Lucyna M. Lach

I just want to be normal: A qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life

This qualitative study explores how children and adolescents with medically refractory seizures experience the impact of epilepsy on their quality of life (QOL) within the domains of physical, emotional/behavioral, social, and cognitive/academic function. Semi-structured, open-ended interviews were conducted with 49 participants (7-18 years old). These narratives constituted our data source. Analyses involved inductive generation of themes/subthemes and connection of these themes to generate a theoretical representation of their relationships. These themes reflected the negative impact of epilepsy on QOL: physical-excessive fatigue as a barrier to academic and social pursuits; emotional/behavioral-intermittent emotional distress heightened by epilepsy-related factors such as unpredictability of seizures; social-profound social isolation; and cognitive/academic-discontinuous, fragmented learning. Youths perceive seizures as the major barrier to their sense of normalcy, setting them apart from others. Findings provide direction for assessment and evidence for developing or enhancing clinical interventions and community/school-based programs that might mitigate some of these negative experiences.

The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders

Purpose. Children with neurodevelopmental disorders (Neuro) pose complex parenting challenges, particularly if the condition co-occurs with behaviour problems. Such challenges are likely to impact caregiver health and well-being. This study explores the extent to which caregivers of children with both Neuro and behaviour problems differ in their physical and psychosocial outcomes from caregivers of children with either condition or neither condition. Method. The first wave of data collected in the National Longitudinal Survey of Children and Youth in Canada (1994) was used to identify four groups of caregivers of 4-to 11-year-old children: caregivers of children with a Neuro disorder and externalising behaviour problems (Both; n = 414), caregivers of children with a Neuro disorder only (Neuro Only; n = 750), caregivers of children with an externalising behaviour problem only (Ext Only; n = 1067), and caregivers of children with neither health condition (Neither; n = 7236). Results. Caregivers in the Both group were least likely to report excellent or very good health, and more frequently reported chronic conditions such as asthma, arthritis, back problems, migraine headaches, and limitations in activities as compared to the Neither group. This group also exhibited higher depression scores, experienced more problematic family functioning and reported lower social support than the Neither group. Scores for caregivers in the Ext Only and Neuro Only groups tended to lie between the Both and Neither group scores and often did not differ from one another. Conclusions. Caregivers of children with both neurovelopmental disorders and behaviour problems exhibited a greater number of health and psychosocial problems. While addressing childrens behaviour problems, health care professionals should also consider caregiver physical and psychosocial health, as this may also have an impact on childrens well-being.

Intersection of Canadian Policy Parameters Affecting Women with Precarious Immigration Status: A Baseline for Understanding Barriers to Health

Canadian federal policy provides a framework for the immigration and health experiences of immigrant women. The official immigration category under which a migrant is admitted determines to what degree her right to remain in the country (immigration status) is precarious. Women immigrants fall primarily into the more dependent categories and they experience barriers to access to health services arising from this precarious status. Federal immigration and health policies create direct barriers to health through regulation of immigrants’ access to services as well as unintended secondary barriers. These direct and secondary policy barriers intersect with each other and with socio-cultural barriers arising from the migrant’s socio-economic and ethno-cultural background to undermine equitable access to health for immigrant women living in Canada.

Health-related quality of life in youth with epilepsy: Theoretical model for clinicians and researchers. Part I: The role of epilepsy and co-morbidity

Children and adolescents with epilepsy are at increased risk for poor health-related quality of life (HRQL) even in the absence of active seizures. Clinicians who aim to achieve optimal seizure control also need to focus on improving HRQL. This can only be accomplished by recognizing how different features of the epilepsy itself, co-morbid conditions, as well as psychosocial factors can all make a difference to HRQL. These psychosocial factors include child, family and community/society variables that play a role in the well-being of these children. Conceptual models are relevant insofar as they provide us with a basis for hypothesizing the causal processes that lead to improved HRQL. They delineate what is meant by HRQL and highlight factors relevant to this important outcome. Researchers can use such models to test statistically and clinically relevant relationships. Clinicians can use this knowledge to direct the planning and implementation of services that are informed by these relationships, critically evaluate and then choose HRQL measures for use in clinical practice that most closely approximate what they understand HRQL is. The purpose of this review is to identify what is meant by HRQL as well as outline the theoretical and empirical basis for what it is about epilepsy, co-morbidity, and its treatment that we believe make a difference to HRQL.

Quality of life in childhood epilepsy: What is the level of agreement between youth and their parents?

