Results of our Evaluations Positive Care Programme 2006-2009

 Results of our Evaluations
Positive Care Programme 2006-2009
 
I just think it should be on a doctor’s prescription for everyone’s wellbeing

Summary

The Positive Care Programme seems to have long-term benefit for people with long-term illnesses and carers, in the following ways:
Highly statistically significant long-term benefit has been found in two different quality of life measures


Of those who completed the programme:

  • 39% of participants said that they visited their GP less often
  • 32% were able to reduce their medication
  • 94% stated that the programme helped them to understand how their lifestyle affected their health
  • 91% made positive changes to their lifestyle to improve their health
  • 92% thought their mental well-being had improved
  • 90% said they now take more responsibility for their health
  • Etc… See below for more positive results
 

'I think it is a really fantastic project that helps people with all aspects of their lives. The therapies and workshops are really inspiring and everybody is so friendly and positive. It was a lifeline to me at a really difficult time in my life, and has definitely helped with my recovery. It would be great if it could be extended to help people all over the country’ (A Participant)

 
What is the Positive Care Programme?
The Positive Care Programme (Registered Charity Number: 1112401) is a 24 week* course of complementary therapies and motivational workshops for people over the age of 18 years, who have long-term illness and carers. It is based on the principle that people are made up of body, mind and spirit and all these need attention for wellbeing.
 
Our Evaluations
The following is a combined summary of the evaluations of the 2006 to 2009 Positive Care Programmes. In these four years:
 
Participants
205 people(167, 81% women; 38, 19% men) enrolled onto the programmes. Of these:
  • 179 people were aged 18-64 and 26 were aged 65+
  • 91 % were people with long-term illness and 25% classed themselves as carers (and most of these also had long-term illnesses). 48% classified themselves as having a disability
  • The majority of participants had mental health problems (80%). 72% had both physical and mental health problems; 8% had mental health problems alone and 19% only had physical problems**.
  • Of the mental health problems: 60% (122/205) participants had depression / low moods and 53% reported suffering from stress and 31% from panic attacks.
  • Of the physical illnesses: the biggest single symptom was pain (122/ 205, 60%); 38% participants suffered from headaches, including migraines; 31% had respiratory problems (e.g. asthma); 29% had restricted mobility and 28% had bowel problems; 27% had arthritis; 24% had allergies ranging from the mild to severe; 20% had high blood pressure and 20% asthma; 18% had skin conditions; 15% had tiredness symptoms (ME and Chronic Fatigue Syndrome).
  • Ethnicity was as follows: White British – 133 (65%), White Irish - 5, White Other - 14, Black Caribbean – 11, Black African - 1, Black Other - 2, Asian Indian – 21, Asian Pakistani -11, Asian Bangladeshi - 1, Other Asian background - 3, Mixed ethnic background : White and Black Caribbean – 1, White and Asian – 1, Other ethnic background – 1
 
‘I think this has been very beneficial to my general health and wellbeing….It’s excellent!! I’ve started to laugh again. It’s helped me get out the house more. As I had become agoraphobic and my anxiety was getting worse. This is not as bad now… and I have taken charge with some of my life as I have stopped smoking for 4 weeks.….I have noticed a great improvement in my memory, confidence and happiness (I’m not crying as much). Thank you’. (A participant)
 
About the Evaluation Measures
We asked participants to complete health-related quality of life questionnaires (HRQOL) when they started the programme, and again following 24 weeks after enrolment, to record change. The questionnaires used were:
a) COOP/ WONCA1 measure of functional status, which records the following topics as visual charts (physical fitness, feelings, daily activities, social activities, changes in health, overall health). This scale is particularly useful in a multi-ethnic environment as it does not rely solely on language to convey meaning, but also uses visual pictures and matchstick figures.
b) MYCAW2 (Measure Yourself Concerns and Wellbeing) is an individualised outcome tool which gives the participant a voice in assessing the impact of their care. This records patient identified problems which might not be addressed by a generic HRQOL tool. E.g ‘itchy scalp’, ‘lacking meaning in life’.
c) In addition we used a questionnaire (‘You and Your Project’), specifically designed to ask participants about the components of the programme, so that we could identify which parts they found most and least beneficial.
 
Results after 24 weeks (the first year of the programme)
We do not expect people to attend every session over the 24 weeks and therefore we consider attendance between 12 and 24 times to be full attendance.
  • 17% (34/205) only attended 1-3 times
  • 21% (43/205) attended between 4 and 11 times
  • 62% (128/205) attended between 12 and 24 times (‘full’ attendance)
 
We had estimated that one third of participants would hardly attend at all, one third, for half the expected time and a third would fully attend. The fact that many more people attended than expected is very pleasing.
After approximately 24 weeks of the programme, we asked participants to complete the two HRQOL questionnaires again. There was a 90% follow-up rate (184/205).
 
‘This has been a life changing experience for me. Learning powerful techniques to relax, strengthen, soothe and empower. Biggest lesson has been putting ‘myself’ first. I now make decisions after consulting ‘myself’ rather than everyone else and I have the strength to say ‘no’ to requests. I am learning, through the techniques to slow down, address problems and deal with them. Before, I ran headlong into everything and thrashed about (physically and emotionally) until exhausted’.
(A participant)
 
COOP-WONCA Results
These results represent improvements in general mental, physical and social health.
 
The best possible individual score = 6 and the worst possible individual score = 30
Taking all participants, irrespective of attendance (This gives a very conservative result):
  • Mean baseline score = 20.1 (205 participants)
  • Mean follow-up score = 17 (184 participants)
 
Thus overall, mean scores improved to a highly statistically significant level (p<0.001) at the end of the first 24 weeks of the programme.
 
MYCAW Results
The MYCAW results represent improvements in the concerns which participants stated were the ones with which they would most like to have help.
 
