A review was undertaken of the commonly used measures in studies examining parental stress when their child is diagnosed with epilepsy. This can be seen in Appendix 2. The review documented the study design, outcome measures used as well as the study’s findings. This was undertaken out of interest so to understand how this present study’s methodology compared with those that had a similar aim. This study’s methodology had already been decided upon when this years work was undertaken, however the review in Appendix 2 shows the variety in alternative self-reported questionnaires that could have been used. Upon review, similar reliability and validity scores have been reported for the questionnaires used in this study compared to alternatives. The alternative measures that could have been used display that there is a wide range in the number of items within each questionnaire. This implies that there is
a range in the length of time that it would take to complete each questionnaire. The questionnaires used within this methodology were found from the pilot study to all took a maximum of 5 minutes to complete each, making the time taken to complete the battery of questionnaires to be between 30-40 minutes.
The Pediatric Inventory for Parents (PIP) reported the strongest reliability scores compared to alternative measures of stress, strengthening the use of this questionnaire. This can be seen in Appendix 2. This is important to note, as the PIP will be used in order to assess associations between variables and carer stress. The methodology that was used will additionally be considered within the main discussion.
Table 10: Variables Being Assessed and the Questionnaires Used
Variable Concept Instrument Normal values
Understand whether daily illness related stresses have been occurring to carers in the past 2 weeks
Pediatric Inventory for Parents (PIP)
No clinically determined point that indicates stress. Using total score of 90 as cut off point, based on previous study findings.(Guilfoyle et al.)
Carer stress
Understand reasons behind the impact that a potential diagnosis of epilepsy has on carer stress
Semi-structured Stress Questionnaire
Not clinically validated
Using total score of 10 as cut off point. (Based on conversation with Dr Andrew Curran)
Carer Coping
• Problem-solving strategies
• Emotional strategies
• Dysfunctional strategies
Assess the different coping strategies employed by the carer in relation to the potential diagnosis of epilepsy. 28 items to create 3 subgroups: dysfunctional 12- item; emotional 10-item; problem focused 6-item. Brief Coping Orientations to Problems Experienced (COPE) Scale.
Means and standard deviations(Cooper, Katona & Livingston 2008) Dysfunctional 16.1 (4.4);
Emotional 19.4 (5.3); Problem-focused 11.7 (4.5).
Carer Health Assess whether the potential diagnosis of epilepsy in their child affects carer health
General Health Questionnaire-28 (GHQ-28)
Cut-off value of 5 to indicate poor health(Goldberg et al. 1997)
Carer locus of control Examine whether there is a difference in carers conception of control; do they believe they have control over their life events (internal) or that they occur due to fate (external)
Internal-External Locus of Control
Median value taken to indicate the two groups.(Parkes 1984)
Our median value was 12: 0-12 = Internal 13-23 = External Carer Support • Formal kinship • Informal kinship • Social groups • Professionals • Professional groups
Examine the different sources of support and the perceived helpfulness of the support that has been viewed as being available to the carer.
Total score is generated from the 5 subscales to indicate overall perception of support available to family
Family Support Scale (FSS)
No normal values reported by author. Higher scores indicate more support perceived.(Hanley et al. 1998) Total support score mean and standard deviation of 27.25 (11.2) was reported from Taylor et al.(Taylor & Others 1993) Carer Resources Carer Needs • Resource • Information • Counselling
Understand which needs are viewed by the carer as being a ‘definite need’ now that their child has a potential diagnosis of epilepsy.
Family Needs Survey (FNS)
Higher scores indicate higher unmet needs. (Trute & Hiebert-Murphy 2005)
Variable Concept Instrument Normal values
Child’s behaviour -proxy report
• Emotional problems
• Conduct problems
• Hyperactivity
• Peer relationship problems
• Prosocial behaviour
• Impact
A behaviour screen of the carer’s child. A total score is generated using the 5 subscale scores. Additionally, an impact score is included to indicate the perceived impact on home, recreation and education as a result of their child’s behavioural difficulties.
Strengths and Difficulties
Questionnaire (SDQ)
Normal total mean and standard deviation score for parent report is 8.4 (5.8).(Goodman et al. 2000)
Family Functioning
• Family Communication Scale
• Family Satisfaction Scale (FSS)
Understand the different levels of family togetherness and ability to respond to change.
Assess the quality of communication between family members
Assess the satisfaction of the family
Family Adaptability and Cohesion Evaluation Scale –IV (FACES-IV)
Total circumplex ratio describes a summary of mean balanced to mean unbalanced score. Higher the ratio is above 1, the more healthy the family is. Most between 0-2.(Olson, Gorall & Tiesel 2006) Communication mean and standard deviation 36.2 (9.0).
FSS mean and standard deviation 37.5 (8.5).(Olson, Gorall & Tiesel 2006)
Child’s self image and self esteem To assess whether the children with the potential diagnosis of epilepsy have a positive (SI +ve) or negative image (SI –ve) and what their self esteem (SE) is like.
Self Image Profile for Children (SIP-C) Self Image Profile for Adolescents (SIP-A)
User guide reports mean scores depending on age and gender.(Butler 2001)
Mean and standard deviation of scores for SIP-C and SIP-A. (Bellew, Haworth & Kay 2011)
SIP-C: SI +ve 50.67 (8.78) SI –ve 27.44 (8.96 SE 33.0 (16.03) SIP-A: SI +ve 40.60 (6.88) SI –ve 34.40 (11.76) SE 32.80 (14.82) Child’s quality of life To assess the child’s perception of their
quality of life within the past month
Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0)
Mean and standard deviation of normal total score from child report was reported to be 83.0 (14.79)(Varni, Seid & Kurtin 2001) and 83.84 (12.65) from a population of 5480.(Varni, Limbers & Burwinkle 2007)
Carer demographic screen Overview of carer’s family structure, their level of education, weekly finance and number of dependencies.
Demographic Information Sheet
Not applicable
Child’s fit history A brief overview of the episodes being experienced: fit frequency, if occurred in a public place, thoughts on condition.
Demographic Information Sheet
Figure 9: Schematic Diagram of the Studied Variables and the Measurement Tools Used.
Figure 9 describes the rational behind each of the questionnaire used. This figure is based on the models generated within the family stress theories. This study was not based on a specific family stress theory but has used the conceptual idea that certain variables may act as a mediator to stress.
From the family stress theories, family capabilities incorporates coping, family functioning and family resources and these have been posited as variables that have the ability in allowing the family to adjust to a stressor or crisis.
From the literature review and critical appraisal, it was clear that certain variables have been linked to affecting carer stress. These are the carer’s own health, their child’s behaviour, the coping strategies used, the family functioning and the resources that were available to them. Therefore, the methodology was developed to assess each of these variables as well as the carer stress. Using this schematic diagram of the methodology as depicted in Figure 9, stress is the independent variable, with all other variables that are completed by the carer being the dependent variables.
It has also been shown within the literature review that being diagnosed with a chronic condition has the ability to affect the child’s quality of life and their self-esteem. Therefore, these two variables were additionally incorporated into the study design although they will not be contributing to the assessment as to whether or not they affect carer stress.