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To be cited / referenced as:
Timonen, Virpi and ODwyer, Ciara (2009) Living in Institutional Care: Residents Experiences and Coping Strategies, Social Work in Health Care, 2009.
Timonen, Virpi and ODwyer, Ciara:
Living in Institutional Care:
Residents Experiences and Coping Strategies
Living in Institutional Care:
Residents Experiences and Coping Strategies
Virpi Timonen, DPhil
Ciara ODwyer, 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 Maslows 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; Maslows Hierarchy of Needs, Quality of Life, Older People.
Virpi Timonen ( HYPERLINK "mailto:timonenv@tcd.ie" 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 ODwyer ( HYPERLINK "mailto:cmodwyer@tcd.ie" cmodwyer@tcd.ie) is Research Fellow in the Centre.
Acknowledgements
This study was supported by a grant from the Health Services Executive (Ireland). The authors wish to thank Ms Ana Diaz and Ms Eileen Kelly for their help in collecting the data.
INTRODUCTION
Numerous studies have outlined the unmet physiological and psychological needs of people in residential care facilities ADDIN EN.CITE ADDIN EN.CITE.DATA (Barnes, 2006; Hansebo & Kihlgren, 2004; Kayser-Jones et al., 2003; Nelson, 2000; Teno et al, 2004; ADDIN EN.CITE ADDIN EN.CITE.DATA Angus et al, 2005; Tuckett, 2007). 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. ADDIN EN.CITE Robinchaud200617217217217Robinchaud, Line,Durand, Pierre J.,Bdard, Ren,Ouellet, Jean-Paul,Quality of life indicators in long term care: Opinions of elderly residents and their familiesCanadian Journal of Occupational TherapyCanadian Journal of Occupational Therapy245-251734quality of lifeLong Term Care2006(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 ADDIN EN.CITE Guse199994949417Guse, Lorna W.,Masesar, Mary AnnQuality of life and successful aging in long-term care: Perceptions of residentsIssues in Mental Health NursingIssues in Mental Health Nursing527-5392061999Informa Healthcare0161-2840http://www.informaworld.com/10.1080/016128499248349(Guse & Masesar, 1999). Exploratory interviews with Dutch people with dementia living in the community and in residential care settings revealed that being of use/giving meaning to life and self-determination and freedom were important quality of life domains ADDIN EN.CITE Droes200672727217Droes, Rose-MarieBoelens-Van Der Knoop, Ellen C. C.Bos, JokeMeihuizen, LucindaEttema, Teake P.Gerritsen, Debbie L.Hoogeveen, FransDe Lange, JacomineSchoLzel-Dorenbos, Carla J. M.Quality of life in dementia in perspective: An explorative study of variations in opinions among people with dementia and their professional caregivers, and in literatureDementiaDementia533-55854advocacy and dementia2006November 1, 2006http://dem.sagepub.com/cgi/content/abstract/5/4/53310.1177/1471301206069929(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 ADDIN EN.CITE Kane200167676717Kane, R.L.,Kane, R.A.,What Older People Want From Long-Term Care, And How They Can Get ItHealth AffairsHealth Affairs114-127206empowerment2001November 1, 2001http://content.healthaffairs.org/cgi/content/abstract/20/6/114(Kane & Kane, 2001).
Insights into daily living in residential care settings are rare. This article presents the analysis of interview and group discussion data collected in the course of an evaluation of an advocacy group (residents council) in an Irish residential care setting. The data give an insight into the experiences and coping strategies of (in our sample, mostly older) people living in residential care settings. The study makes a contribution to the literature in a number 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 Maslows 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 ADDIN EN.CITE Maslow194325425425417Maslow, A.H.A Theory of Human MotivationPsychological ReviewPsychological Review370-396501943(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.
Maslows Hierarchy of Needs Theory
Maslows 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.
As illustrated in Figure 1 below, Maslow suggested that humans had needs on five levels. The most basic needs of all humans were physiological, including the need for, inter alia, oxygen, water, food, heat, sleep and sex. Once these needs are met, humans wish and therefore seek to have their safety needs met: these include structure, order, stability and protection. The third set of needs, which arise once the safety needs are fairly well gratified ADDIN EN.CITE Maslow1943254: 38025425417Maslow, A.H.A Theory of Human MotivationPsychological ReviewPsychological Review370-396501943(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 ADDIN EN.CITE Maslow19682632632636Maslow, A.H.Towards a Psychology of Being1968Princeton, N.J.Van Nostrand(Maslow, 1968).
