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'A lifestyle coat-hanger': A phenomenological study of the meanings of artwork for women coping with chronic illness and disability

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Abstract

The purpose of this phenomenological enquiry was to explore the meanings and functions of art for a group of women living with disabling chronic illness. Participants were recruited on the basis that they considered artwork as central to their current well-being. Thirty women were interviewed and five submitted written narratives. Interpretative phenomenological analysis was carried out. About half of the participants had taken up their preferred artistic occupation since the onset of illness. Participants described their artwork as contributing to their health and well-being in many diverse ways. Art filled occupational voids, distracted thoughts away from illness, promoted the experience of flow and spontaneity, enabled the expression of grief, maintained a positive identity, and extended social networks. Its value was conceptualised by one participant as a 'lifestyle coat-hanger' organising numerous further roles and activities that gave purpose to life. Art was more than cathartic. It offered a versatile means of overcoming the restrictions imposed by illness on self and lifestyle, in many cases creating a more enriched lifestyle than before. The findings may encourage professionals working in health and rehabilitation settings to assist clients in identifying meaningful, creative occupations that are feasible within the limits imposed by illness or injury.
Reynolds, F. & Prior, S. (2003) 'A lifestyle coat-hanger': a phenomenological
study of the meanings of artwork for women coping with chronic illness and
disability. Disability and Rehabilitation, 25, (14), 785-794.
Purpose: The purpose of this phenomenological enquiry was to explore the meanings
and functions of art for a group of women living with disabling chronic illness.
Participants were recruited on the basis that they considered artwork as central to their
current well-being. Method: Thirty women were interviewed, and five submitted
written narratives. Interpretative phenomenological analysis was carried out. Results:
About half of the participants had taken up their preferred artistic occupation since the
onset of illness. Participants described their artwork as contributing to their health and
well-being in many diverse ways. Art filled occupational voids, distracted thoughts
away from illness, promoted the experience of flow and spontaneity, enabled the
expression of grief, maintained a positive identity, and extended social networks. Its
value was conceptualised by one participant as a ‘lifestyle coat-hanger’ organising
numerous further roles and activities that gave purpose to life. Art was more than
cathartic. It offered a versatile means of overcoming the restrictions imposed by
illness on self and lifestyle, in many cases creating a more enriched lifestyle than
before. Conclusion: The findings may encourage professionals working in health and
rehabilitation settings to assist clients in identifying meaningful, creative occupations
that are feasible within the limits imposed by illness or injury.
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‘A lifestyle coat-hanger’: a phenomenological study of the meanings of artwork
for women coping with chronic illness and disability
Introduction
Chronic disabling illness commonly disrupts roles and everyday occupations, leaving
the person vulnerable to depression, loss of identity and dissatisfaction with life (1).
For this study, a group of women were recruited who had taken up or expanded their
artistic occupations in response to changing health, and who considered such
occupations as central to their current well-being. The purpose of this
phenomenological enquiry was to explore the meanings and functions of art for these
women who were living in the context of a disabling chronic illness. To place a
boundary around the focus of enquiry, the participants in this study all engaged in textile
arts, including freestyle embroidery, tapestry, appliqué, quilting, and mixed media work.
This form of artwork was selected because it is quite commonly practised by women,
and yet is largely neglected in the occupational therapy and art therapy literature. Also,
participants in a previous study showed through their detailed written narratives that they
found it meaningful to interpret the role played by their artwork in coping with illness
(2). It seemed likely at the outset that focusing on the common experience of working in
fabrics and threads (to the exclusion of other art media) would assist the discovery of
shared themes in the participants' accounts.
A wide body of research evidence suggests that chronic disabling illness often has
deleterious effects on the person, not only through the physical discomfort and
specific symptoms that it imposes, but through its wider effects on self, identity and
lifestyle. For example, following on from stroke, individuals experience a split
between the perceived body with its unfamiliar dysfunctions, and their familiar
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identities (3). Charmaz (1983) conceptualised the effects of chronic illness on
identity in terms of a downward trajectory, as physical limitations increasingly
interfere with valued roles and occupations at work and at home. During a chronic
disabling illness, the person may feel increasingly isolated, depressed and helpless,
experiencing a sense of dislocation from the familiar past self and painfully uncertain
about the future. Bury (1982) referred to these encompassing effects of illness as a
‘biographical disruption’.
Loss of meaningful occupation during chronic illness seems to have a particularly
deleterious effect on well-being. For example, Jackson & Quaal (1991) noted that 50-
70% of people with multiple sclerosis become unemployed within a few years of
diagnosis. Early retirement among people with other forms of chronic illness such as
arthritis is also documented (7). Furthermore, financial difficulties, and loss of role
within the family may occur as a result of losing one’s job (8). Also, as self-esteem is
fostered by the praise and recognition of others, it can become progressively eroded if
the person is increasingly confined to the home and family.
Despite these very profound difficulties, some people do appear to regain an
acceptable quality of life in the context of illness and loss of function. The restoration
or discovery of meaningful occupation may have a vital role to play in influencing
subjective well-being and a positive identity (9-12). Return to work during chronic
illness may be psychologically beneficial, as noted among some men with HIV (13).
Some disabled people decide to do voluntary work with disadvantaged people, campaign
for the rights of disabled people, use their skills to raise money for charity, or make what
they regard to be a meaningful contribution in other ways (e.g. 14-15).
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Nevertheless, for those who retire prematurely as a result of illness, an additional
challenge arises of how to use extended leisure time productively (16). This may not be
an easy task as a not only physical limitations but transport difficulties, and financial
restrictions may restrict choice. Wikström, Isacsson & Jacobsson (2001) found that
people with rheumatoid arthritis reported a loss of about two thirds of their leisure
activities. A poor quality lifestyle played out in a ‘liminal’ space (14) may also
diminish well-being by increasing preoccupation with illness. People who manage to
preserve favoured leisure pursuits and self-care activities during illness tend to have
greater well-being (1, 16, 18). To illustrate, a small qualitative study (19), explored the
meanings of sea kayaking for three young people affected by spinal cord injury.
