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Living with Chronic Illness: an Investigation of its Impact on Social Participation

Mairena Hirschberg[1], Department of Law, Politics and Sociology, University of Sussex

 

Abstract

This article examines and explains the impact of chronic illness on social participation. Using data from the General Household Survey 2006, descriptive statistics and chi-square tests were carried out which compared the social participation of interviewees affected by different types of chronic illness to the social participation of interviewees not affected by chronic illness. In follow-up chi-square tests, possible underlying factors for this relationship - time, age and money - were tested. It was found that interviewees affected by chronic illness do not have a lower social participation per se; however, the pattern of social participation differs from that of interviewees not affected by chronic illness. In contrast to those not affected, people affected by chronic illness tend to engage in activities that take place in the private sphere, but retreat from activities taking place in the public sphere. Type of illness does not play a role: what is decisive is whether a person is affected by chronic illness or not. When trying to explain this relationship, age was found to be particularly important in that those between the ages of 0 and 20 follow the normal participatory trends of their age group.

Keywords: Chronic illness, social participation, sociology of health and medicine, public sphere, private sphere, quantitative methods, General Household Survey

 

Introduction

In its report on preventing chronic illness, the World Health Organisation (WHO) (2005: vii) states that the lives of far too many people in the world are affected and eventually cut short by chronic diseases such as heart disease, strokes, cancer, chronic respiratory diseases and diabetes.

The present article will focus on the impact chronic illness has on one aspect of the lives of those affected, namely social participation. This topic was chosen as, in order to alleviate the impact of chronic disease on the quality of life of those who are affected, it is important to gain detailed insight into the extent to which they are hampered in their social participation and into any factors which are attenuating or worsening this. The present article pursues several aims. Firstly, it aims to gain an insight into the experience of chronic illness using quantitative methods, relying on a large group of people with chronic illness and not on individual cases. This will enable the establishment of a wide knowledge base on chronic illness, representative of a large sample and thus complementing the findings of many qualitative studies in the field about the individual experience of people with chronic illness. Secondly, from results found, awareness can be raised about the many disadvantages people with a chronic illness still face in their everyday lives.

The research questions are:

  • Question 1: How does doing certain types of social activities (e.g. meeting friends/family, doing sports, being politically active) vary across those who are affected by a chronic illness / those who have a certain type of chronic illness and those who are not affected by chronic illness?
  • Question 2: Is the effect of chronic illness on social participation due to the illness itself or can it be explained by other underlying factors?

 

Background to the Present Study

Considerable research in sociology has been concerned with the experience of being chronically ill. This section will start by defining chronic illness and discussing theoretical approaches to it; it will then define and discuss of the concept of social participation. Finally this section finishes by looking at more applied qualitative and then quantitative studies in the field.

For the purpose of the present study chronic illness will be defined in line with the definition of the WHO, who define chronic conditions as 'health problems that require ongoing management over a period of years and decades' (2002: 11). Those affected by a chronic illness will be termed 'people (or 'interviewees' when referring to the participants of the General Household Survey) with / living with / affected by chronic illness' as opposed to 'people or interviewees not affected by chronic illness'.

Three major strands in the theory of sociology of health and illness can be identified. The first sociological perspective about health and illness was developed by Parsons, whose 'functionalism' saw health as vital to the functioning of the social system as a whole. According to Parsons, the 'sick role' provided a way for a person to deviate temporarily without threatening the social system. Although he based the sick role on the notion of illness as transitory, he defended its applicability to chronic illness (Frank, 1991: 208). A second strand, namely interactionism, emphasises the negotiation in both the occurrence and social responses to illness (Bury, 1997: 4-5). The final strand was proposed by Bury, who claims that 'three aspects of the experience of and response to chronic illness' (1997: 123) can be found, namely 'biographical disruption' (1982: 169), 'impact of treatment and regime' (1991: 7) as well as 'adaptation' (1991: 10). The first two approaches assume a societal structure against which the chronically sick person has to define him- or herself. In contrast, Bury takes a more individual point of view and perceives those who are affected by chronic illness as being shattered to start with by the diagnosis, but as active persons who use their agency to manage their chronic illness in the long run. Moreover, Bury's theory does not make generalisations about all people affected by chronic illness but acknowledges that the experience of being chronically sick can be different for different people. However, Bury's theory can be criticised for neglecting those who have been affected by chronic illness all their lives and thus have never experienced (or cannot remember) a disruption to their lives. Nevertheless, his 'active response to chronic illness' (Bury, 1997: 123) will guide this research project.

