Communication experiences of family caregivers of hospitalized adults with intellectual and developmental disabilities—A qualitative study

Abstract Aim To explore communication experiences between family caregivers of adults with intellectual and developmental disabilities (I/DD) and healthcare personnel during hospitalization. Design A qualitative descriptive study approach with interviews of family caregivers was used. Method Face‐to‐face, semi‐structured interviews were conducted from June–September 2015 with ten family caregivers of adults with I/DD. Participants were recruited through an advocacy organization in the north‐eastern United States. Data were analysed by content analysis. The Standards for Reporting Qualitative Research was the chosen checklist. Results The four overarching themes: “Need for Advocacy”; “Need for Better Communication”; “Sense of Abandonment”; and “Lack of Confidence” along with 12 subthemes were identified. Overall, participants reported miscommunications leading to instances of mistrust in hospital staff's competence to deliver quality patient care.

Individuals with I/DD have different levels of communication challenges; nevertheless, they do communicate. Communication patterns employed by these individuals may be categorized as pre-symbolic, symbolic or verbal (Boardman, Bernal, & Hollins, 2014). At least 80% of individuals with I/DD have communication impairments; some use pre-symbolic methods and depend on others to anticipate their needs; 60% use symbolic methods such as pictures and signs to communicate (Emerson, 2001).
Caregivers serve as surrogate communicators because of their in-depth knowledge of their loved ones, including communication patterns. Persons with I/DD often rely on family caregivers to provide hospital personnel with their health history, care needs and guidance about level of functioning (Hemsley & Balandin, 2014).
Consequently, caregivers' interactions with hospital personnel may have a great on patient safety and satisfaction.
Caregiver participation in the care of their loved ones is relevant to all populations, especially for adults with I/DD. This is especially true for adults with I/DD, as they rely on caregivers more than the average population because of communication challenges. There are negative implications for patient care outcomes if caregivers and hospital personnel do not communicate effectively. Generally, research about the experiences of caregivers of adult patients with I/DD is limited (Lunsky, Tint, Robinson, Gordeyko, & Ouellette-Kuntz, 2014).
Exploring the communication experiences of family caregivers of adults with I/DD during hospitalization, through this qualitative descriptive study, allowed caregivers to voice their perspectives on interactions with hospital staff. The present study contributes to the literature in that it is from the perspective of caregivers who had a hospitalized adult family member with I/DD. In addition, the results of this study have the potential to have an impact on nursing practice.

| BACKG ROU N D
During hospitalization, problems communicating with patients and families have an impact on the following: (a) obtaining medical histories; (b) treatment plans; (c) patient satisfaction; (d) diagnostic procedures; (e) health prevention measures; (f) accessibility; and (g) attitudinal barriers (Minihan et al., 2011). Interactions between hospital staff and adults with I/DD were a common concern in the literature. However, there is a paucity of research on caregivers of adults with I/DD during acute care hospitalization.
In a study of 35 individuals with cognitive and physical disabilities, who could advocate for themselves, participants described nursing care received during hospitalization (Smeltzer, Avery, & Haynor, 2012). They reported poor communication with nursing staff, lack of competence and negative attitudes as reasons for receiving inadequate care. Ineffective care included not being provided with the extra time persons with disabilities require to eat, bathe and get out of bed nor were they given adequate time for questions and answers. The study also found assessment deficiencies such as hospital staff not being able to identify the degree of patients' communication deficits. Based on the study's outcome, persons with disabilities may be at higher risk for injury whether they can advocate for themselves or not.
Studies have revealed that communication issues between these adults and hospital personnel may contribute to negative staff attitudes, poor health outcomes and increased risk for complications (Smeltzer et al., 2012). Ailey, Johnson, Fogg, and Friese (2015) indicated that adults with intellectual disabilities were twice as likely to have complications following a surgical procedure and were nearly four times as likely to have complications if they had been diagnosed with cerebral palsy, autism spectrum or aggressive behaviour.
Several other studies accentuated a lack of original research on adults with I/DD in the acute care setting. Bigby (2008) conducted a study about the health of adults with I/DD; however, the participants were living in the community instead of during a hospitalization. Although Bradbury-Jones et al. (2013) focused on the acute care setting, their approach was a literature review. Furthermore, much of the research, similar to Hemm, Dagnan, and Meyer (2015), had been conducted in the United Kingdom and Australia limiting the applicability of the results because of different healthcare systems and geographic locations.
Lewis and Stenfert-Kroese (2010) concentrated on the experiences of nurses caring for individuals with intellectual disability. Miller et al. (2016) investigated the hospital experience of patients and their informal caregivers. Their findings about caregivers were applicable to the general patient population and not specific to adult patients with I/DD. The literature indicated the need for further investigation on adults with I/DD and caregivers (Bigby, 2008;Bradbury-Jones et al., 2013;Hemm et al., 2015;Lewis & Stenfert-Kroese, 2010;Miller et al., 2016).
Patients and family caregivers are often viewed as a unit because of their physical, emotional, psychological, financial and social history (Stavrou et al., 2017). Omitting caregivers from the treatment plan prevents them from sharing valuable health information (Wolff, Spillman, Freedman, & Kasper, 2016). Facilitating caregivers to act as surrogate communicators can minimize negative outcomes. Hence, this study examined how family caregivers of hospitalized adults with I/DD perceived their communication experiences with healthcare personnel.

