Living in institutional care: Residents' experiences and coping strategies

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To be cited / referenced as:

Timonen, Virpi and O’Dwyer, Ciara (2009) ‘Living in Institutional Care:

Residents’ Experiences and Coping Strategies’,

Social Work in Health Care

,

2009.

Timonen, Virpi and O’Dwyer, Ciara:

Living in Institutional Care:

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Living in Institutional Care:

Residents’ Experiences and Coping Strategies

Virpi Timonen, DPhil Ciara O’Dwyer, MSc

Abstract

Insights into daily living in residential care settings are rare. This article draws on a qualitative dataset (semi-structured interviews and recordings of residents’ council meetings) that gives a glimpse of the experiences and coping strategies of (older) people living in residential care. The data highlights the range of unmet needs of the residents, similar to the categories of physiological, safety, love, esteem and self-actualisation needs in Maslow’s hierarchy of needs theory. Our analysis indicates that ‘higher’ and ‘lower’ needs are closely inter-twined and mutually reinforcing and should therefore be accorded equal emphasis by professionals (including social workers) employed within residential care settings.

Keywords: Residential care; Maslow’s Hierarchy of Needs, Quality of Life, Older People.

Virpi Timonen (timonenv@tcd.ie) is Director of the Social Policy and Ageing Research Centre (SPARC), School of Social Work and Social Policy, 3 College Green, Trinity College Dublin, Ireland. Ciara O’Dwyer (cmodwyer@tcd.ie) is Research Fellow in the Centre. Acknowledgements

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INTRODUCTION

Numerous studies have outlined the unmet physiological and psychological needs of people in residential care facilities . It has long been recognised that the traditional structures and work practices of institutional care settings are not necessarily conducive to a good quality of life for residents. Research has also shown that residents of care facilities attach great importance to the fulfilment of their psychological needs. Robichaud et al. (2006) found that three of the most important quality of life indicators identified by a sample of Canadian residents of care facilities were being treated with respect, access to relationships and positive attitudes from staff. Another Canadian study suggested that interaction with family and friends, personal comfort, the physical environment and mental stimulation were among the factors noted by residents as important for their quality of life in long-term care (Guse & Masesar, 1999). Exploratory interviews with Dutch people with dementia living in the community and in residential care settings revealed that ‘being of use/givingmeaning to life’ and ‘self-determination and freedom’ were important quality of life domains (Droes et al., 2006).

It is only in recent years that more attention has been devoted to improving the quality of residential care, and, in particular, ensuring that the care provided adheres to residents’ own expectations. While there is an extensive literature on the benefits of resident-centred care, care settings have been slow to change, perhaps as a result of limited research outlining what is important to older people who live in residential care settings (Kane & Kane, 2001).

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of respects: it draws on a large qualitative dataset that has some longitudinal elements; it throws light on a (still) relatively new and poorly-understood phenomenon of resident advocacy in institutional care; and it engages with a major theoretical construct, that of Maslow’s hierarchy of needs. From the practice and policy point of view, the article contributes to a greater understanding of the ways in which residents’ lives in institutional care are constrained, and can be improved, by professionals (including, and perhaps especially, social workers) employed within such settings.

We have organised our data analysis around the framework devised by Maslow (1943) in his hierarchy of needs theory; the reasons for adopting this framework are outlined below in the research methods and data analysis section. Our data revealed that residents had both physical and psycho-social (unmet) needs. The article discusses residents’ unmet physiological, safety, love, esteem and self-actualisation needs, and reflects on the need to devote more attention to meeting residents’ needs across the full scale of needs from the seemingly basic (but still often unmet) to the higher needs that are often seen as unattainable for people in care settings.

Maslow’s Hierarchy of Needs Theory

Maslow’s Hierarchy of Needs Theory, first posited in 1943, was one of the first frameworks for understanding how individuals’ assessment of quality of life could be related to how well their needs were being met. Maslow suggested that needs were hierarchical, with physiological needs taking precedence over other, psychological needs.

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(Maslow, 1943: 380), consist of love and affection needs and belonging needs, followed by the esteem needs, whereby humans desire self-respect and the esteem of others, as well as independence, confidence and achievement.

Maslow referred to the first four lower levels of need as the ‘deficit’ needs to highlight their physiological nature, while the fifth, self-actualisation, he referred to as the ‘being’ needs; these needs involve individuals’ continuous desire to fulfil their full potential and do what they are fitted for. While the term self-actualisation had previously been used by other theorists, Maslow saw the term as having a specific and limited meaning: “it refers to the desire… to become… everything that one is capable of becoming” (p. 382). Maslow suggested that only approximately one per cent of all human beings were self-actualisers, while others were still striving to have their lower needs met (Maslow, 1968).