Participants regarded this leisure pursuit as helping them to focus on and
communicate an ‘able’ self, rather than being totally defined in terms of their
disability. They valued the novel, stimulating experiences involved in this pursuit, and
the opportunity to develop high level skills to cope with the challenges. The social
and environmental aspects of this leisure pursuit also contributed to their well-being.
Volunteering has also been found to relieve depression and to increase self-efficacy
for managing the pain of arthritis ( 20). Hence it is not only physical activity that has
an effect on well-being, but occupations that fill the void of retirement and give the
person a sense of making a worthwhile contribution, with a positive status in the
community.
There is much to learn about the meanings that the continued practice of proficient
physical, social and creative skills have for people living with frailty or chronic
illness. Engagement in the creative arts is a strategy that appears to offer many
psychological benefits for people living in the shadow of illness (21), being accessible
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to people with a wide range of physical impairments. However, the psychosocial
benefits of creative endeavours have received relatively little research attention,
outside of the art therapy literature. There are many ways in which the experience of
creativity during leisure may provide an antidote to the stresses of illness, enhancing
quality of life, and confirming an able identity. For example, creative products
provide a visible record of achievement, increasing self-efficacy. Art therapists regard
creative experiences as strengthening self-awareness and self-esteem, for example
through enabling self-expression and ‘voice’ (22). Creative engagement, particularly
in the visual arts, has been portrayed as offering a bridge between the conscious and
unconscious (23), and therefore helpful for working through complex, deep-seated or
‘unspeakable’ emotions such as grief, because the creative process is directed by
processes to which the person does not have full conscious access. This has particular
relevance to people who may be mourning the loss of functioning or identity that
physical illness or trauma has brought about (24).Emotionally charged feelings may
be poured into artwork in a contained, oblique manner, without the anxiety that a
direct confrontation would provoke (25).
Despite these various arguments and theoretical perspectives, few studies have
explored participants’ own interpretations of the personal meanings of artistic leisure
occupation, and the meanings that it holds for their well-being and capacity to cope
with illness. One exception was a study (26) interviewing community-dwelling older
people taking part in an art exhibition about the meanings of their artwork for coping
with ageing and increasing frailty. Participants described their artwork as maintaining
their involvement in the wider community. It also contributed to their ongoing personal
growth, through providing a productive focus to their lives, even in the face of physical
limitations.
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A few artists living with chronic illness have provided autobiographical accounts that
give insights into the meaning of art in their lives. For example, Longo-Muth took up
art once after leaving her teaching career because of multiple sclerosis. She described
her illness as encouraging her to re-prioritise, and to focus her limited energies on
developing her creativity (27).
In a highly relevant previous study (2), written accounts were collected from 35
women with long-term health problems who reflected on the importance of textile
artwork in their lives. More than half of the sample reported that they had immersed
themselves in art after the onset of illness. For this particular group, art had not been a
lifelong vocation. A common theme within the narratives was that a significant
turning point in regaining quality of life during illness occurred when women
discovered that art could be carried out with skill and satisfaction even within the
confines imposed by illness. The women often referred to their artwork as restoring a
familiar and satisfactory self-image, providing an able identity, and relieving
negative feelings such as anxiety or depression. Furthermore, their creative
occupations provided entry into new social networks, with the advantage that such
relationships were based on mutual interests rather than ‘caring’ and ‘illness’. Almost
all participants regarded creative pursuits as a form of distraction or relaxation, helping
to reduce feelings of depression or anxiety. Some of those who were facing a terminal
illness portrayed their creative work as a legacy to others. A further study of the role of
textile art in the lives of women experiencing depression (rather than physical illness)
discovered certain overlapping themes (28). Contrary to initial expectation, relatively
few participants in both studies described a lifelong interest in the arts. A large number
had turned to artwork as a means of coping with a period of hospitalisation, or with early
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retirement on health grounds. Whilst the participants offered many insights into the
functions that art played in the lives of people affected by chronic illness, the studies
were limited in working with written narratives that were necessarily briefer than
interview transcripts, and which presented information that could not be probed or
clarified. In this current study, in-depth interviews with a new sample were carried out
to further explore the meanings of art for women living in the context of chronic
illness. Women’s experiences were selected for study as many chronic illnesses such
as multiple sclerosis and rheumatoid arthritis affect more women than men. Gender
roles are distinctive, with disabled women regarding themselves as more subject to
social discrimination (29), perhaps because cultural ideals about female appearance
and roles are more prescriptive. The study was confined to the experiences of textile
artists not because the form of art was considered as gender appropriate or particularly
therapeutic, but simply to focus on a shared artistic medium.
The purpose of the study is to explore the meanings of art for women living in the
context of chronic disabling illness such as rheumatoid arthritis and multiple sclerosis,
from a phenomenological, 'insider' perspective. The findings may carry implications
for enabling interventions by occupational therapists, nurses, and counsellors, when
working with clients who have difficulties in regaining a satisfactory lifestyle
following the onset of chronic illness and disability.
Method:
The research reported here was guided by the principles of interpretative
phenomenological enquiry (IPA), as outlined by (30-31). This form of qualitative
research is increasingly popular, particularly in the UK, for analysing interview data
concerning experiences of health and illness (e.g. 32). The analytic approach is useful
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for uncovering the central, common themes in participants’ accounts of their
experiences, as well as for highlighting individual differences. The analytic method
assumes that verbal accounts provide genuine insights into lived experiences, and that
participants’ stories are not simply self-presentational devices. It shares with
American phenomenology the assumption that participants’ thoughts, reflections and
interpretations can be as much the subject matter of enquiry as their ‘raw’ sensory
experiences (33). Clearly all interviews are the co-product of interviewer and
interviewee, with both partners influencing the agenda and emphasis within the
accounts (34). Nevertheless, ‘realist’ assumptions that the interview data reveal
enduring cognitive and emotional responses, and convey credible insights into the
person’s lifestyle, were supported in this study by the abundant artwork on exhibition
in the participants’ homes.
