Information for families: When your baby dies - a particular kind of grief

When a baby dies, parents speak of a grief that has no comparison. This guide from Child Bereavement UK, updated in 2019 includes input from parents, with some feelings and thoughts that parents are very likely to experience.
Download here

Information for families: Explaining miscarriage, stillbirth or the death of a newborn baby to a young child

When a new baby is expected in a family, most young children will be looking forward to the birth as much as anyone else.  Having to explain the death of an expected baby brother or sister is an incredibly hard to thing to do for parents who are struggling with their own grief.  This leaflet explains how to answer questions from young children and suggests words to use that will help them understand what has happened. 
Download from Child Bereavement UK

Information for families: Explaining to young children that someone has died

Talking to a young child about death and dying is incredibly difficult and can feel too hard to do.  This leaflet provides information and suggestions on what language and phrases to use.  It is not intended as a script but are suggestions to help with what to say, how much to say when, and how to say it.
Download from Child Bereavement UK

Information for families: When a child dies - a loss like no other

No-one expects their child to die before them.  For some the tragedy feels too overwhelming.  This information sheet includes quotes from bereaved parents who attended the Child Bereavement UK bereavement groups and contains information on ways that might help bereaved parents to make small steps towards learning to live again.
Download from Child Bereavement UK

Information for families: Saying goodbye to your baby or child

After the death of a much longed for baby or child, thinking about what to do next can be overwhelming.  Every parent reacts differently and how each decide to say goodbye their child or baby will vary.  This leaflet from Child Bereavement UK provides details on some of the options available and includes links to other organisations that may help.
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Information for families: Partners may grieve differently

The way two people in a relationship deal with grief can sometimes differ and this can put an additional strain on a relationship when a couple face bereavement together.  By understanding these differences, couples can begin to achieve balance with each other and themselves. Two page leaflet from Child Bereavement UK updated in 2019. 
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Article: Bereaved parents' experiences of research participation

Designing and obtaining approval for studies involving bereaved parents can be difficult.  The aim of this Australian study was to explore bereaved parents' experience of research participation.  Nineteen parents whose children had died in an intensive care unit were contacted.  Participants were asked to reflect on their experience of research participation with a focus on recruitment methods, timing of research contact, and the location of interviews. The findings showed that despite being emotionally difficult, parents' overall experience of research participation was positive.  Their views provide insight to researches and research committees on the best way to conduct research with bereaved parents.

Butler, A. et al. 2019.  Bereaved parents' experiences of research participation.  BMC Palliative Care.

Access full text article here

Article: Parents and clinicians: partners in perinatal bereavement research

This paper, written collaboratively by a parent, chaplain, bereavement specialist midwife and obstetrician describes their experiences of attending an annual International Stillbirth Alliance (ISA) conference, organised by bereaved parents, healthcare professionals and researchers.  Four key messages are voiced: the value of active partnership; the use of creativity as a unifying expression of grief; the value of collaboration with stakeholders, and the value of participating in research.

Rice, R. 2019. Parents and clinicians: partners in perinatal bereavement research.  BMC Research Involvement and Engagement, 5 (1) online.

Available to download

Guide: Looking after yourself - information for parents after bereavement

This information sheet from Child Bereavement UK acknowledges that grief can be so overwhelming that for many, it may not feel possible for someone to look after themselves.  It talks of the importance of having a routine and social support, and provides advice with managing stress, exercise, sleep, diet and appetite.

Download the guide here

Article: Continuing bonds with the living: bereaved parents' narratives of their emotional relationship with their children

Following the death of a child, parents with surviving children face the task of navigating their own grief while continuing to parent.  In this study parents' told stories of emotional connection and disconnection with surviving children, influenced by the competing and potentially incompatible task of  'parenting' and grieving. The study demonstrated the need for healthcare staff to provide support to parents to explore contradicting emotions, and provide support to children to make sense of their experiences in relation to the parent-child relation.

Shanker, S. et al. 2017.   Continuing bonds with the living: bereaved parents' narratives of their emotional relationship with their children.  Bereavement Care, 36 (3) 103 - 107.

Request the article via the online form

Book: Bereaved parents and their continuing bonds: love after death

Catherine Seigal, a counsellor, shares the stories of bereaved parents and reflects on them to illustrate how they develop and nurture ongoing bonds with their child who has died.   Drawing on current theories of continuing bonds, the book discusses the role of bereavement groups, and a range of issues that bereaved parents encounter including the challenges when another child is born, the significant role of siblings in keeping the bonds alive and the particular experiences for parents who's child dies before or very shortly after birth.  A well written book, and relevant for all staff supporting parents after the death of a baby, infant or child.

Siegal, C. 2017.  Bereaved parents and their continuing bonds: love after death. Jessica Kingsley.

Available for loan from the library

Article - Supporting bereaved parents at the time of a child's death

This article discusses the key components needed to support parents. It acknowledges that nothing you can say will ever take away the emotional pain they are facing but your involvement on a very human level will make a difference.  One of the authors is a Trustee of Child Bereavement UK, and one a bereaved parent.