Figure 1: Maslows Hierarchy of Needs ADDIN EN.CITE Maslow1968263Source: 2632636Maslow, A.H.Towards a Psychology of Being1968Princeton, N.J.Van Nostrand(Source: Maslow, 1968)
Maslows theory is not without its critics, but as the focus of our article is not on criticising the theory, we can only offer a cursory summary of some aspects of this critique. In their review of studies based on Maslows theory, Wahba and Bridgewell ADDIN EN.CITE Wahba197626426426417Wahba, A., Bridgewell, L.,Maslow reconsidered: A review of research on the need hierarchy theory.Organizational Behavior and Human PerformanceOrganizational Behavior and Human Performance212-240151976(1976) found limited evidence to suggest that human needs are hierarchical. Max-Neef ADDIN EN.CITE Max-Neef19912622622626Max-Neef, M.,Human-Scale Development-Conception, Application and Further Reflection1991LondonApex Press(1991) argued that needs are instead simultaneous and complementary with satisfaction thereof based on trade-offs, a conclusion supported by Reiss research on motivation ADDIN EN.CITE Reiss200426526526517Reiss, StevenMultifacted Nature of Intrinsic Motivation: The Theory of 16 Basic DesiresReview of General PsychologyReview of General Psychology179-193832004Reiss20082662662666Reiss, StevenThe Normal Personality: A New Way of Thinking about People2008Cambridge Cambridge University Press(2004, 2008). In addition, Geller ADDIN EN.CITE Geller198227027027017Geller, LeonardThe Failure of Self-Actualization Theory: A Critique of Carl Rogers and Abraham MaslowJournal of Humanistic PsychologyJournal of Humanistic Psychology56-732221982April 1, 1982http://jhp.sagepub.com/cgi/content/abstract/22/2/5610.1177/0022167882222004(1982) questioned Maslows narrow definition of the term self-actualisation, suggesting that Maslows theory is unable to offer an adequate account of the origin and nature of human needs.
In spite of its limitations, Maslows hierarchy of needs theory remains popular and has been used as a framework for understanding how the needs of vulnerable people could be met ADDIN EN.CITE Zalenski200626726726717Zalenski, Robert J.Raspa, RichardMaslow's Hierarchy of Needs: A Framework for Achieving Human Potential in HospiceJournal of Palliative MedicineJournal of Palliative Medicine1120-1127952006http://www.liebertonline.com/doi/abs/10.1089/jpm.2006.9.1120doi:10.1089/jpm.2006.9.1120Umoren199226926926917Umoren, Joseph A.Maslow Hierarchy of Needs and OBRA 1987: Toward Need Satisfaction by Nursing Home ResidentsEducational GerontologyEducational Gerontology657-6701861992(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 Maslows theory. Rather, the picture that began to emerge from our data bore such a striking resemblance to Maslows 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. Annes. 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.
The group was set up by staff members from within the facility who wished to gain an understanding of the views and concerns of residents and to bring any issues raised to the attention of the facilitys 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. 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.
The data were analysed by the authors using both manual coding and NVivo qualitative analysis software. The researchers read the interview and group meeting transcripts several times in order to familiarise themselves with the data. While the overall purpose of the research was to assess the extent to which the advocacy project helped to improve the lives of those living within the facility, the focus of this article lies in our analysis of the content of group discussions and individual interviews pertaining to life within the facility, and in particular those aspects of life in institutional care that the respondents experienced as unsatisfactory. Potentially relevant text was highlighted during a process of provisional coding. Next, we questioned this provisionally coded data with the view to discovering central concepts and categories (i.e. residents needs, how and why these were met or not met, the role of structures, practices and professionals in enabling or preventing the meeting of needs, and so on). Individual cases and transcripts were then compared for similarities and differences through a process of constant comparison. At an early stage of this process, the resemblance between Maslows hierarchy of needs theory (1943) and the themes emerging 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 Maslows 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 ADDIN EN.CITE Maslow1943254: 37325425417Maslow, A.H.A Theory of Human MotivationPsychological ReviewPsychological Review370-396501943(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 breathingI had three hours sleep todaybecause of hearing it through the nightthat is why I am sleeping all through the dayso when he gets upto go down to the dayroom I do get in under the coversI am just tryingto have a little rest but then all through the day there is cleaners coming in and out.
(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 oclock], its 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 bathand the ward wascoldYou are freezingYou wouldnt get that at home.
(Male group member in his fifties, 1st meeting)
Resident 1: I was in the shower now yesterday morning and its far too small and they have to literally put down towels to get the water. Its far too small in every way, in every way
Resident 2: Theres water on our unit, spilling out onto the floor when youre 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 cant 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)
Frequent references were also made to meals being served cold, and to the lack of variety in the food provided:
I found that the dinner yesterday was absolutely coldit was cabbage, and cold cabbage is horribleand the potatoes were horrible, really watery, oh they were horrible.