The sociological concept of social participation has not yet been clearly defined; therefore researchers working with that concept have drawn on related sociological concepts (e.g. Putnam's social capital as a form of civic participation, memberships and voluntary work used by van Ingen (2008: 103) or symbolic interactionism as used by Utz et al. (2003) who define social participation as social interaction with persons other than a spouse, p.523). In other health-related research, the more generic concept of the WHO, who define participation as 'involvement in a life situation' (2001: 23) has been used. Considerable research on chronic illness and social participation has sought to find a measurement scale of this definition (cf. Mars et al., 2008, 2009; Noreau et al., 2004; Perenboom and Chorus, 2003; van Brakel et al., 2005; Wilkie et al., 2005). Given the limited scope of this project, social participation will be defined in line with the quite narrow characteristics developed by Mars et al. (2008). They specify that social participation is a positive experience, having one or more of the following characteristics: social contact, contributing to society (such as paying a visit or volunteering) and receiving from society (such as receiving a visit or getting assistance in personal care). This definition excludes behaviours which do not involve an exchange between people (such as doing one's own household chores), so that social participation is distinguished from the broader concept of participation.

Few qualitative studies in the sociology of health and illness are explicitly looking at social participation of chronically sick people; however, some of them touch on aspects of it (see for example Casey and Stone, 2010; Kalitzkus, 2010; Kohler Riessman, 1990; Lindsey, 1996; Sutton and Treloar, 2007). Linking these findings to Bury's theory, one would expect to come across a 'mixture' of the three experiences of chronic illness ranging from the rather negative experience of 'biographical disruption', to the rather positive experience of 'adaptation'. This is, however, not the case, as those who have adapted to their illness are the main participants and therefore their experience dominates the literature. For example, a study by Sutton and Treloar (2007: 334) shows how most participants, in spite of initial strong reactions about being diagnosed with Hepatitis C, finally came to terms with it, adapted to their new situation and started to appreciate the people around them more. Lindsey (1996: 465) explored the meaning of the experience of feeling healthy in chronically sick persons. She found that this was a very positive experience and several of the categories Lindsey described, such as seeking and connecting with others, creating opportunities and celebrating life (1996: 468), are closely related to the concept of social participation employed in the present study. In spite of all this positive evidence, it should also be mentioned that there is also some literature which takes a rather negative outlook on living with a chronic illness (cf. van den Bemt et al., 2010; Mars et al., 2008).

Many of the rather positive opinions that participants state can be attributed to the way in which qualitative research in the sociology of health and illness is done: namely by using 'narrative analysis' (Kohler Riessman, 1990: 1195) which allows the interviewee 'to assert a competent self and heal discontinuities that narrative can bind' (1196). However, that also means that the narrative is a strategic device (Hyden, 1997: 59) that is often 'performative in character' (Bury, 2001: 273). This problem is avoided in a survey like the General Household Survey (GHS) with only closed questions. On the contrary, its participants remain anonymous, and thus they do not have to pretend something. However, one still needs to be aware of several limitations of survey questionnaires such as the 'social desirability effect' which means that people may reply what they perceive to be desirable instead of replying honestly (Bryman, 2008: 257).

Qualitative studies give a particular part of the bigger picture, as most studies concentrate on specific illnesses, age groups or both, whereas quantitative studies based on large-scale datasets automatically include participants in different age groups, those with different types of illnesses, etc.

