Publications

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A Phenomenological Understanding of Patients’ and Partners’ Medical Experiences of Perinatal Loss

This study aimed to investigate patients’ and partners’ lived experiences of miscarriage and stillbirth from initial pregnancy notification to recovering from pregnancy loss. Semistructured interviews were conducted with two partners and ten patients who had experienced miscarriage, stillbirth, or neonatal death from 11 to 26 weeks gestation. Interpretive phenomenological analysis revealed significant medical themes: technology taking the place of care and connection, a lack of patient knowledge, and a lack of mental health services. Findings offer a new perspective on the role of medical providers and procedures in meaning-making surrounding perinatal loss.

 The loss of a pregnancy at any stage can serve as an enormous stressor to a couple’s relationship. However, empirically based interventions to reduce distress after perinatal loss have historically been aimed at the pregnant person, not the couple dyad. This excludes non-birthing individuals from receiving professional support and leads to a deficit in evidence-based therapeutic support for the couple dyad at a time in which a lack of connection has been shown to contribute to poor mental health and relationship outcomes for the individual and couple. This scoping review examines existing couple-based interventions for perinatal loss and the measurement of impact on the individual and couple dyad. 

An overlooked policy and health issue

 In the United States, 37 states and 4 territories allow for the termination of parental rights (TPR) due to parental disability. Twenty‐eight of these states and all four of the territories specifically include parental intellectual developmental disability (IDD). Policies that call for the TPR based on factors outside of parental abuse or neglect have myriad negative effects on individuals, families and communities, including long‐term adverse health outcomes for children who have been removed from parental custody, delays in prenatal care for pregnant people whose stigmatized identities may result in involuntary TPR and an increased burden on already overtaxed child welfare systems. This paper analyses policies and proposes an alternative policy modelled after advocacy from other groups of parents with marginalized identities. 

 Rapid population aging is a global phenomenon that is also accompanied by increased disability rates. These increased disability rates pose social and economic costs to individuals, families, and healthcare systems. This feature will provide an overview of the current research and knowledge regarding aging, disability, and caregiving and focus primarily on cognitive and physical disability. We begin with a brief overview of aging, cognitive and physical disability, and caregiving rates. We then review the literature on aging, disability, and caregiving, focused specifically on global research on caregiving for cognitive disability. While research has primarily focused on ameliorating the negative effects of caregiving, little attention has been paid to reinforcing systems of care that are collaborative, disability rights centered, systemic, and culturally effective. By acknowledging and building on the strengths of existing successful systems, researchers may be able to extrapolate Alzheimer’s and dementia-related caregiving resources onto caregiving for other degenerative conditions, even those involving younger individuals and their caregivers. 

In Brief: There are significant numbers of people in the United States who have intellectual or developmental disabilities and can benefit from comprehensive relationship and sexual health education.

 ■ Ethical practice with couples requires an awareness of historical inequities affecting people with disabilities. 

■ Therapeutic interventions must be designed with the highest level of accessibility including the most accessible reading level.