CCAHTE Featured Peer Reviewed Research
Home is Where the Heart is: A Reader's Theatre
Maura McIntyre Ed.D.
This paper draws from qualitative research that seeks: to provide a window into the functioning of the dynamic social environment of a publicly funded nursing home in a large Canadian urban centre: to better understand how staff contribute, beyond role definition or job description, to the environment as a home like setting: and to gain insights into the complex interaction between individuals’ personal and professional commitment to caregiving. I explore ‘care’ and ‘home’, as separate concepts and map the terrain of their intersection through academic theory and everyday discourse. I consider how, in the institutional context of the nursing home, these concepts are brought to life and made real through the practices of staff. I deconstruct “homemaking” and reinvent the meaning and significance of homemaking as care. Using Reader’s Theatre as a presentational format, I discuss the qualities of the form and invite the reader to experience ‘home’ and ‘care’ as psychological constructs through storied text and in-role performance.
Maura McIntyre Ed.D.
Dr. Maura McIntyre is a SSHRC post doctoral fellow at The Centre for Arts Informed Research in the Department of Adult Education, Community Development and Counselling Psychology, Ontario Institute for Studies in Education (OISE) University of Toronto. The substantive focus of her research is Alzheimer's Disease, specifically the psychosocial dimensions of care and caregiving, and the contexts in which lives with dementia are lived. Current explorations of alterative research processes and forms of representations include: three dimensional installation art, photonarrative, and performance.
Research as Advocacy Work
My broad intention of making nursing homes and the people who live and work in them more accessible, more understandable and more inviting to family caregivers and the general public identifies my research as advocacy work. My research is specifically about staff, who they are as people, and what they can teach us about the place and people of nursing homes. In celebrating nursing home workers as people, I also promote the act of giving care, as a worthy activity. In order to best render the research results and to remain congruent with my commitment to accessibility, I use Reader's Theatre as a “data display strategy”, and presentational form (Donmoyer & Donmoyer, 2008).
"Home is Where the Heart is: A Reader's Theatre” involves a dramatic rendering of research results, and as such, is part of the growing genre of performance ethnography (Saldana, 2008; Denzin, 1997; Conquergood,1991; McCall, 2000; Gray & Sinding, 2002).
Within arts-informed research methodologies, reader’s theatre is considered “relatively conservative” because data collection methods do not typically involve processes related to the arts, but rather rely on the traditional data gathering techniques of in-depth interviews and participant observation (Donmoyer & Donmoyer, p. 210). Reader’s theatre is also relatively straightforward to present. In this case the reader’s theatre performance required no props, lighting or costumes, time-consuming memorization of lines, rehearsal or preparation. The organizer invited audience members to participate on the spot and volunteers were given reading parts or a script that they held and read. A reader’s theatre can also be rehearsed in advance or even performed by professional actors to enhance the quality of presentation.1
Despite the contrived nature of the pre-prepared script, reader’s theatre is thrilling because it’s live. Real people voicing the words of others maintains and enhances the human dimension of qualitative research in a way that simply gets lost when words are flattened and remain silent on the page. But while it invites an emotional response, reader’s theatre also requires members of the audience to think. Instead of sitting back and riding through a story arc from beginning through the middle, to conclusions at the end, in a reader’s theatre themes and ideas are presented that display a diversity of perspectives. Integrating emotion with intellect, reader’s theatre energizes the audience and provokes discussion about the issues and questions raised in the content of the work.
I chose reader’s theatre as a presentational form for a variety of reasons: it allowed me to remain true to the storied nature of what I had been told as a researcher and to use everyday, ordinary language. I wanted to honour the complexity and the diversity of the stories in the re-telling; and I wanted to create, through artistic form, the type of reflective conversation so many staff said they needed to have. In so doing the Reader’s Theatre format carries content and is able to render experientially, an important aspect of my research results.
1. Research Context and Method
1.1 Research Participants
1.2 Data Collection / Analysis Methods
Listening to the stories staff had to tell was an emotional experience. In conversation after conversation I was moved by how much of themselves staff put into their efforts to connect with residents. Such attentive and loving care felt like it required an analytical framework where this emotional quality could be preserved. Tom Kitwood's (1997) model of person-centred care, which describes the main psychological needs of a person with dementia as attachment, identity, occupation, comfort and inclusion, with love overarching all, provided just this framework. I proceeded with data analysis guided by this model; and clustered emergent themes (such as food) according to a framing question (see below). In constructing the reader’s theatre script I used attachment, identity, occupation, comfort and inclusion as themes within an organizing device for illumination as to how loving care was provided.