A small number of quantitative studies looking at the impact of chronic illness on social participation exist (cf. Adamson, 2004; Gannon and Nolan, 2004 and 2009; Rijeken and Groenewegen, 2007; Rokach et al., 2006). The most extensive quantitative study on the situation of chronically sick people taking into account education, earnings, poverty and social participation was carried out by Gannon and Nolan (2004). Using data of the 'Living in Ireland Survey', they found that those with a chronic illness or disability that hampered them severely were much less likely than others (either being only hampered to some extend or not at all by chronic illness) to be a member of a club or association, to meet friends or relatives most days, or to have had an afternoon out for entertainment in the preceding fortnight (2004: 63-69). However, most of these studies do not look at particular diseases or compare across different diseases.

All things considered, this article will add considerably to the discussion in the field, as it will use a clear concept of social participation, conceptualised with variables of the GHS. Moreover, as the GHS uses a probability sample design (Ali et al., 2006: 1), unlike many qualitative studies, it avoids picking a 'special type of chronically sick person'; namely those who have come to terms with their illness. At the same time, this article will compare interviewees affected by chronic illness to interviewees not affected, which means that there is a comparison group with people not affected by chronic illness. Therefore this quantitative study will complement the large number of qualitative studies in the field by adding breadth to the depth already accumulated by qualitative studies.

Finally, social participation will be compared across different types of chronic illnesses and people with different backgrounds, e.g. age groups. Therefore this article will yield very detailed results and a very broad overall picture of the impact of chronic illness on social participation. However, the present study has its limitations as well. Most importantly, it will be difficult to find out the mechanism that explains the impact of chronic illness on social participation, which might be much more complex to capture than just by controlling for certain underlying variables, and might make it necessary to follow up this study using qualitative interviews. Moreover it should be taken into account that all questions in large-scale surveys are still answered subjectively by participants. The process of transforming subjective responses into seemingly objective rates and percentages is difficult. However, at least for the data based on self-reported health, research has shown that it matches very well with data based on professionally diagnosed health such as variables on Incapacity Benefit (Norman and Bambra, 2007: 347).

 

Method

The epistemological paradigm of this article is that of the Durkheimian positivist (Goldthorpe, 2000: 269-72) as the aim is to gain an objective understanding of their general overall experience of being chronically sick by using the example of social participation. This why quantitative methods have been used, through the analysis of a large scale survey dataset. For the present study the data of the GHS 2006 were chosen because, on the one hand, this dataset is freely available, and on the other hand it has variables describing chronic illness and social participation activities in great detail. Moreover, the data quality of this data set is 'reasonably assured' (Bryman, 2004: 205). The GHS sampled 13,585 households using a probability, stratified two-stage sample design, which ensures that the data are nationally representative (Ali et al. 2008: 1).

As this study uses a secondary dataset, ethical obligations arise that extend backwards to the primary researcher, data subjects and archivist who make the secondary researcher's work possible, and forward to the public who is the recipient of the knowledge produced. Subject privacy will be honoured (Johnson and Bullock, 2009: 224) as the data of participants of the GHS are used in an anonymised version and therefore individuals are not identifiable.


Preliminary considerations

The concepts of social participation and chronic illness will be operationalised using the existing variables in the dataset. Those chosen variables are then prepared to match the purpose of the present study.

