"ME/CFS & Social Isolation - Survey Report" (2010). Paid for by ME/CFS Australia (Vic)

[Dolphin]

 

[Kati]

@Dolphin thx for sharing the graphics and details of the survey. i wonder if it would be any good if other samples of pt communities could be surveyed and compared as well?

 

[Dolphin]

When asked why they did not feel confident many respondents felt that they did not want to be a burden to their family and friends so they did not go to them for help. Support services also were revealed to be limited to people with ME/CFS as a theme in the responses as there was frustration with not being able to access support from Centerlink, government services and health professionals. Those who were confident in accessing services revealed when asked to explain why that they mostly had an understanding family that they felt comfortable accepting and asking for assistance from.

 

[Dolphin]

 

[Dolphin]

Sample size approximately 144.

"When it comes to public transport most respondents do not use any form, of those that do use the transport train is the most popular form followed by taxi, bus then tram (Fig 14). Overall there were respondents that felt that public transport was accessible and some that didn’t. The common reasons that public transport was found to not be accessible were the location where the respondents lived and also many found it too expensive, especially when it came to taxis. The symptoms of ME/CFS also were a common problem identified when it came to public transport one respondent indicated that brain fog was a problem “the need to concentrate and remain alert so I do not miss my stop becomes so exhausting and stressful”."

 

[Dolphin]

3.2 Employment/Study

Soderlund et al., 2000 found that it was hard for people with ME/CFS to maintain a job once they get their illness; the results from this study were consistent with this having to quit, retire or reduce work hours were common themes.

This could lead to financial problems as the income would decrease (Donalek, 2009).

Donalek (2009) found that employers were not understanding of ME/CFS and often people with the symptoms could not justify sick leave to their employers, almost half of the respondents had reduced their work or study hours to less than full time indicating that having ME/CFS can impact on the amount of income they receive.

In Australia the median weekly income is $466 (ABS, 2006), from these results it was found that those who were no longer able to work or had to reduce working hours were more likely to earn below $400 which would indicate they are earning below the average income for Australians.

Employment and income are identified as being crucial to mental health, going to work gives people a chance to have interaction with others and have social relationships that are crucial to avoiding mental health issues (Marrone & Golowka, 2000).

Unemployment and low-income on their own are risk factors for mental health problems (Marrone & Golowka, 2000).

The sample population in this study has high rates of unemployment and low income which indicates that they are high risk groups for these issues including social isolation.

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There was a low response rate in the survey from people living with ME/CFS who are also students, before diagnosis there were far more people studying however only 12 respondents indicated that they were currently students.

Similarly with those who were still working the people who are studding cut their study time down to part time, the students also had to lower the expectations of themselves in regards to achievements and future prospects.

This can impact later in life as the students may not get jobs they want in the future and cause a reduced job satisfaction which could in turn lead to mental illness (Marrone & Golowka, 2000).

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Overall there was a strong feeling that the respondents work and study had been impacted because on ME/CFS.

One major concern with regards to social isolation is that a common theme by both the people working and the students was that work and study took priority over social life and after working of going to school there was no energy left to interact outside of this situation.

Ware (1999) identifies that the more people with a chronic illness (in particular CFS) cannot participate and do what the society expects them to the more isolated they become from that society, for example it is socially expected to constantly engage in social activity but a lack of energy prevents this so the person with the illness becomes further socially isolated.

 

[Dolphin]

3.3 Lifestyle

Most the respondents felt that ME/CFS had an impact on how they lived their life; daily activities were impacted on as the effects of the illness prevented participation in everyday activities.

Social activities such as shopping, eating out, visiting others and going to movies or other events were found to reduce once people have ME/CFS, this can lead to marginalization within a community as social contact with others is not being maintained (Ware, 1999).

The survey revealed that while people living with ME/CFS cannot participate in activities outside of the home they would prefer to be able to do other activities such as housework, exercising and caring for family which gives an indication of disability levels.

The New Zealand Social Report (2009) identifies a number of indicators for social connectedness, one of which being how often someone engages in regular contact with family and friends the survey revealed that going out socially was not a possibility for many respondents as they had found difficulty doing many social activities since being diagnosed with ME/CFS.

This would again put people living with ME/CFS into a risk group for the mental health issues involved with social isolation (New Zealand Social Report, 2009).

 

[Dolphin]

The survey revealed that people living with ME/CFS often find it easier to not even try to be social with others as they are embarrassed and afraid of friends and family member’s reactions once they have to cancel, many indicated that scheduling activities was not a possibility due to the unpredictability of the illness.

This is consistent with Ware (1999) who also found that people living with chronic fatigue syndrome would not want to schedule going out because not going at all was less feared than having to cancel on someone.

 

[Dolphin]

3.4 Indicators of Social Isolation

Interaction with others is crucial as otherwise people become socially isolated leading to mental health issues such as depression (Pinikahana et al., 2002), the results show that while contact with family is common with people living with ME/CFS interaction with other people such as friends, neighbours and co-workers is lacking.

It can be concluded that people value family time more than friendships when living with ME/CFS as there was a common theme that many would use what little energy they had on maintaining family relationships and interacting with the people in their household.

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Overall there was a strong feeling that people with ME/CFS were socially isolated and lonely, for most not due to a lack of income however due to an inability to work or socialise, a lack of connection with others and a feeling of loneliness can lead to social isolation and a lack of connection with the community (New Zealand Social Report, 2009).

