocol is available from the first author Interviews All semistructured interviews were conducted over a 3-week period and they took place in the participants workplace or residence and lasted for approximately 60 minutes. One member of the research team conducted the interviews and transcribed the responses orthographically in real time. At the end of each interview, the interviewee checked the written transcript for accuracy. The interviewer read the transcript to the participant if so requested. Each participant was encouraged to clarify responses and edit the transcript to ensure accuracy Data analysis After completing all 10 interviews, we analyzed the data quantitatively and qualitatively. Frequency counts were made for the number of participants who indicated each response (i.e., yes and no items as well as ratings on the Likert-type scales). The qualitative analysis was thematic (Miles & Huberman, 1994; Patton, 2002; Taylor & Bogdan, 1994). After each interview, we read the transcripts and classified the responses according to emerging themes to develop a set of clearly defined response

3 58 S. Balandin et al. / Applied Nursing Research 20 (2007) Table 1 Summary of the participants demographic characteristics Participant Sex Age (years) Total no. of admissions in the last 2 years Total no. of days hospitalized in the last 2 years Ward setting a 1 Female 61 1 b 38 Surgical 2 Female 35 4 b 13 Emergency/Medical 3 Male 45 4 b 52 Emergency/Surgical/Medical 4 Male Medical 5 Female 48 1 b 7 Surgical 6 Male 57 1 b 14 Surgical/Medical 7 Male 51 2 b 18 Emergency/Surgical 8 Female 49 3 b 79 Surgical/Intensive care unit/rehabilitation 9 Male 39 1 b 7 Surgical 10 Female 41 2 b 14 Emergency/Medical a Where the participant received the nursing care discussed. b Most recent stay occurred within the last 12 months. categories (Miles & Huberman, 1994). New categories to accommodate responses that did not fit into an existing category were added as the analysis progressed. Our aim was to identify and catalog themes that would adequately represent the interpretation of meaning within the participants responses (Ezzy, 2002). We reviewed the initial categories and reached the final identification of themes through consensus. 3. Results Five male and five female patients with cerebral palsy and CCN who were between 35 and 61 years old participated in this study Number of admissions and ward type The number of admissions in the previous 2 years for the 10 participants ranged from one to four, with a mean rate of two admissions. Ward types included the emergency department (n = 4), intensive care unit (n = 1), medical ward (n = 5), surgical ward (n = 7), and rehabilitation ward (n = 1). Six of the participants had been admitted to more than one ward type during their hospital stay. The participants length of hospital stay ranged from 7 to 79 days (M = 24.9 days). Data on the number of admissions and length of stay for each participant are shown in Table Methods of communication Before their hospitalization, the participants used a wide variety of communication strategies that included speech, use of speech-generating devices (SGDs [electronic form of AAC]), communication boards or books, and the assistance of family members or friends as interpreters. The participants methods of communication before and during hospitalization are summarized in Table 2. All participants reported that they encountered some difficulties in making themselves understood by the nurses but had no difficulty in understanding what the nurses said to them. The five participants who did not use AAC outside of the hospital continued to rely on their dysarthric speech and nonverbal methods of communication (e.g., facial expression and body language) to communicate directly with nurses in the hospital. One participant anticipated that nurses might have difficulty with understanding her speech and took a custom-made picture communication board with her to the hospital. However, she reported that this method of communication was not useful because the nurses did not know how to communicate with her using the board. Of the four participants who routinely used AAC systems outside of the hospital setting, only two used any of their usual AAC methods in the hospital. One participant used a communication board plus writing, the other participant Table 2 Participants usual method of communication and method of communication in hospital Participant Usual method(s) of communication Method(s) of communication in hospital 1 Dysarthric speech Dysarthric speech 2 Dysarthric speech Dysarthric speech 3 SGD and spelling board No AAC, no functional method of communication, and no interpreter assistance 4 Dysarthric speech and writing Dysarthric speech 5 Dysarthric speech and verbal spelling out of words Dysarthric speech 6 Dysarthric speech Dysarthric speech and interpreter assistance from wife 7 SGD, dysarthric speech, and interpreter assistance Dysarthric speech and interpreter assistance (spouse) 8 Dysarthric speech Dysarthric speech AAC picture communication board was brought to the hospital but not used 9 Dysarthric speech Dysarthric speech and interpreter assistance from mother 10 SGD, dysarthric speech, alphabet board, and writing Dysarthric speech, alphabet board, and writing SGD indicates speech generating device.

