who-1

7/21/2019 WHO-1

http://slidepdf.com/reader/full/who-1 1/7

Background

Some people are so hard struck by illness that they cannot continue working. They become sick

listed, and hence begin being absent from work.

In Sweden 4.6% of those who work are longterm sickness absent !"#. Inability to work due toillness and the subse$uent economic loss cause a great deal of problems in estern welfare

societies.

&uch is known about risk factors for being longterm sicklisted, but there is still too little

known about its 'arious aftermaths.

(re'ious research describes that people who are sickness absent face changes in areas like health,

work , relations with family and friends , and economy.

They describe that in the beginning of the absence the e)perience was positi'e and a chance to

rest. *fter some time, howe'er, the e)perience turns from positi'e into a negati'e circle of pain,inacti'ity and isolation, which leads to indifference.

+ther studies describe that the period of sickness absence changes a persons selfimage and life

goal-life rhythm, and causes feelings of e)clusion, shame and social stigma.

*fter a few months of sickness absence, the probability of returning to work decreases

drastically. The rapid deterioration of the probability of returning to work indicates that sickness

absence and particularly longterm sickness absence entails processes that somehow

undermine and decrease peoples work ability and health and cause all the abo'ementioned

changes/ research on people recei'ing disability pension confirms this.

0isability pension recei'ers ha'e higher health care utili1ation, lower $uality of life and higher

risk of premature mortality than do people who work , e'en when the disease causing the

disability is ad2usted for !"3#. There is also e'idence that work is generally good for ones

general wellbeing , mental and physical health, and that unemployment is strongly associated

with poorer health !"#.

*lth ough sickness absence is a large problem, little research has engaged in describing the

e)periences of the sickness absent people and the accompanying changes in life. The aim of this

$ualitati'e study was to describe, analy1e and understand longterm sicknessabsent peoples

e)periences of being sicklisted.

Methods

The study used a $ualitati'e and descripti'e design with a phenomenological approach.

The method offers a way to gain knowledge of peoples e)periences of different phenomena.

7/21/2019 WHO-1


The phenomenon in this study was sicklisting. hat does it mean to be sicklisted5 hat does it

mean to not be able to work because of illness5 hat are the aftermaths of life as a sicklisted

person5 ow is ones lifeworld changed5

Sample

The study was conducted in three municipalities in central

Sweden in 78"". The sampling was purposi'e with the

goal of ma)imum 'ariation to attain di'erse li'ed e)periences and perspecti'es of longterm sick

listing. The municipalities were chosen based on their differing le'els of sickness absence9 one is

rated low, one medium and one high.

The final sample comprised of "6 participants , nine women and se'en men. :ine of them were

fully sicklisted, while se'en were parttime sicklisted. They were aged between 3" and 64

years , and had 'aried educational le'els. Three had been born abroad, but had li'ed in Swedensince childhood. Before being sicklisted ele'en of the participants were employed, three had

their own company, one was a student, and one was unemployed. The selfreported causes of the

sicklisting were back problems , psychiatric problems and cardio'ascular problems.

0ata collection

The data were collected through semistructured indi'idual inter 'iews to gain rich descriptions.

The a'erage duration of the inter 'iews was 48 minutes ;range "6 6"<, and they were recorded

digitally.

0ata analysis

The inter'iews were 'erbally transcribed and analysed. The analysis followed the four steps of

=iorgis analysis process9

". >eading the data9 *ll the printed inter'iews were read se'eral times by all authors ;two nurses

and one physician< until a sense of the whole was attained.

7. Breaking the data into parts9 The te)t was di'ided into meaning units by the first author,

discriminating units that highlighted the e)per ience of being sicklisted . In this step, the

analyser tried to embrace the phenomenological attitude and bracket the preconcei 'ed perceptions of how it is to be sicklisted . The analyser tried to be what =iorgi describes as ?

disco'eryoriented@ and sens iti'e to including une)pected descriptions. The $uestion ? 0oes this

describe how it is to be sicklisted5@ was used as help in this step. The descriptions were put into

a scheme. using =iorgis phenomenological method

7/21/2019 WHO-1


3. +rgani1ing the data9 *ll the meaning units were e)amined, probed and redescribed in a more

scientific language while still re'ealing the original e)perience. The descriptions formed ?

re'elatory themes@ . The $u estion ? hat doe s it me an to be longterm sicklisted5@ was used

to remain focused on the aim of the study . &any of the themes coincided and could be merged,

and it appeared that they belonged to three different main themes.

4. A)pressing the structure of the phenomenon9 The essential re'elatory themes, along with the

main themes , were laid out for an o'er all scrutini1ation, after which an essential structure of the

phenomenon emerged ; Table 3<. To find the essence, the main themes were used as $uestions,

for e)ample ?hat does it mean to step out of working society5 hat does it mean to follow the

steps in the rehabilitation chain and to ha'e numerous encounters with professionals5@

>esults

The essential meaning of being sicklisted was the loss of independence ;igure "<.