(Female group member in her eighties, 7th meeting)
we never get a bit of broccoli or cauliflower, its carrots, carrots, carrots, mushy peas and maybe turnip its 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 seeI amdisabled from the neck down, not from the neck up, thats 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.
(Group discussion, 4th meeting)
Safety Needs
Using the behaviour of children as an example, Maslow suggested that human beings prefer a safe, orderly, predictable world (p. 378), and, more broadly, attempt to seek safety and stability including a preference for familiar rather than unfamiliar things (p. 379). In this regard, residents appeared to feel emotionally safe. The sociability of the staff ensured that some respondents had a largely positive experienced living in residential care settings:
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. Annes:
I wouldnt like to stay here for goodId 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 outthats not always available.
Resident 2: And Im not allowed to go out yet on my own in the wheelchair. Im a novice.
Resident 1: Youre a danger to the public! [general laughter]
(Group discussion, 3rd meeting)
In his description of the need for safety, Maslow suggested that a natural aversion to illness, being physically endangered and being in pain were among the safety-seeking mechanisms employed by humans. In this regard, it appeared that the care facility was not at all times meeting the safety needs of residents:
When you are in pain there is nothing done about itI 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 theres no nurse available and we keepIm not able to get up and walk and go out for a nurse and I keep shouting for a nurse and a nurse cant 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 dont bring handkerchiefs for their nose or anything, it is not good enough.
(Female group member in her eighties, 6th meeting)
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.
(Female group member in her eighties, 8th meeting)
The lack of safe, personal storage sometimes led to the loss of personal clothing and meant that ensuring the safety of residents possessions required handing them over to a member of nursing staff:
I looked in the wardrobe [for my] fleece and next thingsome 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: Andwhere would that go?
R: Into the Sisters little safe I think.
I: OK but theres nothing by your bed?
R: There is nowherein 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 dont] talk to anybody [except] Mary.
(Female group member in her eighties, individual interview)
Nobody communicates with anybodythere is no laughter. There is no friendship, they dont 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 from school. And then who drives me up they are in work. Id love to go out, yeah outings I dont expect my family because they have to wait till their husband come in, their children from school, Id 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 theres a certain lady and she listens to every word that those people ... I think its very wrong. Its very embarrassing for the visitors to have someone listening...
(Female group member in her eighties, 11th meeting)
Esteem Needs
Maslow ADDIN EN.CITE Maslow194325425425417Maslow, A.H.A Theory of Human MotivationPsychological ReviewPsychological Review370-396501943(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 shouldnt speak to them, in a derogatory way[or] sarcasticsit down and be a good girl has been said to me
(Female group member in her fifties, 6th meeting)
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 Im not long enough here to know. Im just here [a few months]. So I wouldnt have any say on the matter or not anyway.
(Female group member in her eighties, 1st meeting)
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 residents 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 yourinjection, pulled up my t-shirt with visitors and other patients thereI said please dont 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 mein the hallway.
(Female group member in her fifties, 5th meeting)
SELF-ACTUALISATION NEEDS
According to Maslow ADDIN EN.CITE Maslow1943254: 38225425417Maslow, A.H.A Theory of Human MotivationPsychological ReviewPsychological Review370-396501943(1943: 382), self-actualisation implies the desire for self-fulfilment, the desire to become everything that one is capable of becoming. As noted earlier, much of the criticism of Maslows hierarchy of needs theory has been directed at his assertion that less than two per cent of the worlds population are self-actualisers ADDIN EN.CITE Maslow19682632632636Maslow, A.H.Towards a Psychology of Being1968Princeton, N.J.Van Nostrand(Maslow, 1968), given that the ability to self-actualise requires all of the lower needs to be first fulfilled. However, as the quotes below show, some respondents had great difficulties in accepting the limited opportunities for self-development, self-fulfilment and self-expression, 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 Maslows 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 Id like to see a lot more happening. Were sitting down all day doing nothing in the unit. Sitting on the bed looking at television. Id like something else. It drives me nuts by times.
I: Right, and have you said that to [the staff]?
R: Ah sure, they wont 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 youre just staring out the window.
(Group discussion, 2nd meeting)
This resident spoke of her despair at the lack of mental stimulation provided within St Annes, 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.
(Female group member in her fifties, 5th meeting)
Even where enjoyable activities were provided, the role of residents was sometimes confined to that of a passive observer, rather than an active participant:
Interviewer: I think they do a bit of cooking here, do they?
