Resilience factors in parents of children with an intellectual disability: hope and locus of control

Abstract

Aims There is an increasing focus on factors associated with resilience in parents of children with disabilities. Two such resilience factors are hope and locus of control. This thesis aimed to review the existing literature on hope and its relationship to psychological outcomes, in parents of children who have a disability. A research study aimed to explore relationships between two resilience factors, hope and locus of control, and their links with knowledge of behavioural principles and challenging behaviour. Methods To address the first aim, a systematic review of the literature was conducted for hope (operationalised using Snyder’s model of hope). Nine online databases were systematically searched using a set of pre-defined criteria. Eligible papers were rated for quality using an established tool (SIGN, 2008) adapted for this review. Secondly, a cross-sectional research study sampled mothers of children with an intellectual disability (N=32) who completed four self-report measures online: State Hope for the Child Scale (based on the State Hope Scale), Parental Locus of Control Scale (child control and parental control subscales), Behavior Problems Inventory for Individuals with Intellectual Disabilities – Short Form, and the Knowledge of Behavioural Principles Questionnaire (KBPQ), which was developed for the study. Results The systematic review identified 11 papers; three were rated as good quality, seven rated as fair quality and one rated as poor. Studies included participants whose children had a range of disabilities. Participants in the following groups were overrepresented: white, middle to high socio-economic status mothers, educated to college or graduate degree level and who self-selected to participate. For all studies, mean hope was higher than the median value for each scale used, suggesting the presence of hope in most parents. Hope was positively associated with a range of variables, such as, quality of life, and negatively associated others, including stress. There were differences in the interactions between hope components of agency and pathways, and psychological variables. There were also differences between how maternal and paternal hope related to psychological variables. The characteristics of those recruited to the research study mirrored those found in previous research. The majority of participants were married/cohabiting mothers, living in areas of higher socio-economic status, and caring for a child with a moderate or severe ID. In addition, there was a higher incidence of children with autism spectrum disorder in this sample. Mothers reported feeling hopeful, although they experienced a range of challenging behaviours (mean 14.6 behaviours per child). Due to poor psychometric properties of the KBPQ, data was not included in the analysis; however, some areas of strength and weakness in knowledge were evident. Correlational analysis showed that higher levels of resilience factors were associated with lower levels of self-injurious and aggressive/destructive behaviour. Stereotyped behaviour was not associated with either hope or locus of control. In contrast to previous research, higher hope was associated with a more external locus of control for the child control subscale. Conclusions and implications Hope is an established resilience factor in the general population. Findings from both the systematic review and research study suggest that hope is present in parents and caregivers of children with a disability. The systematic review demonstrated consistent adaptive relationships between hope and psychological variables. This highlights hope’s role as a resilience factor in parents of children with a disability. The research study added to the literature on how maternal hope and locus of control inter-relate in this population. Generalisability of study results was limited by sample size, population characteristics and by scales used. However, overall findings suggest that it would be beneficial to consider resilience factors when planning and evaluating interventions and research. Furthermore, examining specific aetiologies of disability, such as ASD, might also clarify whether these affect the relationships between hope and other psychological variables.