Participants: Following ethical approval from the University ethics panel , thirty
women with relapsing-remitting or progressive forms of MS were recruited to
participate in the study. A further five preferred to provide lengthy written answers to
the interview questions. Studies employing IPA often have much smaller samples
(e.g. see reference 32), but given the diversity of health problems of the participants, it
was considered advantageous to gather as wide a variety of personal experiences as
possible. Invitations for study volunteers were displayed at local adult education
centres, on relevant craft web-sites, and in a national UK textile art magazine. Women
coping with long-term illness who regularly engaged in textile arts were requested to
join the study. Thirty nine initially volunteered, but four did not reply after receiving
the information sheet and consent form. Participants reported a range of chronic
illnesses, including multiple sclerosis, post-polio syndrome, arthritis, severe respiratory
problems, chronic fatigue syndrome and cancer. The age range was 29-72, with the
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majority aged between 48 and 65. They resided in many areas of the UK. All were
White. The majority were married, and had adult children living away from home.
Three participants had school-aged children. The majority had professional
qualifications, for example, in teaching, social work, physical therapy, nursing, and
graphic design. In line with previous evidence about the impact of chronic illness, almost
all had retired – three at the usual retirement age, but in other cases retirement had
occurred on the grounds of ill health. Everyone described their illness as beginning more
than two years previously confirming its chronic status. Almost all participants had taken
at least one course in one of the textile arts (e.g. adult education classes, City & Guilds
courses), and many had exhibited their work, at least locally.
Procedure: The in-depth interviews in most cases lasted for about one and a half to two
hours. Most were carried out in participants’ homes (except for one participant who was
interviewed in hospital at her own request, and for three who were interviewed by
telephone because of distance). Open questions, shown to the interviewee in advance,
were formulated to guide a focused conversation. The ‘grand tour’ opening question was
simply ‘tell me about yourself’ in order to encourage the participant to create her own
narrative. The interview explored the woman’s experience of illness and disability, the
process whereby her interest in textile arts had developed, and the part that artwork had
played in promoting well-being, positive self-image, and coping with change.
Data analysis: Data analysis for this paper was carried out jointly with the second
author, an occupational therapist with counselling qualifications, and experience in
both mental health and physical health settings. The distinctive yet complementary
professional backgrounds helped to ensure that the interpretation of themes was not
simply a manifestation of an individual researchers’ professional socialisation, and
aided the transparency of the coding process. The second author did not have
familiarity with the earlier study (2). This assisted the bracketing process, and the
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freshness with which the themes could be identified. The interviews were transcribed
fully, and were read and re-read to sensitise the authors to major themes. Based on the
guidelines for IPA (30-31), three long, rich interview transcripts were initially
selected, provided by women living with different physical illnesses. The transcripts
were initially coded by each researcher independently to draw up a provisional list of
phenomenological themes, and to identify any the views and experiences shared
among participants. Brief descriptive codes were annotated on each transcript, and
after much immersion in the data, these were grouped into broader interpretative
themes. The themes were checked and added to, during subsequent analysis of the
remaining transcripts. Particular attention was given to the themes that the
interviewees had validated at the time of interview, when their views had been
summarised and reflected by the interviewer.
Results:
Artwork held a number of different meanings for participants, and these are
summarised in Table 1.
Insert Table 1 here……….
The various themes were arrayed along a dimension, with some relating more
strongly to the experience of coping with the specifics of illness and losses (such as
pain, and empty time), whilst others seemed to make a greater contribution to living a
full and satisfactory life in the context of an enduring illness (such as expanding social
networks and widening horizons). Artistic occupations clearly held many therapeutic
benefits, addressing the dual tasks that people face when diagnosed with a chronic
illness, namely to manage the limitations and discomfort of illness, and to build a
10
‘normal’, satisfying life that breaks out of the confines imposed by illness (35). The
themes will be further described and illustrated with quotations from the interviews.
Distracting thoughts away from illness
Particularly in the early stages of illness, for example around the time of initial
diagnosis, hospitalisation or treatment, most participants reported being very
preoccupied with anxiety about their health, and their future. Such worries were
particularly vivid for women diagnosed with cancer, or other life-threatening
conditions. Many sought refuge in an absorbing occupation at that time. In some
cases, long-standing interests in textile art were drawn on, but others seemed almost
by accident to encounter the value of textile art for distracting their thoughts away
from illness. Even quite repetitive forms of stitching were effective for focusing
attention, and for providing some relief from the otherwise constant worry about
health. Textile art provided a means of coping with overwhelming emotions, not by
denial, but by providing a positive alternative focus for attention.
A participant with multiple sclerosis explained how art helped to distract her thoughts
away from her discomforting symptoms:
When you’re working creatively, you’re not thinking about things that hurt, or
pains, or aching, spasms, or whatever, or your head spinning as you go dizzy,
all the things you get, incontinence, the nasty things that happen (Sue)
Expressing grief
Strong feelings of loss, as well as worry, often preoccupied participants in the early
stages of illness and disability. Artwork was felt by some to provide an avenue
11
through which to express their complex feelings. However, almost every participant
who poured her feelings of anger or sadness into her artwork did so without much
awareness of the process at the time. Such participants mostly only recognised the
cathartic nature of their early artwork considerably later in the adjustment process.
