Nursing support for older people's autonomy in residential care: An integrative review

3.1 Description of the selected studies

The electronic searches resulted in 2,927 papers, and we reviewed 177 based on their title and abstract and 24 based on their full text. The manual searches resulted in six more potential papers, but none of them met our inclusion criteria. This means that 24 empirical research papers were included in the final analysis (Figure 1).

The reviewed papers were published between 1985 and 2018 (Tables 1-3). Seven were from the United States, four were from the United Kingdom, three from Israel, two from the Netherlands, Norway and Sweden and one each from Canada, China, Israel and Hong Kong. Of the selected papers, 14 used qualitative research methods, eight used quantitative methods and two were carried out using mixed methods. The qualitative data collection methods included semi-structured and in-depth, individual, dual and focus group interviews and observations. The quantitative data were collected using self-response questionnaires and surveys. The participants in the studies were nursing professionals, including registered nurses, nursing assistants and nurse managers. The number of participants varied from seven to 285 in the qualitative papers, from 84 to 887 in the quantitative papers and from 19 to 220 in the mixed-method papers. All the data relevant to our study were collected from older people's care settings, such as assisted living facilities, care homes, hospitals, long-term care facilities, nursing homes and residential care. Only the three papers by Bentwich et al. (2017), Bentwich et al. (2018a), Bentwich et al. (2018b) included additional hospital settings.

TABLE 1. Characteristics of the 14 qualitative studies included in the review Author(s), year, country Aim Method and data collection Main results Quality* (Max 6) Barmon et al., 2017, USA To examine how staff and managers discuss residents' right for sexual freedom in assisted living. Individual interviews with managers (n = 6), staff members (n = 22), residents (n = 24) and family members (n = 9). Focus groups with staff members (n = 27). Professionals used surveillance, which undermined older peoples' autonomy and rights for sexual freedom. y y y n y y

Total 5

Bentwich et al., 2018, Israel To explore differences among caretakers in their attitudes towards dementia patients' autonomy and dignity. Semi-structured interviews with formal care takers (n = 20) from different cultures: Sabras, Arabs and Russians. Arab professionals seemed to offer richer perceptions of older peoples' autonomy than professionals from other ethnic groups. y y y y y n

Total 5

Boisaubin et al., 2007, USA To explore perceptions of autonomy, dignity, quality of care and decision-making in long-term care. Semi-structured interviews with residents (n = 4), family members (n = 10) and healthcare professionals (n = 9). Professionals reported that older people should make their own treatment decisions, as long as they were capable. Shared decision-making with older people and relatives was also emphasised. y y y n y n

Total 4

Chan & Pang, 2007, Hong Kong To examine perceptions about individual dignity and autonomy, quality of care and financing of long- term care. In-depth semi-structured interviews with older people (n = 6), family members (n = 10), administrators (n = 6) and healthcare professionals (n = 7). Professionals agreed that older people should make their own decisions, as long as they were capable to do so. If not, relatives should be involved in decision-making. y y y y y n

Total 5

Dreyer et al., 2010, Norway To examine how healthcare professionals protected patients' autonomy in end-of-life decisions. In-depth interviews with nurses (n = 10) and physicians (n = 9) Professionals' assessment of older peoples´ competence to consent was almost non-existent. Nurses trusted older people's decisions more than physicians did. y y y y y n

Total 5

Evans et al., 2018, UK To determine how managers' conflict negotiation enabled autonomy and maintained safety. Semi-structured interviews with managers (n = 18) Respondents described balancing older peoples' autonomy with the need to protect them and their dignity. y y y y y n

Total 5

Hawkins et al., 2011, UK To examine how healthcare workers supported residents' autonomy by enabling independence. Observations and semi-structured interviews with staff (n = 14) and residents (n = 8). Professionals reported conflicts between respecting residents' autonomy and their own duty of care. y y y y y y

Total 6

Hedman et al., 2019, Sweden To describe registered nurses' experiences of promoting autonomy and participation. Semi-structured individual interviews with nurses (n = 13) When nurses promoted older peoples' autonomy, they considered factors such as their frailty, the impact of their illness and trusting relationships with older people, relatives and other professionals. y y y y y n

