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Caring For Insiderness'': Phenomenologically Informed Insights That Can Guide Practice
Caring For Insiderness'': Phenomenologically Informed Insights That Can Guide Practice
EMPIRICAL/THEORETICAL STUDY
Abstract
Understanding the ‘‘insider’’ perspective has been a pivotal strength of qualitative research. Further than this, within the
more applied fields in which the human activity of ‘‘caring’’ takes place, such understanding of ‘‘what it is like’’ for people
from within their lifeworlds has also been acknowledged as the foundational starting point in order for ‘‘care’’ to be caring.
But we believe that more attention needs to be paid to this foundational generic phenomenon: what it means to understand
the ‘‘insiderness’’ of another, but more importantly, how to act on this in caring ways. We call this human phenomenon
‘‘caring for insiderness.’’ Drawing on existing phenomenological studies of marginal caring situations at the limits of caring
capability, and through a process of phenomenologically oriented reflection, we interrogated some existential themes
implicit in these publications that could lead to deeper insights for both theoretical and applied purposes. The paper
provides direction for practices of caring by highlighting some dangers as well as some remedies along this path.
Key words: Caring, person centred, phenomenology, lifeworld, humanization, individualized care, reflective analysis
Tolstoy and Chekov were on a walk in the spring things are for the person.’’ However, we believe that
woods when they encountered a horse. Tolstoy more specific attention needs to be paid to this
began to describe how the horse would experience foundational phenomenon in relation to caring: what
the clouds, trees, smell of wet earth, flowers, sun. it means to understand the ‘‘insiderness’’ of another,
Chekov exclaimed that Tolstoy must have been a and more importantly, how to act on this in caring
horse in a previous life to know in such detail what ways. We call this phenomenon ‘‘caring for insider-
the horse would feel. Tolstoy laughed and said: ness.’’ There are many qualitative studies already in
‘No, but the day I came across my own inside, the public arena that, although not directly focusing
I came across everybody’s inside’. (Sutherland, on the phenomenon we name, could be harnessed and
2013, p. 30) reflected upon in order to deepen our understanding
of this concern. So we posed the question: In what
Understanding the ‘‘insider’’ perspective has been a
pivotal concern for any applied field where the ways can the findings of research help us in arriving
human activity of ‘‘caring’’ is important. Such at further useful insights that have implications for
understanding of ‘‘what it is like’’ for people from practice? In this paper, we turn to seven published
within their lifeworld has been particularly acknow- phenomenological studies with the following reflec-
ledged as a foundational starting point for health- tive question in mind: What does each study tell us
related caring (Toombs, 2002). Indeed, the notion of about the phenomenon of ‘‘caring for insiderness’’?.
appreciating or understanding a person’s ‘‘insider- We wanted to pay attention to some rich sources of
ness’’ has been cited as one of eight essential dimen- phenomenological research that already exist. This is
sions of what it takes to ‘‘humanise care’’ (Todres, not a systematic literature review but rather an
Galvin & Holloway, 2009, p. 3): ‘‘To be human is to analysis of a group of papers that served to reveal
live in a personal world that carries a sense of how some new depth and detail about ‘‘caring for
Correspondence: L. Todres, Bournemouth University, Royal London House, Christchurch Road, BH1 3LT, Bournemouth, United Kingdom.
E-mail: [email protected]
#2014 L. Todres et al. This is an Open Access article distributed under the terms of the Creative Commons CC-BY 4.0 License (http:// 1
creativecommons.org/licenses/by/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform,
and build upon the material for any purpose, even commercially, provided the original work is properly cited and states its license.
Citation: Int J Qualitative Stud Health Well-being 2014, 9: 21421 - http://dx.doi.org/10.3402/qhw.v9.21421
(page number not for citation purpose)
L. Todres et al.
insiderness.’’ We believe that there is not enough unpredictable. The authors of the study provide
reflection on the meaning and implication of what good descriptions of the professional carers’ under-
sometimes looks like unrelated studies, but which standable feelings of insecurity when there is such
can be meaningfully related to one another when an extreme lack of access to a coherent sense of the
one takes a fresh perspective and where one has a patients’ experience of life from the inside.