For example, a participant who had gone through chemotherapy treatment for breast
cancer described the grief that she had expressed in her artwork at that time:
When I look back now, I did the most gruesome, scary drawings…obviously
that was how I was feeling inside I presume (Joyce)
The theme of symbolic transformation of feelings about illness through art is more
fully developed in (36)
Filling an occupational void
For almost every participant in the study, poor health had led to retirement on health
grounds, either directly because of mobility problems, pain and so on, or because
illness had brought about a re-evaluation of priorities. Even those who felt that they
had made a voluntary decision to retire encountered difficulties in using time
productively, and those who felt their retirement was enforced faced an even greater
sense of dislocation. Art provided a means to fill the occupational void with
satisfying, creative activity, paving the way for a positive re-evaluation of lifestyle,
and self-image. The various functions played by art were often inter-linked. For
example, by filling time productively, participants no longer focused obsessively on
illness. Some felt that not only had their mental health improved as a consequence,
but that their physical health had also benefited.
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For example, the participant with multiple sclerosis (quoted previously) recounted the
voids in her lifestyle that appeared as her functioning deteriorated, culminating in
early retirement from work just as her daughters were leaving home. Immersion in
textile art helped to fill these voids:
I was totally absorbed in my family, my job, really absorbed in it…We used to
do an awful lot of walking, which I miss…so it’s channelling this energy into
something new.’ (Sue)
Increasing choice and control
Illness is often experienced as taking away control and choice, placing burdens upon
the person that are additional to symptoms and physical discomfort. Whilst
participants generally acknowledged that they had limited direct control over their
health (for example, in multiple sclerosis, or in cancer), they found solace and positive
joy in the control that they could exercise over their creative products, and in the
additional creative activities that they participated in, such as courses and exhibitions.
This seemed to provide a psychological antidote to the helplessness and ‘victim-hood’
commonly induced by illness. One participant with a neurological illness explained:
{Art} is a great thing for me to be able to do, because I get quite depressed not
being able to do things, but … it’s something that I can do while I’m sitting
here feeling lousy, it’s a real achievement, it really perks me up. Yes, it is,
very important. I mean that together with my sort of painting and drawing,
that’s what keeps me going, really (Lilith)
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Increasing present-moment awareness
Some women noted that since immersing themselves in creative occupation that they
had developed more aesthetic awareness. This encouraged them to be appreciative of
their surroundings, even in mundane situations, and increased their attention to
colours and designs, even in everyday objects. As a consequence, they focused less
often upon their ill-health. When not directly engaged in artwork, their thoughts often
turned to the planning of designs for their next project, taking stimulus from the local
surroundings. The development of present-moment awareness not only helped to
distract thoughts away from illness or worries about the future, but sharpened
perceptions and enriched the quality of everyday experience. A participant with
metastatic breast cancer described with enthusiasm the pleasure she gained from
being attentive to her surroundings:
I’m very observant...when I’m sitting on the beach, the pebbles aren’t all the
same colour. I'll think that bit of rusty chain against that grey stonework is an
interesting colour (Christine)
Enabling the experience of flow and spontaneity
Every participant talked about the pleasure that she experienced in working creatively,
whether in planning designs, or carrying out her artwork. Some of the pleasure was
associated with being spontaneous, that is, enacting the plans and ideas that the
woman had in mind for her artwork, and in making fresh decisions along the way.
Such experiences of spontaneity may be interpreted as providing another antidote to
the experience of chronic illness. Illness, for many participants, had made travel
outside the home painful, effortful, or almost impossible. The contrasting experience
of freedom that was gained from being able to pursue goals successfully in artwork
was highly valued. A participant who used a wheelchair as a result of multiple
14
sclerosis conveyed the sense of freedom that she gained through designing and
machine stitching her artwork:
The spontaneity ..is what sees me through the bad times, because as it flows
through me...there’s no restrictions…it’s endless, the only restriction is your
imagination’ (Sue)
Some participants seemed to describe an experience akin to ‘flow’ (37), which has
been conceptualised as occurring when the person uses high level skills effectively to
cope with meaningful challenges and to pursue clear goals. Flow is an experience akin
to an adventure, and the satisfaction that is gained from successfully reaching goals
and overcoming obstacles along the way, provides self-esteem. The engagement in
flow should not only be considered in narrow terms as contributing to coping to
illness. Whilst it provided another antidote to loss and limitation, it had a wider role in
enabling a positive quality of life. Flow experiences were not common in the early
stages when skills for textile art were being mastered. Some women described the
initially rather tedious and repetitive practice of certain skills in order to master them.
However, once equipped with more advanced techniques, the woman gained the
power to reach a high standard, and enjoyed the sense of achievement gained. Most of
the participants – even those with marked mobility problems - had attended at least
one course in embroidery, or other form of textile art, which testifies to the
satisfaction derived from learning and mastering skills.
Revising priorities
A further theme detected in many participants’ accounts was that the discovery of art
as a meaningful occupation in illness had encouraged the revision of priorities in their
15
lives as a whole. This occurred on many levels. Some found that they needed to give
less attention to pursuing the previously valued goals that were being threatened by
illness, such as maintaining their careers. Instead, they gave themselves 'permission'
to immerse themselves in creative occupations. It has been noticed in previous
research that illness is sometimes experienced as a positive catalyst for lifestyle and
identity change. This study indicates that for some participants, it was not illness per
se that catalysed change, but the discovery that personal energy and commitment
could be channelled into a meaningful creative occupation in the aftermath of illness.
