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1.
Artigo em Inglês | MEDLINE | ID: mdl-31771958

RESUMO

BACKGROUND: Understanding patient perceptions of their spiritual needs when approaching the end of life is essential to support the delivery of patient-centred care. AIM: To conduct a qualitative evidence synthesis on spirituality and spiritual care needs at the end of life in all healthcare settings from the patients' perspective. DESIGN: Studies were included where they were primary qualitative studies exploring spirituality in patients with a life expectancy of 12 months or less in any setting. Two reviewers independently screened titles, extracted data and conducted methodological quality appraisal. A thematic synthesis was conducted. Grading of Recommendations, Assessment, Development and Evaluation (GRADE) - Confidence in the Evidence from Reviews of Qualitative research (CERQual) was used to summarise the certainty of the evidence. DATA SOURCES: Six databases (Medline, Embase, Cochrane, CINAHL, PsycINFO, Applied Social Science Index and Abstracts) were searched from inception up to January 2019. RESULTS: Fifty papers (42 unique datasets), incorporating data from 710 patients were included. Studies recruited from a mix of inpatient, outpatient, hospice and community settings across 12 different countries. Three overarching themes were generated: the concept of spirituality, spiritual needs and distress, and spiritual care resources. Relationships were an intrinsic component of spirituality. CONCLUSION: Meeting patients' spiritual needs is an integral part of end-of-life care. This work emphasises that supporting relationships should be a central focus of spiritual care for patients at the end of life. PROSPERO REGISTRATION NUMBER: CRD42019122062.

2.
Res Involv Engagem ; 5: 4, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30774980

RESUMO

In recent years, there has been a global call to reduce the numbers of preventable stillbirths and increase public awareness about the incidence and impact of pregnancy loss. The lived experiences of bereaved parents have much to contribute to developing the research agenda and clinical care in pregnancy loss. The multidisciplinary Pregnancy Loss Research Group (PLRG) based at the INFANT Centre at University College Cork and Cork University Maternity Hospital, has an established practice of active engagement and participation of patient members. This partnership provided the catalyst to model a similar collaborative approach between clinicians, researchers and bereaved parents when the PLRG was successful in their bid to host the International Stillbirth Alliance (ISA) annual conference in 2017. Over 400 hundred delegates from around the globe attended the conference, of which one quarter were bereaved parents. Establishing a culture of collaboration, support and mutual respect in the field of pregnancy loss, requires scientists, clinicians and parents to be brought together so each can be informed by the other in the efforts to prevent stillbirth and improve bereavement care. As part of ISA 2017 conference, a sub-committee of staff and parents was established to ensure that the voice of parents could contribute to the research agenda and developments in clinical and bereavement care. A creative workshop specifically for parents, followed by a parent assembly were organised to facilitate this. Remembrance activities, organised by the parent committee, were central to the conference and actively engaged in by parents, clinicians and researchers. This commentary, written collaboratively by a parent, a chaplain, a bereavement and loss specialist midwife and a consultant obstetrician, gives voice to this experience, identifying four key messages that arose from our reflection on the conference. These include; the value of active partnership between clinicians and patients, the use of creativity as a unifying expression of grief and as a means to facilitate learning, the value of collaboration with global stakeholders in raising awareness about stillbirth, and the importance of facilitating meaningful patient/public engagement in scientific research. The potential for education and learning opportunities are also explored, highlighting the connection between parents, researchers and clinicians as central stakeholders in the prevention of stillbirth and in improving bereavement care.

3.
PLoS One ; 13(1): e0191635, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29364937

RESUMO

PURPOSE: To explore the lived experiences and personal impact of stillbirth on bereaved parents. METHODS: Semi-structured in-depth interviews analysed by Interpretative Phenomenological Analysis (IPA) on a purposive sample of parents of twelve babies born following fetal death at a tertiary university maternity hospital in Ireland with a birth rate of c8,500 per annum and a stillbirth rate of 4.6/1000. RESULTS: Stillbirth had a profound and enduring impact on bereaved parents. Four superordinate themes relating to the human impact of stillbirth emerged from the data: maintaining hope, importance of the personhood of the baby, protective care and relationships (personal and professional). Bereaved parents recalled in vivid detail their experiences of care following diagnosis of stillbirth and their subsequent care. The time between diagnosis of a life-limiting anomaly or stillbirth and delivery is highlighted as important for parents as they find meaning in their loss. CONCLUSIONS: The impact of stillbirth on bereaved parents is immense and how parents are cared for is recalled in precise detail as they revisit their experience. Building on existing literature, these data bring to light the depth of personal experience and impact of stillbirth for parents and provides medical professionals with valuable insights to inform their care of bereaved parents and the importance of clear and sensitive communication.


Assuntos
Luto , Pais/psicologia , Natimorto , Humanos , Pesquisa Qualitativa
4.
J Relig Health ; 56(3): 1081-1095, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28154999

RESUMO

Stillbirth is recognized as one of the most challenging experiences of bereavement raising significant spiritual and theological questions. Semi-structured qualitative interviews were conducted with bereaved parents cared for in a tertiary maternity hospital to explore the spiritual impact of stillbirth. Data were analysed using interpretative phenomenological analysis. Stillbirth was identified as an immensely challenging spiritual and personal experience with enduring impact for parents. The superordinate themes to emerge were searching for meaning, maintaining hope and questioning core beliefs. Most parents reported that their spiritual needs were not adequately addressed while in hospital. The faith of all parents was challenged with only one parent experiencing a stronger faith following stillbirth. This study reveals the depth of spiritual struggle for parents bereaved following stillbirth with a recommendation that spiritual care is provided as part of comprehensive perinatal bereavement care in the obstetric setting.