Children and parents evaluate the childs quality of life (QOL) from their own perspectives; therefore, responses may differ, especially in abstract domains. We examined differences between self- and proxy-reported QOL of children with epilepsy. Children with active epilepsy (N=375) and their parents (N=378) separately completed the CHEQOL-25, a condition-specific QOL measure. The intraclass correlation coefficient was used to determine interrater agreement. Concordance on the Total CHEQOL-25 was 0.45 (P<0.01). Discrepancies were greatest for the subscales of Secrecy (0.24, P<0.01) and Present Concerns (0.32, P<0.01). School placement correlated with discrepancy in the Intrapersonal/Emotional subscale (r=0.19, P<0.05), and the childs age at testing correlated with discrepancy of the Total measure (r=0.15, P<0.01). This study demonstrates that parent perspectives alone are insufficient to measure their childs QOL. The CHEQOL-25 is a practical tool, with complementary parent and child versions, which can be used to determine health-related quality of life in children with epilepsy.

Changes Over Time in the Health of Caregivers of Children With Health Problems: Growth-Curve Findings From a 10-Year Canadian Population-Based Study

OBJECTIVES We used Canadian population-based data to examine changes in the health of caregivers of children with complex health problems compared with caregivers of healthy children over a 10-year time period. METHODS The National Longitudinal Survey of Children and Youth collected data biennially from 9401 children and their caregivers in 6 waves from 1994-1995 to 2004-2005. We conducted growth-curve analyses of these data to model self-reported general health and depressive symptoms for 4 groups of caregivers: caregivers of healthy children, and caregivers of children with 1, 2, or at least 3 of 4 conceptually distinct indicators of child health problems. We modeled covariates for children (age, gender, only-child status) and caregivers (age, gender, education, income, marital status). RESULTS After we controlled for covariates, caregiver health outcomes worsened incrementally with increasing complexity of child health problems. Change in self-reported general health and depressive symptoms over the 10-year period was consistent across all groups of caregivers. CONCLUSIONS Poorer health among caregivers of children with health problems can persist for many years and is associated with complexity of child health problems. Attention to parental health should form a component of health care services for children with health problems.

Disease characteristics and psychosocial factors: Explaining the expression of quality of life in childhood epilepsy

OBJECTIVES To explore, identify and understand the contribution that biomedical and psychosocial factors make to the assessment of health-related quality of life (HRQL) of children and youth with epilepsy using the CHEQOL-25. METHODS We identified and measured variables that may influence HRQL; grouped the variables into four conceptual categories; and used simple and hierarchical linear regressions to model CHEQOL-25 as a function of these variable groupings. Participants were 8-15year olds with epilepsy and their parents. RESULTS 131 child and parent pairs participated. Overall, the unique variances associated with the biomedical and psychosocial variables are R(2)=0.22 and 0.29, respectively, for child self-reported HRQL and R(2)=0.11 and 0.13, respectively, for parent-proxy report. CONCLUSIONS This study increases our understanding of factors that contribute to the expression of HRQL in this population. These results should be interpreted with caution due to the limited sample size and large number of variables.

Quality of life in young adults who underwent resective surgery for epilepsy in childhood.

Purpose:  This study investigated quality of life (QOL) in young adults who had undergone epilepsy surgery before the age of 16 years. The contribution to QOL of seizure status in the prior year, sex, number of antiepileptic drugs, and mood were evaluated.

Psychosocial outcomes in children two years after epilepsy surgery: has anything changed?

Purpose: We prospectively explored psychosocial outcomes in children (7–18 years) 2 years after epilepsy surgery. This study built on our previous one that examined these children 1 year after surgery.

Memory Outcome After Pediatric Epilepsy Surgery: Objective and Subjective Perspectives

Memory was investigated in 27 children and adolescents in a longitudinal study before and at one and two years after epilepsy surgery. A comparison group with intractable epilepsy (n = 15), matched in age, sex, age of seizure onset, and IQ, was studied at comparable points in time. Methods included administration of standardized measures of story recall and face recognition, and qualitative interviews to probe the participants’ perceptions of their memory function over time. There was no significant change over time in either group on the standardized measures. Site and laterality of excision, age at surgery, and seizure outcome were not predictive of change within the surgical group. The narratives revealed facets of memory that were problematic in daily life. The objective and subjective results showed low concordance regarding change, possibly due to limitations in the objective measures for capturing semantic and autobiographical memory.