A participant who had given up a valued career in the health service after struggling
with chronic fatigue syndrome for many months, described her strategies of resisting
social pressures to take on too many responsibilities, once she had decided to re-
prioritise her activities:
I had actually had a responsible job before and I could still do it, my talent
hasn’t gone just because I’m not working any more …I have to watch myself
because I did all those things before, that I don’t take on too many
{responsibilities} because when you’re at home people think you’ve got lots
of time, you can do it, and because I don’t look ill the majority of the time,
people assume you’re fine, they forget actually this person is ill. And then I
shock them by appearing and looking dreadful. In the last four years, it’s
gradually built up so that my whole life now rotates around the textile arts
{Lydia}
With revised priorities, came new pleasures, skills, and future plans. Life seemed less
circumscribed by illness, uncertainty and limitation. The possibility arose of further
positive benefits, as described next.
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Facilitating joy, humour and other positive emotions
Illness is generally a joyless experience, and indeed many participants vividly
described the pain and outright horror of their first encounters (for example with
discovering a suspicious lump or with the chemotherapy that followed). The positive
pleasures of artwork provided much relief from negative emotions, and perhaps
signifying this relief, many narratives in which participants described discovering
textile art were punctuated with humour and laughter (38). One participant taking
morphine to control the chronic pain of severe rheumatoid arthritis described the
powerful, positive experience that she gained through her work:
My biggest inspiration is nature. A lot of the sea, rocks and flowers and things.
Often when we go to Aberdovey I sit on the beach and George walks the dogs
and picks me up on the way back. So I get the chance to photograph and draw.
I would say really that nature is my biggest inspiration for me personally. …We
had some poppies in the garden, the ones with the very shreddy petals and they
were such wonderful colours and I thought what can I do to preserve these? So
I actually ended up bonding them onto fabric and when I’d done that, it looked
like a fire. So I then layered more fabric over and machine embroidered it and
turned it into a forest fire I did some blackened trees on it. This thing was
very sort of ‘Wow, look at that!’ because it was red and black. Everything else
in the exhibition was beautiful but nothing that was remotely like that…because
it was so different and bold (Shirley).
Further pleasure was derived from participating in courses, exhibitions, and the
cameraderie of fellow needlework practitioners. Even trials and ‘failures’ – when
newly tried techniques did not produce the results being aimed for – could provide
17
relief from the stress of illness. Unlike illness, artistic failures could always be
recuperated from, and in any case enriched daily life with learning opportunities.
Restoring a positive self-image
Illness has been represented as a potential master status (39) and indeed this seems to
encapsulate how many participants first felt at the outset. Loss of career, difficulties in
performing important roles such as being a ‘good’ mother to children, and awareness
of an uncertain future, all tended to dismantle the familiar sense of self. For many
participants, textile art was described as restoring self-esteem, through for example,
personal satisfaction with artistic products, as well as the positive feedback that others
provided. The woman’s former sense of agency and capability were restored through
her artwork, enabling some re-connection with valued aspects of her former self.
Moreover, her artwork provided others with evidence of her ability, enabling
relationships to be developed on that basis rather than being focused on her illness or
physical limitations. This theme will be described in more detail next. One participant
with a neurological problem said:
It’s a horrible feeling that you can’t achieve anything. Obviously I’m not able
to work at the moment and I can do things like this {hand-made cushion
covers and bedspreads} … things that are just for me. I find that really
important. I think, because I just do it for myself, I don’t do it for anybody
else, and it’s really important for me to do good things for myself, you know,
to keep my self esteem up, to treat myself well. So, if I do something that
makes my surroundings beautiful, that’s really, really important to me. You
know, I get a lot out of that (Lilith)
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Building new social relationships
It is well recognised that people with chronic illness cope better if they have good
social support. It has also been observed that social networks tend to shrink in
chronic illness (e.g. 40) The participants in this study described experiences counter
to this trend. Almost all described meeting people through their artwork – whether
neighbours who shared their interests, women attending local meetings of the
Embroiderers’ Guild, fellow students on courses, and people visiting textile art
exhibitions. Moreover, these new relationships were based on mutual interests rather
than issues connected with illness or caring. Whilst the friends and colleagues who
were met in this way sometimes offered support with aspects of the illness or its
effects (e.g. pushing a wheelchair around an exhibition), they also helped the woman
to focus on shared interests rather than her illness, thereby improving her quality of
life, and positive sense of self. A participant who had fulfilled a lifelong ambition by
enrolling on a fine arts course following medical retirement after 38 years in the
health service said:
I just love being with younger people, there’s a group of about 30 on the
foundation {fine arts} course, they’re just absolutely lovely to be with, I just
love it, I mean they’re so daring with their art-work, they just do it, and I’m
really enjoying being with them, and I’ve met other people along the way as
well, and so it’s been a good move really … I feel I’ve ‘come home’ in a way,
I can talk about things I want to talk about (Joyce)
Contributing to others
Linked with the previous theme, artwork was seen as maintaining well-being through
enabling participants to make a contribution to others, whether through hand-made
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gifts, assistance with sewing projects, or fund-raising for charity. Some commented
on how they reciprocated the help given by others with artistic gifts, and thereby
maintained mutuality in their relationships. Positive satisfaction, self-efficacy and
self-esteem were derived from the experience of contributing to the well-being of
others.