Predictor

Explanatory Factors

Outcome

Chronic Illness
- whether has a longstanding illness

Answer categories:
- Yes
- No

Type of chronic illness: Variables:
- cardio-vascular disease
- muscular skeletal illness
- mental/nervous illness
- lung problem
- sensory impairment
- digestive tract/ reproductive problem
- other health condition

Answer categories to each type of illness variable:
- has a certain condition (e.g. cardio vascular disease)
- is perfectly healthy
- does not have a certain condition but another one
(e.g. does not have cardio-vascular disease but a muscular skeletal illness)

Age
Answer categories:
- 0-20 years old
- 20-40 years old
- 40-60 years old
- older than 60 years

Leisure time available measured by:
- Type of employment
- economic status
Answer categories:
- working full time
- working part time
- unemployed
- student
- looking after family home
- long-term sick or disabled
- retired from paid work
- not in paid work
 

Family status
Answer categories:
- single
- couple without child
- couple with child
- lone parents

Money measured by:
- if interviewee can make ends meet
Answer categories:
- with great difficulty
- with difficulty
- with some difficulty
- fairly easily
- easily
- very easily

Cultural Activities:
- cinema
- live sport event
- live performance
- visit galleries

Answer categories:
- not applicable
- no visits during the last 12 months
- one to three times
- four to six times
- seven or more times

Social Activities
- meeting friends
- meeting relatives
- contacting friends
-contacting relatives

Answer categories:
- not applicable
- daily
- every week
- several times a month
- at least once a month
- never

Leisure time groups:
- hobby social club
- sports group
- other group
- religious group

Answer categories:
- takes part in certain type of group
- does not take part in certain type of group


Table 1: Overview of all variables from the GHS used


Chronic Illness

'Longstanding illness' is defined by the variable LSIll as a positive answer to the question 'Do you have any longstanding illness, disability or infirmity?'. Respondents who report a longstanding illness are asked 'What is the matter with you?' and details of the illness or disability are recorded by the interviewers and coded into one of the 40 levels (i.e. 40 different illnesses corresponding broadly to the chapter headings of the International Classification of Diseases (ICD)) of six variables relating to the first /second (etc.) illness.

As 40 levels is too detailed for the current project, in a first step the variables icd 1 to icd 6 were recoded into categorical variables called chronic_illness 1 to 6, with each eight levels called cardiovascular disease, muscular skeletal illness, mental nervous illness, lung problem, sensory impairment, digestive tract/reproductive problem and other health problem.

The problem is now that separate variables are needed to determine whether a participant has a certain type of chronic illness or not regardless of whether this is his or her first/second/etc. illness. To solve this problem, the six chronic illness variables were transformed into variables which assigned the value 1 to everyone who was affected by a certain chronic illness; the value 2 was assigned to everyone who was not affected by chronic illness, and the value 3 was assigned to everyone who did not suffer from a certain chronic illness, but was affected by another type of chronic illness. Those with several chronic illnesses thus appeared several times in the analysis: first of all when the impact of their first condition was tested against the subsample of those not affected by chronic illness, secondly when the impact of their second chronic illness is tested against the subsample of those not affected and so on. When testing out the impact of a certain condition, those who are not affected by that certain type of chronic illness but who have another type of chronic illness were excluded from the analysis.


Social Participation

In the present article, social participation will be defined in line with the definition by Mars et al. (2009: 1208). A wealth of variables of the GHS describes social participation according to the definition of Mars et al., which can be categorised in three types of social participation. First of all, ' cultural activities' which include the frequency of going to the cinema, to live sports events, to live performances and to art galleries. Secondly, 'social activities' are part of the dataset, namely the frequency of contacting and meeting friends as well as the frequency of contacting and meeting relatives. All variables relating to 'cultural activities' and 'social activities' are variables of ordinal nature, which means they are still categorical. The third type of social participation refers to group activities of the participants. All variables concerning group activities are of nominal nature.

With regard to the variables concerning group activities, only the first six variables were chosen to be included in the further analysis. This was done due to the low case numbers in the last four variables (only very few people take part in more than six groups). To further simplify the analysis, of the ten available answers the three most common (hobbies/social groups, religious groups, sports groups) were chosen and all other groups classified as 'other'. Along the same principles that were used to compute the variables concerning illness types, four different dichotomous variables which assign to each participant whether s/he takes part in a certain type of group regardless of whether this is his/her first, second etc. group were computed. The four new variables called 'hobbies/social group', religious group', 'sports group' and 'other group' are of categorical nature.


