Older Adults Living in Sheltered Housing’s Experiences of Involvement in Pro Re Nata Decisions. A Narrative Positioning Analysis

Recruitment and Participants

The study was conducted in four different municipalities in mid-Norway. We contacted head of unit in 10 sheltered housings by mail and telephone and asked for help to recruit residents. The inclusion criteria were residents receiving help with medication administration, who used at least one PRNM, and was able to participate in an interview (consent competent). We used analgesics and hypnotics as examples to facilitate the residents’ understanding of the concept PRNMs. The total number of residents in each sheltered housing varied between 10 and 30. Five heads of unit recruited 12 residents.

The heads of unit distributed information letters and consent forms to residents fulfilling the inclusion criteria. The information letter specified that information from the interviews would not be available for the staff in the sheltered housings. Furthermore, head of unit facilitated for researcher to get in contact with residents. We have no knowledge about the head of units’ judgements and how they approached the residents. A total of 12 residents agreed to attend an interview and signed the consent form before participation. The sample size was guided by the “information power” concept (Malterud, et al., 2016).

The participants were eight women and four men, 64–96 years old. The residents lived in four different municipalities and five different sheltered housings. The housing period in the actual sheltered housing varied between two months and 10 years. The participants used between one and 10 regular medications and between one and four PRNMs. Ten of the residents lived in housings with round-o-clock healthcare service.

Data Collection

All individual interviews were conducted by the first author from December 2019 to June 2020. A semi-structured interview-guide (Kvale & Brinkmann, 2009) guided the interviews. The opening question was, “If you should tell me something about your current medication use, what would you tell me?” Some participants spoke without solicitation, whereas others required probes to continue their stories. The follow-up questions varied, depending on the resident’s response to the opening question. In collaboration with the participants, the researcher dynamically navigated the interview-guide. This flexibility is necessary because it is important to be open to the unexpected (Patton, 2015). A pilot interview with a home-dwelling woman (71 years old) was conducted to explore the understandability of the questions. This interview was not included in the data material.

The interviews lasted from 21 to 58 minutes. The interviews took place in the sheltered housing. In 10 of the interviews, only researcher and participant attended. In two interviews, a professional interpreter assisted using sign language because the participants had hearing impairments. The interviews were audio-recorded and transcribed verbatim.

Ethics

The Regional Committees for Medical and Health Research Ethics (REC) in Norway [reference number 32312/REK Nord] concluded the study was outside REC’s remit and did not require approval. The study utilized sensitive personal information, and the Norwegian Centre for Research Data (NSD) approved the project [reference 480649]. The ethical principles of the Declaration of Helsinki were followed (World Medical Association, 2013). Participation was voluntary, and a written informed consent was required from each informant, and the participants could withdraw at any time. The participants were consent competent and information about the study was repeated orally before starting the interview. Confidentiality was maintained throughout the project. The audio recordings were deleted consecutively after transcription.

Using the head of unit for the recruitment of participants, may have led to an unspoken pressure to attend the interviews. At the outset of each interview, the interviewer stated the participant’s right to withdraw from the study. We have no knowledge or influence of how the participants were selected beyond the inclusion criteria. The only feedback we received from the head of unit was that there were few candidates meeting the inclusion criteria.

Analysis

All interviews were transcribed verbatim. The interviews were analyzed using a narrative positioning approach (Bamberg, 1997; Riessman, 2008). This analysis focuses on how and why people tell their stories, to whom they are told, and what the story is about. Narration is seen as a meaning-making process where storytelling is a social construction between the researcher and participants (Riessman, 2008). Through our analysis, we explored how the participants positioned themselves in both the interview settings and in the stories they told and how the narrations were framed and shaped by various master narratives (Bamberg, 1997; Blix, 2017).

The analysis was stepwise, including, as a first step, a naive reading of all the 12 transcribed interviews to obtain an overview of the data. Next, we decided which interviews to include in the analysis. Choosing stories for focused attention is a crucial step in narrative analysis (Frank, 2012). For this study, three interviews were included. The analysis of the three interviews was informed by the insights gained from all 12 interviews. The remaining nine interviews provided contextual information about sheltered housings and PRNM decision-making in this context. Moreover, we gained insight in the diversity of the participants’ experiences through the close reading of all interviews, which in turn guided our choice of interviews for further analysis. The three interviews were not chosen because we considered them as representative of the total interview material, but rather because of their distinctness with regard to the phenomenon to be explored. The three included interviews represented variation with respect to both the participants’ gender and age. Moreover, the three interviewees represented diversity with respect to their involvement in PRNM decision-making.