Total 5

Oakes & Sheehan, 2012, USA To examine how healthcare professionals gave meaning to autonomy in assisted living. In-depth interviews with managers (n = 9) and aides (n = 18). Professionals considered older peoples' autonomy as a synonym for independence and tried to achieve it in the best interests of older people. y y y y y n

Total 5

Solum et al., 2008, Norway To investigate caregivers' perceptions of moral alternatives in daily care. Observations and interviews with caregivers (n = 7) Professionals described older peoples' right to be seen and heard and their right to autonomy when they were competent to make own decisions. y y y y y n

Total 5

Tufford et al., 2018, Canada To examine locked door and physical restriction practices and justifications for those in long-term care facilities. Observations and interviews with managers, healthcare workers, residents and family members (n = 285) Locked doors and other physical restrictions decreased older peoples' opportunities to be autonomous in residential care. y y y n y n

Total 4

Whitler, 1996, USA To explore how nurses assisted elderly nursing home residents to preserve their autonomy. Interviews with nurses (n = 25) Professionals supported older peoples' autonomy by personalising, informing, persuading, shaping circumstances, considering, providing opportunities and assessing why people lacked the capacity to make decisions. y y y n y n

Total 4

Wikström & Emilsson, 2014, Sweden To explore opportunities for autonomy in institution-based housing. Focus group interviews (n = 50) and observations, including residents (n = 17), family members (n = 10), staff (n = 12) and managers (n = 11) Autonomy was not a reality for older people, due to professionals' power to make decisions. Professionals also perceived that older people were unable to achieve autonomy. y y y y y n

Total 5

Zhai & Qiu, 2007, China To study perceptions about long-term care for older people. Interviews with older people (n = 6), family members (n = 10), assistant nurses (n = 4), physicians (n = 3) and administrators (n = 3) Professionals said that older people should make their own decisions, as long as they were competent to do so and that their wishes should be respected. Relatives were also seen as decisions makers for older people. n y y n y n

Total 3

(i) Are there clear qualitative and quantitative research questions, or a clear mixed methods question? (ii) Do the collected data allow address the research question (objective)? (iii) Are the sources of qualitative data (archives, documents, informants, observations) relevant to address the research question (objective)? (iv) Is the process for analysing qualitative data relevant to address the research question (objective)? (v) Is appropriate consideration given to how findings relate to the context, for example the setting, in which the data were collected? (vi) Is appropriate consideration given to how findings relate to researchers’ influence, for example through their interactions with participants? *MMAT criteria for qualitative studies according to Pluye and Hong (2014) TABLE 2. Characteristics of the eight quantitative studies included in the review Author(s), year, country Aim Method and data collection Main results Quality*(Max 6) Bentwich et al., 2017, Israel To identify gaps in attitudes to human dignity and autonomy of professional caretakers from differing cultural backgrounds. Questionnaires for professional caretakers (n = 210) from Israel ethnocultural groups: Russian, Arab and Sabra. Professionals' attitudes to older peoples' autonomy and dignity varied between ethnocultural backgrounds. y y y y y y

Total 6

Mullins & Hartley, 2002, USA To examine how care was provided in nursing homes. Survey for healthcare professionals (n = 202). Professionals' education and race affected their perceptions of older people's autonomy. y y y n y y

Total 5

Murphy, 2007, Ireland To determine factors associated with quality care in a long-term care setting. Questionnaire completed by nurses (n = 498) Nurses stated that promoting older peoples' autonomy and independence contributed to the quality of care. y y y y y y

Total 6

Ryden, 1985, USA To delineate characteristics of residents' interpersonal, organisational and physical aspects of autonomy. Semi-structured questionnaire for residents (n = 113), professional caregivers (n = 137) and administrative personnel (n = 10). Professionals saw themselves as the predominant decision makers. Older people only made decisions about one-to-one and solitary activities. y y y y y ns

Total 5

Scott, Välimäki, Leino-kilpi, Dassen, Gasull, Lemonidou, Arndt et al., 2003, UK To examine elderly people's views about autonomy, privacy and informed consent. Questionnaire completed by staff (n = 160) and structured interviews with elderly residents (n = 101) Professionals reported that they gave older people opportunities for decision-making. More than half felt that older people were fully informed. y y y y y n