Mediating Variables

Mediating variables were used to explain the relationship between social participation and chronic illness. These variables relate to the following categories: age, leisure time available and money.

With regard to leisure time available (which is important as only those who have the time to e.g. go to the cinema can go), the economic status of a person and his/her family status were taken into account. The variable economic status (see table above) is seen as very appropriate as it entails long-term sick and disabled as well as retired and unpaid work which might be applicable categories to many chronically sick people. The categorical variable Family Unit Type, which has 18 levels, was recoded into the simplified categorical variable family_grps 4 levels which are single, couple without child, couple with child and lone parents.

The continuous variable 'age' was recoded into a categorical variable which groups all participants into four age groups: zero to 20 years, 21 to 40 years, 41 to 60 years, 61 and older. Those age groups were chosen as they mark different phases in life. From age 21 onwards it is often the case that young people have finished university and have left their parent's home, which could infringe on social participation since there is less parental support which might have compensated for any disadvantages related to chronic illness before. As the descriptive analysis shows, from age 60 onwards there is a rapid rise in chronic illness prevalence, therefore this group was set up. To measure how wealthy a participant is, the question if s/he can make ends meet was considered, rather than taking his/her income into account. The latter was done as those who are affected by chronic illness might, in spite of a higher income, struggle to make ends meet due to illness-related expenditures.


Analysis

As a first step in the analysis, the impact of having a certain type of illness (e.g. cardiovascular disease) on taking part in a certain type of social participation (e.g. sports group) was tested. Thereby those affected by a certain type of chronic illness were tested against those who are not affected by any type of chronic illness at all. The independent variable is ' type of chronic illness'; the dependent variable is type of social participation. Chi-square tests were chosen as a statistical test due to the kind of data used (categorical, non-parametric, independent) as they allow the finding of relationships between two categorical variables. The observed frequencies of the chi-square test make a comparison of the strength of impact chronic illness has on social participation possible, while the chi-square test itself provide information about whether the difference in the observed frequency between the two groups is statistically significant. At the same time it is possible to control for a third variable using chi-square test, so as to make sure that the two-way relationship between two variables is not spurious. Finally, chi-square tests are uncomplicated in their interpretation.


Chronic illness by Social Participation and Explanatory Factors

To find out what else (apart from chronic illness itself) might explain the pattern of social participation that was found, chi-square tests were done again. This time they were controlled for the explanatory factors outlined above. The reason for doing this was to strengthen the assumption that chronic illness itself (and not, for example, lack of money) was the reason for the pattern of social participation found. As the pattern of social participation was found to be fairly similar across all types of chronic illness, type of chronic illness was no longer considered in the analysis. Those affected by chronic illness (regardless of the type of illness and the number of illnesses they have) were tested against those not affected by chronic illness.

 

Results

The following paragraph will describe the relationship between social participation and chronic illness (see Appendix 1 for exact chi-square results). Then any underlying factors to this relationship will be determined (see Appendix 2 for exact chi-square values). As it was found that the pattern of social participation is nearly the same across all types of illness, this section will be structured according to type of social participation rather than type of illness.

Type of Social Participation Type of Chronic Illness
Cardio-vascular disease Musculo-Skeletal Disease Mental/Nervous Disease Lung Problem Sensory Impairment Digestive Tract/Reproductive Problem Other Health Problem
Leisure time groups Religious / Hobby / Social / Other Groups
Sports Groups ---
(non-sig.)
---
(non-sig.)
---
(non-sig.)
---
(non-sig.)
--- ---
(non-sig.)
---
(non-sig.)
Cultural activities -
Social activities Meeting Relatives ---- ----
(non-sig.)
Contacting Relatives --- ---- ---
(non-sig.)
Meeting Friends
Contacting Friends