The three interviews were managed separately. The interview segments concerning PRNM and decision-making were identified through close and repeated readings of each of the transcripts. Next, we conducted a narrative positioning analysis (Bamberg, 1997) of the identified interview segments. Bamberg has suggested three questions to guide the three-level positioning analysis (Bamberg, 1997; Blix, 2017). At level 1, the analysis focuses on what the story is about and how the story characters are constructed (i.e., as protagonists and antagonist); “How are the characters positioned in relation to one another within the reported events?” At positioning level 2, the question is “How does the speaker position him- or herself to the audience?” This level concerns the story’s how—why this particular story was told in this particular way under these particular circumstances. On level 3, the analysis focuses on how the narrator positions him or herself related to broader social or cultural discourses or master narratives in society. The question guiding the analysis is “How do narrators position themselves to themselves?” Eventually, we combined the analysis of the three individual interviews to explore different approaches to decision-making regarding PRNM. The analysis was performed by Nilsen, Blix and Olsen.

Anne: It’s Nice to Receive Help, but I Need my Sleeping Pills

Anne is a 94-year-old woman. She was raised on a farm where she had to participate in farm work already in her childhood, and she also lived and worked on a farm as a grown-up. Anne thinks that it is nice and safe to live in sheltered housing, and she cannot remember for how long she has lived here. Initially, Anne claims not to use any medicines, and medication is of no concern to her. However, throughout the interview, she talks about her daily heart medicines and the PRNM hypnotics and analgesics. She uses PRNM more or less on a regular basis:

Of course, I use more (medications), but I am not interested, you see, so you are talking to the wrong person. It is a sleep medication, and it contains a pill helping me to fall asleep—a small one.

Despite Anne’s statement that she is not interested in her medicines, her experiences show that, in particular, the hypnotics are important to her. One of her stories involves a nursing home physician who denied her using hypnotics:

I was at the nursing home, and she (the physician) denied me (the hypnotics). I said I would try to endure—I will try to. Fourteen days passed. Then, I said stop, I am going crazy. “If I don’t get the small pill, then it’s impossible for me to stay here.” Then I got one. (…) Now, I get one every evening. Imagination is important (laughs), I admit.

Although Anne questions whether a nursing home physician can make decisions about deprescription on behalf of the residents, she also talks about growing up in a decade when you were not supposed to demand anything, particularly from authorities such as physicians:

During the war, when my appendix was removed, I didn’t dare ask for necessary information—no way! I just sat still. He (the physician) looked so angry. Today, I would have said something to him!

Further into the interview, Anne states that she has used hypnotics for a long time. She relates about how a good night’s sleep has been important to function during the daytime while she was working:

I have used them (sleep medication) ever since I worked in a barn and stable; otherwise, I could not have worked. I experienced that it wasn’t possible. Nowadays, nothing affects work here, but my body feels different.

For Anne, it is a relief not to have responsibility for her medication management because she does not trust herself and is afraid of making mistakes.

A (Anne): I have to say I don’t know (which medications she uses). I get some tablets, but it doesn’t interest me what it is because I will not remember anyway.

At the same time, Anne experiences that the nurses trust her with the responsibility to self-administer the medications she takes before going to sleep:

I: When you talk about Paracet®(acetaminophen/paracetamol) and a sleeping pill being provided to you in a cup, do they (the nurses) bring it to you earlier in the evening, and then you take them yourself?

Henry: I have to supervise the Medication Management

Henry is a 64-year-old male resident who has lived in the sheltered housing for nearly 3 months. Sections of his life have been challenging, partly due to addiction to alcohol and drugs. As a grown-up, he worked at sea and as a chef. Henry has a good overview of his medications and what the different tablets are for, although he claims this is of no importance to him. He takes 10 tablets each morning and eight tablets each evening, and he uses analgesics and tranquilizers as PRNM. The hypnotics he used previously have now been replaced by an over-the-counter preparation.