I find doing the embroidery gives you a little bit of dignity because I feel I can
give back because I don’t want to keep taking from life. I want to give as well
(Elaine, with multiple sclerosis)
Widening horizons – embracing new activities and making future plans
Illness creates uncertainty about the future, and can leave the person stranded in the
‘empty present’ (41). Many participants seemed to resist this effect, referring to their
artwork as giving them a positive sense of future. Their plans for further art projects
helped to increase their determination to cope with present ill-health and maximise
recovery. Having an ongoing project seemed to some to almost ‘guarantee’ their
survival. Future plans established hope. This future-orientation did not simply arise
out of any long-standing or dispositional optimism as many participants described
themselves as deeply uncertain or depressed about their futures at an earlier time in
their illness. Immersion in artwork seemed to have provided a turning point in facing
the future, through setting up projects with short-range and long-range goals. Such
goals and prospects were very life-affirming and helped the woman to focus on the
gains in her life, rather than the losses induced by illness. Positive growth and
transformation had been made possible. In illustration, one participant in her late 60’s
who had rheumatoid arthritis, a mastectomy, and severe osteoporosis resulting in
20
difficulties even leaving her house, described some of the activities that enriched her
life:
It {quality of life} is excellent, absolutely excellent. I could make a very good
case for it being bleak, very bleak, but I have chosen to turn it around and in
fact it’s not bleak at all, it’s just absolutely wonderful. I haven’t really got the
time to do all the wonderful things that I’ve got planned, all the things I’ve
started, all the projects, all the books, all the things I’ve listed I might do. I’ve
made it a very, very enjoyable life. …about 90%. I do read a lot, and I do like
to think that I write a little bit, nothing very much in the way of being
published, a few poems… but I read, I write, I sew, I do so many things really,
yes…The list is endless really. I’m doing a very large mirror surround, with
an angel at the top… I’m doing freestyle canvas work, a map of the UK. …
I’ve put everything in it, bits of silk, beads, buttons, it’s quite lovely actually,
even though I say so myself (laughs) My latest thing is beadwork at the
moment. I also belong to a bead-workers guild, I forgot to mention that, and a
friend took me to Coventry in May for a big weekend bonanza. And when I
was there I was asked to do an article for the bead workers guild journal
(Bridget)
A summary theme: Art as a lifestyle coat-hanger
Many studies adopting IPA search for a central theme. The analysis showed that
artistic involvement had many meanings for each participant, and clearly provided a
versatile means of living with chronic illness, and maintaining well-being. One
participant (with rheumatoid arthritis, hip replacement and recent experience of
breast cancer) summarised the meaning that art had for her, using the metaphor of a
21
‘lifestyle coat-hanger’ upon which many other activities could be hooked to fashion a
‘normal’, satisfying life. This seemed to provide a vivid label for the central theme:
Art blocks out sad thoughts or frightening thoughts and scary bits, you know,
but it also moves you on. It got me going to exhibitions in London,
impressionists and that sort of thing, absolutely wow, and you go home and
you think I could do that, it’s only brush strokes, and you go home and it looks
like the dog’s dinner (laughs) but it’s brilliant just to try that. …{I was so
proud} I went up there on my own, it wasn’t long after my radiotherapy had
finished, and it was absolutely wonderful… it was a mix of inspiration and
somewhere to go, all the lifestyle coathangers if you like, to hang your life on
to (pause) and for me that was actually quite important. And I think it is ill-
health or adverse things that make you look at creative things in a different
light, they are absolutely essential. I think without it, it would have been
harder to get back to the level of health that I’ve got to (Jane).
Discussion
In researching art-as-therapy, art therapists have illuminated a number of benefits of
art for people living with chronic illness, particularly focusing on self-expression and
catharsis. This study has illuminated a wide range of further meanings within the
artwork experience when taken up as a leisure – rather than therapy - occupation. In
some ways, artistic occupation helped participants to cope with the restrictions
imposed by illness. But art also provided a means of positively enhancing the quality
of life, for example through extending social networks and setting up future goals.
22
The importance of having goals and hope for the future has been noted in previous
studies of people with disabilities(35, 42).
Some of the psychosocial benefits described by participants may be particular to
artwork (eg the means of expressing grief) but it is possible that many similar life-
affirming experiences may be gained via quite different forms of personally valued
activities and projects (e.g. gardening, volunteering). The pleasure of making a
contribution to others, and filling occupational voids has for example been noted in a
sample of volunteer workers with arthritis (20). To what extent any personally valued
occupation - whether creative, social, or physical - has common life-enhancing
elements needs further research. A reconstituted sense of self among people with
disability has been presented as dependent upon maintaining hope for the future,
regaining personal control, positive social support, and meaningful engagement with
life, in a study of spirituality in disability and chronic illness (42). These overlapping
themes provide some confidence in the experiences that have been identified as
making a positive difference to quality of life and self-image in illness.
The in-depth interviews confirmed some of the insights already gained from a
thematic analysis of written narratives (2). The previous study uncovered a number of
therapeutic experiences within textile art such as the preservation or regaining of a
satisfactory self-image, distraction from worry , positive enjoyment, maintaining and
extending social networks, contributing to others, filling an occupational void through
productive use of time and coping with an uncertain future. The current study offered
some validation of the previously established findings and gathered more detailed
insights about each one of these areas of experience. Furthermore, interviews
provided new insights into the ways in which artistic occupation assisted the
23
experience of grieving, flow, the revision of priorities, and the intensification of
present-moment awareness. The former study was guided by a stress-coping
framework (43), and therefore was confined to theorising about the relevance of
artistic occupation specifically for managing chronic illness, and dealing with the
threats and losses involved. This phenomenological enquiry has not only uncovered
more detail about the meanings of art for women living with chronic illness, but
suggests that coping with illness is only one aspect of concern to those affected. The
other equally important task is to fashion a full and satisfying life, with integrity, self-
esteem, positive relationships and so on. Art is not a simple uni-dimensional activity,
but represents a ‘lifestyle coat-hanger’ upon which other life affirming activities,
including educational courses, charity work and travel, can be hooked.
It is being increasingly recognised in the chronic illness and disability literature that
some people engage in transformational coping and growth, as a result of illness.
Progressive narratives (in which people describe positive outcomes from negative life
events) and ‘benefit-finding’ have been noted among chronically ill people, even
among those with deteriorating conditions such as those with multiple sclerosis (44-
45). This study provides further illumination of the process whereby illness may have
positive consequences. People who are fortunate enough – whether by serendipity or
planning – to discover a fulfilling occupation that enables self-expression, personal
development and mutual social relationships, may understandably believe that illness
has brought some gains into their lives.
