Ambiguous participation in older hospitalized patients: gaining influence through active and passive approaches-a qualitative study

Aim

The aim of the study was to describe the difficulties experienced by older patients on acute geriatric wards when involving themselves with their own treatment and care.

Design

The study had a qualitative design with a phenomenological hermeneutic approach based on Lindseth and Norberg’s method for studying lived experience by analysing interview texts [23]. This method was inspired by Ricoeur’s theory of interpretation [24], which highlights the interrelationship between epistemology and ontology, meaning that the interaction between the storytellers’ narratives and the researcher’s interpretation of those narratives create knowledge. The ontological part is justified in the theory’s linking of experience, understanding and self-understanding on the part of both the narrator and the interpreter, which grounds Ricoeur’s theory of interpretation in human existence [24]. Experiences, as such, are implicit in a situation and in the narrative about the situation [25].

The most radical move in this theory is the concept of distanciation which involves objectification of the text [24] in the sense that a text lives its own life separate from the narrator [26]. According to Ricoeur, “the truth is not hidden behind the text; it is disclosed in front of the text, when the interpreter meets the text” ([23], p 151). The interpretation always exists within the dynamics of the conjunction of interpretation and interpreter. When a text becomes familiar to the interpreter (the concept of appropriation), the entrance to the hermeneutic circle contains the dynamics of distance from and nearness to the text [23, 24].

Context

The study was conducted in two Norwegian geriatric wards with six and twenty beds respectively. Criteria for admission for older patients were multimorbidity with complex health problems, acute illness and/or acute physical and/or cognitive functional failure. The rehabilitation and discharge planning process started immediately after hospitalization, in parallel with medical diagnostics and treatment, and interaction with the primary health service and relatives. The staff included geriatricians, geriatric nurses, nurses, nursing assistants and support workers, doctors, occupational therapists and physiotherapists with access to facilities on the wards.

Participants

Data collection

Some patients talked coherently while others needed to be guided through the process by the researcher’s body language, comments and follow-up questions [23]. Some patients suffered from concentration deficit and some from hearing and speech impairments; sound and conversation amplification aids were used. When talking to patients with dysarthria, the researcher would constantly repeat small fragments of the narrative to ensure that the account was confirmed as they went along. Many explained that they easily lost their concentration and/or that their memory was poor, and some asked to be reminded where they had got to if they came to a halt in their narrative. If patients were tired out by the interview process, they were offered a break. The interviews ranged from 12 to 67 min. Three interviews lasted approximately 20 min, a grouping of four interviews lasted about 30 min and six interviews roughly 40 min. The interviews were transcribed verbatim.

To ensure trustworthiness, we used investigator triangulation. The interview with the second participant was conducted by the first and second author, and the fifth interview by the first author and a study nurse. Over time and on several occasions, the authors all together, individually or in pairs, took part in the data analysis (as described below), and all authors critically reviewed and discussed the interpretation of the results.

Data analysis

Framed by the hermeneutic circle, the Ricoeurian concepts of distanciation, appropriation explanation and understanding suggest a suitable theory of interpretation for textual analysis of research interviews [23]. The interpretation process includes movements between distance and proximity, between the whole and the parts of the text, and between understanding and explanation. This research methodology aims to move from an understanding of what a text refers to towards an understanding of what a text is about [23, 26]. The textual analysis involved three stages [23]. The first stage was naïve reading: the transcription was read to form an immediate impression of what the patients’ experience was about. During the second stage, structural analysis, our immediate impressions were honed by splitting the text into shorter or longer units of meaning relating to the research question. The units were condensed into themes and further into subthemes. These are presented in the results section. The third stage, comprehensive understanding, is presented in the discussion section. This will provide critical commentary with reference to the research question, earlier research and relevant literature.

Ethical considerations

The study was approved by the Regional Committee for Medical and Health Research Ethics (REC South East Ref. 2012/1598). The older patients were in a vulnerable position in that they were ill and dependent on medical assistance. It was agreed with nurses that they would attend to the patients soon after their interviews were concluded and they would engage in conversation with any patient who so wished. The researcher was aware of and asked to be kept informed of any such needs. One patient took up the offer.

