Factors Influencing Quality of Life
This theme focused on managers’ perceptions of key quality of life issues for older adults. Six categories were identified:
- The physical environment.
- Making it like home.
- Involving the family.
- The social environment.
- Meaningful recreational activities.
- Community connections.
Managers perceived that residents’ quality of life was particularly affected by the physical and social environments in which they lived.
Physical Environment. Participants believed the physical environment of a facility greatly affected residents’ quality of life. Participants described the negative effect of the structure of older facilities on residents’ independence, privacy, and dignity. They likened living in large open wards to living a private life in a public space. Consequently, most participants believed having single, rather than multiple, occupancy rooms was central to good quality of life. Participants considered that single rooms with en-suite facilities should be the norm in both public and private facilities. One participant said:
New buildings should [have] single rooms…. The criteria that are used to build nursing homes…should be exactly the same for the public. There should be no difference. (Public Facility, Focus Group 6)
However, participants acknowledged that some residents preferred to share and that although these individuals were in the minority, their preferences should not be forgotten. Therefore, the managers suggested that facilities in the future should have a mix of single and double rooms.
Participants working in older facilities indicated that large open wards and cramped space was the norm in these facilities. In some cases, the lack of day rooms meant residents had little option but to remain by their bed for the day. The reality for residents living in these facilities was that their world shrank to the space around their bed. One participant said:
Patients get up in the morning, and they’re sitting on their chair, which is beside their bed, and the next bed is literally a couple of inches from them. I would not like to think that I’d be spending the rest of my days sitting by one bed, hoisted onto a commode, and then put back in my chair, and then my tray in front of me, and that was my 12-inch box for the rest of my life. (Public Facility, Focus Group 4)
Participants also reported that poor building structure and lack of amenities could decrease older adults’ independence and ability to perform self-care activities. The proximity of toilets was highlighted as a particular issue. It was reported that when toilets and bathrooms were located some distance from the residents, the possibility that residents could access them without help decreased. A participant stated:
One patient, if he wants to go to the bathroom, has to walk 100 steps to the nearest bathroom. The chances are that he will become dependent on nursing intervention much more easily than, say, if he had an en-suite facility that he has to walk 4 steps to get to the toilet…. The environment [should enhance] their movement and maintenance of function. (Public Facility, Focus Group 1)
There was unanimous agreement across the focus groups that communal living, particularly when coupled with an institutionalized approach to care, negatively affected residents’ quality of life. One focus group participant said:
I would hate to think that when I’m 80 years of age that my future life would be in a 6-bedded ward with the toilet beside the bed, having to watch what the other 5 [residents] want and having to eat what’s put in front of me, request something, having to get up when I’m told to, and go back when I’m told to. (Public Facility, Focus Group 6)
Making It Like Home. All focus group participants believed that creating homelike environments was an important determinant of residents’ quality of life. All agreed that the goal of care should be making residents’ lives in the facility as similar as possible to how they would choose to live at home. One participant stated:
I suppose a home [away]-from-home environment [is important]. I mean if you ask any of the patients where they’d like to be, they all want to be at home, and I think [it is important] to keep it homely. (Private Facility, Focus Group 3)
Participants believed living at home brought with it responsibility for making decisions about what to do. Consequently, they equated being homelike with giving residents control and choice. They believed residents should be given choices about their daily activities, including the time they wanted to wake up and go back to bed and what they wanted to do during the day. They argued that residents should not be expected to fit into the routine; rather, the routine should be sufficiently flexible to allow choice. One manager said:
The philosophy should be about making their [residents’] pattern of life as close to as what they would experience at home. There’s this thing called “institutional efficiency”—like we’ve to try and get the patients into the routine as quickly…and I think it should be the opposite way. (Public Facility, Focus Group 6)
One participant cautioned that when choices were offered, they had to be feasible and possible to carry through:
I mean it’s very fine to say to people, “What is your choice?”, but if you don’t have either the money or the staffing to deliver that choice, it’s a form of cruelty to actually to offer it. (Public Facility, Focus Group 1)
All participants also suggested that care should be individualized, person centered, and family centered. They believed residents should be treated as individuals, not patients. One participant stated:
Being treated as individuals [is important for quality of life], that they don’t just become…they very quickly become a patient. And really, within the care settings, they’re not. They’re not patients. (Private Facility, Focus Group 3)
However, participants suggested that individualized care did not necessarily mean any routine. They believed that some degree of routine was important and necessary but that the goal should be to have as “few rules as possible.” Some participants believed that greater choice was possible but that staff attitudes, as much as staffing levels, inhibited residents’ choice. They suggested staff themselves were sometimes too immersed in the routine to see beyond it and indicated that choice was not a reality in some care settings because routine continued to dominate. One of the managers said:
We’re so task oriented. People have to go back to bed at a certain time because you’re going to have less people on in the afternoon or the evening time, and people [residents] don’t get the choice at all…. I don’t honestly think that it’s all about staffing. (Public Facility, Focus Group 3)
Participants highlighted that giving residents choices required a fundamental shift in thinking, as giving choices meant accepting residents have the right to say no. One participant stated:
I think the big quality of life issue is that they still have their rights, human rights that they had when they were living in their home, to say that, “No, I don’t want you to come in and give me a shower today, thank you very much,” and that should be respected, rather than fitting into our routine. (Public Facility, Focus Group 4)
