FAMILY EDUCATION IMPACT QUESTIONNAIRES – INTRODUCTION
introduction and distribution
In an ideal situation, the impact of carer education programmes like CESP and BEST would be evaluated by comparing individuals who had been involved with education courses, either as attendees or co-facilitators, to individuals who had not been involved in any way. However, due to limited resources and an appreciation that so many other factors could have an impact on such comparisons, this study was designed to ask carers and co-facilitators to self-report on the impact they felt attending/co-facilitating an education course had had on them, their family, and/or working practice.
The hypothesis for this Impact Study, and in particular the Questionnaires, was that carer education has a positive, and long-term, impact on all parties concerned – the course attendee, the individual they support, and the co-facilitator. A hypothesis is a tentative prediction of a study’s findings, usually formulated before data collection, and while a study like this cannot provide proof that a hypothesis is true it can, and indeed has in this instance, added evidence to support it.
From the earliest stage of the Impact Study, it was agreed that two separate questionnaires were needed in order to gauge the impact of carer education on a) the course participants and b) the course co-facilitators.
The two Family Education Impact Questionnaires (one for attendees, one for course facilitators), as seen in Appendices F and G respectively, were both initially drafted by First Resource before going to the Bucks Network Group for comment and input, as were the tailored covering letters for each (Appendices H and I). For ease during this Report, the Impact Questionnaire aimed at course attendees will be referred to as the Carer Questionnaire, and the Questionnaire aimed at course facilitators will be referred to as the Co-facilitator Questionnaire.
It was acknowledged that a few of the co-facilitators would receive both formats of questionnaire as they had initially attended a course as a carer attendee before moving on to becoming a carer co-facilitator. This situation was addressed in the covering letter that accompanied the Co-facilitator Questionnaire, as seen in Appendix G.
Once content was agreed, copies of the Carer Questionnaires were sent in bulk to three key co-facilitators – two who are based with Carers Bucks and one who is an employee of Buckinghamshire Mental Health NHS Trust. Between them, the three key facilitators had been involved in all of the carer education programmes that had been delivered in Buckinghamshire and it was agreed that they would be the final point of distribution to carers – not only did this maintain confidentiality in terms of attendees’ contact details, it allowed for (limited) personalisation of the covering letters.
Alongside the Carer Questionnaires and covering letter (personalised by the key facilitators with their contact details) carers were sent a Freepost addressed envelope for easy postal return and a flyer advertising the Impact Study Conference (Appendix J), as discussed in a separate section within this report. In a similar way, the Co-facilitator Questionnaires were sent in bulk to one of the above key co-facilitators, as this individual also held an over-arching responsibility for commissioning and co-ordinating carer education programmes and held contact details of all the co-facilitators. Co-facilitators received a personalised covering letter, the Co-Facilitator Questionnaire, a Freepost addressed envelope and a Conference Flyer.
IMPACT QUESTIONNAIRES – COURSE ATTENDEES
Aim
The aim of the Carer Questionnaire was to measure whether attending a CESP or BEST course had led to:
a positive change in attitude towards mental illness;
an increased understanding of mental illness and the impact on the service user;
a positive change (growth/confidence) in coping skills;
an improved relationship with the person they support;
an improved relationship with professionals.
It was important to gain feedback on other aspects of the course also (for example content and structure) and the questionnaires gave respondents opportunity to raise other issues that were important to them and give comments that may influence the future development of carer education in Buckinghamshire.
Design
The Carer Questionnaire was divided into two sections, Part One and Part Two. Part One asked respondents general (closed) questions about themselves – gender, age, relationship to individual supported, and so on. Part Two was devised to ask respondents about the course they had attended, and used a mixture of closed questions, rating scales and open-ended questions in order to receive opinions and subjective judgments alongside yes/no responses. A mid-point was included in the primary rating scale section (regarding 14 statements) as this option can reduce frustration in the respondent and allows for a neutral response to be given – if a respondent feels forced into one response or another there is a risk that they will not respond at all.
Who responded to the survey?
Approximately 95 copies of the 5-page questionnaire (incl. one page of introduction) were sent out to carers who had attended a CESP or BEST course in Buckinghamshire, since such courses started in the county in 2001. 44 completed questionnaires were received, giving a respectable 46% response rate.
The analysis presented below is based on summary statistics and on the feedback received from open-ended questions. It cannot be assumed that these responses are representative of all course attendees, and it must be acknowledged that those who decided to respond to the questionnaire may have done so because they had gained a particularly positive experience of carer education.