Naïve understanding

Some patients had heard about patient participation without in any way having related this to themselves, their health or the hospital. They expressed themselves in terms of feeling secure and being taken care of, and stated that the hospital staff was helpful, cheerful and friendly. The stories of participation mainly referred to personal care activities. Most of the patients felt that participation otherwise would require something that they themselves had only scant possession of: capability. They nevertheless demonstrated a vigour that would appear to suggest a level of capability, although this capacity ranged from acting directly to influence their care to acting indirectly through family members dependent on the patients’ own resources in a particular situation. To cope with the difficulties of participation, they strategically delegated the interactions with the staff to their relatives, entrusting responsibility to them. Thus, patients initiated and achieved participation, and relatives became mouthpieces and the patients’ representatives.

Abstaining from participation

The patients’ stories of participation referred to grooming and dressing, food and meals for which they took the initiative and were in charge, negotiating with the nurses and interacting with fellow patients. Patient L (male, 82), noted how having opportunities to choose was valuable, even when this choice was only one between the courses on a menu, while another patient referred to choosing one’s own clothing as one such simple factor.

Our decision to consider abstaining from participation as a reasoned choice was grounded in the patients’ way of reasoning in the stories they told. In explaining their reasons for not participating, they referred to their own shortcomings or the staff’s lack of time, while at the same time they defended the ward’s arrangements and communicated having adapted to them.

Complying with the hospital culture

Patient K (female, 71) took a more pragmatic view when she said that “the staff needs to take a firm handle of the situation and make a decision”. She did as she was told, also because the hospital staff was responsible for “making this place go round” (Patient K, female 71).

It is easier to tell if they ask

One patient claimed that the hospital staff asked the right questions because they knew how much time was available. Patients’ descriptions of waiting for the nurses to take the initiative to ask questions revealed their passive stance towards information and decision making. The patients refrained from “ringing the bell” even if they had questions they wanted to ask. Patient M (male, 83) made no calls himself, noting that the nurses would regularly attend to him waiting bedside, to tell and give information.

Lack of capability

Besides cognitive skills and the ability to pay attention, as seen above, being a competent participator (or not) was associated with knowledge, advanced age, level of endurance and positioning strategies.

The patients did not consider themselves to be knowledgeable and they did not expect to be able to influence their own situation. They deferred to the expert’s medical knowledge of diseases and treatment, which enabled them to make the right decisions. Patients felt that the nurses and the staff would try to do what they felt was for the best in any given situation, and that was enough. Patient D (female, 82), who found that the doctors in the ward round talked above her head, said: “which they are very welcome to do, for I understand perfectly well that they are more knowledgeable than I am”. She acknowledged that she did in fact have first-hand knowledge about herself, but this did not mean that she could contribute with her own personal knowledge to the treatment provided for her.

Patient E (male, 88) explained that old age as a factor in itself, and the associated lack of energy, played a part in whether or not one was capable of participation in treatment and care. He stated that his intelligence was intact but that he had no endurance: “We are a little disabled when it comes to keeping on top of what is happening”. He believed that most elderly people’s capabilities were blunted by old age and that being old and ill has a real bearing on the intellect, irrespective of whether or not this is recognised by the patient. Patient N (female, 94) who was making audible efforts throughout the interview said she had no energy for co-determination in question of treatment. Nevertheless, she took a keen part in discussions about adjustments to her walker, which held all the objects she wanted to keep close at hand.

Entrusting and delegating responsibility to relatives

With the exception of three of the youngest patients, all of the patients explained how they specifically involved their relatives and delegated their participatory role to them. Most of the patients considered themselves and their relatives as a “we”: a unit that was at their disposal. Some took a rather controlling attitude, some were quietly accepting of the situation, while others talked to their family about reasonable task sharing. Evidently the patients experienced taking part whether they themselves or their relative took action.

Lacking information

In the context of narratives about medical examinations, diagnostic imaging and relocations between wards, reference was made to how patients failed to obtain information and how they involved their relatives on these occasions. Remarkably, the patients themselves generally never actively pursued the information. Evidently they wanted to obtain information either from the hospital staff or family members, or to have staff members ask questions for them to answer. Patient N (female, 92) stated that she greatly appreciated it when the doctor would sit at her bedside to talk to her.