particular human phenomenon in mind. Within this The way that the professionals proceed is to
spirit, we chose seven articles that used a phenom- attempt to ‘‘use themselves’’ by exchanging ‘‘self ’’
enological approach to research and which focused with ‘‘other,’’ through a process of trying to imagine
on a range of issues about the challenges and di- what they would have said or done in a similar situa-
lemmas of caring in a variety of settings. We chose tion, and what they would have meant with similar
phenomenological research because we have found words and actions. This experience of reaching
that such studies usually express their findings in towards insiderness is ‘‘an attempt to make contact
ways that often connect to existential human themes to something within the patient that the professional
that far transcend the specific focus of the paper and carer can trust’’ (p. 518). In other words, it is a
are thus amenable to interrogation with a different search for some degree of ‘‘closeness’’ in the sense of
focus in mind. Such ‘‘amenability’’ of phenomen- trying to imaginatively contact the common human-
ological research to related existential interrogation ity between carer and cared for: ‘‘they seek some-
makes sense to us because of the epistemological thing within the patient to get in contact with’’ (p.
underpinning of phenomenological research that 520) and ‘‘they seek confirmation from the patient’’
acknowledges the ‘‘seamlessness’’ and ‘‘intercon- (p. 519). At the same time, there is always a certain
nectedness’’ of lifeworld phenomena. Further to distance for professional carers, in that they can
this, in our choice of papers, we were particularly never be sure that they have achieved a coherent
attracted to marginal caring situations at the limits of understanding of the confused other’s insiderness.
caring abilities. These extreme situations called our This experience therefore opens up a certain kind of
attention to the outer boundaries of what needs vulnerability in the professional carer which is un-
to be included within the phenomenon: ‘‘caring for avoidable because, in this situation, they have little
insiderness,’’ and as such, posed interesting challenges ‘‘knowing’’ to rely on, especially when they ‘‘fail to
for any situation in which an appreciation of another get close to the patient.’’ The study reveals differ-
person’s ‘‘insiderness’’ is approached. Regarding our ent possible pathways in response to this dilemma of
style of reflecting on the study, we engaged in such a ‘‘not knowing.’’ The first possibility is that the pro-
way as to become present to implicit meanings being fessional, in being excessively focused on worrying
revealed which we put into language. We now report about the safety of the person, attempts to gain
on a number of insights that emerged through the control in the encounter and intervene on the others
range of the chosen research studies. The studies are behalf in order to guide the patient towards a prede-
summarized in Table I. termined purpose. This predetermined purpose how-
ever cannot be said to be the patient’s purpose, but
rather the professional’s purpose. Such a pathway
Empirically informed insights into the
abandons a meaningful consideration of the insider-
phenomenon: ‘‘caring for insiderness’’
ness of the patient because of safety concerns. The
a) An extreme example of the receding depths of professional then gains a certain sense of personal
insiderness in a caring context: a meaning revealed security and a relief of their own anxiety, but this is
by professionals who cannot see a confused patients’ at the cost of losing the confused person’s purpose
insiderness. and of letting go of the attempt to reach towards the
Stenwall, Sandberg, Eriksdotter Jönhagen, and other’s insiderness in such difficult circumstances.
Fagerberg (2007) explored the professionals’ experi- Another nuance in response to not being able
ence of encountering older confused patients. Their to easily find the patient’s ‘‘insiderness’’ is what
study points to a particular nuance of insiderness, Stenwall et al. (2007) call ‘‘always being on guard.’’
which concerns the dilemma that a professional may In ‘‘always being on guard’’, the carers ‘‘feel respon-
experience when encountering a confused person. sible for the well-being of the patient and have to
Here, the professional is challenged by having to guard the patient against themselves’’ (p. 518). How-
open themselves to an experience of unfamiliarity. ever, this feeling of responsibility is an ambiguous
The challenge that this poses is how to reach and experience for the professional in that it is not
understand the confused patient’s ‘‘insiderness’’ without conflict. Such professionals report feeling
when this ‘‘insiderness’’ is so opaque or immedia- guilt and fear about taking so much responsibility in
tely unfamiliar to the professional. The confused such an interventionist way, especially when the
person’s actions are unforeseeable and their words patient is no longer in a confused state. They worry
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Citation: Int J Qualitative Stud Health Well-being 2014; 9: 21421 - http://dx.doi.org/10.3402/qhw.v9.21421
Table I. Summary of phenomenological studies.