Nevertheless, even with their immersion in artwork, the participants’ lives were not
without difficulties . Ongoing mobility problems, pain and anxiety about the future
(e.g. the possibility of the return of cancer), continued to frustrate and sadden
24
participants at least from time to time. Some women still felt unsure about their future
roles (e.g. whether they would be able to return to a valued career if their condition
improved) and were concerned about the social image that they presented to others.
This finding corroborates certain previous observations that people can experience a
complex mix of positive and negative responses to adverse life events (46), and that in
illness, a normal biography can co-exist with the experience of biographical
disruption (47).
Clearly the study has limitations. The participants tended to be drawn from a fairly
narrow social class, being mostly professional, well qualified women. They may have
had particular resources and skills enabling greater choice over daily occupations.
They were White and therefore did not represent the full diversity of women in the
UK coping with long-term health problems. Their particular cultural background may
have been relevant to their approach to managing life with a long-term health
problem, and this needs further enquiry. It remains unclear how personality and
childhood experiences, as well as current social context, assisted the women in coping
with illness and in choosing to focus on art in their daily lives. Also, participants were
living with a wide range of different illnesses, and further enquiry is needed into
whether art has distinctive meanings for women facing life-threatening, or particularly
painful, conditions. None had profound impairments as can be seen following stroke
or spinal cord injury.
Caution is also needed in interpreting the verbal accounts. As interviews are
inevitably a co-production of interviewer and interviewee, it is possible that
participants framed their answers in ways that they thought the interviewer ‘wanted’.
25
Nevertheless, some confidence is warranted that participants’ views were not simply
self-presentational devices, as the women showed portfolios of their artwork in their
homes, and in one case, a local exhibition. Also the themes presented appeared in
many participants’ accounts, giving some confidence in certain shared aspects of the
lived experience.
Further enquiry is recommended into the role of creative arts for people coping with
long-term illness and also the health problems associated with ageing. It is important
to examine whether any of the meanings of art located in this study are particular to
textile art. The findings reveal women’s resourcefulness in living with illness and
regaining well-being through meaningful artistic occupations. Health professionals,
including occupational therapists, counsellors, and nurses, might give more attention
to the power of creative pursuits for rebuilding lives blighted by disabling illness, and
for fostering the short-term and long-term goals that help individuals resist
depression. Creative occupations may provide a sense of future, social contacts, and
an enjoyable means of filling occupational voids. Although the health service all too
often focuses narrowly on physical rehabilitation, a more holistic strategy for re-
building lives and identities is called for. As one participant with arthritis who had
recently recovered from a hip replacement argued:
There was never, and I think it was slightly disappointing, there’s never ever
been any lifestyle advice that I have ever been given, by consultants or
rheumatologists, or anybody, which I think is quite disappointing. I think if
you’ve got rheumatoid arthritis or any disease that makes you feel like death
part of the time, or really hurting, or on a lot of tablets, you need some sort of
26
advice you can have. … when you’ve got arthritis you’re not made aware
enough that the lifestyle thing is as important as the pills.
Lifestyle choices and meaningful occupations may be as important to quality of life in
illness as specific illness-management strategies. Further enquiry into disabled
people’s positive occupational strategies is recommended.
Acknowledgements:
With grateful thanks to the Arts & Humanities Research Board, UK, for its financial support. This
paper extends a presentation given to the Conference on Interpretative Phenomenological Analysis, at
University College London, July 2002.
27
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Table 1: Meanings of art for women living with chronic illness – key themes
Coping with illness – focus on loss
distracting thoughts from illness
expressing grief
filling an occupational void
increasing choice and control - challenging victim status
increasing mindfulness/awareness
enabling the revising of priorities
enabling flow and spontaneity
facilitating humour, joy, positive emotions
restoring a positive self-image
building new social relationships
contributing to others and making a difference
widening horizons – new activities and future plans
Living with illness – focus on gain
33
... Specifically, the products of making were testimony to the skills of the maker which counteracted feelings of worthlessness imposed through chronic illness (Reynolds et al. 2009). Finished products appeared extremely important as they testified skilled actions and abilities, especially when physical capacity or mental health was compromised (Hunt et al. 2014, Kelly et al. 2012, Reynolds 2003, Stickley et al. 2007, Reynolds and Prior 2003. To produce useful and aesthetically pleasing products which makers connected to a specific time, elicited warm and pleasing feelings which were related to well-being (Pöllänen 2015b). ...
... This contradicts the advice advocated within occupational therapy literature to only use activities that already hold meaning to an individual. Potentially this might relate to the loss of role that often accompanies diagnosis with a chronic condition the void of which can be filled with participation in craft (Hunt et al. 2014, Reynolds and Prior 2003, Reynolds et al. 2009 or as a surrogate for a previous profession (Hunt et al. 2014). People described that through loss of their work role they entered a process of reframing their leisure pursuits as they began to accept the limitations of living with a chronic illness. ...
... The connection between making and identity appears significant in relation to providing an identity outside of pathology, the person that was there before and still exists (la Cour et al. 2005, Reynolds 2007, Spandler 2007. Craft provided an arena which protected and promoted identity where interests, values and personal identity outside illness could be developed and expressed (Pöllänen 2013, Reynolds and Prior 2003, Reyolds et al. 2008). More recently, research has suggested that the potential in crafts to express identity outside of life roles was extremely important (Clarke 2019). ...