Figure 1: Maslow’s Hierarchy of Needs

(Source: Maslow, 1968)

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review of studies based on Maslow’s theory, Wahba and Bridgewell (1976) found limited evidence to suggest that human needs are hierarchical. Max-Neef (1991) argued that needs are instead simultaneous and complementary with satisfaction thereof based on trade-offs, a conclusion supported by Reiss’ research on motivation (2004, 2008). In addition, Geller (1982) questioned Maslow’s narrow definition of the term ‘self-actualisation’, suggesting that Maslow’s theory is unable to offer an adequate account of the origin and nature of human needs.

In spite of its limitations, Maslow’s hierarchy of needs theory remains popular and has been used as a framework for understanding how the needs of vulnerable people could be met (Umoren, 1992; Zalenski & Raspa, 2006). In this article, we are using the hierarchy primarily as an organising framework and a heuristic tool. We wish to emphasise that we did not set out to test the theory, nor did we make any initial, guiding conjectures about life in institutional care based on Maslow’s theory. Rather, the picture that began to emerge from our data bore such a striking resemblance to Maslow’s categorisation of needs that we decided, at the data analysis stage, to utilise it as a framework for organising our discussion of the data.

RESEARCH METHODS

The discussion presented in this article is based on data collected during the course of an evaluation of a residents’ council established within a large, public-sector residential care setting in Ireland, St. Anne’s.i_{The facility catered mainly for older people, many of whom}

had cognitive impairments or severe physical disabilities. One unit catered exclusively for younger people (under 65) with disabilities. The facility was located in an urban area, approximately one kilometre from the nearest shops and other services, making it difficult for residents to reach these without assistance.

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attention of the facility’s management team. The group met with a staff member once a month, in order to highlight aspects of life in the facility that they felt could be improved. The group meetings were both observed and audio-recorded by the research team. In addition, semi-structured interviews were conducted with twelve members of the group.ii_{All twelve of}

the original group members were interviewed at the outset of the project. After the advocacy group had been in operation for a one-year period, seven group members were re-interviewed. The five others were no longer in the group for a variety of reasons (deteriorating health, death, loss of interest). All of the individual interviews were audio-recorded and transcribed. Ethical (human subject) approval for the study was obtained from the researchers’ university, and highest standards of ethical conduct of research were adhered to throughout the research process.

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from our data became evident and we started to utilize his theory as a framework for organizing and presenting the findings of our analysis. Below, we outline in detail how our data corroborates and contradicts aspects of Maslow’s theory.

This project, in common with all research endeavours, had a number of limitations that we wish to make explicit. This was a qualitative study that can not be argued to be representative of the institutional care population of Ireland. However, the purpose of the study was not to yield generalizable information (for that, a large-n quantitative study utilising probability sampling would have been necessary), but rather to explore lives in institutional care, and to make a contribution to theorising on the (met and unmet) needs of institutional care residents. While the methods utilised by us were carefully documented and are therefore replicable, our research findings are of uncertain transferability as the context in which a study of this kind is carried out inevitably has a strong impact on the research findings.

FINDINGS

Physiological Needs

Maslow (1943: 373) suggested that the basic, ‘pre-potent’ needs are physiological, including the need for, inter alia, food, hydration, sleep, sex and oxygen. Evidence from both the group meetings and the individual interviews suggested that these basic needs were not always met:

I have to share a room with a man…[who is] on the suction machine sometimes

[as] he has very bad breathing…I had three hours sleep today…because of

hearing it through the night…that is why I am sleeping all through the day…so

when he gets up…to go down to the dayroom I do get in under the covers…I

am just trying…to have a little rest but then all through the day there is

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(Male group member in his twenties, individual interview) Resident 1: [nurses and care workers] talk very, very loudly among themselves. At that hour in the morning [six o’clock], it’s not fair.

Resident 2: In my ward one [person] snores like a motorbike.

(Group discussion, 10th_meeting)

As a result of poor physical facilities, residents were also at times unable to keep warm and physically comfortable:

‘I came out of the bath…and the ward was…cold…You are freezing…You

wouldn’t get that at home’.

(Male group member in his fifties, 1st_meeting)

Resident 1: I was in the shower now yesterday morning and it’s far too small and they have to literally put down towels to get the water. It’s far too small in

every way, in every way…

Resident 2: There’s water on our unit, spilling out onto the floor when you’re having a shower.