Participants maintained that a key factor in residents feeling at home was whether they were involved in the decision to move into the facility. Participants’ comments suggested that the decision was sometimes a forced choice, with the older person being excluded from decision making. For example:
I feel that if the family, if it’s positive and healthy and the family become involved with us, it’s much easier—the whole set-up, whereas if the family have been urging or pressurizing [sic] the elderly person to come in, the rifts start immediately, the person feels threatened and then there’s guilt, from the family’s point of view, and we’re sort of nearly—all of their responsibilities is put on us—if the choice isn’t their own, then there’s hostility and then the little pebbles or water wave starts spreading out—the negativity. (Voluntary Facility, Focus Group 2)
Involving the Family. Participants believed it was important that families were included in decisions about ongoing care. They reported that staff sometimes excluded the families and suggested this was because some nurses who were trained some time ago may not be comfortable with family-centered approaches to care. One manager stated:
Well, you do see that, we do try to keep families at bay, instead of inviting them in. Let them make decisions. I mean they shouldn’t be asking for permission to take their relative out for the day. They should be coming in and saying, “We’re going to…is there anything specific that they need, that you think they’re able for?” We should be encouraging a lot more family participation. (Private Facility, Focus Group 1)
Participants believed that an important dimension of quality of life for older adults was close links with their families. They recommended that a family-centered approach to care should be adopted when possible, in which care was shared and jointly planned.
Social Environment. Participants considered it important for residents to have opportunities to participate in social activities. They highlighted the importance of planned provision, variety, and a choice about whether to participate. Participants also considered it important for residents to maintain contact with their communities and for people from the community to be involved in some of the facility activities. They believed it was particularly important for residents to be placed in a facility near their home if they were to retain links with their community.
Meaningful Recreational Activities. Participants suggested that recreational activities were an important indicator of the quality of the social environment. For example, one participant said:
And I think a lot of residents probably would find that [boredom is] a problem initially when they go into long-term care, and then they get so used to the fact that there is nothing happening, and they sit there all day. I think that needs to be addressed. (Public Facility, Focus Group 1)
Most participants viewed activities as having the potential to be therapeutic, as opposed to simply alleviating boredom, if used to motivate residents to remain interested and engaged with life. One manager stated:
Well, I think it’s very important [having activities], it keeps them very motivated—activity, and it keeps their mindset from becoming very…looking inwards. And they love activity, and they…it cheers them up a lot, I find. (Private Facility, Focus Group 5)
Participants believed the activities offered should reflect residents’ interests; otherwise, they could be perceived as “filling in time.” One participant from a private facility said in Focus Group 2 that “activities… should be led by the residents really, by their needs, or requirements.”
An “outsider” facilitating the activities was considered important by some participants because they believed this created interest and change. One comment that reflected this:
[Volunteers] enhance the quality of life of people, don’t they? They do the little things that no one [does].... They develop personal relationships with individuals, as opposed to just going around to everyone. (Public Facility, Focus Group 7)
However, participants reported it was difficult to meet everyone’s needs, particularly in the larger facilities. One of the managers said:
They all have their own personality, and they have different expectations, and you know, the one that will play a game of cards, the other one never played cards in their life and won’t do it. It’s difficult trying to cater for everybody. (Public Facility, Focus Group 1)
Despite recognizing the importance of activities, participants found financing activities and trips problematic because such activities often were not budgeted. One participant stated:
It’s very difficult to achieve in a residential setting, and you don’t have a budget for it either, which is a problem. (Private Facility, Focus Group 1)
Community Connections. Participants highlighted the importance of enabling residents to keep in touch with their communities. For example:
I would have said that being part of the community [is important for quality of life], feeling like they are part of the community, and not being removed from it, or isolated from it. (Public Facility, Focus Group 3)
Participants pointed out that if residents were to keep in touch with their communities, it was important that they were placed in a facility near their home. One participant stated:
I think having services located as close to home as possible is important [referring to making it easier for families to visit]. (Private Facility, Focus Group 6)
Integrating day care centers into long-stay facilities was viewed as increasing the potential for residents to retain their local links. As one of the managers said:
With the day care centre, it’s a wonderful facility for the residents of a long-stay unit, whether it be private or public, because when the people come in from the villages around to the day care unit, the residents look forward to them coming in because they’re coming from their home areas, and they bring in the news, they chat, they meet. It’s a lovely social outing for the day care, but also for the residents, who look forward to them coming in and meeting their friends. (Public Facility, Focus Group 1)
Participants also highlighted the importance of volunteers. They represented someone different, someone residents could chat with and become friends with. One participant said:
[Volunteers] enhance the quality of life of people, don’t they? They do the little things that no one [does].… They develop personal relationships with individuals, as opposed to just going around to everyone. (Voluntary Facility, Focus Group 2)
Factors Influencing Policy
Participants raised many policy issues that affected older adults in Ireland. Analysis of these data revealed four main categories: shaping future care provision, increasing the visibility of older adults, providing the resources required for care, and changing the approach to inspection.
