Preferences for self-care

Service users were asked to choose up to three types of self-care support which they would find most useful helping to manage their particular condition(s). The categorisation for the types of self-care support was derived from government guidance (DH, 1998). In addition alternative therapies were included due to their popularity as part of self-care for people with chronic conditions (Thorne et al., 2002). These categories of self-care support replicated those in the survey to managers as noted in Chapter 4.

Table 7.2 Focus group participants – self-care service priorities (n= 47)

n %

Alternative therapies

Being able to talk to someone Special equipment

A course for people with the same condition Information leaflets

An informal self help group

A course for people with all types of conditions

26 26 20 19 18 16 10 55 55 43 40 38 34 21 Source: Which three things do you think would be most useful in helping you manage

this condition?

Table 7.2 reveals that alternative therapies and being able to talk to somebody about their condition were identified by the majority of participants as most helpful in the management of a long-term condition. Alternative therapies were seen as particularly important to those respondents we asked from the LMCP Care Link group, which primarily provides support to service users and carers within the Asian community, possibly because these therapies have a more established role in self- care in different cultures. A course for people with all types of conditions was the least preferred option with participants favouring support groups focused on a particular condition:

Interviewer: “And what was so useful about that, was it meeting similar people?

Interviewee 7: It was meeting similar people, sharing experiences, sharing how you cope with it and generally getting the feel of what was likely to happen in the future so that you were prepared for it.”

Focus Group 1

Some people found it useful to chat to other people with the same problems and share experiences rather than be taught information by a group leader:

 Queen's Printer and Controller of HMSO 2010 175 Interviewee 4: “There’s a lot of pressure I think if it’s a course, if you’re all just friends together its better, if you’ve got a leader it’s a lot more formal. You’ve got enough to be going on with without having somebody tell you what to do.”

Focus Group 1

However, it was acknowledged that attending a more generic group like the Expert Patient Programme - a course for people with all types of conditions- may also be useful but mostly as it might be a good way to meet people with similar

experiences.

In view of the small numbers involved in Table 7.3 no percentages have been recorded. Nevertheless it demonstrates that focus group participants clearly identify that the types of self-care support most valued by them varied by condition.

Special equipment was most popular with people with breathing problems and perceived as least useful by people with osteoporosis. Alternative therapies were most popular with those who had experienced stroke and least popular with those people with diabetes. Information leaflets were most popular with those with mental health problems and least popular with those with respiratory problems. Having somebody to talk to about their condition was important to all the people who had experienced a stroke and of least importance to people with arthritis. The availability of a group for people with the same long-term conditions was seen as useful by people with diabetes, but less so by people who had experienced stroke. A generic course was seen as most useful by people with respiratory problems and least useful by those with mental health problems. Informal self help groups were seen as useful by more respondents who had experienced stroke and least useful by those with respiratory problems.

The number of conditions each respondent experienced was recoded to show those with three or more and those with less than three. The preferences for different types of self-care support were then compared for the respondents in these groups. Those with more than three conditions were significantly (p=0.05) more likely to prefer having the opportunity to talk to somebody about their conditions and those with fewer conditions significantly more likely to prefer information leaflets

(p=0.05). This appears analogous to previous research that found that when people complete self assessment they often preferred another person to be there to assist them, particularly if they had greater needs (Challis et al., 2008b).

More generally there were mixed views on whether people should be expected to take part in self-care activities. Some participants thought that professionals did not have high expectations of patients’ ability to understand and be able to manage their condition(s):

Interviewee 2:”The doctor has never explained anything to me, theconsultant has never explained exactly what could be done and I think that the doctors here don’t give people enough credit for having intelligence.”

Focus Group 1

Whereas other respondents felt there was often an assumption by medical staff that patients would do their own research prior to seeking professional advice: Interviewee 4: “Do you not feel that the nurses, doctors, whatever, have a high

 Queen's Printer and Controller of HMSO 2010 176 for, they’re expecting you to tell them but the expectation is that you should know what’s wrong with you and be responsible for your own care. So there’s a responsibility on you?”

 Queen's Printer and Controller of HMSO 2010 177

Table 7.3 Priorities for self-care services by condition (n=47) Special

equipment Alternative therapies Information leaflets Being able to talk to

someone A course for people with the same condition A course for people with all types of conditions An informal self help group n n n n n n n Range of conditions Arthritis/rheumatism (31) 15 21 10 17 10 5 12 High/low blood pressure (23) 11 15 8 15 10 4 14 Diabetes (16) 8 7 4 10 10 3 10 Heart problems (14) 8 8 4 10 4 3 9 Depression/mental health (11) 4 7 4 9 3 1 6

Chest and breathing

problems (9) 6 6 1 5 5 3 1 Stroke (6) 3 5 1 6 1 1 5 Osteoporosis (4) 1 2 - 3 2 1 - Number of long standing health problems n (%) n (%) n (%) n (%) n (%) n (%) n (%) Up to 3 (24) 3 + conditions (23) 8 (33) 12 (52) 12 (50) 14 (61) 13* (54) 5 (22) 10* (42) 16 (70) 10 (42) 9 (39) 5 (21) 5 (22) 8 (33) 8 (35)

 Queen's Printer and Controller of HMSO 2010 178 *significant at the 0.05 level

Source: Do you have any long standing health problem, disability or infirmity?