| Design
The research question guiding this study was: How did family caregivers of hospitalized patients with intellectual and developmental disabilities perceive their communication experiences with healthcare personnel?
The study provided family caregivers a voice in describing their interactions with hospital staff. A qualitative descriptive approach was used to gather responses to open-ended questions and probes from the family caregivers' perspective (Colorafi & Evans, 2016). Fifteen caregivers volunteered to participate in the study. Two volunteers were not selected because the relatives with I/DD were below the age of 30. Three did not qualify because the relative's hospitalization took place more than 3 years prior to the study. A total of 10 caregivers were selected consisting of five parents, three siblings and two siblings-in-law. Six females and four males participated. They were 60% Caucasian, 30% Black/African American and 10% Hispanic.

| Method
The demographic information for participants is shown in Table 1.
Caregivers were 60-82 years old with a mean of 72.1. At the time of hospitalization, the patients were between 35-62 years old with a mean of 50.4, consisting of two females and five males. The time between patient hospitalization and caregivers' interviews is included in Table 1 and ranged from 6 months-3 years with a mean of 1.71.
Interviews were conducted between June-September 2015 and took place in private homes or offices based on the caregiver's choice. Each caregiver received a consent form via postal service or email 2 weeks prior to scheduling the interview. Each interview began with the investigator reviewing the consent. Risks and benefits of taking part in the study were reviewed with caregivers. The investigator answered the caregiver's questions and witnessed the caregiver signing the consent form. In addition, the caregiver filled out a demographic questionnaire which is available in Appendix S1.
Confidentiality was established by using a set of numbers chosen by caregivers to identify themselves. Initials unrelated to caregivers' names were used during the interviews. All data were kept in a locked cabinet in the investigator's office.
Using a face-to-face and semi-structured format allowed the investigator to observe cues from interviewees to explore topics further. In-depth questions and probes facilitated caregivers' revelations of their lived experiences and perceptions about their communication experiences with healthcare personnel. Lastly, field notes on body language, facial expressions and non-verbal cues were recorded in the investigator's journal.
Each interview was audiotaped and lasted approximately 45 min.
After eight interviews, saturation was reached. Two additional interviews were conducted to ensure all relevant factors were included.
A professional transcriptionist transcribed the audiotaped interviews. Individual findings were mailed to each caregiver for review prior to a follow-up telephone call by the investigator. Telephone calls lasted 10-15 min. This process of member checking presented caregivers the opportunity to elaborate or clarify interpretations. Caregivers agreed that reports reflected their views and requested no changes.
Components of the study such as topic, context, data collection process, analysis and selection of participants were structured to meet the criteria for credibility, dependability and confirmability (Guba & Lincoln, 1989). To assure credibility, an outside disinterested researcher who was an expert in qualitative methods evaluated the study. Dependability was addressed through the investigator maintaining detailed notes and rich descriptions of the study format, data collection and analysis. A reflexive journal ensured the study's confirmability. Caregivers who shared the common experience of being family caregivers for adults with I/ DD who had been hospitalized were selected, thereby increasing the probability of discovering elements most relevant to the issue (Guba & Lincoln, 1989). Detailed descriptions of methodology, procedures and data collection satisfied the dependability criteria, thus allowing the study to be replicated in the future (Guba & Lincoln, 1989

| Ethics
Institutional Review Board (IRB) approval was obtained in 2015 from Nova Southeastern University (NSU No. 05061504). The investigator followed the ethical guidelines of the Collaborative Institutional Training Initiative. This is a programme which educates researchers on ethics and regulatory oversight governing responsible conduct in research.

| Analysis
Conventional content analysis was employed. According to Hsieh and Shannon (2005), conventional content analysis is appropriate to describe a phenomenon when existing theory or research on the phenomenon is limited. The investigator read the text several times to obtain a general sense of the data, to gain new insight and extracted categories from the data.
Transcripts were read several times before categorizing the data.
The investigator extracted meaning from statements, words, phrases and sentences. Recurrent words or phrases were grouped together.
The unit of analysis was phrases representing the smallest segment of text reflecting a participant's meaning (Elo & Kyngas, 2008). Phrases were initially labelled as codes (Creswell, 2002(Creswell, /2012. Phrases with similar meaning were grouped according to descriptions to form in vivo codes. A codebook of 16 subthemes was developed (Fonteyn, Vettese, Lancaster, & Bauer-Wu, 2008). Potential themes were identified during this phase. The final list was condensed, and subthemes reduced to fewer themes. A mentor also reviewed the data to confirm that categories, themes and subthemes were consistent.