Relatives as mouthpieces

The patients’ accounts revealed that a total of 24 family members (one husband, two wives, one daughter retired from work, middle-aged daughters and sons still working, sons-in-law, daughters-in-law, grandchildren) had been involved with the admission procedure and during the patients’ stays in hospital. Patients who had relatives among the hospital staff considered it natural for them to assist with the communication vis-à-vis treatment providers. Some explained that a number of their closest relatives took turns being present at the hospital. The hope was that they would be able to influence the time of discharge, which for many was an important factor.

Patient D (female, 82) maintained that while in hospital the patients would be consulted. She said it was the patients’ duty to inform the ward round how they were, and that she herself had handed over this duty to her daughter. “And they keep asking. So I call my daughter over, as I want her to help me. I’m worried I won’t give the right answers, you know” (Patient D, female 82).

Ambiguous participation

The patients who took part in this study revealed an ambivalent attitude to involving themselves with their own treatment and care. Their participation appeared ambiguous. They alternated between participating, rejecting their participatory role and delegating responsibility for this role to their relatives. The older patients linked their participatory difficulties to their own diminishing capabilities, and they cited the hospital staff’s busy schedule as a reason why they refrained from involving themselves. While the patients talked at great length about their impairment, they nevertheless demonstrated a vigour that would appear to suggest a level of capability: They alternated between a passive stance, meaning they took no actions (in direction of the nurses and the staff) to participate in their own care, and an active stance (in direction of their relatives) depending on their own resources in a particular situation. They participated, in terms of initiating, making choices, interacting and negotiating, in activities of daily living, which, according to previous research, matters the most by improving and maintaining function, giving older patients a sense of purpose and perceived higher quality of life [30]. Some used their strategic skills to position themselves for influence, which is consistent with earlier research [20, 31]. The reasons cited by patients to explain why they preferred “passive” actions, meaning taking part through a family member, included feeling they had ‘negative equity’ due to their advanced years, low level of endurance, impaired cognitive skills and lack of knowledge. All of these factors have been found in other studies as well [8, 9, 16, 28, 32, 33]. The staff timetable set the premise for (the restricted) participation, and the patients talked of time as something that hospital staff controlled, and which they took [8, 33] and gave [34].

In keeping with findings in previous research, the older patients were reluctant to be a nuisance [8, 20], but eager to participate [13]. As such this study showed both a personal involvement and patient-determined delegation of participation. Their desire to participate was evidenced by the fact that they delegated the responsibility to a proxy, and by the nature of the tasks they delegated. The patients would delegate to their families those tasks that they felt incapable of handling by themselves but that were necessary to exert influence and have a say in decisions [11]. The delegation might involve giving and receiving information at the time of hospitalization, communicating with the nurses and the staff during the hospital stay, attending when doctors were doing their rounds, and negotiating the date of discharge from hospital. In most delegated situations the patients’ physical presence did not make their participation less ambiguous.

When patient participation is accomplished within the family, and family members are clear representatives for patients when needed, this may suggest that a geriatric ward, in line with the patient perspective of rehabilitation philosophy, has a family-inclusive policy. In order to facilitate patient participation, the wards need to signal that they welcome diverse approaches to patient participation, and that family represents a basis for patient participation from the older person. Relationship-related approaches to care and participation in decision making is well described in literature [19]. Relatives, however, who according to the patients were virtual extensions of themselves and appeared to be at the patients’ disposal, probably missed an opportunity to participate on their own behalf in their own role as relative. According to national healthcare planning and goals for health policy, relatives must, beside to be the patient’s representative, be heard when it comes to their own needs [4].

The ambiguity expressed by the patients may be seen as indirect criticism of ward culture. Patients listed several shortcomings with respect to their circumstances and their (lack of) opportunities to influence and participate in their own care. On the other hand, the patients generally adjusted to the ward routines and many defended the ward arrangement. This is in line with previous research [33, 35]. In gerontology, the study of the ageing process, this may be seen as an age-related adaptive coping strategy: adjusting to one’s surroundings instead of trying to change them [36]. In geriatrics, the study of medical conditions and disease in the older [5–7], the patients’ ambiguous and fluctuating participation may illustrate the complexities that arise when old age coincides with complex health problems and acute illness. Whether the perceptive is different aspects of aging, or disease in older adults, the results showed that patients included family in their participatory practice.