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 respondentsCurrent activitiesWished-for activitiesPrayersGardening, planting flowersBingoGames, puzzlesPlaying cardsGroup activitiesKnittingOutingsReligious (hymns, benediction)CraftsCookery ComputingSONAS (sensory activity)Story-tellingAquarium (viewing)Current affairs
Residents also expressed a great deal of dissatisfaction with the regimented lifestyle and prioritisation of routine over the needs of residents that characterised life in the facility:
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 cant do me. They dont do me until the next day.
Facilitator: [So showers are] not really availableon demand?
R 1: No, definitely [not].
(Group discussion, 7th meeting)
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 peoplealmost as if the patient is not there andif they are having a change of medication or whatever, [they should] include [us]explain why they are changing it.
(Female group member in her fifties, 4th meeting)
The level of frustration expressed by residents over their limited opportunities to participate in decision-making concerning their care and lives in the institution is indicative of the value placed by residents on having their highest needs met.
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 its 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. Annes, by distracting themselves or keeping busy:
I dont 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.
(Female group member in her eighties, 10th meeting)
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 dont expect too much from the time I have leftIve done pretty good to go as far as I have.
(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 Annes:
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 dont take it out on me. They are short-staffed anyway, which is totally fine but if youre in pain its another thing. So. I dont know whether its worth [complaining further].
(Female group member in her eighties, 10th meeting)
Resident 1: I dont like causing any troubleI keep quiet.
Resident 2: [T]hat is [a way of] handling itjust keep quiet and thats itthe fear of causing troublethat is what it is, isnt it. Fear of causing trouble and there is a backlash on you
(Group discussion, 10th meeting)
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 oclock 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 dont stop that Im going to keep you up until the night staff and you wont go to bed until the night staff come out. [This] woman has a very bad leg, a pain in her leg. That cant be right can it?
(Male group member in his fifties, 12th meeting)
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
While the residents of St. Annes did have concerns about basic needs, such as food, physical comfort and interference with sleep, the inadequacy of these basic provisions was not the central difficulty for them. Rather, it was lack of mental stimulation and respect shown to them and the loss of dignity and independence that ensued. As residents were never strictly speaking left hungry, cold, without opportunities for sleeping, nor put in any direct physical danger, it can be argued that this allowed residents to focus on their higher esteem and self-actualisation needs in accordance with Maslows theory where fulfilment of higher needs is aspired to once lower needs are satisfied. However, in contradiction to Maslows argument, it is also evident from our data that some residents can, and do, aspire to higher needs even where their lower needs remain unmet or are only inadequately met. Furthermore, lower and higher needs are closely intertwined: inadequate provision for lower needs (e.g. unappetising food served under pressure to consume it quickly) is an indicator that higher needs (e.g. for respect) are also being infringed or neglected. It is therefore important to guard against the assumption that practices pertaining to higher needs (such as residents councils, advocacy and consultation initiatives) should only be implemented when the lower needs have been met. Given the central importance of higher needs even for residents whose lower needs remain unmet, practices and policies that support the achievement of esteem and self-actualisation needs should be implemented in parallel with, and where necessary (e.g. due to resource constrains that prevent for instance the 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 ADDIN EN.CITE Abrams197829929929917Abrams, N.A contrary view of the nurse as patient advocateNursing ForumNursing Forum258-2671731978(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. Annes 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.
Our study has indicated that Maslows framework can be used to gauge the types and extent of unmet needs among institutional care residents. While we do not make any claims about the generalisability or transferability of the results, we do recommend that the potential of the approach used here be explored further both by researchers and practitioners, especially social workers, working with people in institutional care. In social work practice and research, utilisation of this relatively simple framework can help to gain a better understanding of the key areas where residents needs remain unmet. We expect that this framework would be particularly helpful for social work professionals who are considering the initiation and on-going evaluation of residents councils and similar advocacy and empowerment initiatives. Ideally, the qualitative approach outlined here would be used in conjunction with ongoing collection of quantitative data on the quality of life and satisfaction with care among institutional care recipients: together, these approaches can yield a comprehensive picture and understanding of the facets of life that are important to residents, the areas where improvement is needed, and the ways in which residents can be more closely and meaningfully involved in making choices and shaping their own lives in institutional care.
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Living in Institutional Care Timonen, Virpi and ODwyer, Ciara
PAGE
Page PAGE 2 of NUMPAGES 26
Timonen, Virpi and ODwyer, Ciara
This is a pseudonym.
All but one lived in the facility; due to the high level of cognitive impairment in all residents in one unit, a volunteer who regularly visited the unit acted as the representative for that unit.
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