4 S. Balandin et al. / Applied Nursing Research 20 (2007) spelled out words on his leg using his finger. The three participants who usually used electronic SGDs outside of the hospital reported that they did not take their systems with them for use in the hospital. They stated that their devices were expensive and feared that these might be lost or broken in a hospital ward. One participant reported that he was too ill to hold and use the SGD and worried that he would drop and damage the device while he was hospitalized. Another participant who had no speech and who did not take his AAC system with him to the hospital reported that he had no way to communicate with the hospital staff during his hospitalization without his system. Eight participants stated that taking some form of AAC (e.g., picture, word, and alphabet communication board) might have assisted them in communicating with the nurses in the hospital. However, all the participants reported that they received no support from the hospital staff, including speech pathologists, either to use their usual communication system in the hospital or to develop a functional communication system for use during their hospital stay Ratings of communication in hospital When asked to rate the overall success of their communication in the hospital, three participants reported that they were bsomewhat successfulq and two reported that they were bnot at all successfulq in communicating with the hospital staff. The two participants who were bnot at all successfulq had no access to any form of AAC in the hospital and did not have the support of a caregiver to assist them in communicating or with the interpretation of their communicative attempts. Four participants reported being bmostly successfulq in their communication with the nurses. One participant reported that his communication with the nurses in the hospital was balways successfulq because his mother acted as an interpreter for him. This patient rated his communication experiences with the nurses as balways positive.q Seven other participants rated their communication experiences in the hospital as being bboth positive and negative.q Two participants rated their communication experiences as bmostlyq or balwaysq negative and bneverq successful. When rating their experiences, six participants commented that the variability in the nurses skills and communicative behaviors affected their overall communication experience Identified communication barriers during hospitalization All participants reported that their CCN resulted in barriers to communicating with nurses when necessary. Reasons given for these barriers included (1) not having a way to communicate, (2) not having the opportunity to communicate, (3) lack of understanding by nurses of patient s communicative attempts, and (4) nurses not responding to patient s communicative attempts. The participants also reported that fluctuations in their own health and feelings of anxiety during their hospitalization made communication more difficult. The participants perceived that the lack of an effective communication system limited their ability to successfully initiate a message when they wanted or needed to communicate with nurses. Their descriptions of negative experiences included not being able to communicate their basic needs. Participant 2 explained, bthey [nurses] got angry when I wet the bed. They didn t understand I needed a pan.q In addition, Participant 1 said: When you are telling them what is the best way to handle you without hurting you or themselves, they just don t hear or listen and you ve got to do it their way, and you both find out [their way] is the inappropriate way. They say dno, no, no, you don t know.t This last incident with my leg, I could stand up at the foot of the bed and say how to do the footplates, but he didn t put the footplates up and he banged them into my leg that I had the operation on. Another nurse did exactly what I told her and had no problem. The participants also noted that some nurses did not take time to listen or look at the patients own written information. Participant 5 said she had prepared for communication with the nurses in the hospital by taking written information on bhow to assist with my meals and do my personal care, how to handle me, turn me over, make me comfortableq but noted that bit wasn t that useful they didn t look at it.q In addition, the participants identified situations in which nurses did not have time to stop and communicate or spoke over the patient to the caregiver. Participant 10 thought that this related to the nurses discomfort with interacting with a patient with CCN: People like to be in their comfort zone, but if third person comes in [to the interaction], because people like to speak in their comfort zone, they talk to the third person and I m blocked out, because I can t speak as fast. I believe they re not aware that this is happening Difficulties accessing the call system Eight participants reported that gaining the nurse s attention was a common difficulty encountered in the hospital. Only two participants reported that they were balwaysq able to reach and use the call button in the hospital. The four participants who reported being able to use the call button bsometimesq said they were unable to use it on at least one occasion because it was out of reach. Participant 9 reported: I can t complain, but one night they woke me up and gave me a needle; it came out and there was a lot of blood [and] they never came back to clean me up I couldn t reach the buzzer so I went back to sleep. One participant reported that she used the call button successfully on one night but that it was placed out of reach the following night. She thought that the nurse had forgotten to put the call button back into place.