Citation: Int J Qualitative Stud Health Well-being 2014; 9: 21421 - http://dx.doi.org/10.3402/qhw.v9.21421
An appreciation of insiderness
patient’s insiderness.
needs to be privileged
‘‘Insiderness’’
never fully feel sure or secure about successfully
achieving a sense of insiderness of the other. Thus,
personal ‘‘insiderness’’ always recedes from an-
other’s view. So, the issue for the professional carer
in this vulnerable situation of not knowing is that
they have to continually manage ‘‘the not knowing of
insiderness’’ and its on-going uncertainty. All they
have got is themselves trying to reach some sense of
+
phenomenology
phenomenology
Descriptive
The experience of
Nordgren et al.
(2009)
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Citation: Int J Qualitative Stud Health Well-being 2014; 9: 21421 - http://dx.doi.org/10.3402/qhw.v9.21421
Phenomenologically informed insights that can guide practice
by Lundqvist, Nilstun, and Dykes (2002). They of power that can easily be missed. If a professional
examine and illuminate mothers’ experiences and is not aware of the depth of the power they carry in
perceptions of the care provided by neonatal staff such marginal situations, such power can be highly
(nurses, midwives and physicians), where a baby had destructive.
died or where a baby’s survival was threatened. The
explicit focus by the authors of this study concerns c) An example of insiderness calling for understand-
how mothers felt both empowered and powerless at ing of unique existential concerns and meanings: a
different times. Their findings draw attention to the meaning revealed through women’s expressed needs
things neonatal staff do which make mothers feel em- of living with heart failure.
powered and conversely, the things that make mothers Nordgren, Asp, and Fagerberg (2008) aimed to
feel disempowered, discouraged and even violated. understand the meaning of support for women living
In relation to illuminating the phenomenon of with heart failure. The findings share some of the
insiderness, this study graphically illustrates how a essential meanings of the previous study, that is, that
professionals’ appreciation of a mother’s insiderness formal care can become excessively caught up in
can be very important in helping the mother feel routines, and that this can result in patients feeling
understood, thus significantly reducing mothers’ angry, sorrowful or despairing about the failure of
sense of isolation and disconnection. Conversely a the care regime meeting them as unique individuals
lack of appreciation of mothers’ insiderness can pro- with their own variable concerns and needs. In
foundly disempower them, leading to great iatrogenic relation to the phenomenon of caring for insider-
suffering. The value of this study for illuminating the ness, this study highlights how in an on-going life-
phenomenon of insiderness is in how it shows the threatening condition, an adequate understanding
pivotal role that power plays in facilitating or ob- of insiderness would focus on the experience of
structing the pathway towards a care for insiderness. existential uncertainty rather than just the details, for
When the mothers experienced a sense of recogni- example, symptoms, of the person’s illness. This
tion of their struggle from staff, mothers felt much study portrays how women living with heart failure
closer to them and this closeness comforted the in middle age emphasized a wish to be responded to
mothers. This experience made the mothers feel at a more existential level regarding the challenges of
more able to make decisions about their baby, which their illness and how this fitted into what it meant for
in turn enhanced and supported mothers’ confi- their major or minor life projects (‘‘being able to’’).
dence and a sense of being more in control of the At best, they were frustrated that support and infor-
situation. Again, as in previous examples, caring for mation was only directed to them in very general
insiderness does not depend on a detailed under- ways. They felt abandoned because the illness af-
standing of the persons’ situation or world but fected their whole life, but the professional focus was
rather on a non-judgemental, general ‘‘reaching out’’ only on part of their life. The women wanted a more
to them, without having to be asked. Here, the existential concern to be addressed, in which un-
mothers’ experience of a sense of benign closeness certainty was at the heart of the matter. They wanted
supported confidence. Within this marginal context, to discuss things like how to find balance in their
caring for insiderness is caring for what the mother is lives, in a context where their heart failure limits life
going through. This study also illuminates an inter- projects. They wanted a discussion about daily life.