It is the sense of belonging that gives the feeling of inclusion, when people are not connected with their families and friends they are not included which is problematic (New Zealand Social Report, 2009) and this can be seen in the responses by the survey participants as they are distant from friends and have a sense of isolation.

Many of the respondents were not happy with the friendship groups and numbers they had, they felt they were limiting and that their life was very different from other peoples.

Positive relationships where there is a mutual trust and understanding is another indicator of social connectedness as identified by the New Zealand Social Report (2009).

Not only did the respondents indicate that they did not feel that the people around them (including family and friends) understood their illness they felt that the health professionals were also untrustworthy and society to be overall discriminatory indicating that they would not be socially connected when using the indicators from the New Zealand Social Report (2009).

 

[Dolphin]

When accessing support services the responses from the survey were mixed, with some feeling that they were confident in asking for help and others not being confident.

Social relationships are important for support both through directly asking for help and also through getting assistance in knowing what services are available (New Zealand Social Report, 2009).

The wider community was identified as being problematic when it came to accessing support and due to frustration and previous bad experiences people had given up on trying to access support services.

To get disability support from the government the person applying needs to look like they cannot work more than 15 hours a week, this has recently changed from 30 hours in 2006 (Morris, 2006).

Commonly people identified that they could not access this service because when being assessed they did not look “disabled” and the assessor had little knowledge of ME/CFS.

 

[Dolphin]

Another barrier was that computers and phone do not react positively with some of the symptoms of ME/CFS, it was indicated that phone conversations were hard as they were tiring and looking at computer screens worsened symptoms.

 

[Dolphin]

While a number of people could drive access to transport when they were too sick to do so was inadequate. It is important for people to be able to get out and see other to prevent social isolation, however functional impairment in people with ME/CFS can prevent them from being able to drive and use public transport and taxis (Wessely, Chalder, Hirsch, Wallace & Wright, 1997). It was identified that taxis are too expensive for people on a low income with ME/CFS and other forms of transport were tiring, too noisy or too crowded with nowhere for the people with ME/CFS to sit.

 

[Dolphin]

4. Conclusions and Recommendations

This research revealed that ME/CFS is a problematic biological chronic disease that can have severe mental implications, especially in relation to social isolation. The research has revealed that people living with ME/CFS can suffer high levels of social isolation which could lead to further mental health issues and disability. The New Zealand Social Report (2009) identifies five indicators of social connectedness which are;

 telephone and internet access at home

 how often they are engaged in regular contact with family and friends

 levels of trust people have in others

 the proportion of the population who report experiencing loneliness

 And contact between young people and their parents.

The indicators relevant to the population of people living with ME/CFS are telephone and internet access in the home, engaging in regular contact with family and friends, trust in others and the feeling of loneliness. It was found that the population with ME/CFS was in risk groups for all these indicators. Key problems with having ME/CFS in relation to Social Isolation are that the nature of the disease means that people are not able to work and be active within society to a level that someone without the illness would. An inability to work an study was identified as causing people to feel isolated as they lost the contact with others that being in a work or study environment allowed and also a purpose and a sense of contribution and future goals were lost.

There was a lack of trust between people with ME/CFS and society including employers, friends and family and the health professionals. It was found that people living with ME/CFS have to cope with the barrier that people do not understand the complexity of the illness, Pinikahana et al., (2002) found that people who do not actually live with the illness do not understand it, especially as people generally look well, and this was consistent with the findings in this report. Daily life for people with ME/CFS is significantly impacted upon and normal social activities loose priority in people’s lives as they struggle to do things they think are necessities such as shopping, housework and looking after family. It was found in this study that people generally maintained good relationships with family members when they were diagnosed with ME/CFS however friendships were harder to keep up. Many lost friends due to the fact that they would not like to schedule meetings as they were unsure if they would be unwell on the day and did not want to have to cancel.

Overall here was a great sense of loneliness among the people in the study; there were problems in that there was a lack of contact with others and society in general is not supportive of a disease such as ME/CFS which creates further isolation for those living with it due to a great lack o support. There were limitations to this research as it was only able to be implemented electronically via the internet. The sample may not have been reflective of those who are the most socially isolated as internet connection is identified as being a facilitator of social connection (New Zealand Social Report, 2009). The people who took the survey were also in a relatively well range on a disability scale, these people identified that there were problems in using the computer so the people who are worse off may not have been physically able to take the survey.

The following are recommendations for future research and action to prevent people with ME/CFS form becoming socially isolated;

 Further education for the health professionals and government support services such as Centerlink on ME/CFS and its symptoms.

 Greater amounts of education material and resources for the friends and family of people with ME/CFS. This could include a guide to what people can do to help and what they shouldn’t do, ideally this could be written by someone with ME/CFS in collaboration with a family member or friend they have found supportive during their illness.

 Look at making phone and the internet more accessible for people with ME/CFS through government funding and assistance.

 As some people seem to be coping well living with ME/CFS they could act as support and give advice to others that are not as well or have been recently diagnosed.

 

[Dolphin]

The full text is at:
http://emerge.org.au/dev/wp-content/uploads/2014/11/ME-CFS-social-isolation-report-2010.pdf



Extract:


*They're now called Emerge Australia

This has a new link: http://emerge.org.au/wp-content/uploads/2014/11/ME-CFS-social-isolation-report-2010.pdf