| RE SULTS
Quotes from caregivers were analysed. Four themes and 16 subthemes were generated and formatted into Table 2.

| Need for advocacy
Advocacy required caregivers' presence due to patients' limited verbal ability. Crying could be a response to discomfort; meanwhile, silence may not indicate that all is well. Four subthemes emerged: "Have to be there"; "They don't ask"; "Having to tell them"; and "Support."

| Have to be there
Hospitalization placed physical and emotional burdens on caregivers. Caregivers felt they had to be vigilant, resulting in the caregiver or a surrogate being constantly at the bedside.

| They don't ask
Several caregivers stated that nurses did not ask questions about patients' level of functioning and/or communication patterns.

| Having to tell them
Informing hospital staff about I/DD as a permanent condition was a common thread in the study. Specifically, caregivers revealed staff was poorly informed about older adults with I/DD. Statements implied the deficiencies were numerous.

| Support
Some caregivers noted residence personnel were better resources for information about their loved ones than hospital staff. However, there were situations where hospital staff provided adequate support.

| Need for better communication
Patients with impaired verbal skills require communication tailored to their abilities. Four subthemes emerged from caregivers' descriptions: "Talking to the patient"; "Get the message across"; "Talk to me"; and "Work with me."

| Talking to the patient
Several caregivers remarked staff did not address the patients because these individuals were presumed to be more limited than they were. Notably, one caregiver reported a very positive experience because a physician spoke directly to her sister.

| Get the message across
Some caregivers expressed staff was unable or unwilling to interpret patients' cues. However, one caregiver remarked hospital staff did correctly interpret her daughter's communication patterns.

| Talk to me
Several caregivers conveyed not receiving information about patients' care. One caregiver emphasized frustration at not being heard, leading to distress for himself and his sister. Another caregiver stressed the importance of listening to the caregiver.

| Work with me
Caregivers expressed healthcare professionals should include them in information sharing and decision-making. Caregivers felt they had a wealth of information to share.

Need for Better Communication
Talking to the patient "… With the nurses what we tried to do was to get them to understand who Bob was…We shouldn't talk of him as a third person that they should see him as a human being… So, we tried to instill in them to see Bob as another patient that was in need of medical care and that he was just like everybody else." (Mr. E) "It's frustrating because people enter into the room and as soon as they see my sister they're very leery and they don't know how to approach her and many times what they do is they just don't talk to her…Interestingly enough, the physician in this particular hospitalization was phenomenal. I felt very comfortable with her, and I think the reason why I felt comfortable was my observation of how she treated my sister. She treated her like a human being, she spoke with her." (Mrs. F) "Since he cannot communicate they have to, what you call it, they have to … No, they can't communicate with him, they communicate with me or the person who stays with him, like an aide." (Mrs. H) Get the message across "Post-operatively he had a lot of distention and a lot of gas and the way he handled [expressed] that was to cry and cry and cry. So, he was in the PACU [Post Anesthesia Care Unit] and they were getting ready to close for the night and the nurse there said, 'take your brother and his bellyache and go home'." (Mrs. E) "Alice was just, truthfully, a very easy kid and happy and she would smile and that's all they needed to see… it wasn't charades but somehow she got her message across, believe me." (Mrs. B) Talk to me "…They seemed to be treating her as a delirious person, a behavioral issue. So her flailing around, her hitting, her whatever screaming she might have done, no matter how much we told them this is not her, she's never behaved this way. The emergency room doctor, you know, who's doing the examination and they weren't exactly comforting to either her or to me… I don't know how I would've reacted, but I probably would've trusted what the brother was saying. It was painful to watch; I was crying afterwards. I don't usually cry." (Mr. J) "Hear what the person wants … to listen and to listen and to listen. To not prejudge, to take the time that's necessary to know that the family member may be a pain in the neck, I'm sure I was, but it's because the person, him or herself…is going through what they're going through, they're scared, they're in pain, they can't breathe, you know, whatever is wrong so the family member has the experience of feeling pain of their loved one and at the same time having to fight for them. "Well again there are rules hospitals have to follow, I understand, but there also should be some consideration of the special population that they're dealing with and that could be as simple as, you know, reaching out to the caregiver." (Mr. J) "I would feel sorry for the patient because he doesn't understand that you have to stay there without having a glass of water…and you're there 6 hr, we had to sneak it to him, you know. So, I think that, you know, especially when they're disabled that they need that extra…Get them done and move them." (Mrs. C) "Truthfully the last time she went to the hospital was when she did die and she really had regressed so much by then but everybody was so nice. She was in ICU almost the whole time she was there, that time she got extra care." (Mrs. B)