esting variation by which mothers responded to their This study tells us about how an appreciation of
insiderness not being understood or recognized by a insiderness opens up the core issues to be responded
kind of rebellious ‘‘taking of things into their own to (in this case, living a life of uncertainty) rather
hands.’’ This is a kind of strength that these mothers than mere external ‘‘facts,’’ and why existential
achieved through facing not only the experience of issues need to be a crucial reference point if we
their suffering, but by doing this in the context of want care to truly meet a human being.
feeling unrecognized or ignored. In such moments
mothers (or patients in general) may ‘‘go with what d) An example of insiderness as a unique insistence
they want’’ and find other allies for example, a part- of the body: a meaning revealed by professionals
ner or husband who is able to support them. The over-focus on external and standardized protocols.
extreme marginal situation that this study focuses Norlyk and Harder (2009) describe the lived expe-
on, reveals the creative potential that can occur rience of early discharge from hospital after colon
when one’s insiderness is not recognized or under- surgery. Patients had participated in a fast track
stood, strengthening the persons’ autonomy, as well programme where they were discharged from hospi-
as the devastating potential of one’s insiderness not tal between 2 and 5 days after surgery. The authors
being recognized, leading to experiences of violation. were specifically interested in illuminating what it
So, such recognition or non-recognition has a depth was like to live through the recovery period in the
early days. In relation to the phenomenon of caring professionals if they as patients were not involved in
for insiderness, this study is revealing in that it a minimum of vital decisions; it is a balance.
highlights a marginal situation in which external
protocols are privileged over caring for insiderness e) An example of insiderness as an insistence to parti-
because of the perceived justification that it is what cipate in the world: a meaning revealed by aphasic
the marginal situation requires. patients not being able to express themselves in
In this example, as in other marginal situations, everyday language.
such as intensive care, where the person ‘‘hands Nystrom (2006) aimed to analyse the existential
over’’ their entire bodily care to another, the body’s consequences of aphasia and what it was like for
recovery is seen as a homogeneous process. That is, patients to struggle to regain the ability to com-
institutional expectations are based on an enactment municate. This paper has many important and
of recovery protocols that would work better if every- interesting themes, but we focus here on those
one was the same. Within such a regime ‘‘care’’ dimensions of the paper that add insights that are
contains an emphasis on rules that patients need to relevant to the meaning of caring for insiderness.
People experiencing aphasia become really worried
follow (must do’s). This tacit preference for every-
about being considered stupid by others. The study
one ‘‘being the same’’ highlights the absence of
graphically illustrates how, for these people, being
a particular meaning of ‘‘insiderness,’’ that is, the
aphasic is not only a humiliating experience but also
uniqueness and difference of each person’s body and
condemns them to a deep existential loneliness and
world. The study documents how patients lived a
even a sense of imprisonment. Although this group
certain tension between the rules that are part of the
of people share a sense of abandonment with people
postoperative care system and their own ‘‘insider
from the particular studies discussed previously that
experience’’ of what they felt they needed to recover.
focus on the experience of confused older people,
Post-operative discomfort created a dilemma for
there is an important distinction. It is clear from
patients: of following the professional’s advice re-
Nystrom’s study that the people living with aphasia
garding regimen objectives or responding to their
have great clarity about their insider world, which
own intuition of what could contribute to their
they would like to share and which they cannot.
comfort in a unique way. For example, unpleasant
There is a ‘‘shock’’ to this kind and level of exis-
symptoms made patients feel weak, yet hospital
tential loneliness, like being a ghost who is there but
norms and expectations often required them to be
who cannot participate. In relation to the meaning of
stronger than they could be when they were recovering.
caring for insiderness, this study highlights how
In the background, there is a strong desire to try and
one’s sense of one’s own insiderness can be very
comply with professional expectations, that they
coherent but is worth little if ‘‘it’’ can’t come outside.
be strong and co-operative. Part of the dilemma is
The patients’ sense of existential loneliness consti-
there are times when an external expectation is an
tutes a painful sensitivity that the health care system
important part of the patient’s recovery, and here
has abandoned them. This sense of existential lone-
they are required to have some faith in the profes-
liness is also heightened by their perception that
sional’s experience. Here they may be asked to exert
other people misunderstand their aphasia as an
some effort in ways that may go against their own
incapacity to think. Such perceived judgements
inner sense of what is comfortable. The authors
from others add a sense of a ‘‘loss of dignity’’ to
express one of the meanings of this as follows: ‘‘It
their existential aloneness.