5 60 S. Balandin et al. / Applied Nursing Research 20 (2007) Four participants reported that they were bnever ableq to use the call button because of limitations in hand function as a result of their cerebral palsy. These participants reported trying to vocalize to gain attention or having to wait for nurses to initiate interactions with them Consequences of communication barriers Physical and psychosocial consequences The participants comments reflected various physical and psychosocial consequences of difficulties in communicating with the nurses in the hospital. These consequences included difficulties in (1) explaining methods for comfortable positioning, (2) participating in their own diagnoses and health management in the hospital, and (3) gaining access to necessary assistance for or explaining methods of basic care (e.g., mealtimes, toileting, personal care, and showering or bathing). Five participants said they were physically uncomfortable because they could not communicate instructions on how they would like to be positioned by nursing staff. For example, Participant 10 noted: When I first went in it was hard because I couldn t make them understand. When I went to bed, they put me on my back, and I don t feel comfortable that way and nobody came until later I was sad, uncomfortable, and frustrated. Nine participants noted that the nurses inability to understand them led to emotional responses, such as feeling frustrated (n = 6), angry or distressed (n = 5), depressed or sad (n = 3), lonely (n = 1), unsafe (n = 3), and guilty (n = 1) General perceptions of treatment as a result of communication barriers All the participants felt that at least bsomeq nurses treated them differently from how they treated other patients (e.g., speaking with a patronizing tone, assuming intellectual disability, or not taking notice of them) because of their difficulties in communicating. In addition, the participants reported that the nurses did not interact with them as often as they did with other patients. They reported that some nurses ignored them, avoided eye contact, or walked away during an interaction. One participant perceived that nurses thought she could not speak on the phone and hence did not put calls through to her Length of stay and recovery Participants differed in their views on the impact of their CCN on their length of stay in the hospital and recovery. Two participants felt that their CCN and lack of communication success in the hospital affected their progress and recovery as they were not able to communicate their medical needs successfully. Four participants considered that their difficulties with communication increased their length of stay in the hospital Strategies for improving communication experiences with nurses in the hospital All but one participant (who reported that he simply gave up trying to communicate) mentioned using a number of repair strategies when communication breakdowns occurred. These strategies included repeating the message (n = 5), spelling out words to augment the spoken message (n = 2), and turning to family members to interpret communication (n = 3). Participant 4 stated: When I first met somebody I always said, don t be frightened to ask me to repeat it, because I know if you don t understand me even if you don t say it. So the nurses did that, most of them. One participant noted that when she repeated the message, she did so with more effort. However, another participant commented that having to repeat messages was very tiring. Despite reports that patients with CCN do not like to rely on others to communicate for them (Robillard, 1994), three participants reported on the benefit of having the support of an unpaid caregiver (e.g., parent or spouse) to assist them in communicating with nurses. These three participants noted that, along with providing communication support, the unpaid caregiver assisted in their physical care, provided emotional support, and eased potential problems in care and communication. All participants described specific strategies used by nurses that increased communication success. These strategies included nurses stopping and taking the time to listen, being willing to keep trying to understand the patients, and responding to the patients communicative attempts. Eight participants noted that the communication experience was more positive when nurses took the time to interact with them Nurse education The participants were asked about what they thought nurses should know about CCN to facilitate better care. Participants stated that nurses should (1) know about AAC (n = 6), particularly how to use an alphabet board or a communication book; (2) have access to AAC equipment (e.g., a communication board) in the ward (n = 3); (3) have training on caring for patients with cerebral palsy and CCN (n = 5); (4) ask family members or friends to help with communication and provide information about their interests, preferences, skills, and needs (n = 4); (5) not assume that patients have an intellectual disability (n = 5); and (6) take enough time to talk and inform patients when they did not understand the patient s message rather than pretend to understand (n = 6). One participant s comment reflected that the presence of CCN, over and above the presence of cerebral palsy, was important: bi found that they knew about cerebral palsy, but they didn t have any experience with my speech problem; the problem is, everyone s speech is different.q All participants said it was important that nurses receive training