Lack of Confidence
It happened "Yes, it did happen. He takes a lot of medication…So I try to be as clear as I can to the nursing staff or the doctors with this is what my son takes…Vimpat 250 in the morning and he takes 300 of Vimpat in the evening and I think they reversed it. I feel if I were to just sit down and read a book or sleep while my son is in the bed mistakes could happen." (Mrs. A) "So it's the lack of sensitivity, the way people say things, the lack of experience and then in other times, when he was immobile staff moved him like a sack of potatoes; he was short; he was heavy at times and they just threw him around." (Mrs. E) I was scared "What I wanted to do was establish a situation where the nurse would work with me first and try to show my sister what was going to happen, with IV's, etc., and when the nurse came in and I tried to say to her I'm my sister's legal guardian can I speak to you outside for a minute… She didn't wait for me she went down to the nurse's station and I heard her say to the other nurses 'this one thinks she's some kind of doctor' (Mrs. F) "Though both of those experiences were so frightening to me that never, ever, ever would I have her be alone, I was with her constantly in the hospital." (Mrs. F) "Sometimes I feel the doctor doesn't care much for him because I don't know, because he doesn't speak or because…I don't know sometimes for some reason I don't feel comfortable…When he is in the hospital since he cannot speak he has to be tied up…They restrain him, that's the word, that, you know, affects me…It affects me when I see them restraining my son …and he can communicate with me." (Mrs. H) Had not a clue "In other cases people acting like they had not a clue how to work with somebody who was 60 + years and developmentally disabled…My brother also had Down's Syndrome and many health professionals still think that they should've died in infancy or childhood or young adulthood and are surprised to see them living as long as they are." (Mrs.

| Sense of abandonment
Inattention to patient and caregiver needs left several caregivers with a sense of abandonment. Delays in the Emergency Departments compounded patient anxiety and behavioural problems. Four subthemes arose: "Waiting," "Just let them lay there," "Just leave me" and "Need for extra care."

| Waiting
Waiting for extended periods led caregivers to believe staff was not tailoring care to patients. A caregiver transferred her son to another hospital to circumvent the wait.

| Just let them lay there
Caregivers interpreted delays as neglect. Many remarked that their loved ones were overlooked.

| Just leave me
Several caregivers reported feeling compelled to stay at the bedside even though they were exhausted. Caregivers also interpreted being left alone to provide care for the patient as being taken advantage of.

| Need for extra care
The need for extra care was especially important during admission.
Of note, a caregiver reported extra care was afforded to her daughter because she was in the intensive care unit.

| Lack of confidence
Several caregivers revealed a lack of trust in the hospital staff's ability to care for the patients. The subthemes were as follows: "It happened"; "I was scared"; "Had not a clue"; and "Put yourself in the place of the family."

| It happened
Caregivers voiced complaints about medications, assessments and nursing care.

| I was scared
Various caregivers verbalized that communication issues compromised patient safety, causing caregivers to feel afraid and protective of their loved ones.

| Had not a clue
Some caregivers viewed the lack of experience of hospital staff as a lack of caring or knowledge.

| Put yourself in the place of the family
To understand their concerns, a few caregivers suggested hospital personnel demonstrate empathy. In summary, several caregivers reported encounters with hospital staff leaving them feeling isolated or afraid to the extent they had to stay with their loved ones. Other caregivers described the care received as not being equitable resulting in the perception that some hospital staff were biased and uncaring. Overall, caregivers expressed a lack of confidence in the staff's ability to care for adults with I/DD because of their communication experiences.

| D ISCUSS I ON
Family caregivers are considered experts on their family members, having in-depth knowledge of patient needs; therefore, they have the ability to advise and support hospital personnel (Tuffrey-Wijne et al., 2013). Facilitating caregivers in their roles as surrogate communicators improved patient safety and satisfaction (Larkin, Henwood, & Milne, 2018;Miller et al., 2016). For patients with I/DD, who generally have communication challenges, communicating with their caregivers is crucial (Larkin et al., 2018). To summarize, the current study adds to the body of knowledge by providing family caregivers an opportunity to describe their experiences about communicating with hospital personnel. In addition, the study addressed an underrepresented area of nursing, namely, the care of hospitalized adults with intellectual and developmental disabilities.

| LI M ITATI O N S
Most of the participants received services from the same agency, resided in adjacent counties and may have used the same healthcare facilities. Experiences may not have been conveyed accurately because of self-report and loss of recall. Additionally, a dearth of prior research on this population made comparing data to previous studies difficult.

| CON CLUS ION
The current study was conducted to explore communication expe- Moreover, emphasis should be placed on communication, listening, confidence building skills and advocacy.

ACK N OWLED G EM ENTS
Dr. Lin Drury for advising.