Independence was lost when the participants, due to illness, had to stop working and start relyingon the state for support. &ost of the participants e)perienced their present life as a constant,

uncertain ?pending@ while being $uestioned by authorities and society. They were all e)posed to

the social insurance rules and obliged to follow the steps in the rehabilitation chain but it affected

them differently. * few e)perienced being treated well in encounters with professionals and went

through changes that ultimately led to a better life, whereas many e)perienced not being treated

well, which caused impaired confidence in themsel'es and in authorities

Stepping out of working society

The participants in this study e)perienced that their illness pushed them to the point where they

could no longer cope with the effort re$uired to work. They had to stop working to start healing/

e'en though they wanted to work, they were not able to.

>est

The sicklisting turned into relief, when they finally got the possibility to rest after ha'ing

struggled for a long time. They described rest as a prere$uisite for gaining energy to cope with

li'ing and start healing. Some described being unaware of the need to rest but being urged by

relati'es to seek care.

aiting in uncertainty

Se'eral of the participants could not recall how they had spent their first months of being sick

listed.

*fter the first period, the waiting started it was long, and it was a waiting in uncertainty.

7/21/2019 WHO-1


The uncertainty was described as stressful, and as causing worry that they would not know when,

or if, their body would regain its former strength or if they would get an appointment with the

specialist.

The waiting filled their days, and they described that after a time without routines they became

passi'e, inacti'e, unmoti'ated and e'en apathetic.

Changed selfperception

*ll of the participants e)pressed that they wanted to work , but that their body and the illness

symptoms restrained them. The feeling of wanting to work but not being able to was described as

not being a complete human being or as being a secondclass human being. The things they used

to cope with, and used to do well, no longer worked. This changed their perception of

themsel'es.

Stigmati1ation

Being sicklisted was accompanied by a feeling of being $uestioned by both society and the

authorities. Some participants described that society started to look at them differently when they

be came sicklisted. They e)pressed being stigmati1e d and e)pe cted to beha'e and look in a

certain way.

Changed economic conditions

&ost of the participants economic conditions had changed for the worse. ith the reduction in

income came changes in life. The deterioration in economy was described as a failure, as they

could no longer pro'ide for their family. The feeling of not being able to support their family was

hard to bear, and made them feel worthless and ashamed.

ollowing the steps in the rehabilitation chain

Being sicklisted meant being obliged to follow the steps in the rehabilitation chain to be entitled

to support and rehabilitation .

eelings of powerlessness

&ost of the participants described feelings of powerless ness in the process of being sicklisted.

They felt forced to follow the steps in the chain, as they would not get their allowance otherwise.

:umerous encounters with professionals

Being longterm sicklisted entailed being e)posed to numerous encou nters with professionals

these could be physicians , rehabilitation professionals , officers at the Social Insurance *gency,

and sometimes officers at the municipality and the (ublic Amployment Ser'ice.

7/21/2019 WHO-1


Being $uestioned

The professionals described abo'e were assigned to $uestion the sicklisted indi'idual based on

their authoritys 'iewpoint and assignment, in relation to the sickness insurance during the sick

listing process and rehabilitation. Being continuously $uestioned caused most of the participants

to feel they were not belie'ed or listened to, and as if their credibility was $uestioned.

=etting mi)ed messages and sitting inbetween

Some participants e'en e)perienced that different authorities professionals started $uarrelling

about their work ability and capacity to work during the reconciliation meeting. a'ing to sit and

listen to others discussing their abilities , inabilities and future and arguing about it was described

as humiliating and as feeling meaningless.

0isrespectful encounters

The participants described being disrespectfully treated at the negati'e encounters. Thedisrespect was e)pressed, for e)ample, in the professionals beha'iour and language.

>espectful encoun ters

The participants described the positi'e encounters as allowing them to meet with fine

professionals who asked what they wanted and how they felt, to be listened to, and to recei'e

helpful rehabilitation. * few participants described entirely positi'e encounters with

professionals , but most of them had both positi'e and negati'e e)periences

Discussion

The most conspicuous findings in the present study were that stopping working brought many

changes , that the part icipants had feelings of powerlessness in the process , and that they

e)perience d offen si'e treatment and-or encounters with profess ionals. The uncertainty in

waiting while being sicklisted seemed to be especially stressful for the part icipants. This is

earlier described in one study of returning to work!"7#. +ckander and Timpkas ! # findings , tha

t after some time of sick lea'e the e)perience turns from positi'e into a 'icio us circle of

inacti'ity and iso lation, confirm the presen t studys finding s of a changing process not only in

e 'ery day lifebut also personally. Being away from work changed who they were and this

seemed to make them dislike themsel'es. (re'ious studies on sicknessabsent indi'iduals also

describe lowered selfimage and selfefficacy !6,D,"8"6#.