Assuntos
Luto , Pais/psicologia , Espiritualidade , Natimorto/psicologia , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Religião e Psicologia
5.
Lancet ; 387(10018): 604-616, 2016 Feb 06.
Artigo em Inglês | MEDLINE | ID: mdl-26794073

RESUMO

Despite the frequency of stillbirths, the subsequent implications are overlooked and underappreciated. We present findings from comprehensive, systematic literature reviews, and new analyses of published and unpublished data, to establish the effect of stillbirth on parents, families, health-care providers, and societies worldwide. Data for direct costs of this event are sparse but suggest that a stillbirth needs more resources than a livebirth, both in the perinatal period and in additional surveillance during subsequent pregnancies. Indirect and intangible costs of stillbirth are extensive and are usually met by families alone. This issue is particularly onerous for those with few resources. Negative effects, particularly on parental mental health, might be moderated by empathic attitudes of care providers and tailored interventions. The value of the baby, as well as the associated costs for parents, families, care providers, communities, and society, should be considered to prevent stillbirths and reduce associated morbidity.


Assuntos
Natimorto/economia , Custos e Análise de Custo , Saúde da Família , Feminino , Apoio Financeiro , Pesar , Custos de Cuidados de Saúde , Gastos em Saúde , Pessoal de Saúde/psicologia , Humanos , Renda , Pais/psicologia , Gravidez , Cuidado Pré-Natal/economia , Anos de Vida Ajustados por Qualidade de Vida , Previdência Social , Apoio Social , Estereotipagem , Natimorto/psicologia , Estresse Psicológico/etiologia
6.
BMJ Support Palliat Care ; 6(2): 194-200, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24916197

RESUMO

BACKGROUND: The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical, emotional, spiritual and social needs of parents are attended to. This study reviewed how spiritual care is provided to bereaved parents following stillbirth in maternity units in Ireland and the impact of stillbirth on healthcare chaplains. METHODS: This was a mixed methods study using semistructured qualitative interviews with hospital chaplains in Irish maternity units. Quantitative data about the provision of services to bereaved parents were collated from the interviews. Qualitative data were analysed thematically to identify key themes. RESULTS: 20 chaplains from 17 units participated in the study (85% of Irish maternity units). 12 chaplains (60%) are formally accredited chaplains; only one has received specialist training in perinatal bereavement care. 11 chaplains (55%) provide follow-up bereavement care. Seven chaplains (35%) did not feel part of the multidisciplinary team. The main themes that emerged were the impact of stillbirth, suffering and the challenge to faith creating inner conflict and doubt. CONCLUSIONS: The provision of spiritual care following stillbirth in Ireland is diverse. Spiritual care in this specialised area by chaplains who are not professionally trained and accredited potentially impacts quality and depth of care. Chaplains experience considerable impact and challenge to personal faith and belief as they provide care. Recommendations are made for ongoing education and greater support for chaplains.


Assuntos
Atitude Frente a Morte , Luto , Assistência Religiosa , Relações Profissional-Família , Espiritualidade , Natimorto/psicologia , Serviço Religioso no Hospital/normas , Feminino , Maternidades/organização & administração , Humanos , Irlanda , Masculino , Gravidez
7.
J Relig Health ; 55(5): 1519-28, 2016 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26093617

RESUMO

Stillbirth remains among the most challenging areas in obstetric practice. The objectives of this study were to explore the impact of stillbirth on the faith of obstetricians. Semi-structured in-depth qualitative interviews were conducted with obstetricians focusing on the impact of stillbirth on their faith. Data were analyzed using interpretative phenomenological analysis. Stillbirth was identified as one of the most difficult experiences, and most consultants were unable to engage with their personal beliefs when dealing with death at work. The major study themes were conflict of personal faith and incongruence between personal faith and professional practice. This study highlights a gap in how obstetricians see their own faith and feeling able to respond to the faith needs of bereaved parents. Participating obstetricians did not demonstrate that spirituality was an integrated part of their professional life.


Assuntos
Atitude do Pessoal de Saúde , Consultores/psicologia , Médicos/psicologia , Religião e Medicina , Espiritualidade , Natimorto/psicologia , Adulto , Luto , Consultores/estatística & dados numéricos , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Obstetrícia , Médicos/estatística & dados numéricos , Gravidez , Pesquisa Qualitativa
8.
J Pastoral Care Counsel ; 69(3): 163-70, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26463854

RESUMO

The death of a baby is one of the most challenging bereavements for parents and healthcare professionals. This study explores the spiritual and theological issues raised for healthcare chaplains as they minister with parents following perinatal bereavement. Chaplains from 85% of maternity units in the Republic of Ireland participated in this study. Suffering, doubt and presence were the main theological themes raised for chaplains following perinatal death. The process of theological reflection is recommended as a sustaining and necessary tool in perinatal healthcare ministry.


Assuntos
Serviço Religioso no Hospital/métodos , Clero/psicologia , Assistência Religiosa/métodos , Espiritualidade , Natimorto/psicologia , Atitude Frente a Morte , Luto , Feminino , Humanos , Recém-Nascido , Irlanda , Masculino
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