took courage from the patients to ignore their body’s
The poignant dilemma experienced by this group
signs and have complete trust in the professional
can teach us something about how insiderness is
assurances that their body would not be overworked an important human essence, but can never move
by following the regime’’ (p. 176). But, on the con- alone, and always seeks to be in play with a partici-
trary, this external demand was often overdone. pation in ‘‘outsiderness’’ or otherness. Although
In relation to meaningful care, this study raises a some of the previously discussed studies may em-
very important question about the virtue of empow- phasize the importance of respecting the privacy and
ering ‘‘insiderness.’’ It illustrates how in some dignity of insiderness in some contexts this particu-
marginal situations where the insider perspective lar study indicates another ‘‘energy’’ of insiderness
cannot be privileged, even then, the experience of which is ‘‘to want to come out’’ and be understood
care would be improved by always including a pers- and therefore participate in-the-world-with-others.
pective which balances the external protocol with an
appreciation of unique insiderness. Patients want staff f) An extreme example of how the insistence of in-
to acknowledge their discomfort, to see that they siderness can even lead to violence if a sense of felt
are trying hard and want staff to believe in them. In isolation is neglected: a meaning revealed in the psy-
this study, patients felt that they could not trust chiatric care setting where patients become violent.
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Phenomenologically informed insights that can guide practice
Carlsson, Dahlberg, Ekebergh, and Dahlberg heartedness’’ and through lifeworld knowledge
(2004) focused on situations in which patients as an interpretive touchstone.
became violent within a psychiatric care setting
and the implications for professional caring. The ‘‘Insiderness’’ recedes from the view of the
authors of the study emphasize the tension between other
authentic personal care and detached care.
This study learnt from patients some important One of the central insights about the phenomenon of
things about the kind of encounter that would help caring for insiderness that has been revealed by the
them to avoid the desperation of violence. Patients analysis has to do with the challenge of the unfor-
experiencing such care depended on professionals eseeable encounter. The contributions of Levinas
showing themselves in human ways, actively engaged (1969) provide an ontological context for the depth
and affected and moved or touched by the suffering of such an unforeseeable encounter. In his work, he
of the patient. Here the patient also experienced a unfolds what he refers to as ‘‘the infinity of other-
ness.’’ One of the implications of this is that there is
respectfulness of their insiderness which included a
an epistemological limit to what we can know about
recognition and acceptance of the patient’s vulner-
any other person, and indeed if we were to prema-
abilities and shortcomings. The appreciation of
turely lurch towards ‘‘such knowing’’ we will have
insiderness has within it a concern for the well-being
breached an ethical calling that keeps the ‘‘infinity’’
of the patient and this constitutes a caring power.
of the other alive. Levinas refers to ‘‘the face’’ as a
Conversely when the patients experienced a certain metaphorical signification of the world of the other
detached instrumentality from professionals this that can never be summarized or reduced to some-
would result in feelings of insecurity, fragility, thing we assume to know: ‘‘The face resists my
vulnerability and abandonment. These feelings possession, resists my powers’’ (Levinas, 1969, p.
would feed into an already existing fear and sense 197). And further: ‘‘I can recognize the gaze of the
of violation. A patient expressed what it was like to stranger, the widow, and the orphan only in giving
be met in a cold and distant way: ‘‘my lasting and refusing; I am free to give or to refuse . . .’’
memory from these moments is the encounter with (Levinas, 1969, p. 77). The confused patient pre-
an expressionless blank face, with expressionless sents a particular example of the infinity of other-
cold eyes staring back at me’’ (p. 295). This is ‘‘the ness. We have seen how the professionals, if they are
face’’ in which the insiderness of the other has been unable to work with this existential limit, can close
abandoned. In the presence of such an encounter, down by either rushing for ways to control the other
patients reported feeling ‘‘reduced’’ to being a or alternatively towards a premature abandonment
patient and further to feeling degraded and un- of the other. Striving towards insiderness within the
worthy, helpless, disrespected, incapacitated and context of the infinity of otherness can only occur by
unimportant. The authors provide examples of the use of oneself rather than the application of
how such extreme feelings of desperation can lead already made knowledge. In other words it is only by
to episodes of violent reaction. This study therefore using oneself that one can make reflective decisions
bears testimony to how abandonment of insiderness in the moment. For the professionals such a ‘‘use of
can become a matter of felt psychological survival. oneself ’’ in the moment is full of vulnerability
because they are so uncertain about the insiderness
of the patient. This ‘‘existential given’’ (that insider-
Implications for practice ness always recedes from others so that it can never
In this section, we elaborate on the following three be fully grasped absolutely), poses a fundamental
insights that emerged from our consideration: question about the nature of what evidence could
mean in lifeworld-led care.