Table 2: Type of Chronic Illness by Social Participation: Overview of the two-way results (arrows refer to the frequency distribution from the point of view of those affected by chronic illness, i.e. an upwards arrow means that those affected by chronic illness have a higher participation than those not affected)


With regard to leisure-time groups, namely hobby/social group, religious group and other group (sports groups will be discussed below), across all types of chronic illness, chi-square test results are significant; looking at the frequency distributions reveals that people affected by chronic illness have a much higher rate of leisure-time group attendance than those not affected. Sports groups are an exception to that rule. Across all types of chronic illness (except sensory impairment), chi-square test results for sports group attendance are non-significant, this means that those who are affected by chronic illness and those who are not have equal levels of participation in sports groups.

Significant chi-square results can be found across all cultural activities and types of chronic illnesses; again, looking at frequency distributions of participation in cultural activities show that the participation of those affected by any chronic illness is much lower than that of those not affected.

All in all, people with chronic illness meet and contact friends less frequently. This is significant across all types of chronic illness. All tests concerning meeting and contacting relatives yielded significant results (apart from sensory impairment where the result was non-significant). These significant results are due to the fact that interviewees with chronic illness meet and contact relatives more often than interviewees not affected by chronic illness.


Explanatory Factors

Several variables concerning age, time, and money were tested out as possible underlying factors using chi-square tests.

When controlling for explanatory factors, those categories that suddenly turn from significant to non-significant or from non-significant to significant are of particular interest, as they show that the explanatory factors are influential.

However, there are several reasons why such a turn might occur: the participation of people affected by chronic illness might change to equal to or to differentiate even more from the participation of those who are not affected. Or the participation those not affected might change to equal to or to differentiate even more form the lower participation that interviewees affected by a chronic illness normally exhibit. Also interviewees affected by a chronic illness might simply follow a certain trend of their unaffected counterparts (as it is the case for age). Finally, some of these non-significant results are rather due to shifts between different categories (i.e. more often daily than usual, but less often once a week than usual) rather than a real shift towards less or more participation.

Therefore a change of significance/non-significance has to be treated with caution. For reasons of space-constraint, only those real effects will be reported that show that it is not chronic sickness but an underlying factor that causes the different pattern of social participation that interviewees affected by a chronic illness exhibit compared to interviewees not affected by a chronic illness. For all other cases, not discussed here, it can be assumed that the different pattern of social participation of interviewees affected by a chronic illness is due to their sickness itself rather than other underlying factors.

Across all activities, as a general rule it can be said that the age group of 0-20 years is of particular importance. Within this age group, all results were non-significant, meaning that interviewees affected by a chronic illness followed the normal pattern of participation in that group. Also unemployment leads to lower social participation, a trend which interviewees affected by a chronic illness follow, so that results in this category are always non-significant.

Concerning leisure time groups no explanatory factor tested was found to be influential. As to sport group attendance which was non-significant in the two-way tests, only results turning significant now in the three-way tests will be reported. With regard to economic status, those who are retired and not in paid work have significant results, with interviewees affected by a chronic illness in the 'not in paid work' category, in particular, having a much lower participation. The same is also true for interviewees affected by a chronic illness who manage to make ends meet 'with great difficulty' and who in contrast manage to make ends meet 'very easily'. At the same time, for interviewees affected by a chronic illness whose family status is single or couple (of the variable family_grps) significant results were yielded.

When it comes to participating in cultural activities, within the student age group (which was a level of the variable economic status), cultural activities are very popular and those affected by chronic illness in that age group do not stand out from that trend, but on the contrary participate as actively as their unaffected counterparts. Also those affected by chronic illness who are doing part-time or full-time work have the same participation rate concerning live performances: in this case money might come into play, as live performances normally require the purchase of a ticket. Age is only relevant for those under 20, money (apart from live performances), time and mobility do not play a role, as the same pattern can be found when and not controlling for those variables.

For meeting and contacting relatives being a lone parent has a real effect, with interviewees affected by chronic illness who are lone parents meeting relatives more often which might be due to the fact that they have to rely on their family more heavily for child care etc.