Henry talks about adjustments in his PRNM:

I argued for my opinion. I must get what I have now; otherwise, I will be in too much pain. When I collapsed last spring, I didn’t have Sobril® (oxazepam) or benzo-(benzodiazepine)—I didn’t. I had like Atarax® (hydroxyzine) and other milder medications. Then, I always had malt beer available—it was my safety net.

Henry talks about his past as an alcoholic and being Stesolid (diazepam)®-addicted, and how he, through close collaboration with a specialized nurse, managed to overcome the addiction:

H (Henry): Some years ago, I was totally addicted to Stesolid®. Stesolid® and moonshine (homemade alcohol) is not a good combination. (…) with good help from a psychiatric nurse, with whom I am still in contact, I got out of this mess and was free from addiction. I had 25 Stesolid® a week (…)

Henry will avoid a relapse, and states that the medication made him someone he does not want to be:

Something important for you to include in your report or article involves the emotional aspects of life—that engages me! I have to say that yes, I am not totally without emotions now, but I am not laughing as much as I used to.

Medication management is not a burden to Henry, but he thinks it is perfectly fine to have these medications administered by someone else as long as he receives the correct medicines. He verifies the medications given to him:

H: I have received the incorrect medicine several times—you know. Then, I just rolled over (in his wheelchair to the nurses’ office) and told them: “here, there is something wrong”, and then I usually say something like, “If you, as a nurse, do not take care of it, then I will.” I take what I am supposed to and nothing else, and if they bring me something else, which they did for a while, so fuck. I just said, “this is wrong—take it back!”

Henry talks about the future, and his ambition is to eventually drive a car again. The desire to gradually become more self-reliant helps him maintain his mood, and he hopes to be “himself” again and discontinue some of the PRNMs.

H: I have concluded that I need some extra Sobril® just now, but in the future, I think it is possible to adjust this medication. The Oxynorm® (oxycodone) as well.

Maria: Medication Management is a Matter of Privacy

Maria is a woman, nearly 70 years of age, who has lived in the sheltered housing for 13 months. Previously, she lived in sheltered housing without round-the-clock nurses present. After a stroke several years ago, she is now wheelchair dependent, but she has no cognitive or verbal impairments. Throughout the interview, she is reluctant to discuss her use of medications and her life story. She thinks she uses nine medications, all administrated in the evening. Additionally, she uses a tranquilizer as PRNM:

I: Do you use other medications in addition to the regular ones?

Even though Maria hesitates talking about using Sobril®, she explains the reason for using it:

I began with Sobril® because there was a fire in my previous housing. That experience stuck well in my body for a long time. I never take Sobril® during the daytime—just one in the evening and one at night. That’s all.

Maria prefers that nobody interferes with her medications—she wants self-control of her medication management:

M: I don’t want to leave medication administration to someone else—I want to manage it myself. I have done so since the stroke.

Maria contacts the nurses about her medication only when prescriptions must be renewed.

She has decided to take all her medications in the evening because she knows some of them make her lethargic, and she wants to avoid falling. Maria wishes to be informed about her medications:

M: I know it is a fall risk increasing medications. That’s why I take them as the last thing before bedtime.

Positioning of Characters in the Narratives

The three participants position themselves and other characters differently in their stories. However, they all talk about the decision-making process as involving themselves together with nurses, to a greater or lesser degree.

At positioning level 1, Anne positions herself as a protagonist in relation to the nurse in the story about the withdrawal of hypnotics in the nursing home (“Fourteen days passed. Then, I said stop”). She wants to do as the physician and the nurse decide and collaborate with them, but there is a limit. Even though she trusts the healthcare providers, they are not always in their right to decide everything. However, this aspect has changed from earlier times (“I didn’t dare ask for necessary information”). The hypnotic tablets are crucial in Anne’s story—they are important for her to function in everyday life, and she has used them for a long time. She positions herself as a passive decision-maker, as someone who has happily left the responsibility for her medications to the nurses, as long as they listen to what she says and respect her experiences.

Henry positions himself as an active decision-maker and the nurses as participants. He verifies the medications given to him, checks that it is the correct medicine (“If you, as a nurse, do not take care of it, then I will”). Henry says the nurses must accept his arguments, but he has also experienced how important the help from a nurse was for his recovery from the addiction to medications. Henry wants to have control over the decisions; however, he realizes that he needs some assistance. The PRNMs are important for him to cope with the situation, explaining why he wants to be an active participant in decision-making.