a) The importance of the understanding that
‘‘insiderness’’ always recedes from the view ‘‘Reaching towards’’ otherness as more
of the other so that it can never be grasped important than ‘‘knowing’’
absolutely.
The status of ‘‘evidence’’ is humbled by the unique
b) How ‘‘reaching towards’’ the ‘‘insiderness’’
situations of practice. In our conventional profes-
of another as a process and practice is often sional discourse on evidence-based practice, we
more important than ‘‘knowing’’ the details of believe that an unrealistic fantasy has been set up
someone’s ‘‘insiderness.’’ that privileges the discourse on evidence over a
c) That ‘‘caring for insiderness’’ calls for the discourse on understanding and judgement. The
complex use of self through ‘‘reflective open- process of ‘‘reaching towards’’ insiderness may be
more important than an accurate understanding of dence in a productive way or else can traumatize in a
what is in the insiderness (that is, the content of the destructive way. Carers who are attuned in an open-
knowledge that is found there). Thus, a reaching for hearted way manage the emotional tension within
insiderness is more of a productive direction in themselves between encouraging, or even challen-
practice rather than a fully achieved outcome. ging, independence and that of a nurturing ac-
Consistent with this insight, the findings of our ceptance which is non-demanding. The particular
review motivates us to suggest that the achievement emotional quality that underpins ‘‘reaching for
of understanding ‘‘insiderness’’ is always vulnerable insiderness’’ is one of patience and anticipation.
rather than something that can be achieved as a Meaningful caring for insiderness thus challenges
completed outcome: that ‘‘reaching towards’’ as a a carer to stretch towards ‘‘the wisdom of insecurity’’
process is more important that the achievement of (Watts, 2011). Reaching towards insiderness in-
‘‘knowing’’ as an outcome. By its very nature, caring volves the use of the self by carers in such a way as
for insiderness is always more intricate and more to ‘‘hang out’’ at the edge of their own levels of
specific than any generality, as it sits within the security. One needs to find this edge where one
uniqueness of the receding nature of insiderness neither completely gives up one’s desires for security,
(Gendlin, 1991; Polkinghorne, 2004). Although drawing on sources of knowing, but on the other
‘‘general understandings’’ may sensitize us for reach- hand stretches towards an open-minded questioning
ing towards insiderness, these general understand- in the freshness of the moment. This emotional
ings need to be bridled by the openness of practice capacity (Galvin & Todres, 2009) is particularly ger-
and by the many nuances that all encounters with mane to attending to the task of the receding nature
patients contributes. Such openness of practice is by of insiderness and for the care of this receding nature.
essence ‘‘always on the way’’ and is best defined by
the ‘‘energy’’ of ‘‘reaching towards’’ rather than an b) Lifeworld knowledge as an interpretive touch-
attitude which forecloses the complexity of its task. stone
The analysis in this paper suggests that there are a
The alternative: caring for insiderness through number of specific understandings that are impor-
the complex use of self tant when caring for the insiderness of another.
If this study has revealed insights which expose the . If a carer or professional is unable to specifically
vulnerability of sense-making in the unique encoun- understand the details of another’s world then it
ter, then the question arises: how can professionals is important to try to imaginatively understand
authentically care for insiderness given the existen- something more general as a focus, namely, the
tial limits we have been articulating. We propose two common humanity between them. This re-
ways: a) reflective openheartedness and b) lifeworld quires a shift in cognitive focus from the
knowledge as an interpretive touchstone. ‘‘other’’ in him or herself to an understanding
of what is between them at this moment. So for
a) Reflective openheartedness example, instead of imagining what the other
The analysis in this paper suggests a certain person is thinking, to rather shift focus to an
emotional and embodied capacity that is important awareness of something that the carer and the
when caring for the insiderness of another. There are other person may be sharing at that moment,
occasions where carers need to feel a minimal but and to articulate that.
