Grandparents' Experiences of Grief and Support Needs Following the Perinatal Loss of a Grandchild
Date
2023
Authors
Lockton, Jane Belinda
Editors
Advisors
Oxlad, Melissa
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Thesis
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Abstract
The overarching aim of this research is to explore grandparents’ experiences – particularly grief and support needs – following the loss of a grandchild in the perinatal period (defined as miscarriage, ectopic pregnancy, termination for medical reasons, stillbirth and neonatal death). Additionally, the research aimed to determine the suitability of a consumer informed website resource to address information and support needs for grandparents who have experienced this type of loss. This dissertation presents four studies. Study 1 explores grandfathers’ experiences following the loss of their grandchild in the perinatal period, while Study 2 further explores grandmothers’ experiences of the perinatal loss of a grandchild six months to five years previously. Study 3 explores the longer-term outcomes for grandparents and families. Finally, Study 4 presents a consumer informed and reviewed website to meet grandparents' information and support needs. The impact of pregnancy loss and neonatal death on parents is profound and well-recognised within the literature. Bereavement care guidelines and support programs have been developed, informed by parent-centred research, resulting in available support for this cohort. However, little research has addressed grandparents’ experiences of the perinatal loss of a grandchild, and the limited existing research has typically focussed on grandmothers and short-term outcomes. To date, no research has specifically explored grandfathers' experiences or the longer-term impacts on grandparents. In order to fill this gap, Study 1 of this dissertation aimed to understand grandfathers’ grief experiences, and identify the supports they provide, receive and require following the loss of a grandchild in the perinatal period. Semi-structured interviews with ten Australian grandfathers were analysed, applying an inductive reflexive thematic analysis methodology. Findings indicated that grandfathers expressed grief in various ways, and their emotional expressiveness did not reflect the extent of their grief. Grandfathers typically provided extensive support to their child/ren and family; however, few supports were available to assist them with their grief and loss. It was concluded that grandfathers require recognition and validation as grievers in their own right, including early access to information and guidance to diverse supports, including written materials and peer and professional support. Study 2 utilised the same methodology as Study 1 to explore grandmothers’ experiences of the perinatal loss of a grandchild six months to five years previously. Semi-structured interviews with 20 grandmothers were conducted. The findings supported and provided a deeper and more nuanced understanding of findings reported in preliminary work (Lockton et al., 2020; Lockton et al., 2021a), including perinatal loss is ‘tragic’ and ‘terrifying’, and brings a grief like no other, and that support options are very limited. This study also identified that adjustment was particularly difficult in families where multiple losses had occurred and reinforced that grandparent-specific supports appear particularly important for bereaved grandparents. Study 3 utilised the same methodology as Study 1 and Study 2 to understand the longer-term impacts of the perinatal loss of a grandchild on grandparents by exploring outcomes 10-20 years after the loss of a grandchild/ren, for both grandfathers and grandmothers. Study 3 specifically sought to explore the factors that reduced or enhanced grandparent/family coping and distress, together with consideration of what supports could benefit grandparent well-being and family coping over time. Twelve grandparents were interviewed, with four themes developed reflecting the ongoing grief experienced and supports provided by grandparents, the challenges faced in subsequent pregnancies, family adjustment to the loss/es, and coping methods utilised. In general, Study 3’s findings reinforced those of the shorter-term studies but indicated that grandparents experience ongoing grief and often provide ongoing support to their child/ren. Given this context, information and support must be available for grandparents for many years following loss - particularly for families experiencing multiple losses or prolonged family disruption. Interventions that focus on family adaptation to loss may benefit the family as a whole. Taken together, these findings, and those of earlier work with grandmothers, identified the need for an accessible form of information and support for grandparents. Study 4 applied consumer-informed design principles to use grandparents’ expertise in determining if an internet-based resource would be appropriate for grandparents and, if so, what design features and content would be preferred. The study also aimed to identify any barriers to utilising such a resource. Study 4 was conducted in two stages. In Stage 1, 152 grandparents responded to a 70-question survey regarding health and eHealth literacy, together with potential website design and content features. The draft website was constructed reflecting the survey results, and in Stage 2, 21 grandparents responded to a second survey seeking feedback regarding the design. Health and eHealth literacy levels were found to be sufficient for using an online resource, and a website was considered beneficial. Participants provided design preferences and, upon review, offered recommendations to optimise the website. Chapter 6 presents and discusses the Stage 1 and 2 results, and Chapter 8 provides an annotated version of the draft website. Overall, the findings of these studies show that following the perinatal loss of a grandchild, grandparents grapple with grief for both their child/ren and grandchild/ren. While managing their grief and requiring support, grandparents also seek information on how best to support their child/ren. Participants in the studies that form this dissertation identified a lack of grandparent-specific support options, which may be needed both in the short and longer term. Health services could assist, with parental consent, by including grandparents when providing information and directing grandparents to support options. Ideally, pregnancy loss support organisations could incorporate grandparent-specific resources into their offerings. Given the complexity of establishing such services, the findings indicate that a website is suitable for middle- to older-aged adults seeking information and support for this type of loss. A website also assists in overcoming geographic isolation. More broadly, while being mindful of design power imbalances, these findings indicate that adults of this age group can contribute to internet-based resource design. Knowledge concerning grandparents’ experiences of the perinatal loss of a grandchild would benefit from further research that seeks to understand experiences from a broader cultural perspective regarding grief behaviours and support needs. Such cultural perspectives might include, for example, grandparents from culturally and linguistically diverse backgrounds within Australia, grandparents from high and low-income countries, and grandparents from diverse religious backgrounds. Additional inquiry could also encompass a review of the usage patterns and usefulness of an internet-based resource and the effectiveness of such a resource as a support tool. Overall, this dissertation points to the significant grief that many grandparents experience following the perinatal loss of a grandchild, and provides some evidence-based strategies for how to best support grandparents and their families following such losses.
School/Discipline
School of Psychology
Dissertation Note
Thesis (Ph.D.) -- University of Adelaide, School of Psychology, 2023
Provenance
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