Table 1: Demographic Information of Carers (n= 44)
GenderFemale / 33 (75%)
Male / 10
Unknown / 1
Age
Range of Age / 48 yrs – 79 yrs
Greatest % (43% of respondents) / 60 yrs – 69 yrs
Average Age / 57.5 yrs
Length of Time Caring
Range / 7 months – 50 yrs
Greatest % (34% of respondents) / 1 – 5 yrs
Average / 9 yrs and 10 months
Ethnicity
White British / 37 (84%)
White Other / 5
White Irish / 1
Indian / 1
Table 2: Demographic Information of Person Supported (n=44)
Relationship to CarerOffspring* / 39 (89%)
Partner / 2
Parent / 1
Friend / 1
Unknown / 1
Age
Range of Age / 20 yrs – 76 yrs
Greatest % (43% of respondents) / 26 yrs – 35 yrs
Average Age / 33 yrs
Diagnosis
Known by respondent / Yes = 40 (91%)
Schizophrenia / 24 (60%)
Psychosis / 4
Bipolar/Manic Depression / 4
Schizo-Affective / 3
Anxiety/Depression / 1
Unstated Diagnosis / 4
Of all respondents, nearly 90% attended as a parent
Of the 39 respondents caring for a child, 67% are caring for son, 28% are caring for a daughter (5% caring for child of unspecified gender)
Nearly half of all respondents (45%) were mothers caring for their sons
beneficial impact – key findings
“I feel much better equipped in dealing with situations and not so scared anymore.”
“I feel stronger, on the whole more able to cope.”
“Given me confidence to care, because I no longer feel alone.”
Carer Questionnaire respondents
A pivotal part of the questionnaires was to gauge whether carers believed that attending the education course had positively impacted upon themselves, the person they support and other family members – and if so, how.
Table 3 – Beneficial Impact of Attending on Carer and other Family Members
In your opinion,do you feel that the course has had a beneficial impact on…:
You? / The person you support? / Other Family Members?
Yes / 95% / 68% / 68%
No / - / 25% / 23%
No answer / 5% / 7% / 9%
In addition to ‘yes/no’ response type questions, statements were given within the questionnaire with which respondents could:
strongly agree
agree
neither agree nor disagree
disagree
strongly disagree
6 of these statements were aimed at identifying the beneficial impact the course had had on the respondent themselves, from gaining information to meeting other carers. Table 4 highlights the positive feedback received to these 6 statements in particular.
Table 4 – Statements re. Beneficial Impact of Attending - on the Carer
Statement / Strongly Agreed or Agreed (%)I received a lot of new information on the course / 93%
The coping skills explored on the course have been very useful to me / 68%
Meeting other carers was the best part of the course / 75%
I am better able to cope with caring / 70%
I look after myself more than I did before / 57%
I am more confident that I can access the support needed to overcome future challenges / 77%
Within the ethos of both CESP and BEST is the belief that greater understanding of mental illness and of the service user experience is beneficial not only to the carer, but to the person being supported also. As family members gain knowledge, share experiences with other carers, and learn about new coping strategies, confidence can grow and family members report that they are better able to cope with caring, as seen above.
“Being more patient with him and understanding how he feels and thinks.”
“We understand each other – I am no longer frightened of her illness.”
“She now has a more relaxed mum and communication has improved greatly.”
Carer Questionnaire respondents
68% of respondents believed that there had been a beneficial impact on the person they supported as a result of attending a CESP or BEST course, and this figure can be supported with the following analysis also. For each statement detailed in Tables 4 & 5, less than 11% of respondents actively ‘disagreed or strongly disagreed’.
Table 5 – Statements re Beneficial Impact of Attending – Person Supported
Statement / Strongly Agreed or Agreed (%)I am better able to support the person I care for / 75%
I better understand the experience of the person I care for / 77%
Communication has improved between the person I support and myself / 47%
It is hard to measure the benefits other family members may experience as the result of at least one of them attending an education course, and it must be acknowledged that the carer questionnaire respondents are giving their opinion about a third party.
However, the feedback is still extremely valid and it is worth noting that 68% of respondents felt that there had been a beneficial impact on other family members – see Table 3.
“Everyone seems to be responding well to the communication strategies.”
Our other children and families follow our lead and very supportive. They have read the course material which they found very helpful.”
“Family unit has begun to come back together again.”
Carer Questionnaire respondents
For many decades the fallacy existed that family members caused mental illness, or at least made it worse, and this perspective has had a particularly detrimental effect on the relationship between family members and mental health professionals. Fortunately, this viewpoint is gradually being consigned to the history books, and families are increasingly being valued as important partners in care who can have a positive role in the recovery of the person they support. An improving relationship between families and mental health professionals is emerging, and this is seen as being beneficial to all parties.
“Carers are an integral part of the patient’s support system...They are the ones with the day-to-day experience of the patient’s condition, and they carry the most intimate responsibility for the patient’s welfare...The carer’s voice in decision making about admission and discharge is ignored at everyone’s peril -and yet so often is.”
Dr. Mike Shooter, President, Royal College of Psychiatrists
(Partners in Care Campaign, Royal College of Psychiatrists & Princess Royal Trust for Carers)
Feedback from the questionnaires showed that just over 68% of respondents felt that attending a CESP or BEST course had been beneficial with regards to their relationship with mental health professionals.
Not only were relationships improving overall, but carers felt that they were more confident in communicating with mental health professionals. 61% of the respondents ‘strongly agreed or agreed’ with the statement “I am more confident in communicating with mental health professionals” – only 3 respondents actively ‘disagreed or strongly disagreed’ that this has been their experience.
“I see the professionals as friends now. I feel that we are all on the same side.”