necessary degree of safety and security about what is . Patients’ need for recognition and the strong
going on in relation to the patient or another cared- striving towards seeking recognition suggests
for person. This raises the question of how carers that we can underestimate how much the cared
are able to emotionally tolerate a degree of ‘‘not for person is looking for someone to trust in a
knowing’’ in order to sensitively reach towards in- general sense and that this often does not
siderness in openhearted ways without too much require the carer to know all the details. Carers
preconception. need to understand that when they say ‘‘I
How can this ‘‘openness to not knowing,’’ how- understand’’ this does not have to mean that
ever, not be enacted as a form of abandonment? The they specifically understand the content of
stories of the mothers where their insiderness was the person’s ‘‘insiderness,’’ but it rather has the
not understood or recognized resulted either in a form: ‘‘I understand your vulnerability at the
rebellious ‘‘taking of things into their own hands’’ or moment.’’ Here carers understand the great
a sense of traumatized violation from which they power that they hold in being the one who
found it difficult to recover (Lundqvist et al., 2002). engenders trust rather than being the one ‘‘who
So, betrayal of insiderness can either force indepen- knows.’’ In a lifeworld-led approach this is a
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Phenomenologically informed insights that can guide practice
shift of understanding away from a personal In this view ‘‘illness’’ is not separate from how a
expectation of certainty towards ‘‘the reaching’’ person’s insiderness is understood or ignored.
towards the ‘‘ambiguous’’ human situation. In two of the analysed studies we saw how deep
. Our analysis further suggests a consideration of or central the ‘‘welcoming’’ of insiderness was,
the existential meaning of what the cared for is or how deep and central the ‘‘abandoning’’ was
going through in general. Such understanding is (Carlsson et al., 2004; Nystrom, 2006). The
shown by a response which acts on the implica- course of the illness in both contexts is not
tions of what the person is going through. In independent from how it is responded to by
other words, it involves a focus on what the others. This kind of lifeworld understanding
person is able to do or can’t do in their everyday thus requires a participative world view in
lives and to help the person to do something which brute facts such as illness are always
that anticipates their needs. Boss (1963) calls seen within relational contexts that can change
this ‘‘anticipatory care’’ as opposed to ‘‘inter- them. This understanding thus emphasizes the
vening care.’’ In other words, even though great power of ‘‘reaching for insiderness’’ as a
carers may not be able to understand the force for healing, and how its absence can
persons inside world in detail, they are able to become a form of iatrogenic suffering.
become imaginatively sensitive to what the
person is trying to ‘‘reach for.’’ In conclusion, it could be said that the ‘‘insiderness’’
. Another kind of general understanding that dimension of our humanity is the ‘‘soft underbelly’’
may benefit carers when they can’t have specific that often lies hidden in the shadows. It is both the
understandings of a person’s insiderness refers place that hides our vulnerabilities and therefore
to an understanding of the kind of bodily struggle often the place that is neglected in our discourses.
that a person is going through in their illness The alternative to such neglect would be a much
trajectory. This focus can be particularly em- keener attunement to the phenomenon of ‘‘caring for
powered by sensitive observation of these bodily insiderness’’ as a foundational requirement for care
struggles and what this might mean for the to be care. It is hoped that by restoring ‘‘insiderness’’
unique ways that a person’s body is signifying explicitly to its essential status for meaningful caring,
about their situation. This is a shift of focus something has been contributed about what it is,
from the mere bodily behaviour or symptoms to what ‘‘reaching’’ for it means, and what the con-
an understanding of what lived body is trying to sequences may be if it is sufficiently neglected.
say about the person’s insiderness. An over-
reliance on the bodyobject gaze may shift Conflict of interest and funding
attention away from insiderness. For example,
when the person is expressing discomfort, the The authors have not received any funding or benefits
carer focuses on the insiderness-generated mes- from industry or elsewhere to conduct this study.
sage about what this is uniquely saying in that
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Citation: Int J Qualitative Stud Health Well-being 2014; 9: 21421 - http://dx.doi.org/10.3402/qhw.v9.21421
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