6 S. Balandin et al. / Applied Nursing Research 20 (2007) to increase their knowledge on how to best communicate with patients with CCN in the hospital. 4. Discussion The issues that emerged from these interviews suggest that hospital experiences for adults with cerebral palsy and CCN can be difficult and frustrating for patients and nurses alike. The communication barriers experienced by patients with CCN and the lifelong disability of cerebral palsy were similar to those experienced by patients with acquired CCN (Balandin et al., 2001). In this study, the responses obtained during the interviews not only highlight the complexity of communicative interactions but also point to several practical strategies that might facilitate more effective communicative interactions between patients with cerebral palsy and nurses. Many of the difficulties experienced seemed to result from a limited opportunity for communication coupled with nurses (1) not being familiar with the participants individual communication support needs and (2) lacking familiarity with or access to AAC systems. An important finding was that 8 of the 10 participants were unable to use the call button at all times during their hospital stay and thus could not gain the attention of a nurse. Gaining attention is a basic communication need in the hospital for all patients (Fried-Oken, Howard, & Roach Stewart, 1991). All patients need to have some effective means to summon assistance, especially when they are unable to speak. Lack of access to the call button can be both dangerous and disempowering if patients are dependent on others to meet their needs and have no means of communicating with nursing staff. Effective use of a call button fulfills a valuable nonverbal communicative function of calling for attention or raising an alarm. Nursing staff may need education and support to ensure that patients with motor impairment have a call system that they can activate (e.g., using adaptive switches connected to the existing call or a remote switch activated call button). Some participants considered that their inability to communicate resulted in the nurses lack of interest in them as individuals. In addition, some patients said the nurses ignored them. This perceived lack of interest or caring has been noted in other studies (Balandin & Morgan, 1997; Beukelman & Mirenda, 1998). Many participants suggested that positive communication experiences depended to some extent on emotional connectedness, empathy, and taking the time to listen. These qualities may also influence the success of communicative exchanges (Robillard, 1994). Some communication problems experienced by patients with cerebral palsy and CCN may be prevented or reduced if nurses have knowledge and skills related to AAC and if hospital wards have a variety of AAC systems for use by patients (Hemsley et al., 2001). There is some evidence that nurses are beginning to encounter the use of AAC in hospital. Nurses have reported that they seek ways to communicate with patients with CCN (Hemsley et al., 2001), and patients with acquired CCN have described nurses assisting with spelling, using alphabet boards, and charging AAC devices (Balandin et al., 2001). However, the findings of this study indicated that patients perceived that not all nurses were able to facilitate successful communication and that some nurses avoided communicating with patients with CCN. Nurses may require further training in appropriate ways to interact with patients with cerebral palsy and CCN. Training could include information about cerebral palsy, AAC strategies and skills, and ways to increase proficiency in providing communication support in the hospital. The strategies provided by the participants in this study could be included in future in-service training modules for nurses. The positive role of unpaid caregivers in providing support in the hospital was emphasized by many of the participants. This is consistent with earlier reports of nurses reliance on unpaid caregivers for assistance in communicating with patients with CCN (Hemsley et al., 2001). However, adults with cerebral palsy and CCN and nurses need to be aware that unpaid caregivers find being present at the hospital for extended periods stressful and exhausting (Hemsley & Balandin, 2004). Therefore, it is vital to improve direct nurse patient communication to reduce reliance on unpaid carers for communication support in the hospital. Successful communication between patients with CCN and nurses in the hospital is a collaborative process. If their admission is planned, patients with communication difficulties need preparation before their admission to use multiple methods of communication in the hospital. This could include a briefing session with key ward staff that incorporates access issues, acknowledges time constraints of nurses, and includes strategies for repairing and improving communicative interactions between patients and nurses. In addition, patients and nurses might benefit from access to a speech pathologist or an AAC specialist who can support the design and use of AAC in the hospital. 5. Limitations and directions for future research This study should be seen as a preliminary attempt to document the hospital communication experiences of individuals with cerebral palsy and CCN. It involved 10 participants who used a variety of communication methods within a variety of ward settings in metropolitan teaching hospitals. Nevertheless, their experiences were similar to those of other patients who have reported their experiences of being in the hospital with no functional speech (Balandin et al., 2001; Robillard, 1994). Participants in this study had been admitted to a variety of wards (e.g., rehabilitation and surgical). It is possible that the results may have differed if more participants had been admitted to wards in which nurses routinely had exposure to AAC. In light of these limitations, further research with larger and more homogeneous samples is necessary. There is a growing body of evidence indicating that patients with CCN

