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Objectives: When a child dies during the perinatal period, grandparents lack the resources to navigate their loss. We applied principles of co-creation and consumer-informed design to seek grandparents' expertise in determining (1) whether an internet-based resource would be suitable/beneficial for grandparents, (2) if so, what design features and content should be included and, (3) any barriers to utilising an internet-based resource. Method: In Stage One, 152 grandparents responded to a survey regarding health and eHealth literacy and website design and content. In Stage Two, a draft website was developed, with 21 grandparents providing feedback about the website's design, content and navigability. Results: Health and eHealth literacy measures indicated that >60% of participants had adequate literacy, and over 70% considered an internet-based resource useful. Grandparents provided design and content preferences, valuing diversity and peer support, and offered recommendations to optimise the website. Directing grandparents to public internet facilities would reduce barriers to access. Conclusion: A website is a suitable resource for grandparents seeking information and support following the loss of a grandchild in the perinatal period. Innovation: Grandparents see benefits in internet-based resources and can contribute to co-design. Further work could explore cultural differences.
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BACKGROUND: Regular methamphetamine use can cause a range of physical, psychological and social harms. Stigma is one factor that impacts engagement and successful completion of treatment. In Australia, Aboriginal and Torres Strait Islander people who regularly use methamphetamine experience multiple stigmas, which further compounds access to treatment and quality of life. This paper explores the cumulative and compounding effects of participating in a stigmatised activity such as illicit drug use in relation to the stigma experienced by Aboriginal and Torres Strait Islander people as a population marginalised through colonisation. METHODS: Ten sites nationally participated in a cross-sectional survey measuring a range of factors including psychosocial stress in methamphetamine users. The survey sample size was 734, with 59% identifying as Aboriginal and Torres Strait Islander (n = 433). In addition, a total of 147 mainly Aboriginal and Torres Strait Islander people who use methamphetamine, community and family members, and service providers took part in a total of 19 focus groups and 7 interviews. RESULTS: Aboriginal and Torres Strait Islander participants experienced multiple psychosocial stressors at significantly higher rates than non-Indigenous participants. These stressors include diminished access to health care (33%), experiences of racism (34%), grief and sorrow (39%), worry for family (46%), and child welfare experiences (46%). The qualitative findings highlight the cumulative impact of historical, political and social stressors on an already stigmatised population. CONCLUSIONS: The findings of this unique analysis demonstrate the disruptive impact of methamphetamine use on the lives of those who use methamphetamines and their family members. They also illustrate challenges, such as stigma, that may confront those seeking assistance for drug-related issues. Aboriginal and Torres Strait Islander community involvement is necessary to provide support and education for the individual, the family, and the community as a whole. Stigma reduction is therefore a worthy target for intervention.
Sujet(s)
Aborigènes australiens et insulaires du détroit de Torrès , Qualité de vie , Stress psychologique , Enfant , Humains , Australie/épidémiologie , Études transversales , Métamfétamine/effets indésirables , Troubles liés aux amphétamines/psychologie , Troubles liés aux amphétamines/thérapie , Stigmate social , Acceptation des soins par les patientsRÉSUMÉ
Pregnancy loss and neonatal death are recognized as distressing experiences for parents and other family members. However, no research has specifically addressed the experiences of grandfathers. This study aimed to understand grandfathers' grief experiences, and to identify supports they provide, receive, and desire following the loss of a grandchild in pregnancy or the neonatal period. Semi-structured interviews with 10 Australian grandfathers were analyzed, applying principles of thematic analysis. Three themes related to grief and three themes related to support were identified. Findings indicated that grandfathers expressed grief in a range of ways, and emotional expressiveness did not reflect the extent of their grief. Grandfathers typically provided extensive support to their child and family; however, few supports were available to help grandfathers. Recognition and validation of grandfathers' grief, early access to information, and guidance to a variety of supports including written materials, peer and professional support, is required.
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Deuil (perte) , Grands-parents , Mort périnatale , Australie , Enfant , Famille , Femelle , Chagrin , Humains , Nouveau-né , GrossesseRÉSUMÉ
PROBLEM: Pregnancy loss is a distressing experience for parents, however no research has addressed grandmothers' experiences of grief and support following a child's pregnancy loss. BACKGROUND: No research has specifically addressed grandmothers' experiences of support and bereavement care following pregnancy loss. AIM: This study seeks to understand three key areas: (1) the support grandmothers provide to their child; (2) the support they received themselves following pregnancy loss, and; (3) supports desired by grandmothers. The study aims to contribute insights into actions midwives could take to support grandmothers following pregnancy loss. METHODS: Semi-structured interviews were conducted with 14 grandmothers to understand their support experiences. Interviews were analysed using Braun and Clarke's approach to thematic analysis. FINDINGS: Themes related directly to the three research questions: one: providing support, comprising two themes - being strong, protecting their family and the challenges of knowing how to help. Two, receiving support, also comprised two themes - lack of professional support offered to grandmothers and informal support and self-support strategies. Three, desired support, comprised three themes - I had no idea: increasing knowledge of pregnancy loss, peer support helps: they know how it feels, and honouring our grandchildren, making meaning. DISCUSSION: Grandmothers may give extensive support to their child following pregnancy loss but lack confidence and face challenges in doing so. Few formal supports are available to grandmothers themselves, with grandmothers relying on their social networks for their own support. CONCLUSIONS: Grandmothers need early access to information and guidance from midwives and hospital bereavement services, as well as ongoing peer support with flexible delivery options.
Sujet(s)
Avortement spontané , Grands-parents , Enfant , Émotions , Femelle , Chagrin , Humains , Relations intergénérations , GrossesseRÉSUMÉ
OBJECTIVES: In Australia, 15-20% of pregnancies result in miscarriage, and 0.69% in stillbirth. Pregnancy loss is a distressing experience for parents, with many turning to their own parents for support. Pregnancy loss has been identified as an ambiguous loss, leading to disenfranchised grief. However little research has been conducted regarding grandparents' experiences following pregnancy loss. Much of what is known comes indirectly from family studies of grief and loss. This study aimed to explore grandparents' experiences of loss and grief, following a child's pregnancy loss. DESIGN: A grounded theory approach using a qualitative inductive thematic analysis research design was employed. Individual participant interviews provided the data for analysis which was conducted using a six-step approach. METHODS: Interviews were conducted with 14 grandmothers. Interviews were semi-structured, with open-ended questions. Thematic Analysis was applied using Braun and Clarkes' (2013) approach to analysis. RESULTS: Five themes were identified: Pregnancy loss is a grief like no other, Excited anticipation - then nothing, Ambiguity following pregnancy loss exacerbates grief, Grief is isolating, Multiple losses, changed family relationships, and Ceremonies and mementoes: Tangible, with lasting benefits for grandparents. CONCLUSIONS: Early access to information and guidance, ongoing peer support with flexible delivery options, and involvement in memory making activities could reduce ambiguity and disenfranchisement. Increasing community education and participation in raising awareness was identified as a way for grandparents to honour their loss and support others. Further research could explore grandfathers' experiences, the longer-term outcomes for grandparents and families, and the impact of support strategies.