The participants sicklisting caused by their illness changed their social status. The social

science theory of status incongruence, first described by Eernon and Buffler !38# and later by

Fundberg, Gristenson and Starrin !3"#, addresses this problem. Being in status incongruence

entails a discrepancy in ones status positions/ for instance, ha'ing a high education but a low

status 2ob or, as in the present study, not being able to cope with working due to illness and

7/21/2019 WHO-1


becoming dependent on allowance. This status difference ;incongruence< is psychologically

stressful, causes shame, and is related to health problems in the long run !38,3"#. Thus, due to

their illness the participants ?lost@ their status when they lost control o'er crucial decisions in

their own li'es, and as a result felt stressed and ashamed. Some studies suggest that it is the

shaming e)perience that is the depleting negati'e power in the change processes for both people

who are sicknessabsent and people with bad finances !37,33#.

:o longer being able to work and support oneself, and therefore feeling like a ?loser@, is also

most likely also influenced by norms in society. Swedish people are known to highly appreciate

independence, and it is a political and social norm that one should stay independent and

contribute to the welfare state by working. In alignment with ?the Swedish model@ !34#, you

ha'e the right to recei'e benefits when your work ability is reduced or disappears altogether due

to illness or disability. Still, the norm is to work/ thus not working means not contributing, not

being ?normal@, and being e)cluded from society. *ccording to the norm in society, the

participants in the present study did not fit in and they described the feeling of being stigmati1ed.

Similar e)periences of feeling stigmati1ed are described in, for instance, a study from the Hnited

Gingdom in which people with chronic fatigue syndrome e)perienced claiming welfare benefits

as 'ery distressful and as causing feelings of stigma !"6#.

The o'erall feeling of losing ones independence seemed to be closely linked to the fact that the

participants were obliged to follow the steps in the rehabilitation chain. If they did not do as the

regulations said, they would not get their allowance. They had lost their independence in

choosing what would be best to do in order to reco'er, and they did not ha'e the power to say no.

Some of the participants who had had especially bad e)periences seemed to ha'e de'eloped a

permanent distrust of the professionals they met. The abo'ementioned theory of incongruence

has been found to be associated with a lack of social trust and to undermine confidence in

economic and political institutions !3"#. So, the participants e)periences of status incongruence

in combination with disrespectful encounters most likely contributed to the impaired confidence

they seem to ha'e in authorities.

&ethodo logical discussion

The present study presents sub2ecti'e data, and the researcher is a tool in the analytic process.

or trustworthiness, Fincoln and =ubas $ualitati'e criteria for conducting and assessing

$ualitati'e research were followed !3#. Credibility was stri'en for by attaining the

phenomenological attitude through the analysis and the description of the findings. To bracket preconcei'ed assumptions, the first author wrote down her thoughts about the e)perience of

being sicklisted before starting the inter'iews. *nother important step was to a'oid reading

theory literature that might influence the analysers to disco'ering themes which ?fit@ into

e)isting theories or models while forming the phenomenons structure. The authors also

discussed how their preconcei'edide as affected the search for structure in themes and essences

throughout the analysis process. The descriptions of the study in the methods section account for

7/21/2019 WHO-1


the criterion of dependability. hen presenting the findings, the main and re'elatory themes we

reconsolidated in $uotes from the inter'iews to allow the reader to go back to ? the things

themsel'es@, as described by usserl!74# and as a part of stri'ing for confirmability. The study

was discussed with researchers outside the research group se'eral times at seminars to enhance

reflection during the analysis and to form confirmability. The sample is small but ne'ertheless it

is most likely similar to longterm sick listed patients in primary health care centres in Sweden,

e)cept for the loss of sicklisted with foreign background. Transferability to these settings should

be possible. e do not know the reason to why the in'ited with foreign background declined

participation, but se'eral of them had difficulties to communicate in Swedish when contacted by

telephone. To offer use of interpreter might ha'e changed their decision. ow their e)periences

would affect the findings is unknown. The present findings can be useful for all professionals

working with sicklisted persons in trying to understand how the e'eryday life of a sicklisted

person can change, and how to offer appropriate support. The participants were all ill, and it was

not easy to distinguish the e)perience of sick lea'e from that of illness. This should be kept in

mind when reading this paper.

Conclusions

Sicklisted can e)perience the process of being on longterm sickness absent as 'ery negati'e.

The negati'e e)periences are linked to conse$uences of stopping to work, conse$uences of

social insurance rules and to negati'e encounters with professionals handling the sickness

absence. A)periences can also be positi'e, but in the present study it was few. Issue for further

research are to e)amine how sicklisted e)perience participation in the process. There is also a

need to further e)amine how e)tensi'e the negati'e e)periences are, and how they affect sick

listed peoples reco'ery and return to work

who-1

Documents