“I am now learning to understand why they have and still do make certain decisions – when I have thought that they should have been done totally differently.”
“I feel more confident when discussing mental health issues with professionals.”
Carer Questionnaire respondents
There is still work to do on improving relationships with the mental health services, and feedback from some respondents highlights ongoing difficulties some families face when dealing with mental health services. This is an issue that will be addressed later in the Report. (where? – Challenges and Recommendations section then go onto Co-facilitator questionnaire in much the same way,)
Respondents were asked to list the three most important/useful aspects of the course for them, and over 90% (n=40) of respondents gave a total to 115 responses. The responses received fell into 10 broad categories, as listed below in Table 6. It is important to note that the top two categories – Meeting Others and Learning about Mental Illness – each account for a third of all responses, 33% and 32% respectively.
Table 6 – Most Important / Useful Aspects of the Course
Category / Number of ResponsesMeeting others, talking & sharing experiences / 38
Learning about mental illness / 37
Understanding the Service User experience / 9
Coping Skills – learning about and gaining skills / 6
Meeting and developing improved relationships with professionals / 5
Communication – learning about and improving skills / 4
Learning about the help and support available / 4
Receiving support from co-facilitators / 2
Importance of looking after self / 2
Other topics (with one response each) / 8
Respondents were asked to give their least useful / important aspects of the course also, and the feedback from this can be seen in the section entitled Challenges and Recommendations, along with other important issues raised through the Questionnaires.
IMPACT QUESTIONNAIRES – COURSE CO-FACILITATORS
Aim
The aim of the Co-Facilitator Questionnaire was to measure whether co-facilitating a CESP or BEST course had:
had a beneficial impact on the co-facilitator themselves;
led to improved relationship with families and carers;
resulted in increased understanding of the impact of mental illness on other family members;
led to changes and improvements in working practices.
It was important to gain feedback on other aspects of co-facilitating a course also (for example training) and the questionnaires gave respondents opportunity to raise other issues that were important to them and give comments that may influence the future development of carer education and co-facilitator training in Buckinghamshire.
Design
Like the Carer Questionnaire, the Co-Facilitator Questionnaire was divided into two sections, Part One and Part Two. Part One asked respondents general (closed) questions about themselves – gender, age, role/job title and so on. Part Two was devised to ask respondents about the courses they had facilitated, and used a mixture of closed questions, rating scales and open-ended questions in order to receive opinions and subjective judgments alongside yes/no responses. As before, a mid-point was included in the primary rating scale to allow a neutral response to be given.
A table of statements (to be rated by scale) was included in the Co-Facilitator Questionnaire, which was broken down into three sub-sections – Statements for Everyone, Statements for Carer Co-Leaders, and Statements for Carer Support Workers/Mental Health Staff. This breakdown was designed in order to take into account the differences regarding personal experience / background of the co-facilitators.
Who responded to the survey?
Approximately 15 copies of the 4-page questionnaire (incl. one page of introduction) were sent out to mental health professionals, carer support workers and carers who had facilitated at least one CESP or BEST course in Buckinghamshire. 12 completed questionnaires were received.
The analysis presented below is based on summary statistics and on the feedback received from open-ended questions. It cannot be assumed that these responses are representative of all co-facilitators.
Table 7 – Demographic Information of Co-Facilitators (n= 12)
GenderFemale / 8 (67%)
Male / 4
Role of Respondent
Mental Health Professional / 5 (42%)
Carer / 4
Carer Support Worker / 1
Carer & Carer Support Worker / 1
Other Professional / 1
Ethnicity
White British / 10 (83%)
White Irish / 1
Black African / 1
Table 8 – Courses Co-Facilitated
Course Facilitated / No. of Respondents InvolvedCESP / 14
BEST / 9.5 *
Unknown (which of the 2) / 1
(* - Midway through co-facilitating a BEST course at time of response)
beneficial impact – key findings
Co-facilitators were asked whether they had noted a beneficial impact on themselves, the individuals they support, and working practices as the result of co-leading a course. The feedback was very encouraging:
Table 9 – Beneficial Impact of Co-Facilitating an Education Course
Overall, and where applicable, do you feel that co-leading a carer education course has had a beneficial impact on…:You? / Individual(s) you support? / Your working practice?
Yes / 100% / 100% / 92%
Not applicable / - / - / 8%
100% of all respondents said that co-leading a CESP or BEST course had had beneficial effect on them and individuals support.
100% of mental health professionals and carer support workers believed there had been a beneficial effect on their working practices.
75% carers expressed that that their working practices had benefited also.
Furthermore, it is encouraging to note that:
100% of respondents believed that carer education courses such as BEST encourage partnership working.
100% of mental health professionals and carer support workers responded that involvement in carer education had increased their job satisfaction.
To expand upon the statistics above, co-facilitator respondents were asked to state what had been the main outcome (in their opinion) of co-leading a course for them as individuals, on the individual(s) they support and on their working practice.
Feedback covered a wide range of topics, but three themes emerged: increased confidence, better understanding, and improved relationships.
“Better understanding of carers - better collaborative working with families”