Regarding meeting and contacting friends those working part time have a non-significant result which is due to the fact that part-time workers affected by chronic illness have a higher participation than interviewees with chronic illness in other categories. With that higher participation, they reach the high participation standard of those not affected by chronic illness. Also unemployment leads in the case of meeting friends to a non-significant result which is due to a lower participation of interviewees affected by chronic illness (compared to interviewees with chronic illness in other categories, but also not affected unemployed participants). Therefore it can be concluded that time (part-time work) and money (unemployment) play a role when meeting and contacting friends.

 

Discussion

For interviewees over the age of 20 affected by chronic illness, a higher participation (compared to their unaffected counterparts) was found for meeting and contacting family members and taking part in leisure-time groups. These activities can be associated with the private sphere as they happen 'in relative isolation, properly screened from the observation of others' (Wolfe, 1997: 182). In contrast to that, it was found that interviewees above the age of 21 affected by chronic illness had a lower social participation in cultural activities. These activities can be linked to the public sphere as they take place in public places to which the public has access (such as galleries, cinemas etc.) and which are thus under 'the full gaze of others' (Wolfe, 1997: 182).

On a more theoretical level the retreat into the private sphere can be explained by the theory of Bury who, as discussed above, defined three 'aspects of the experience of and response to chronic illness' (1997: 123). Interviewees affected by chronic illness in this dataset are a mixture of participants being at the 'biographical disruption' stage, the 'impact of treatment' stage and the 'adaptation of management' stage, thus representing an 'average' chronically sick person who is somewhere in the middle. These three stages have important consequences when it comes to involvement in the private and public sphere. Less acceptance of one's illness is needed to stay in the private sphere, i.e. in one's comfort zone; this means that private activities encompass all people with a chronic illness at all three stages.

However, it takes longer to accept the chronic illness to the degree at which an affected person dares to enter the public sphere, which can be associated with having reached the ' adaptation of management' stage. This leads to an overall lower participation in activities in the public sphere by interviewees affected by chronic illness as those who are at the 'adaptation of management' stage are more likely to choose to take part, while those at the 'biographical disruption' and 'impact of treatment' stage will opt out from such activities: this reduces the percentage of people with chronic illness actually participating.

Parsons' theory of 'deviant behaviour' (Lufkin and Larson, 2006: 24) due to being sick is supported: in the private sphere people know that a person is affected by chronic illness and therefore accept or get used to (seemingly) deviant behaviour, as one of Bury's (1982: 176) participants says 'everybody knows me sort of thing [...] they accept me as I am'. This is not the case in the public sphere, where in the words of the same participant (Bury, 1982: 176) 'they try to avoid you. [..] People tend to stay away from you. [...] You tend to do the same then.' In other word the chronically sick person is labelled as a deviant person. It takes a longer time to come to terms with the threat of being labelled as deviant in public and daring to go out again.

Both the 0- to 20-year-old population and meeting and contacting friends are an exception to that general picture. Meeting friends might be understandable as this might take place in the public sphere, for example in a cafe. However, it would also be possible to invite friends home which would allow the individual to stay in the private sphere. Also contacting friends falls short in the chronically sick subsample although the exact question in the GHS specifies contact as‚ 'on the phone, by letter, fax, e-mail or text or use chatrooms or the internet to talk to friends', which would allow interviewees affected by chronic illness to make contact from home (Ali et al., 2006: 113).

As described above, the 0- to 20-year-olds follow the normal participation pattern of their age groups; reasons for this might be that they were in better medical treatment from the beginning onwards (which was not available in the past and thus not available for the older generation when they were young), have better social and financial resources as they still live at home or the fact that they experience chronic illness differently. However, the sparse literature on that age group does not mirror the finding that the 0- to 20-year-old interviewees affected by chronic illness follow the normal leisure-time behaviour pattern (cf. Rapp et al., 2010; Sawyer et al., 2004).