(Group discussion, 3rd_meeting)

While residents always had enough to eat, many felt that the quality of food left a lot to be desired:

…the food is still just the same, sometimes you can’t even eat the meat.

Especially the so-called lamb, I think he died before he was killed!

(Female group member in her eighties, 11th_meeting)

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I found that the dinner yesterday was absolutely cold…it was cabbage, and

cold cabbage is horrible…and the potatoes were horrible, really watery, oh

they were horrible.

…we never get a bit of broccoli or cauliflower, it’s carrots, carrots, carrots,

mushy peas and maybe turnip – it’s monotonous.

(Female group member in her eighties, 3rd_meeting)

However, some of the remarks made by residents suggest that the poor quality of food was not the central concern, but rather, what this and the organisation of mealtimes revealed about the attitude towards residents:

I think [staff] should sample the food themselves to see…I am…disabled from

the neck down, not from the neck up, that’s how I know hot from cold.

(Female group member in her fifties, 6th_meeting)

Resident 1: They clean the table before the meal is finished…. [You need] a respectable time to eat your meals... You feel like you are in school.

Resident 2: …when they spray that stuff [cleaning solution] it splashes onto you.

Safety Needs

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This is a home from home.

(Male group member in his eighties, individual interview) However, this perception was not shared by all. Another resident stated that the facility did not feel like home, thus perhaps suggesting that she did not have her safety and stability needs met within St. Anne’s:

I wouldn’t like to stay here for good…I’d like my own little place…

(Female group member in her eighties, individual interview) Ensuring the physical safety of residents appeared to be one of the greatest concerns of staff, largely as a result of health and safety legislation. However, the need to adhere to the rules and regulations often inadvertently had a negative impact on residents’ lives, particularly on their sense of independence:

We are not allowed into the kitchen any more.

(Male group member in his fifties, individual interview) Resident 1: We have to get somebody to bring us out…that’s not always available.

Resident 2: And I’m not allowed to go out yet on my own in the wheelchair. I’m a novice.

Resident 1: You’re a danger to the public! [general laughter]

(Group discussion, 3rd_meeting)

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When you are in pain there is nothing done about it…I am sometimes in a lot of

pain – for months in pain.

(Female group member in her fifties, individual interview)

[O]ften in our day room, a person becomes unwell and there’s no nurse

available and we keep…I’m not able to get up and walk and go out for a nurse

and I keep shouting for a nurse and a nurse can’t come…

(Female group member in her eighties, 2nd_meeting)

Other comments made by the respondents indicated that they felt that their health was somewhat under threat as a result of certain staff working practices:

I often watch [the nurses] when they are doing the medication. They can be

awful running their hand through their hair. And another thing very few of

them have in their possession handkerchiefs. They just use the back of their

hand but I am sorry to have to bring this up but it is true and another thing

yeah they don’t bring handkerchiefs for their nose or anything, it is not good

enough.

The lack of privacy afforded to residents undermined their need for safety and security of possessions:

I have a chest of drawers which I share with another lady.

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I looked in the wardrobe [for my] fleece and next thing…some fellow just shot

past me [wearing] my fleece.

Interviewer: If you wanted to keep something safe and private and secure, is there anywhere…?

Resident: Only if it was money.

I: And…where would that go?

R: Into the Sister’s little safe I think.

I: OK but there’s nothing by your bed?

R: There is nowhere…in my room where I would be able to put anything.

(Male group member in his twenties, individual interview) Love / Belonging Needs

Despite being surrounded by others, residents had few opportunities for either providing or receiving affection or forming friendships:

[Living here is] an improvement [compared to previously living alone]…

[although I don’t] talk to anybody [except] Mary.

(Female group member in her eighties, individual interview)

Nobody communicates with anybody…there is no laughter. There is no

friendship, they don’t encourage that. People are vegetating.

(Female group member in her fifties, individual interview) Residents also had to contend with difficulties in conducting a meaningful relationship with family and friends:

I only go out on Sunday, now my daughter could take me out, but if you could

understand her husband is coming in at an awkward hour and the children

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yeah outings I don’t expect my family because they have to wait till their

husband come in, their children from school, I’d like to go out more...

(Female group member in her fifties, individual interview) Even when residents had the opportunity to spend time with family and friends who came to visit, there was little space available to allow them to have private conversations:

I notice when visitors come in to certain people in my unit... in the day room

there’s a certain lady and she listens to every word that those people ... I think

it’s very wrong. It’s very embarrassing for the visitors to have someone

listening...