7 62 S. Balandin et al. / Applied Nursing Research 20 (2007) encounter a number of difficulties when communicating with nurses in the hospital. These difficulties may be related to limited understanding, availability and use of AAC, and lack of opportunities to communicate and interact directly with nurses in the hospital. The absence of an effective means of communication with nurses in the hospital may have negative consequences for others at risk for CCN (e.g., individuals with intellectual disability or autism). Consequently, additional education for nurses on how to foster effective communicative interactions with a range of patients who are unable to communicate effectively via speech in a variety of ward settings is needed. All patients need to feel that they are receiving good care and attention in the hospital. Similarly, nurses need to feel that they are properly trained to care for all the patients in their wards. Clearly, further research and evaluation of communication training for patients with CCN and nurses in the hospital are required. Acknowledgments This study was funded by a Northern Sydney Area Health research grant, Sydney, NSW Australia. We thank the participants, the members of the reference group who advised us on the project, and the Center for Developmental Disability Studies (Sydney, Australia) for their collaborative contributions to this study. References Adair, L. (1994). The patient s agenda. Nursing Standard, 9, Australian Institute of Health and Welfare. (2003). Disability prevalence and trends. Canberra7 Australian Institute for Health and Welfare. Balandin, S. (2002). Message from the president. ISAAC Bulletin, 67, 2. Balandin, S., Hemsley, B., Sigafoos, J., Green, V., Forbes, R., Taylor, C., et al. (2001). Communicating with nurses: The experiences of 10 individuals with an acquired severe communication impairment. Brain Impairment, 2(2), Balandin, S., & Morgan, J. (1997). Adults with cerebral palsy: What s happening? Journal of Intellectual and Developmental Disability, 22(2), Barr, O. (1997). Care of people with learning disabilities in hospital. Nursing Standard, 12(8), Beukelman, D. R., & Mirenda, P. (1998). Augmentative and alternative communication: Management of severe communication disorders in children and adults (2nd ed.). Baltimore7 Paul H. Brookes Publishing Co. Buzio, A., Morgan, J., & Blount, D. (2002). The experiences of adults with cerebral palsy during periods of hospitalisation. Australian Journal of Advanced Nursing, 19(4), Ezzy, D. (2002). Qualitative analysis: Practice and innovation. Sydney7 Allen & Unwin. Fried-Oken, M., Howard, J. M., & Roach Stewart, S. (1991). Feedback on AAC intervention from adults who are temporarily unable to speak. Augmentative and Alternative Communication, 7, Hemsley, B., & Balandin, S. (2004). Without AAC: The stories of unpaid carers of adults with cerebral palsy and CCN in hospital. Augmentative and Alternative Communication, 20, Hemsley, B., Sigafoos, J., Balandin, S., Forbes, R., Taylor, C., Green, V. A., et al. (2001). Nursing the patient with severe communication impairment. Journal of Advanced Nursing, 35(6), Jarrett, N., & Payne, S. A. (2000). Creating and maintaining boptimismq in cancer care communication. International Journal of Nursing Studies, 37, Kacperek, L. (1997). Non-verbal communication: The importance of listening. British Journal of Nursing, 6, Klingbeil, H., Baer, R., & Wilson, P. E. (2004). Aging with a disability. Archives of Physical Medicine and Rehabilitation, 85(S3), S Miles, M. B., & Huberman, M. A. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). Thousand Oaks, CA7 Sage Publications. Patton, M. Q. (2002). Qualitative research & evaluation methods (3rd ed.). Thousand Oaks, CA7 Sage Publication. Robillard, A. (1994). Communication problems in the intensive care unit. Qualitative Sociology, 17, Russell, S. (1999). An exploratory study of patients perceptions, memories and experiences of an intensive care unit. Journal of Advanced Nursing, 29, Schmidt, L. A. (2003). Patients perceptions of nursing care in the hospital setting. Journal of Advanced Nursing, 44(4), Taylor, S. J., & Bogdan, R. (1994). Qualitative research methods and community living. In M. F., Hayden, & B. H., Abery, (Eds.), Challenges for a service system in transition (pp ). Baltimore7 Paul H. Brookes Publishing Co.; Walsh, K. K., Hammerman, S., Josephson, F., & Krupka, P. (2000). Caring for people with developmental disabilities: Survey of nurses about their education and experience. Mental Retardation, 38, Young, A. (1995). Complaints. British Journal of Nursing, 4, 59.