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TitleLong-term Experiences of Living with Stroke in a Family Context
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Table of Contents
                            Living an unfamiliar body: the significance of the long-term influence of bodily changes on the perception of self after stroke
		The study
			Participants and recruitment
			Data analysis
				Naive understanding
				Structural analysis
				Comprehensive understanding
			Naive understanding:
			Structural analysis
			Living a fragile body
				Living a discomforting and vulnerable body
				Living a body in need of support
			Living in increased attention to bodily functions
			Living a body that is ‘not me’
				Living a unfamiliar and unreliable body
				Living a body rejected by others
			Living with an altered perception of self
		Comprehensive understanding and reflections
		Methodological considerations
		Implications for practice and research
Document Text Contents
Page 1


Long-term Experiences of Living with Stroke
in a Family Context

Gabriele Kitzmüller

A dissertation for the degree of
Philosophiae Doctor
June 2012

Page 65


stroke survivors’ communication efforts (II). The literature reveals that the astheno-emotional

syndrome6 after stroke has a negative influence on the quality of the marital relationship as it

disturbs equity in decision making, joint goal-setting and maintaining purpose in life

(Carlsson et al., 2004, 2007).

Paper II demonstrated overprotective care and feelings of being abandoned. It is known that

couples’ interaction about helping and being helped may lead to negative emotions,

overprotective care or caregiver burden if couples lack efficient communication about what

kind of help is expected and whether the healthy partner is willing to meet these demands

(Pistrang & Barker, 2005). Even though feelings and emotions are often shared they have to

be communicated instead of silenced, in order to make mutual support possible (Rolland,

1994). Coeling, Biordi, & Theis (2003) state that rules for being the caregiver and the care

receiver must be negotiated as failure to agree about these rules cause a strain and burden on

the relationship. After having lived with stroke for several years, couples in long-term devoted

relationships seemed to have learned how to deal with the communicational challenges.

Couples experienced that their relationship was strengthened when they were able to

communicate openly (II).

The interview texts revealed that spouses hid their true emotions in the presence of the ill

partner and withheld controversial issues that they thought might offend the stroke survivor

(II, III). Only in the individual interviews were such issues addressed openly. A tremendous

unmet need of having someone to talk to resulted in unfathomable existential loneliness (II,

III). Trying to protect other family members by hiding one’s own feelings is seen in families

dealing with illness and is perceived as an obstacle to communication by creating a distance

between family members that causes loneliness and isolation (Denman, 1998; Fontana, 2006;

Shadden, 2005). Pierce (2001) shows that suppressed or avoided family conflicts result in

anger. Suppressed feelings often lead to emotional outbursts that hurt the partner more than

open communication would have (Rolland, 1994). Rolland states that unrevealed thoughts and

shameful emotions over time hinder communication and if personal needs and goals are held

back and conflicts are avoided for fear of worsening the ill partner’s condition, this may lead

to mutual resentment and guilt. According to McPherson et al. (2010) stroke survivors also try

6 This syndrome includes increased mental fatiguability, concentration and memory difficulties, irritability,
emotional instability, impaired stress intolerance and sound and light sensitivity (Carlsson, Möller, &
Blomstrand, 2004)

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to shield their family by not discussing their feelings. Stroke survivors’ greatest worries seem

to be about how the illness will affect their family members (Figueiredo, Fries, & Ingram,

2004). Failing to verbalise such concerns is associated with poor social support and low

emotional well-being. Couples’ disclosed fears might have increased their emotional shielding

(III). Fear seemed to be contagious as the partner’s perceived fear seemed to exaggerate the

spouse’s own fears. Couples did not relate that they communicated verbally about their fears;

instead they seemed to react on sensing the partners’ fears rather than sharing their own fears


There seemed to be little communication about the stroke event and its consequences between

parents and children (II). Parents thought they sensed their children’s reluctance to talk and

kept silent. Children also felt parents’ reluctance and therefore did not ask although they felt a

tremendous need to talk, as revealed in one of the children’s interview texts. When reaching

adolescence they no longer wanted to talk and rather tried to gain distance by leaving their

homes. Lewandowski in Romer et al. (2002) states that if illness and its consequences are not

discussed with the child, the parents’ behaviour will serve as a model for dealing with

emotional distress. Being left alone with fears and fantasies is harmful for the child while

open communication opens for positive adaptations. Children who are emotionally supported

by their parents seem to cope better (Korneluk & Lee, 1998).

The psychosomatic complaints of children reported by their parents indicate that children

internalised their fears and worries (II). Insufficient communication and lack of professional

support presumably contributed to these complaints. Children commonly hide their distress

from parents to spare them from worries (Steck in Metzing & Schnepp, 2007). They also feel

ashamed of being different from their peers and believe that others will not understand their

experiences (Metzing-Blau & Schnepp, 2008). As serious parental illness is associated with

emotional stress, maladjustment, fears and depressive traits in children (Romer, et al., 2002;

Sieh et al., 2010), open communication between parents and children is vital. Without open

dialogue family members may even be hindered in their development processes (Pedersen &

Revenson, 2005).

Health care providers’ and others’ communication or lack of communication was another

influential factor in stroke survivors’ and their families’ lives (I, II, III). As Parr (2001) states

aphasia is not experienced by individuals in isolation but in their social context with others.

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