Patient-delegated participation through a family member

A review of research on engaging older adults in their transitional care says that a future challenge will be how to respond when patients choose not to become engaged [30]. Among older adults and other groups of vulnerable older adults, the engagement of family caregivers will be critically important [30]. When patients in this study actively addressed their own difficulties with participation in treatment and care, they would turn to their families. Patients delegated family members to participate on their behalf, and it appeared that the relatives responded willingly, seeking to collaborate with the hospital staff and thus compensating for the patients’ difficulties in seeking, receiving and giving information. Earlier research on how persons with dementia participate in decision making, based on Thompson’s taxonomy [11], has pointed to delegating decision making as a new category of patient involvement [37]. Ekelund et al. [38] too found that older persons may include the family in their way of being self-determined in decision making.

Patient-delegated participation occurred in this study as well. This result draws attention to the fact that older patients handled difficulties related to their own involvement and to the ways in which they did so. At admission to hospital and during their stay in hospital, the patients delegated the tasks of seeking, receiving and giving information, and to some extent, dialogue with professionals about their care. According to Thompson’s taxonomy, seeking and receiving information is considered as the elementary level for being able to take part in decision making, and second level (patient information-giving, possibly dialogue) enables the conversations between patient and clinicians [11, 37]. The patients sought assistance of their relatives in connection with difficulties such as fear of nagging the staff, being incapable of asking questions, fear of giving incorrect answers, speech impairment, and the need to be given sufficient time, peace and quiet to understand the information provided. When it came to the taxonomy’s third level, shared decision making [11], the results gave none examples with regard to the experienced difficulties of participation. The patient in this study who on two previous occasions had been sent home too early, had a team of family members who had tried to push the discharge date as far into the future as possible. The patient’s reflection was “But I suppose it’s the hospitals that decide, really”.

With regard to the experienced difficulties of participation, patient participation took place in a sphere which ran parallel to the “patient and the hospital staff” constellation. Patients relied on their family members, participating through them, which, again, points to the fact that participation of family represent a basis for the patient’s participation in treatment and care processes [19, 39]. This acceptance of responsibility by the family, as recounted by the patients in this study, is not well investigated in research when it comes to family members’ own perceptions of participation [12]. Nurses’ experiences of collaboration with family, however, have been explored, and one study called for a mandatory involvement of relatives at the time of admission and upon discharge with regard to information exchange [12, 39].

The experienced difficulties of participation may be discussed in light of the nurses and the staff’s approaches and communication. Collins et al. [40] examined doctors’ talk with patients and identified two decision making trajectories namely “unilateral” and “bilateral” approaches, and they suggested that the latter may improve patient participation in the context of health care. In the more “bilateral” approach, the decision making processes were enacted as an integral part of the communication in the consultations and took into account the patient’s contributions. The more “unilateral” approach structured the decision making processes somewhat independently of conversations with the patient” [40]. Our study may exemplify the more “unilateral” approach as far as the experienced difficulties were addressed the family and not the hospital staff. If the nurses and the staff facilitate participation in treatment and care as in the “bilateral” approach, the patients’ contributions may be addressed them and not the relatives.

Guided by the study of Collins et.al [40], Riva et al. [41] have described primary nursing approaches to patient participation in conversations on discharge planning. The study found that different communicative styles (named “reciprocal” and “individual”) exist, and that health professionals can adapt their communicative practices [41]. The reciprocal style is a more collaborative approach and relies on the nurses to initiate and moderate participation [41]. Besides accentuating that the nurses and the staff can adapt, initiate and moderate participation, our study highlight the importance of structuring patient participation independently of the patient’s capabilities and performance of participation. Older people enact the participant’s role in both active and passive ways. The fact that the hospital staff in this study mainly consisted of nurses points to the significant role of nurses in soliciting participation from older patients.

Limitations

Interviews with people who suffer from attention deficit, psycho-motor tempo retardation, hearing impairment, language handicap or fatigue fail to fulfil all the criteria of an ideal qualitative interview [42] with short questions and spontaneous relevant answers that are rich in content [43]. The sheer quantity of interviews may have compensated somewhat for this weakness [42]. We have sought to communicate the results as transparently as possible.