Shaping Future Care Provision. Many participants believed a new national strategy for older adults was required. They were of the opinion that prior policies had not been fully operationalized and stressed the need for a national policy for older adults that had full government commitment and appropriate resources allocated for implementation. One participant stated:
Well I would say [we need] a national strategy. But not a slow one, not a glossy document! (Public Facility, Focus Group 1)
Participants also reported that the current options for frail older adults were too limited, in that community provision was limited. Their vision was one that gave older adults a range of care options. They expressed the need for services to be “joined up” and based within the local communities. According to one manager:
People want to stay in the community, and they should be facilitated, but it does come down to choice. Some people would like to go to a nursing home, or they’d like to go to their community residential setting, or they’d like to stay at home, or they’d like to live in an independent space with a bit more security. (Public Facility, Focus Group 3)
Participants also reported that many older adults currently had difficulty accessing a place in long-stay care. The managers suggested that some older adults were waiting long periods of time for a bed to become available in a public facility. They believed this problem was compounded by the fact that some older adults who had the resources to pay for private health care were not doing so and, therefore, beds in public facilities were unavailable to those who were in real need but did not have the resources to pay for them. One participant said:
There should be something legislatively that the health boards can make some claim on an estate—I never thought I’d see myself saying that, but I’ve actually got to believe it now. A nephew or niece that has never visited them [the resident] or never had an input into their care suddenly benefits hugely. I think the reality is in years to come, where people are living longer, pensions have to last longer, you haven’t the same amount of people working, there’s going to be some radical shift in how to fund it, and that’s one drawback. (Public Facility, Focus Group 6)
Participants suggested there should be a new way of determining the financial resources of older adults entering long-term care, which was applied across sectors and administered by social services. Many participants reported that after a resident was admitted to long-term care, services such as physiotherapy and occupational therapy, which had been available in acute care, were no longer available to them. In addition, managers of private nursing homes reported that some residents had difficulties accessing services because residents had to pay. Although some residents had the resources to pay, others did not. Participants suggested it was an unfair burden on the residents with fewer financial resources, as they would be entitled to these services free of charge if they had remained in the public sector. A policy stating the rights of older adults to the range of services was therefore required.
Increasing the Visibility of Older Adults. Participants also suggested there was a need to lobby politicians and Department of Health and Children officials to ensure services for older adults were given the same emphasis and recognition as services for other vulnerable groups, such as disabled individuals. Some participants believed the lack of emphasis on older adults arose from apathy and ageist attitudes. They suggested ageism was a major issue in society and in nursing, and that it had a significant effect on residents’ quality of life. One manager of a public facility said in Focus Group 1, “It is affected by the fact that ageism operates right through society and into our institutions!”
Participants suggested that a Bill of Rights for older adults be developed. They said there were also particular issues related to the ethics of care for older adults and the lack of inclusion of older adults in the decision making process. They were concerned that family members might try to protect an aging relative by limiting the risks they take. However, participants suggested that taking informed risks was part of living and that older adults should have the right to take calculated risks. Participants argued that any new policy related to older adults should ensure they had the right of self-determination.
Providing the Resources Required for Care. Participants raised two important issues related to resources: the need for resources to be channeled into older adult services and issues related to payment for care. Participants reported a lack of resources within their services to fund innovative initiatives or new approaches to care provision. They suggested that sufficient funding had not been allocated for older adult services over a number of years and that facilities and staffing had therefore suffered. They indicated a need for a new emphasis within health care policy and for allocation of the resources required to implement new approaches. They stated that communal living was no longer acceptable and that purpose-built units that give older adults a room of their own were important and should be part of policy.
Participants also discussed issues related to funding for long-stay care. Two problems were evident. First, that the maximum grant available per person was inadequate, and second, that grant levels varied across the country.
Changing the Approach to Inspection. All participants raised the issue of inspection of nursing homes as being of concern. Currently, only private nursing homes are inspected, and these inspections are performed by staff employed by the health services. The consensus from all focus groups was that there needs to be a change in inspection regulations. All participants suggested that both public and private facilities should be inspected. According to one manager:
I think the health board facilities should be inspected too and brought up to a certain standard. They’re not. It’s one rule for one, and even with regard to inspecting private nursing homes, resources are very scarce on the ground. (Public Facility, Focus Group 2)
Some participants also reported a need to change the focus of inspection. They were concerned that the current focus was more on the state of facilities, rather than on the quality of care. Although they agreed the standard of the facility was important, they believed the emphasis should be more on standards of care and suggested there should be national standards for quality of care that would be used to direct inspections. They also wanted the new inspectorate to be independent from the health service. This would require the development of a new independent body responsible for inspecting all nursing home facilities.