Laurent, S., Samuel, J. & Dowling , T.  2016. Supporting bereaved parents at the time of a death of a child.  Archives of Diseases in Childhood, Education & Practice, 101 (6) p 293 -294.

To request a copy, click here fill in form and return to library.

[Book chapter] Family resilience in the wake of loss: a meaning-orientated contribution

The aim of this chapter is to explore what is meant by resilience in the context of loss and grief.  Drawing on family stories, the chapter weaves these stories through the review, and discusses several implications for therapists striving to respect and promote resilience within families.

Hooghe, A. & Neimeyer, R. A. (2015)  Family resilience in the wake of loss: a meaning-orientated contribution: In;  Becvar, D. (ed). Handbook of Family Resilience.  Springer.

To request the chapter, click here fill in form and return to library.

[Article] It's like being a member of a club I didn't want to join: Reflections on a support group for bereaved dads

Research from Helen and Douglas House, the article offers a different perspective on dad's grief and on the use of support groups for bereaved dads.  The dads powerfully articulate  the extreme nature of their losses, explaining "nothing can solve the problem".  On the other hand, they stress that within the context of this research, the tiny improvements they feel and experience make coming to the group worthwhile and important.

Davies, K., Murray, M. & Whitworth, T. 2015.  [Article]  It's like being a member of a club I didn't want to join: Reflections on a support group for bereaved dads.  Bereavement Care, 34 (3) p 92-95.

To request a copy, click here fill in form and return to library.

[Guide] After the loss of a child: a resource for parents of a child in palliative care

After the Loss of a Child looks at common issues and processes occurring both before and after the death of a child, and provides information and provides suggestions for navigating the grief experience of parents and families both immediately and in the long term.  The resource is divided into sections, so that it can be easily referenced as needed.

Australian Centre for Grief and Bereavement: 2015. After the loss of a child: a resource for parents of a child in palliative care.  29 pages.

Click on title to download

[Article] Mothers' experiences on the perinatal loss of a co-twin: a qualitative study

Fourteen mothers were recruited from a neonatal intensive care unit.  The mothers had experienced a loss in pregnancy or the neonatal period and had a surviving twin on the neonatal unit.   Where the surviving co-twin remained in hospital for many weeks, the mothers described the emotional support of health professionals as crucial to their well being. Few mothers sought formal bereavement support, instead they kept their grief "on hold" in order to support their surviving twin.  The authors conclude that relatively small changes in practice made a significant difference to the wellbeingof mothers during their time in hospital with their surviving twin.

Richards, J., Graham, R., Embleton, N., Campbell, C. & Rankin, J. 2015.  Mothers' experiences on the perinatal loss of a co-twin: a qualitative study.  BMC Pregnancy & Childbirth.

Click here to access article

[Article] Parents' experiences of care decisions about children with life-limiting illnesses

Research with 3 bereaved mothers' regarding their experiences of making decisions, and revising and implementing end of life care plans. The research showed that parents understand the importance of planning for the end of their child's life but find the process difficult.  They also find it difficult to verbalise their decisions and value having the decision partly taken away from them.  The author concludes professionals can assist parents by using a non-dissent model of decision making.

Popejoy, E. 2015. Parents' experiences of care decisions about children with life-limiting illnesses.  Nursing Children and Young People 27 (8) p 20 - 24.

To request a copy, click here fill in form and return to library.

[Article] Parents and end of life decision making for their child: roles and responsibilities

Research from the Royal Children's Hospital, Melbourne, Australia on whether parents want to be and should be the decision-maker for their child in end of life matters. 25 parents were involved in the study.  Their findings showed that parents actively wish to be involved in this role, and can manage its consequences. Furthermore, not being the end of life decision maker was identified in some cases as being detremental to parents' well being.

Sullivan, J., Gillam, L. & Monagle, P. 2015. Parents and end of life decision making for their child: roles and responsibilities.  BMJ Supportive & Palliative Care, 25 pp 240 - 248.

To request a copy, click here fill in form and return to library.

[Guidance] Sexual relations after the death of a baby

Published by SANDS, this guidance helps provide support and reassurance to couples after the death of a baby . It covers the emotional and practical physical factors of resuming a sex life, and tackles issues from both a male and female perspective.  The thoughts of both mums and dads are featured throughout.

SANDS, 2014.  Sexual relations after the death of a baby.  SANDS.

Available on loan from the library or click here to download guidance

[Article] Developing a group voice through the grief journey: the Grief Choir

This study reviews the use of music therapy with adult grievers and explains the theoretical foundation of the Grief Choir. It describes the various dynamic forces within the choir, illustrates various interventions, and examines challenges encountered in the choir. Excerpts from an original composition by the choir are included.

Wilkerson, A. & Di Mmaio, 2013.  Developing a group voice through the grief journey: the Grief Choir.  Progress in Palliative Care, 21 (2) p 89-92.

To access this article, click here, log in using your Athens username and password and search via the CINAHL database.