Esteem Needs

Maslow (1943) suggested that every individual has a need for a stable, firmly based (usually) high evaluation of themselves, for self-respect, and for the esteem of others. It appeared that, at least in some cases, staff showed little respect for residents, and even more worryingly, engaged in threatening behaviour:

Staff can sometimes address the patients in a way they shouldn’t speak to them,

in a derogatory way…[or] sarcastic…’sit down and be a good girl’ has been

said to me…

It is possible that this lack of respect also led to residents lacking confidence in their own abilities or opinions, as illustrated by the reply given by one individual when asked her opinion on whether the facility was run like a hospital:

Well I’m not long enough here to know. I’m just here [a few months]. So I

wouldn’t have any say on the matter or not anyway.

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In certain cases, residents had opportunities to improve their confidence and use their skills to help other residents, although the extent to which this was actively encouraged by staff was unclear. The following quote highlights the benefits of the use of such skills for a resident’s level of self-confidence:

There is one resident who speaks very little. One day, I told him a story, and we

got on very well, I told him my story and we laughed, then he wanted me to tell

his wife the story, she came in, and she also laughed, I was getting him to say

more words [than he normally would] and he is still saying more words…

(Male group member in his eighties, 2nd_meeting)

The residents recounted several occasions on which they had experienced disrespectful treatment. Dignity was often absent from the lives of residents:

The nurse turned around and says I will give you your…injection, pulled up my

t-shirt … with visitors and other patients there…I said ‘please don’t do that’.

Her response was ‘who do you think you are?’ and ‘why do you want the

curtain pulled?...Doctors have done the very same thing, examined me…in the

hallway.

SELF-ACTUALISATION NEEDS

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in spite of having unmet ‘lower needs’. This was reflected in a great deal of frustration about the lack of mental stimulation, autonomy and independence available to residents. In this respect, therefore, our findings do not support Maslow’s theory as it was evident that some of the residents aspired to, and in some cases managed to attain, self-actualisation despite also having unmet ‘lower’ needs.

The lack of activities available to residents resulted in a large proportion of their time being spent unoccupied:

[Resident]: Oh I’d like to see a lot more happening. We’re sitting down all day doing nothing in the unit. Sitting on the bed looking at television. I’d like

something else. It drives me nuts by times.

I: Right, and have you said that to [the staff]?

R: Ah sure, they won’t listen to you.

(Male group member in his twenties, individual interview) Resident 1: Some days everything just falls flat, do you agree with me?

Resident 2: Like the days you’re just staring out the window.

(Group discussion, 2nd_meeting)

This resident spoke of her despair at the lack of mental stimulation provided within St Anne’s, worrying about the effects on her morale and cognitive abilities:

What we want here is a home life. We want a sense of normality. Instead we

are vegetating in a room, it is hard and it is not right.

Even where enjoyable activities were provided, the role of residents was sometimes confined to that of a passive observer, rather than an active participant:

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Resident: Yeah, but you are only standing looking at them [cookery class instructors].’

(Female group member in her eighties, individual interview) Table 1 below lists the activities currently available to and the activities wished for by respondents, as voiced during the group meetings and individual interviews. The wished-for, currently unavailable activities were evidently of a more (inter-)active, creative and challenging nature than the activities actually available to respondents, hinting that this channel of self-actualisation is not being utilised in a way that reflects residents’ interests and wishes.

Table 1: Current and desired activities noted by respondents

Current activities Wished-for activities

Prayers Gardening, planting flowers

Bingo Games, puzzles

Playing cards Group activities

Knitting Outings

Religious (hymns, benediction) Crafts

Cookery Computing

SONAS (sensory activity) Story-telling

Aquarium (viewing)

Current affairs

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Facilitator: If people want and look for a shower or a bath on a daily basis is that ok?

Resident 1: No. We are nominated a designated specific day. Like a Tuesday.

Resident 2: Mine do it twice a week, Tuesday and Friday.

R 1: …if they are busy [on a Tuesday] they can’t do me. They don’t do me until

the next day.

Facilitator: [So showers are] not really available…on demand?

R 1: No, definitely [not].

The frustration voiced by residents with regard to the lack of choice available to them resulted partly from the failure of the management to recognise the ability of residents to make more of the decisions regarding their own care. From the point of entry into the facility, to the basic day-to-day decisions, residents had limited autonomy over their own lives:

Interviewer: [D]o you remember being part of making [the] decision to move here?