The best possible individual mean score = 0 and the worst possible individual mean score = 6
Taking all participants, irrespective of attendance (Again, this gives a very conservative result):
  • Mean baseline score = 4.6 (204 participants (1 baseline score missing))
  • Mean follow-up score = 3 (183 participants)
 
Thus overall, mean scores also improved toa highly statistically significant level (p<0.001) at the end of the first year and the largest improvement was in the group which attended fully (a mean score of 2.75). Those who attended between 4 and 11 times improved to a lesser extent (a mean score of 3.7) and those who only attended 1-3 times had scores which were similar to those of when they enrolled (a mean score of 4).
 
‘Being on the PCP has helped me to accept and cope with my condition better, which has improved my confidence and outlook on life’ (A participant)
 
 
Results a year after the programme completed
 
In the second year of the programme, participants were invited back for 6 weeks during the year. The results of the health related quality of life questionnaires for the people who completed the whole programme in 2007 and 2008 combined, are as follows (the long-term 2009 results are not yet available):
 
COOP-WONCA Results
The best possible individual score = 6 and the worst possible individual score = 30
Taking all participants, irrespective of attendance (Giving a very conservative result):
  • Mean baseline score = 20.15 (97 participants)
  • Mean year 1 follow-up score = 17.3 (92 participants, 95% follow-up rate)
  • Mean year 2 follow-up score = 17.55 (68 participants, 70% follow-up rate)
 
This demonstrates that improvements in general mental, physical and social health have continued over the two years since people were first enrolled onto the programme, to a highly statistically significant level (t=4.0 p<0.001). This indicates that the Positive Care Programme appears to have long-term benefit.
 
MYCAW Results
The best possible individual mean score = 0 and the worst possible individual mean score = 6
Taking all participants, irrespective of attendance (This gives a very conservative result):
  • Mean baseline score = 4.6 (97 participants)
  • Mean year 1 follow-up score = 3.2 (91 participants, 94% follow-up rate)
  • Mean year 2 follow-up score = 3.15 (64 participants, 66% follow-up rate)
 
These results demonstrate continued improvements in the concerns which participants stated were the ones with which they would most like to have help, over the two years since people were first enrolled onto the programme. Again, these results are highly statistically significant (t=4.9 p<0.001) and indicate that the Positive Care Programme appears to have long-term benefit.
 
‘It helped me to rediscover my artistic side and realise that life is actually worth living!’ (A participant)
 
You and Your Project Questionnaire
Ninety participants who had attended sufficient times to enable them to evaluate the effectiveness of the programme completed this questionnaire.
The table below outlines how participants viewed the programme:
Numbers of participants (n =121) whoagreed or strongly agreed that PCP had helped to:
Understand how my lifestyle affects my health
114 (94%)
Improve my mental wellbeing
111 (92%)
Make +ve changes to my lifestyle to improve my health(1 participant did not answer this question)
109 (91%)
Take more responsibility for my health
109 (90%)
Understand what causes stress in my life
104 (86%)
Cope better with stress
100 (83%)
Improve my physical wellbeing
99 (82%)
Improve my self confidence
96 (79%)
Socialise more with other people
93 (77%)
Do more of what I want to do
89 (74%)
 
‘I feel blessed to have been able to attend such a positive programme. I have definitely found that my feeling of wellbeing has improved no end! I have been able to try almost everything and have found some therapies that really work for me that I will carry on with’
(A participant)
 
Number of visits to GP
Participants were asked, how often they now needed to visit their GP and was this less often / more often / the same as before they started the Positive Care Programme?
39% (44/114) said that they visited less often, 53% (60/114) the same, 4% (5/114) more often and 4% (5/114) unclear or stated not applicable.
 
‘It has given me other types of treatment to help give me some relief other than pills, etc and I enjoyed meeting other people with similar problems’ (A participant)
 
Reduction in Medication?
This was not encouraged in the programme (and indeed, not expected as many participants required on-going medication e.g. to control diabetes), but the question was asked out of interest. Considering that participants had long-term illnesses, we were pleased that 32% were able to reduce their medication (mainly painkillers, antidepressants, sleeping tablets and anti-inflammatory medication).
 
Participants were asked, ‘Have you been able to able to reduce the amount of medication which you take?’
32% (29/91*) said Yes
1% (1/91) temporarily only
67.% (61/91) said No
 
*[Not included were: 26 - who were not taking medication and 24 - who did not answer this question]
 
‘This is a great workshop which the GP practices / NHS should adopt; a lot more people would benefit from all you’ve offered’ (A participant)
 
‘My general wellbeing has improved this winter - I’m far less stressed and depressed, less frustrated too. Thanks!’ (A Participant)
 
 
 
Conclusion
Numbers in the study are relatively small and the results can only be said to be suggestive, nevertheless, both quantitatively and qualitatively, for the fourth year running, we have demonstrated that the Positive Care Programme benefits the participant’s wellbeing.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Footnotes
*The course was previously 30 weeks in length (24 weeks in the first year and 6 weeks in the following year to help continue motivation). The last 6 weeks was discontinued for the autumn 2008 intake as we had found that people had moved on with their lives and did not appear to have the need of this extra course time; reducing the length of the programme also helped to save funds.
**2 carers did not report any health problems
 
References
 
  1. Beaufait, D. W. et al. Research Methods for Primary Care. 1992;2:151-167
  2. Paterson, C. et al Complementary Therapies in Medicine 2007;15:38-45
 
 
Thanks
We would like to thank all the participants of the Positive Care Programme who completed the evaluation forms. Their contributions are much appreciated.
Also thanks go to Philip McShane, Medical Statistician of the Clinical Trials Research Unit, University of Leeds, who performed the statistical analysis.