Maria positions herself as a leader and owner of the decisions regarding her medication. For Maria, medication is a matter of privacy and something she will control herself; nurses should not be involved unless she asks for it. She states a clear reason for initiating oxazepam use and is explicit about how she uses the medicine (“I never take Sobril® during the daytime”). She wants to be as independent as possible and decides when to contact the nurses regarding medications.

Positioning in the Interactive Setting

Positioning at level 2 concerns why a particular story is told to a specific person in a given context. The participants were well aware that the interviewer was a female, middle-aged pharmacist and a researcher conducting a study on PRNM decision-making.

At level 2, we identify a duality in Anne’s narration. On the one hand, Anne positions herself as someone not particularly interested in medicines and “the wrong person” to be interviewed. On the other hand, as shown on level 1, Anne’s stories demonstrate that the hypnotics have been significant for her for many years. She positions herself as a (self)critical user by referring to the power of “imagination.” Anne emphasizes that the nurses trust her with the responsibility of administering her own medicine, but simultaneously, she makes it clear to the interviewer that she does not mean to “brag.”

In contrast to Anne, Henry positions himself as someone who has important contributions to research. He is active in the conversation and finds it important that knowledge about the psychological consequences of medications is communicated. Moreover, Henry communicates that based on his life experiences, he has knowledge and insights the interviewer does not have. There is a duality in the way Henry, on the one hand, positions himself as someone who “just takes what I am given,” and on the other hand, as a person who is capable of confronting nurses when they give him the wrong medicines.

In contrast to both Anne and Henry, Maria is more reluctant to share her stories with the interviewer. She states that she considers medications a private matter. Nonetheless, throughout the interview, Maria positions herself as knowledgeable and perfectly capable of finding the information she needs.

Positioning with Reference to Cultural and Social Master Narratives

At level 3, we analyze Anne’s, Henry’s, and Maria’s stories with reference to broader master narratives. In Anne’s story, there is an undertone of a wish not to be a burden. This is evident in the way she gladly gives the nurses the responsibility for her medication and refrains from interfering with their decisions. In Maria’s and Henry’s stories, we identify a wish to be independent. For Maria, this is expressed in the way she takes full responsibility for her own medicines, whereas for Henry, this is expressed in his hope to get off medication and “back on his feet.”

Generally in society, the ideal is restricted use of medicine. These discourses are also echoed in Anne’s, Henry’s, and Maria’s stories; for example, in Henry’s resistance against being a “morphine-addict” and in Anne’s and Maria’s choice of words. Anne defends her use of medicine and describes the tablets as “small,” and Maria is careful when mentioning her tranquilizers. The PRNMs referred to are medications often associated with stigma and abuse potential.

Strengths and Limitations

This study provides novel insights into the PRNM management process in sheltered housing. Few studies have explored residents’ experiences of being involved in shared decision-making regarding medications, and thus, our findings may be important to safeguard patient safety and improve the quality of healthcare services (Doyle et al., 2013).

Using the narrative position analysis, we have showed contrasting experiences. By providing comprehensive descriptions of the participants, study method, and quotes from the interviews, we enable each individual reader to judge the transferability of the study findings to other contexts.

The focus of this study was medication management of PRNM. However, we believe that the findings can be related to decision-making regarding medication management in general. Although the study context is limited to sheltered housing, the findings are relevant for nurses in different types of healthcare services as well as in an educational context.

The fact that none of the authors had clinical experience from sheltered housings could be both a strength and a limitation. Lack of knowledge and personal experience about the context may have limited our understanding of the practice, negatively affecting comprehension and awareness of participants’ expectations of decision-making processes regarding PRNM. In contrast, not having clinical experience from sheltered housings might be a strength since the researchers were not biased by contextual factors during the analysis. The participants talked willingly and openly during the interviews, seemingly comfortable with talking with an interviewer with the time and interest to listen. Thereby, the participant-researcher relationship might have benefitted from the researchers being unaffiliated with the sheltered housings.

For trustworthiness, researcher triangulation was performed, researchers with different experiences and backgrounds were involved in the analyses and writing of the article.