2. Institutional care and the meaning of home
In exploring how individual staff members make home in the institution, I deconstruct “homemaking” and reinvent the meaning and significance of homemaking as care. I invite the reader to experience ‘home’ and ‘care’ as psychological constructs through storied text and in-role performance. Direct quotations from staff and sections of storied text (taken and extrapolated from interview data) appear in italics. In the live presentation of this paper these parts are given to audience members to read aloud in a reader's theatre presentational format. (I hold numbered cards up and people chime in when it is their turn. A few readers for example #11, are given more than one segment to read aloud.) I function as the host or narrator reading the background text (non-italicized).
As audience members speak the words as staff they experience the narrative and the complexities of nursing home life. By joining in and celebrating the work of caregiving and honoring the capacity to care, we broaden and extend the community supporting people living lives with dementia. This process of deconstructing practices of homemaking through alternative forms allows my work to inform and educate diverse audiences--including the general public, family caregivers and academics alike--about the people who work in nursing homes and the complexity of making home in the institution.
Home Is Where The Heart is: A Reader's Theatre
3. Notions of House and Home
The word “house”, on the other hand, tends to refer less to feelings and qualities of experience and more to physical setting. Lawless and Pietropaulo (2002) describe “house as the structural form of a site that exists in real time and space and that is a relatively stable entity” (p.2). Our house is the roof over our head at any given time. It is the floorboards, the apartment, the dorm room, and the address. Our sense of home, on the other hand, “usually can be, but not always is, contained or enclosed by a house” (p.2). A home is in process, it is fluid not fixed, it can exist in a garden, in a person, or in a house, it involves coming and going and returning home once again. “Home represents an ideal place to experience our sense of intimacy” (Lawless & Pietropaulo, 2002, p.xi). We make and remake home thus imbuing our notions of home with significance and meaning.
Clare Cooper Marcus (1995) further distinguishes between the concepts of house and home. “House” she suggests, we use as a “symbol of our place in society” (p.12). Buying a house is a rite of passage that is associated with settling down, domesticity and a certain level of prosperity. How we give place meaning, Marcus suggests, comes from the interplay of our unconscious and conscious selves. While our houses contain representations of conscious self expression, that is they convey identity and say who we are through choice of colour, objects and furniture, our homes also contain expressions of the self that are unconscious. She suggests that the “soul-seeds” of feeling rooted in place have to do with emotional connection and are sown during the “innocent openness” of early childhood (Marcus, 1995, p.254). Later in life when we feel deeply “at home” we are reconnecting with that soul-nurturing place where we experience emotional attachment. Home is thus constructed as “a symbol of psychic wholeness” (Jung, 1969 in Marcus, 1995, p. xvi).
In keeping with this distinction between house and home I consider efforts that have to do with improving the physical plant of a place--things like wallpaper, knickknacks and furniture—to be quite different than acts of care made by people. While these “home improvements” are not without significance and in the nursing home environment affect the well being of staff, residents and visitors alike, their impact on the sense of home of the place pales in comparison to the impact of the presence of the people in that place.
As with our houses, a nursing home can perpetually renovate and decorate and the place can feel no more like a home than when the initiative to make “home improvements” began. As Gaston Bachelard (1958) describes, our need for home cannot be completely satisfied through cosmetic improvements because the “images of protected intimacy” of which notions of home are made resonant on a much deeper level (p.6). Throughout our lives “we comfort ourselves by reliving memories of protection” that we overlay with images of home (Bachelard, 1958, p.6).
3.1 Notions of Care and Love
When nursing home residents repeat the refrain “I want to go home”, or when people suffering from dementia engage in so-called “exit seeking” behavior, it is likely that they long for this psychological home, an ideal separate from time and space.
In The Philosophy of Existentialism (1956), Gabriel Marcel characterizes love and care together as “creative fidelity”, “attentive listening” and “meaningful solidarity”. Tom Kitwood (1997) names love as the main psychological need of people with dementia. In Kitwood’s model of person-centred care love is active; love is as love does. Loving care brings to the person with dementia opportunities for attachment, identity, inclusion, occupation and comfort (Kitwood, 1997). The boundaries between these needs overlap and combine, and, Kitwood points out, even in people who are independent and well, they are not necessarily in evidence most of the time (Kitwood, 1997). The meeting of even one of these needs, however, can advance the fulfillment of another.