Total 5

Scott, Välimäki, Leino-kilpi, Dassen, Gasull, Lemonidou, Arndt, Schopp et al., 2003, UK To examine autonomy in healthcare institutions in European countries. Patients (n = 573), healthcare professionals (n = 887) in Finland, Spain, Greece, Germany and the UK. UK professionals were mostly likely to offer older people the chance to make decisions. Opportunities were lowest in Finland. y y ns ns ns ns

Total 2

van Thiel & van Delden, 1997, Netherlands To examine nurses' opinions of respect for autonomy and high-quality nursing home care. Questionnaire for nurses (n = 84) Respect for older peoples' autonomy was considered problematic, due to competence of the residents and conflicts with care practices. n y n y y ns

Total 3

van Thiel & van Delden, 2001, Netherlands To examine respect for older people's autonomy and moral intuition. Vignette-based surveys for nurses (n = 94) and physicians (n = 31) Professionals' perceptions of older peoples' autonomy varied in relation to different circumstances. y y y y y ns

Total 5

( i) Are there clear qualitative and quantitative research questions, or a clear mixed methods question? (ii) Do the collected data allow address the research question (objective)? (iii) Is the sampling strategy relevant to address the quantitative research question? (iv) Is the sample representative of the population understudy? (v) Are measurements appropriate? (vi) Is there an acceptable response rate (60% or above)? *MMAT criteria for quantitative descriptive studies according to Pluye and Hong (2014) TABLE 3. Characteristics of the two mixed-method studies included in the review Author(s), year, country Aim Method and data collection Main results Quality* (max 5) Bentwich et al., 2018, Israel To explore professional caretakers' perceptions of autonomy and human dignity of dementia patients. Semi-structured interviews with caretakers (n = 20) and questionnaires completed by professional caretakers (n = 200) Professionals' perceptions of older people's autonomy varied in relation to the care facility and country and ethnoculture was identified as the most influencing factor. n y y y y

Total 4

Taverna et al., 2014, USA To examine the effect of autonomy on residents' oral hygiene. Individual structured interviews with residents (n = 12) and care staff (n = 7) care staff. By respecting older people's independence, professionals enabled excessive autonomy to occur.

n

y

y

y

y

Total 4

(i) Are there clear qualitative and quantitative research questions, or a clear mixed methods question? (ii) Do the collected data allow address the research question (objective)? (iii) Is the mixed methods research design relevant to address the qualitative and quantitative research questions (or objectives), or the qualitative and quantitative aspects of the mixed methods question (or objective)? (iv) Is the integration of qualitative and quantitative data (or results*) relevant to address the research question (objective)? (v) Is appropriate consideration given to the limitations associated with this integration, for example the divergence of qualitative and quantitative data (or results*) in a triangulation design? *MMAT criteria for mixed-method studies according to Pluye and Hong (2014)

The methodological quality of the selected papers was assessed using the MMAT, and all the scores indicated adequate confidence in the results. The qualitative studies ranged from three to six (Table 1), the quantitative papers from two to six (Table 2) and both the mixed-method papers scored four (Table 3). The main weakness in all the papers we included were the poorly reported ethics in the methods sections.

Based on our results, nurses perceived that autonomy is the basic principle and part of quality care, influenced by nurses' personal characteristics. Supporting autonomy consisted on protecting older people's rights, acting as advocates and respecting older people's wishes. In addition, nurses perceived that they could support older people's autonomy by providing opportunities, fostering independence and providing information for older people and their families. Individualising care practices and protecting safety were also recognised as supporting actions for autonomy.

