Development and evaluation of a self-management programme: HOPE for
parent caregivers of children with ADHD/ASD
Preliminary Report Prepared by Dr Andy Turner
Background
Parent caregivers of children with ADHD/ASD often experience increased levels of psychosocial stress,
depression and anxiety and low levels of social support, which impact adversely on their health, quality of life
and ability to care for their children (Rollisson & Wright, 2012; Ingersoll & Hambrick, 2011). High stress caused
by the difficult behaviour of a child in combination with restrictions in personal life may be some of the factors
that contribute to a higher risk of depression in mothers of children with ADHD/ASD (Olsson & Hwang, 2001).
There is a recognised need to provide these parent caregivers with specialised support and coping skills
training (Rollisson & Wright, 2012). Social support has been shown to help parent caregivers deal with stress
(Boyd, 2002). Sanders and Morgan (1997) demonstrated that a lack of social support can lead parent
caregivers to withdraw and become socially isolated because of the negative characteristics they associate
with their child’s disability, which in turn exacerbates their stress level. However, few SMS and coping skills
interventions exist for parent caregivers of children with ADHD/ASD. In 2009, Coventry Carers Centre
approached the Applied Research Centre in Health & Lifestyle Interventions (ARC HLI) at Coventry University to
develop a group-based SMS programme to meet this need.
Intervention: The HOPE Programme for parent caregivers of children with ADHD/ASD.
HOPE is a 6 week, manualised, self-management programme underpinned by social cognition theory, positive
psychology and hope theory (Fredrickson, 1998; Snyder, 2000). Each session runs for 2.5 hours and is delivered
by two trained facilitators who are parent caregivers of children with ADHD/ASD. (See Table 1 for HOPE
weekly content). We pursued an innovative, positive psychological approach towards SMS because of the
results of our qualitative evaluations of SMS programmes in which we identified a renewed and increased
sense of hopeful thinking and action and positive outlook. Snyder’s hope theory (Snyder 2000) and
Fredrickson’s Broaden and Build theory (Fredrickson, 1998) underpin the HOPE programme and drove the
selection of many of the programmes core activities such as indentifying character strengths, gratitude diary
and goal setting and action planning. A distinct feature of the first session in the HOPE programme is the focus
on of the upward spiral of positive emotions and experiences leading to greater well-being, resilience and
coping. This contrasts with the more common approach used in other SMS programmes which focus on a
negative spiral of fear and frustration leading to negative health and well-being.
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HOPE also deliberately exploits Yalom’s (2005) group curative factors (e.g. group cohesiveness, altruism,
instillation of hope, universality). Participants are invited to create a common identity (universality) with other
group members by sharing examples of positive and successful coping attempts rather than sharing problems
and failures. The programme comprises several behaviour change techniques including goal setting and action
planning. HOPE also teaches stress management techniques (e.g. mindfulness) and parent caregiver coping
skills. HOPE is delivered by two trained parent caregivers of children with ADHD/ASD (former participants on
HOPE Programmes). HOPE also addresses the five key mental health recovery concepts
(www.mentalhealthrecovery.com) that provide the foundation of effective recovery work which are: hope;
personal responsibility; self-advocacy; education; support.
Table 1 HOPE Content: 6 weekly sessions x 2.5 hours
HOPE PROGRAMME OVERVIEW
Week 1
Week 2
Week 3
Week 4
Week 5
Week 6
Feedback from Goal Setting
Building
Managing
What give us
Gratitude
Fatigue
Hope
Diary
What’s Self-
Guided
Physical
Management
Imagery
Activity
Expectancy &
Hope
Building Confidence
Coping/
Relaxation
Identifying &
challenging unhelpful
thinking
Imagery
Practice Better
Managing
Breathing
Stress
Gratitude Activity
Healthy Eating
Preparing for
change
Changing
unhelpful
thinking
Identifying
Strengths
Relaxation Imagery
Practice Better
Muscle
Breathing
Relaxation
Communicatio
De-Stressing
Building
Behaviour & Limit
n
with optimism
Confidence
Setting
Finding Happiness
Finding Motivation
Road to wellbeing
and fulfillment
Relaxation Imagery
Review of the
programme
Motivational imagery
Goal setting and action planning
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Method
Coventry Carers Centre recruited over >100 parent caregivers to attend one of ten HOPE programmes. Sixtynine parent caregivers completed baseline and 6 week post-course questionnaires which collected the
following information:
Demographic information (e.g. age, gender, education, marital status, caring responsibility,)
Outcome measures
Hope was measured using the Adult State Hope Scale (Snyder et al., 1996). It comprises 6-items scored 1-8.
The sum of all the items provide the total score of the State Hope Scale, ranging from 6 to 48, with higher
scores representing more hope.