Thesis
Full-text available
This research evolved from a perceived need within occupational therapy to better understand the therapeutic potential of specific craft activities, to create evidence for reviving their use within contemporary practice. Historically, it was observed that such activities enhanced health but research showing the mechanism was lacking and so their use largely fell out of favour within the profession. With current interest on exploration of the influence of arts on health the investigation focused on embroidering as a contemporary but under-investigated craft. The research question aimed to establish how embroidering can influence meaningful change in relation to a person in the context of their everyday life. This qualitative narrative inquiry-based study was situated in the United Kingdom and draws on social-constructionist epistemology with a relativist ontology. Theoretical assumptions were further grounded on Occupational Science, occupational therapy as a complex intervention and narrative theory. Discursive data were gathered through unstructured interviews which included examination of embroideries, observation, participation in embroidering and visiting embroidery related events in partnership with five women who regularly embroidered. Data were transcribed verbatim and interpreted through narrative analysis. The findings suggest that embroidering can promote meaningful and purposeful change in a person's everyday life through an agential companionship involving body, mind and materials. This solitary and reciprocal relationship is intimate, situated, and develops over time and this is proposed as the means for therapeutic potential. In the development of such a close affiliation the person and product become inseparable. Entanglement transpires through deep and sustained engagement with tools and materials.
... Personal artwork has been examined both in the United States (Cohen, 2006) and in the UK (Reynolds & Prior, 2003;Reynolds, Lim, & Prior, 2008;Reynolds, Vivat, & Prior, 2011) as a creative activity. Art therapy has been found to be beneficial for older adults as it allows them to engage in a creative process, communicate with their peers, and express themselves (Johnson & Sullivan-Marx, 2006). ...
... Participation in creative artwork facilitated the feeling of joy and other positive emotions -"the positive pleasures of artwork provided much relief from negative emotions, and perhaps signifying this relief, many narratives in which participants described discovering textile art were punctuated with humour and laughter" (Reynolds, 2002;Reynolds & Prior, 2003, p. 17). Additionally, since having a chronic illness or disability is often an isolating experience, participating in artwork classes allowed older adults to build new social circles (through attending local meetings of the Embroiderers' Guild, textile art exhibitions) and meet people who shared similar interests (Reynolds & Prior, 2003). ...
Chapter
Full-text available
The focus of this chapter is on diverse forms of creative expression in old age using a life-course framework. We consider age-related changes in opportunities for and expressions of creativity. Social and environmental influences on late-life creative expression are explored. We link our understanding of late-life creativity to traditional aspects of creativity studies, including creative potential, eminent creativity, and everyday creativity. Consistent with our life-course orientation, we consider age-related changes and differences in the above forms of creativity. We review creativity-enhancing interventions in relation to everyday creativity. A major contribution of our work relates to focus on the use of proactive problem-solving strategies to address late-life challenges creatively. Novel solutions to normative stressors of aging pose exemplars of the value of late-life creativity. Creative problem solving is proposed as key to ensuring a meaningful and successful old age. https://www.cambridge.org/core/books/abs/cambridge-handbook-of-lifespan-development-of-creativity/many-faces-of-creativity-in-old-age/A3B29E40B28D02C4B6E90F07C453BFBE#
... Finally, the effects of creative training on the development of specific skills in people with ID have been previously investigated, showing promising results not only in terms of creative performance, but also in reducing dysfunctional behaviors (Malley, Dattilo, & Gast, 2002) and in improving self-expression and individual growth (Reynolds & Prior, 2003). However, although these studies are encouraging concerning the possibility of creating group activities that stimulate expressiveness, they are based primarily on artistic activities while, to the best of our knowledge, there are no studies of creative training based on cognitive stimulation. ...
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... There is, after all, a wealth of literature that recognizes the relationship between the creative arts and well-being, both physical and emotional (McMurray & Schwartz-Mirman, 2001;Melchionne, 2017;Mundet-Bolos et al., 2016;Reynolds, 2010;Reynolds & Prior, 2003;Stuckey & Nobel, 2010). For example, in terms of the visual arts (noting that creative arts may also encompass music, dance and writing amongst other forms of expression), there is recognition that self-expression through art may support the reconstruction (or construction) of a positive outlook after a cancer diagnosis (McMurray & Schwartz-Mirman, 2001;Reynolds & Lim, 2007). ...
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RESUMEN El objetivo del presente trabajo fue analizar la manera en que la pintura y la escultura fortalecen el au-tocontrol emocional en un adolescente con problemas de comportamiento, para crear un programa de intervención enfocado en gestionar las emociones del caso de estudio o de otras personas con comporta-mientos similares. Se utilizaron tres instrumentos: una entrevista dirigida al adolescente participante, otra entrevista para sus padres de familia y una ficha de observación, cuyos indicadores fueron tomados del DSM V, específicamente del Trastorno negativista desafiante. Los resultados permitieron evidenciar sínto-mas asociados a un bajo nivel de autocontrol emocional en el adolescente. Puesto que en la investigación bibliográfica se hallaron estudios sobre los beneficios del arte en la salud y en el bienestar psicológico, se concluye que la práctica de pintura y escultura contribuye en gran medida a la gestión adecuada de emo-ciones en una persona. En este marco, se propone un Plan de Intervención enfocado desde las artes plásticas, para el adolescente del estudio de caso. Palabras clave: : AUTOCONTROL EMOCIONAL, ARTES PLÁSTICAS, PINTURA, ESCULTURA, PROBLEMAS DEL COMPORTAMIENTO, ADOLESCENCIA. The aim of this work was to analyze the way in which painting and sculpture strengthen emotional self-control in an adolescent with behavioral problems in order to create an interventional program focused on managing the emotions of the case study or other people with similar behaviors. Three instruments were used: an interview directed at the participating adolescent, another interview with their parents, and an observation sheet whose indicators were taken from DSM V, specifically Oppositional Defiant Disorder. The results showed symptoms associated with a low level of emotional self-control in the adolescent. Given that studies on the benefits of art on health and psychological well-being were found in the bibliographic research, it is concluded that the practice of painting and sculpture contributes greatly to the proper management of emotions in a person. In this framework, an Intervention Plan focused on plastics arts is proposed for the adolescent in the case study.
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