3.2 Nurses' perceptions of older people's autonomy

Based on our findings, nurses recognised that dignity created a basis for older people's autonomy (Bentwich et al., 2018a; Boisaubin et al., 2007) and they referred to the right of individuals to make their own decisions (Chan & Pang, 2007; Zhai & Qiu, 2007). In addition, autonomy was connected to residents being able to enjoy their freedom (Chan & Pang, 2007) and independence (Oakes & Sheehan, 2012). Enabling autonomy meant that older people were treated with respect in residential care (Bentwich et al., 2018a; Bentwich et al., 2018b; Boisaubin et al., 2007; Chan & Pang, 2007; Zhai & Qiu, 2007). The nurses emphasised varying ethical aspects of older people's autonomy, which were implemented in their care practices (Van Thiel & Van Delden, 2001). However, they also found it difficult to identify the values that those activities were based on. Instead of older people's autonomy, some nurses described principles of beneficence and non-maleficence. (Dreyer et al., 2010).

Enabling older people's autonomy was seen as part of the nurses' work and how they provided quality care (Murphy, 2007). In addition, nurses said that sometimes they supported older people's autonomy to ease their own workload. However, some nurses said that older people's autonomy could also increase their workload. For example, if a person with incontinence did not have to wear continence aids, the professionals had to deal with the consequences, including soiled clothes and furniture and the unpleasant smell (Oakes & Sheehan, 2012).

Studies found that nurses' personal characteristics influenced their perceptions of autonomy in residential care. Differences were explained by religion (Bentwich et al., 2017, 2018a), country of origin (Bentwich et al., 2017, 2018a, 2018b; Mullins & Hartley, 2002; Scott, Välimäki, Leino-kilpi, Dassen, Gasull, Lemonidou, Arndt, Schopp et al., 2003) and education (Bentwich et al., 2017, 2018a; Mullins & Hartley, 2002). In addition, fear of physical violence from the residents, the norms of society (Bentwich et al., 2017, 2018a) and nurses' professional backgrounds influenced their perceptions of autonomy. For example, hospital nurses valued autonomy more highly than those working in nursing homes (Bentwich et al., 2017, 2018a, 2018b). Nurses who worked in nursing homes that provided intermediate care exercised a higher level of control over older people than professionals working in specialised nursing care (Ryden, 1985). However, one study reported that nurses who worked in facilities that emphasised older people's autonomy reported less job satisfaction and more negative attitudes towards older people than those who worked in facilities that did not. This was seen to highlight the need for in service training regarding the meaning of autonomy as part of higher quality of life, prior nurses working practices. (Mullins & Hartley, 2002.)

3.3 Nursing support for older people's autonomy

Nursing activities that supported older people's autonomy in residential care were described as protecting older people's rights to make their own decisions, acting as advocates, respecting their wishes, giving them opportunities, fostering independence and providing information. In addition, key activities that supported autonomy were identified, such as individualising care practices and protecting older people's safety.

3.3.1 Protecting people's rights to make their own decisions

Nurses recognised that older people had the right to make their own decisions (Barmon et al., 2017; Boisaubin et al., 2007; Chan & Pang, 2007; Oakes & Sheehan, 2012; Zhai & Qiu, 2007), as long as they were cognitively and mentally competent to do so (Boisaubin et al., 2007; Chan & Pang, 2007; Whitler, 1996). This was because older people had the rights and responsibilities to make their own decisions (Barmon et al., 2017; Chan & Pang, 2007; Zhai & Qiu, 2007), and they also had the right to have a good quality of life. However, nurses were not always able to assess older people's capacity, and the consequences for their autonomy, if they were judged incapable of making decisions (Whitler, 1996).

Nurses said that they had a responsibility to protect older people's rights to make their own decisions (Chan & Pang, 2007; Van Thiel & Van Delden, 1997). That included finding ways to make older people's decisions visible, minimising the potential risk of those decisions (Chan & Pang, 2007) and achieving the main goal, which was that older people had to be the main decisions makers if they were competent to make their own choices (Boisaubin et al., 2007; Zhai & Qiu, 2007). If an older person was not competent to make decisions by themselves, professionals and family members should help them by providing information and advice (Zhai & Qiu, 2007) or family members should make decisions for them (Boisaubin et al., 2007; Chan & Pang, 2007; Zhai & Qiu, 2007). However, nurses had a tendency to assume that older residents had limited capacity for decision-making and they took on the role of key decision makers (Ryden, 1985). In addition, they said they made decisions in the best interests of older people (Wikström & Emilsson, 2014).

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