Psychological distress was measured using the Hospital Anxiety and Depression Scale (HADS) (Zigmond and
Snaith, 1983). The HADS has two 7-items subscales (anxiety and depression); each item is rated 0-3. Scores are
added to form separate total scores, ranging from 0 to 21 with higher scores indicating greater level of anxious
or depressed mood. Scores ≥ 11 are considered to indicate probable clinical states (“caseness”)
Positive mental health was measured using the Warwick-Edinburgh Mental Well-being Scale (WEMWBS;
Tennant et al., 2007). The WEMWBS is A 14 positively worded item scale scored 1-5 providing a total positive
mental well being score between 14-70, with higher scores representing greater positive mental well-being.
Gratitude Questionnaire-Six Item Form (GQ-6) The GQ-6 (McCullough, Emmons & Tsang, 2002): is a short,
self-report measure of the disposition to experience gratitude. Participants answer 6 items on a 1 to 7 scale (1
= "strongly disagree", 7 = "strongly agree"). Scores range from 6-42, with higher scores representing higher
levels of gratitude.
Three focus groups (FGs) involving 12 parent caregivers were conducted to gather experiences of attending
the HOPE
Analysis
Outcome data were analysed using related t-tests and included all parent caregiver who completed baseline
and post-course questionnaires regardless of the number of sessions they attended. Effect sizes (Cohen’s d)
were calculated using the following calculation: the mean score at post-course minus the mean score at
baseline dived by the standard deviation at baseline. Boundaries recommended by (Cohen 1988) were used to
determine small (0.2), moderate (0.5) and large effect sizes (0.8). Changes in caseness for anxiety and
depression between baseline and post-course up were tested using McNemar’s test.
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FG data were analysed thematically.
Results
89% of participants were female, with a mean age of 40 years (S.D. 7.6 years). 79% were white and 60% were
not in employment. Table 2 shows that parent caregivers reported significant post- course improvements in
hope (p<0.001, effect size 1.3), and gratitude (p<0.001, effect size 0.8), mental wellbeing (p<0.001, effect size
1.3), anxiety (p<0.001, effect size 0.7) and depression (p<0.001, effect size 0.9),
Table 2 Pre course and pos-course scores (mean and (SD)) (N=69)
Outcome measure
Pre- HOPE
Post-HOPE
P value
Effect
Mean (SD)
Mean (SD)
Hope (6-48 ↑ = better)
26.4 (9.3)
37.6 (5.0)
p<0.001
1.2
Gratitude (6-42,↑ = better)
29.7 (7.0)
35.1 (4.6)
p<0.001
0.8
Positive mental wellbeing (14-70, ↑= better)
38.5 (8.6)
49.3 (8.3)
p<0.001
1.3
Depression (0-21↓ = better)
8.8 (4.4)
5.0 (3.4)
p<0.001
0.9
Anxiety (0-21↓ = better)
11.9 (4.6)
8.5 (3.5)
p<0.001
0.7
size of
change
Before attending the HOPE Programme 64% and 32% of parent caregivers were classified as "caseness" (11+
HADS) for anxiety and depression respectively, which significantly reduced at post course, 30% and 6%
respectively.
FG findings
Participants described the benefits of sharing experiences with other group member and setting goals within a
positive and supportive environment.
“I believe I have learned something from everyone, including how to be more positive and set goals to
achieve more.”
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“I’ve really enjoyed the course, enjoyed meeting all the others on the course and have found value in
me”
“Thinking about and working out problems to do with ADHD and I can now understand my child a
little bit better. Thank you – I hope you go on to help other families like ours”
Conclusion
The findings are extremely encouraging and important as they indicate that parent caregivers attending the
HOPE programme report significant and large improvements in positive psychological outcomes (e.g. hope,
gratitude, mental well being) as well as reducing depression and anxiety. The proportion of parent caregivers
who were classified as caseness for anxiety and depression before attending the HOPE Programme had
dropped by over a half and quarter respectively.
Focus group findings show that parent caregivers feel more knowledgeable and better able to care for their
child and valued the support from other parents. Better supported and less stressed and depressed parent
caregivers are more resilient and better able to care for their children and may ultimately reduce children
being taken into care because of parent caregiver burnout.
This project has demonstrated a high level of patient involvement and impact from the outset. We have
trained 4 parent caregivers to deliver the HOPE programmes and two tutors have also been trained to conduct
post-course focus groups (Tina Malin and Wendy Dingley). These tutors recently presented findings at the
Midlands Health Psychology Conference. Tina has also featured in specialist ADHD/ASD publications describing
her experiences of delivering HOPE. Tina has also set up a HOPE Facebook group for participants so that they
can continue supporting each other ( http://www.facebook.com/#!/groups/208219542620979/ ). HOPE for
parent caregivers is innovative as to our knowledge it is the only peer led SMS programme available to parent
caregivers of children with ADHD/ASD. Training parent caregivers to conduct focus groups and present at
conferences is also another innovative aspect of this project. Due to the success and popularity of HOPE
Coventry Carers Centre now offer HOPE as a routine part of their services for parents.
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