 Queen's Printer and Controller of HMSO 2010 179 Patients having the chance to learn more about their condition through self-care support was seen by respondents as a way of allowing people to choose to take more responsibility for managing their condition(s) if they wished to:

Interviewee 3: “The attitude used to be people didn’t need too much information but the world has changed enormously… I think there are some conditions where people don’t want to know what’s down the road so people must choose.

”

Focus Group 3

Several other issues important to respondents, were identified in the wider discussion around service users’ experiences of self-care support, these were information, transport and practical help. Information about both the condition and the support services available was perceived as being useful but not always available. It was thought that health professionals did not always provide this and it was often not available in other languages if appropriate. Many participants had found information available on the internet but acknowledged that not everybody has access to such resources:

Interviewee 4: “When I last went to the doctor I was encouraged to look it up on the internet, which I didn’t mind.

Interviewee 2: But how did they know you were on the internet? I mean I’m not on the internet.

Interviewee 3: A lot of older people don’t have the internet.”

Focus Group 1

Transport to hospital appointments, and to a lesser extent self-care groups, was an important issue for participants, particularly those with no family locally who may be reliant on taking taxis:

Interviewee 1: “I had to go back to hospital so it cost me £60 in a taxi for a round trip, twice in two days.”

Focus Group 3

Existing patient transport schemes were reported to be not always well organised: Interviewee 4: “It’s phenomenally badly arranged, you can spend a day in the bus and if you have health problems…

Interviewee 5: You see in X____ we have a community transport organisation and a community car scheme that’s fine but not here in X____.

Interviewee 1: You see I had a letter saying if you need help with transport get in touch with your doctor… Surely they can work out a system at the hospital where if people need transport they can fix it up there and then for the next appointment.”

Focus Group 1

There were particular issues raised regarding transport in rural areas, particularly with regard to attending hospital and GP appointments and self-care support groups.

 Queen's Printer and Controller of HMSO 2010 180 Overall, the willingness of service users to engage with self-care support was there, but the potential for participation was limited by the more practical barriers of

transport and lack of day to day help with activities of daily living. This suggests that if these were perceived as a problem for focus group participants this would be magnified for older, less mobile service users with higher levels of need.

Interviewee 4: “I think it’s about mobility and transport more than anything, I don’t think it’s just about age, that’s not an issue. But if they can’t get there, there is a problem.”

Focus Group 3

The use of telemedicine was perceived as helpful with regard to the management of long-term conditions particularly in rural areas:

Interviewer: “Would you like a computer that did your blood pressure?

Interviewee 1: I think it would be very useful.

Interviewee 3: Diabetes services have a technology system and people have got used to various sorts of tests, some of which are carried out at home and monitoring your own results.

Interviewer: But people have appreciated it?

Interviewee 3: Oh yes, they love it.”

Focus Group 3

However, some focus group participants did not like the idea and would feel like they were being ‘watched’:

Interviewee 1: “As long as people don’t think its big brother watching you?

Interviewer: Would you be comfortable with that in your home?

Interviewee 3: Oh no.

Interviewee 1: There’re people who wouldn’t be comfortable.

Interviewee 3: I just wouldn’t, it’s like you said, it’s like big brother.”

Focus Group 2

Practical help with housework, shopping and banking were described as crucial to people who have been unwell, particularly after a hospital admission. Participants reported such services as being hard to access either through health and social services or via private arrangements:

 Queen's Printer and Controller of HMSO 2010 181 Interviewee 1: “There’re all sorts of basic needs that aren’t being met for people who live by themselves.

Interviewee 4: Is that part of the health service or social services?

Interviewee 1: I rang and they gave me the name of this woman charging £12 an hour but she was fully booked. There’s a great need for these basic things.

Interviewee 3: I was laid up before Christmas. And the two things that bothered me were shopping and eventually it was going to be cash because I only had so much…

Interviewee 1: That’s another problem, getting to the bank…

Interviewer: So it sounds like these are very practical day to day things?

Interviewee 1: These are things that matter.

Interviewee 4: I mean I’m not looking forward to 6 weeks after the operation when they’ve told me I mustn’t do anything, I live on my own, I’ll have to do something…”

Focus Group 1