3.2 Person-Centred Loving Care
Attachment is reciprocal.
The need to feel occupied in a way that is consistent with individual ability also begins very early in life and persists across the life span. Occupation, however, should not be confused with “busy work”. Occupation is tied to agency, and for people with dementia, agency is as linked to self-esteem as it is to people who are well (Kitwood, 1997).
The human need for inclusion, to feel a part of the social group, is also necessary for survival.
For people with dementia the awareness that they are different, and the realities of the social stigma to do with their condition, can lead to feelings of profound isolation and exclusion.
Individualized care plans for people with dementia often overlook social history and the person’s current needs for inclusion (Kitwood, 1997).
On the other hand, individual care plans have helped caregivers to address the ongoing need of people with dementia to experience identity. Understanding a person’s history and the capacity for empathy are the main ways we acknowledge each other as people and confer identity.
Finally, comfort “carries meanings of tenderness, closeness, the soothing of pain and sorrow, the calming of anxiety, [and] the feeling of security which comes from being close to another” (Kitwood, 1997, p. 81). The close association between being comforted and feeling comfortable and at home is implicit.
Kitwood suggests that through “the sensitive meeting of this cluster of needs”, loving care is expressed and the personhood of an individual with dementia is maintained (p.84). He distinguishes between “person-centred care”, which foregrounds the holistic needs of a person with dementia, and “task-centred care”, which focuses less on the person, and more on particular tasks (such as bathing or changing), that need to be accomplished (Kitwood, 1997).
Caring that is person centred requires a degree of personal presence, or in Nel Noddings terms, “engrossment” on the part of the one caring (Noddings, 1984, p.19). The one caring needs to place the person they are caring for in the centre of their sights, both literally and emotionally, in order to fully convey care. The “motivational displacement” required to accomplish this degree of presence is usually contrary to staff job descriptions that are task, rather than person centred (Noddings, 1984, p.25). Job descriptions tend to describe what the staff person must do, not how it would be helpful for them to be.
For people with dementia the process of making a nursing home feel like home is not characterized by a discrete period of adjustment. Indeed Shield (1988) suggests that even cognitively intact residents never really “settle in”, because nursing home life is an “endless transition” between adult life in the community and death to come” (p.184). The very notion of “settling in” is an illusion in the “liminality” that is the reality of nursing home life (Shield, 1988).
A more hopeful vision places opportunities to make home in the hands of people who give care. For people with dementia life is an ongoing process of trying to get their psychological needs met in the face of failing mental powers. People with dementia are particularly vulnerable to feeling homeless. Simply put, feeling less sure of who you are, or of where you belong, makes the longing for home both more pronounced and more profound. Unfortunately initiatives such as ‘wandering’ or ‘hoarding’ or ‘hovering’ that people with dementia take to express these needs, are often seen as symptoms or pathology. When individual staff persons are able to see beyond these behaviors to the human need being expressed, person centred care is provided. Care that addresses the fulfillment of the main psychological needs of people with dementia invokes the presence of home no matter where that caring occurs. Well or ill, when we feel deeply at home our psychological needs are in some important way being met.
Ultimately the people are the place, or as Bachelard (1958) poetically describes “all really inhabited space bears the essence of the notion of home” (p.5). While the sheer numbers of people at nursing homes challenge traditional notions of intimacy and of home, person centred care nurtures the closeness and connection of an ideal home.
Caring to Make Home
Each time I present my research as a Reader’s Theatre (in public libraries, at academic conferences and at forums of health care workers) a space is provided to recognize and honour the people who care for people living with dementia, and to consider the realities and possibilities of nursing home life. I always name and make explicit the tribute aspect of my work--in academic presentations and public venues alike. No one ever balks. People are always respectful of my intentions. Indeed they are quick to volunteer as readers. Reading aloud in a group brings out the very best in people. They speak well, with spirit, from the heart. When people honour my research participants and my writing with their voices, and speak from the position of nursing home workers, they make audible voices that don't often get widely heard. Joining together in what could be described as a political act, by the time the last voice is heard the atmosphere reverberates with a feeling of communion. A palette of tones resonates through the room. The experience begins to feel like more than the sum of its parts. Hope emerges. In light of the current and projected need for institutional care opportunities to create hope and inspiration to give care are critical. Simply put, we will be needing a new generation of people who care to make home.
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