Resident: No. (…) I felt terrible down-hearted.

(Female group member in her eighties, individual interview)

[…] staff maybe nurses and care staff talking over the people…almost as if the

patient is not there and…if they are having a change of medication or

whatever, [they should] include [us]…explain… why they are changing it.’

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COPING WITH THE LIMITATIONS AND CHALLENGES OF LIVING IN INSTITUTIONAL CARE

With the exception of the advocacy initiative, the residents were largely expected to develop their own coping mechanisms to deal with the losses and limitations they experienced as a result of moving into and living in the facility. They used a number of coping mechanisms, including humour:

Facilitator: John is making the point that nothing gets done unless it’s in the book [nurses’ day book].

John: If you have to die, it has to be in the book! [General laughter]

(Male group member in his fifties, 3rd_meeting)

Others appeared to ‘accept’ the negative elements of life in St. Anne’s, by distracting themselves or keeping busy:

I don’t mind [having no activities] so much, ’cause I knit and read and I play

my cards, I keep myself occupied, others are just staring at the four walls.

(Female group member in her eighties, 2nd_meeting)

Another resident used a similar approach, displaying a great deal of resilience but also resignation in the face of what she perceived to be disrespectful treatment.

Facilitator: So does [staff ignoring you] bother you?

Resident: No, not really. I get over it. You have to, you have to.

Others tried to ‘rationalise’ the negative aspects of their lives, suggesting that things could be worse, or that they should not expect much more, given their age and level of dependence:

I don’t expect too much from the time I have left…I’ve done pretty good to go

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(Male group member in his eighties, individual interview)

[I am] thankful for what I have; [it] could be a lot worse.

(Female group member in her eighties, individual interview) Others attempted to ‘avoid’ trouble, suggesting that putting up with poor treatment from staff and trying to ‘keep quiet’ helped to ensure an easier life in St Anne’s:

I have been left sitting on a commode for [a very long time]. [The staff say]

‘what do you think I am? I have only two hands’. Well I said ‘Please, if you are

having a bad day, please don’t take it out on me’. They are short-staffed

anyway, which is totally fine but if you’re in pain it’s another thing. So. I don’t

know whether it’s worth [complaining further]’.

Resident 1: I don’t like causing any trouble…I keep quiet.

Resident 2: [T]hat is [a way of] handling it…just keep quiet and that’s it…the fear of causing trouble…that is what it is, isn’t it. Fear of causing trouble and

there is a backlash on you…

It is possible that residents tended to desist from complaining as they were worried about possible repercussions, as illustrated by the following quote:

One of the women in there, come four o’clock when tea is over, she likes to go

to bed you know. She keeps saying ‘Will I go down now? Will I go down now?’

So, one of the sisters said to her, ‘If you don’t stop that I’m going to keep you

up until the night staff and you won’t go to bed until the night staff come out’.

[This] woman has a very bad leg, a pain in her leg. That can’t be right can it?

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The various coping mechanisms used highlight both the difficulties associated with living in a residential care setting, the residents’ desire to be treated with respect, and their frustrations with the lack of opportunities for personal growth.

DISCUSSION AND IMPLICATIONS

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improvement in the physical infrastructure of the care setting) prior to changes that pertain to ‘lower’ needs.

One possible explanation for the frustration expressed by the research participants may lie in their limited capacity to change their circumstances. Abrams (1978) suggests that when patients go into hospital, they assume the role of a passive recipient of healthcare. This is largely as a result of the structured roles and work practices that allow staff to assume the role of ‘guardians of knowledge’ and expect patients to be compliant and dependent. Similarly, residents of St. Anne’s were expected to adapt the persona of “passive recipients” which facilitated staff working practices, but also reflected the lack of focus on residents’ higher needs. The internalisation of the role of a ‘passive recipient’ by some residents prevented them from shaping their own personal development and the coping mechanisms that they used acted as a poor substitute for progression towards meeting their esteem and self-actualisation needs. However, other residents were clearly in a position to aspire to the higher (esteem and self-actualisation) needs despite the inadequate extent to which their ‘lower’ needs were met. We therefore noted considerable variance among our respondents regarding the ability to meet, and interest in addressing, self-actualisation needs. Further study is warranted in order to gain a deeper understanding of why some institutional care residents are more focused on these self-actualisation needs than others, and also in order to gain an insight into how residents can be assisted in the process of becoming aware of and striving towards meeting these needs.

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i _{This is a pseudonym.}

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