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Caregivers of Children with Fetal Alcohol Spectrum Disorder: Psychosocial Factors and Evidence for Self-compassion as a Potential Intervention Target

Abstract

Objectives

Fetal alcohol spectrum disorder (FASD) is a common neurodevelopmental condition involving lifelong challenges for both children and their families. The aim of the current study was to explore experiences of caregivers of children, adolescents and young adults diagnosed with FASD. More specifically, we examined the relationship between shame, guilt, pride, self-compassion and caregiver psychological distress. It was hypothesised that shame, guilt, pride and self-compassion would be uniquely associated with caregiver psychological distress. We also examined differences between biological and non-biological caregivers on these variables. It was hypothesised that relative to non-biological caregivers, biological parents would (i) report significantly higher levels of psychological distress, guilt and shame and (ii) report significantly lower self-compassion scores.

Methods

The current study included 175 caregivers of children and young people diagnosed with FASD. Caregivers completed an online survey that included a range of standardised self-report measures that assessed psychological distress, shame, guilt, pride and self-compassion.

Results

Caregiver self-compassion was negatively correlated with psychological distress, shame and guilt, and positively correlated with pride. Hierarchical multiple regression controlling for significant caregiver demographics revealed that shame, pride, guilt and self-compassion accounted for 68.1% of the variance in caregiver psychological distress. Shame and self-compassion were both unique significant factors in the final model. Some preliminary differences between caregiver groups were also found; specifically, biological parents reported higher levels of guilt compared with non-biological caregivers.

Conclusions

The current findings revealed shame, pride, guilt and self-compassion were associated with caregiver psychological distress. Self-compassion and shame were identified as unique contributors to caregiver psychological distress. Future longitudinal research is required to establish if these associations may be casual, which will provide a useful starting point for further investigation into the efficacy of interventions that target self-compassion for promoting better psychological outcomes in this population.

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Acknowledgements

The authors would like to thank the caregivers who participated in this research; without your ongoing support, our research would not be possible. We sincerely hope we have contributed to the understanding and advancement of how to effectively support children with FASD and their families. We would also like to thank Dr. Anne Bernard, head of biostatistics at QFAB Bioinformatics, who provided consultation regarding the statistical analyses.

Author information

Affiliations

Authors

Contributions

NR established the online survey initiated participant recruitment. ZB assisted with participant recruitment. NR undertook the data analysis with assistance from ZB. ZB undertook the literature review and led the first draft of the manuscript. All authors contributed to the study design and writing of the manuscript and approved the final version before submission.

Corresponding author

Correspondence to Natasha E. Reid.

Ethics declarations

Ethical Approval

The study received ethical approval from Children’s Health Queensland Ethics Committee (HREC/17/QRCH/272) and Griffith University’s Human Research Ethics Committee (2019/494) and was conducted in accordance with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Conflict of Interest

AFJ is a trained facilitator of several compassion-based training programs and is paid to deliver these programs. Other authors declare no conflicts of interest.

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Biddle, Z., O’Callaghan, F.V., Finlay-Jones, A.L. et al. Caregivers of Children with Fetal Alcohol Spectrum Disorder: Psychosocial Factors and Evidence for Self-compassion as a Potential Intervention Target. Mindfulness 11, 2189–2198 (2020). https://doi.org/10.1007/s12671-020-01443-1

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Keywords

  • Fetal alcohol spectrum disorder
  • Parents
  • Caregivers
  • Psychological distress
  • Self-compassion
  • Shame
  • Guilt
  • Pride