Much of the qualitative literature as outlined above (e.g. Casey and Stone, 2010; Kalitzkus, 2010; Kohler Riessman 1990; Lindsey, 1996; Sutton and Treloar, 2007) gives a rather positive outlook on chronic illness and is therefore supported by this study. The qualitative literature can give useful hints on why people affected by chronic illness retreat from the public into the private sphere. Dyck (1995: 307) using multiple sclerosis as an example for chronic illness, finds that while patterns of social interaction changed at the same time the use of public sphere diminishes. This is due to the fact that the impact of MS in the private sphere can to a certain extent be counterbalanced, for example by changing the interior of the house or employing a cleaner. However, the impact the illness has on participation in the public sphere is full blown. This has rather practical reasons: For example one woman reports that she had to move away from the town centre and thus from theatres, concerts, places to go (p.311) for financial reasons, so that money can be seen as an explanatory factor. The more severely disabled were highly dependent on others for access to the public sphere as they needed a family member or homemaker to take them to theatres, concerts etc.

As outlined above (cf. Adamson, 2004; Gannon and Nolan, 2004 and 2009; Rijeken and Groenewegen, 2007; Rokach et al., 2006) quantitative studies draw a rather negative picture of chronic illness and social participation, which was not supported by the present study.

 

Conclusion

The first research question was: how does doing certain types of social activities vary across those who are chronically sick/who have a certain type of chronic illness and those who are not affected by chronic illness?

From this project it can be said that, all in all, chronically sick people do not have lower rates of social participation per se. However, the pattern of social participation exhibited by people affected by chronic illness varies from the one exhibited by people not affected. Across all types of chronic illness the pattern of activities in which people affected by chronic illness engage in is very similar, therefore when it comes to social participation, the decisive point is whether one is affected or not by chronic illness; type of disease does not play a role.

With regard to the second research question when looking at possible underlying factors it can be said that the results of the first question are only true for those over 21, as those between 0 and 20 follow the normal pattern of their contemporaries.

The present article gives support to the theories of both Bury and Parsons. At the same time, it matches the rather positive findings of the qualitative literature. These findings also add credibility to qualitative studies as it can no longer be claimed that the rather positive outlook taken in the qualitative literature is only due to the usage of a 'narrative analysis' technique, or the circumstance that only those who have come to terms with their illness volunteer to be interviewed: two claims that can be ruled out by this study as a large scale dataset was used.

If further research was to be done on the topic it would be useful to employ longitudinal models based on panel data to get a clear causal picture of the dynamics of chronic illness and social participation. Moreover, it would be important to spend more time looking at the explanatory factors, for which I would use qualitative methods. These would have the advantage that the participants can really explain themselves and are not bound to answer in rather simplistic categories as it is the case with large scale datasets.

 


 

Acknowledgements

I would like to thank Dr Catherine Will (University of Sussex) for supervising this project as part of a final-year dissertation.

 

List of Tables

Table 1: Overview of all variables from the GHS used.

Table 2: Type of Chronic Illness by Social Participation.

 

Appendices

Appendix 1: Chi-Squared Results: Type of Illness by Social Participation

Appendix 2: Chronic Illness and Social Participation by Explanatory Factor

 

Notes

[1] Mairena Hirschberg graduated from the University of Sussex with a Bachelor of Arts in Sociology and Contemporary History in 2011. She is currently undertaking a Masters degree in Sociology at the University of Oxford

 

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To cite this paper please use the following details: Hirschberg, M. (2012), 'Living with Chronic Illness: an Investigation of its Impact on Social Participation', Reinvention: a Journal of Undergraduate Research, Volume 5, Issue 1, http://www.warwick.ac.uk/reinventionjournal/issues/volume5issue1/hirschberg Date accessed [insert date]. If you cite this article or use it in any teaching or other related activities please let us know by e-mailing us at Reinventionjournal@warwick.ac.uk.