Leeds Institute of Health Sciences Infant Mortality and Social Networks: Perspectives on Bereavement Dr Katie Spicer Dr Ghazala Mir NHS Airedale, Bradford and Leeds; Leeds Teaching Hospitals Trust; Bradford Teaching Hospitals Trust; Bradford District Care Trust; Leeds Community Health Trust ESRC Grant Ref: RES-061-25-0509
Outline Introduction to study: social support and birth outcomes Women s perspectives of bereavement care and support Feedback from one participant on behalf of the Leeds Project Development group Questions
Background Social exclusion and inequalities in infant mortality Infant mortality rate (IMR) for babies of mothers born in the UK=4.1/1000 live births (ONS 2013) IMR for mothers born in the Caribbean 9.6/1000, Pakistan 7.6/1000 and for teenage mothers 5.4/1000 Risk reduction strategies suggested include optimising maternal and mental health, addressing environmental stressors, improved services and increased social support for women at risk (DH 2007)
Plan of investigation 1. Explore the current evidence, policy guidance and local context 2. Interview women from a range of backgrounds in two matched groups who have 1. experienced an infant death OR 2. a child over one year old 3. Analyse data using quantitative and qualitative methods 4. Project development groups using participatory research methods to develop solutions to problems identified, working with professionals in statutory and voluntary sectors in Leeds and Bradford
Details of sample of bereaved women Risk group by ethnic background and age Leeds Bradford Total Pakistani (one teenage mother, others over 19) 5 12 17 White British teenagers 2 2 4 African (no teenagers) 1 1 2 Total 8 15 23
Self reported causes of death Cause of death (reported by woman at interview) Genetic condition confirmed or suspected 10 Prematurity (included incompetent cervix, bicornuate uterus) Perinatal death, one associated with preeclampsia Sudden death at home, cause unknown 2 Numbers affected 6 3 Infection in utero (CMV) and sepsis in neonatal period 2 TOTAL 23
Women s Priorities: Relationships Being listened to and taken seriously Empathy, feeling understood, emotional support Not being judged/ stereotyped Not being lonely or isolated in hospital Having confidence to ask questions Feeling encouraged/ reassured, having confidence boosted Bereavement support
Women s Priorities: Knowledge Being informed about warning signs Having honest, clear and complete information Being taught what you need to know Fears about caring for sick child at home
Women s Priorities: Service Design Better interpreting provision More resources in different languages Staff from different ethnic backgrounds Professionals keeping in touch with each other Including women in decisions about how to run services Targeted support for women at most risk
Bereavement support Many women spoke of the presence or absence of support in both hospital and community settings during their process of grieving Bereavement support recognised by women as important for on-going health and well being There were diverse needs, expectations and prior knowledge expressed by women and their families in relation to bereavement, including the importance of consideration of spiritual beliefs Factors at play in accessing bereavement support may mirror those affecting access to support for other health needs; language, age, cultural factors
After the death of a baby Loss of confidence, guilt, self-blame Depression, self harm attempts, not able to work Financial concerns Impact on relationship with partner, other family members, other children Impact on future pregnancies such as fear, anxiety: When I was pregnant with her I was just so, so scared. I couldn t walk into that hospital in BRI. I was shivering
Support on postnatal wards Women reported varying experiences of postnatal care, some positive, but many felt a lack of empathy: One woman was in the room at the end of the corridor: It went a bit lonely sometimes...besides my family coming to see me, there was no one really that would come to my room. I thought there should have been someone...some sort of support...some midwife coming...they d come and do their checks and they would go. They didn t really come and sit with me, you know, have a one to one chat with me, to see how it s going, you know, nothing. No support like that in any way. You need that from the nurses and the midwives, you want that, you know... (Pakistani participant, Bradford)
Neonatal Support Experience by many women of excellent neonatal staff, who were caring and supportive: Dr C was amazing, she called me back 3 or 4 times after he passed away, and she really was a help. Women appreciated encouragement to be involved in their baby s care, particularly holding their baby in the last moments Women also reported staff members who were not empathic and whom they didn t feel they could trust Staffing levels on neonatal units a problem; nurses taken up with practical tasks which can limit engagement with families (KI, neonatologist in Leeds)
Uncertainties and conflicting messages Key informants and women both described situations of conflict around withdrawal of treatment and end of life decisions, in particular where diagnosis and prognosis were uncertain It upsets you, thinking: Well, how long have I got? Maybe days, weeks, months. So we didn t know A was going to live for 3 months... (Pakistani participant, Bradford) Accepting that the prognosis is poor and that treatment would be futile was often difficult for parents, particularly where not many outward signs of illness Ongoing anxieties where no cause of death found: Everything is ok, but he is dead... (African participant, Leeds)
Spiritual Care Many women mentioned the importance of support from a religious perspective as well as medical They [staff] do so much, they try as much as they can and whatever happens it s in God s hands (Pakistani participant, Bradford) It was very tough..i think the only thing that kept me going was my faith, to honest with you... (Pakistani participant, Leeds) Doctors perspectives acknowledged to be at times contradictory to the views of communities with strong faith convictions Access to advice from a faith based source/chaplain or Imam could aid understanding and decision making for families
Community Support Some women described good support, sometimes over an extended period after the death: When I lost T she [midwife] came round and helped me, and you know, cried with me as well...i think she went that extra mile to make me feel like it was genuinely upsetting for her as well [...] and you re not just a number on a register... Others described an absence of ongoing support: She died and that s the end of the story. I saw the health visitor once, saw the social worker once and that s it. Nobody else- it was like she didn t exist. I know that doctors are too busy...i was just there on my own because my husband didn t want to talk about it...
Communication between professionals A few bereaved women described visits from midwives who were unaware of their loss, asking to weigh the baby More than one woman had repeated visits from different members of a community midwifery team, with the expectation of a live baby Community teams not sharing information affected trust and confidence for further care: I think at that point I stopped relying on them. I stopped going to them. I stopped listening to them (Pakistani participant, Bradford)
Access to bereavement support No direct access to bereavement support in Leeds from neonatal unit; previously a dedicated post (KI, neonatologist) Overall lack of services around bereavement for some groups (KI, Haamla, Leeds) Women valued empathy and caring approach from all staff Some women expressed a preference for support from someone of a similar cultural or religious background, often in a context where they hadn t received support from professionals Bereavement counselling situated right at end of maternity ward; not ideal (teenage mum, Bradford)
Voluntary services: SANDs Recognition by SANDs that needs of clients from different backgrounds not being met with existing services Plan for a pilot over 3 sites in England with a worker from minority ethnic background Many women interviewed were not aware of SANDs Group, evening meeting and mixed gender context not preferable for many women Excellent support from SANDs volunteers in Leeds and Bradford in working with Project Development Groups Possibility of a BLISS group starting in Bradford
Family support Being from the Asian community, the network of family, friends and work colleagues if we are workingit s good because we ve got the support there. (Pakistani participant, Bradford) Family and personal networks may have different expectations of the grieving process, or lack understanding of what might help:...don t cry, you are not supposed to cry... and on the fourth day: Look, you can stop grieving now... (Pakistani participant, Bradford) I used to just sit and cry and cry, she was like don t be silly, be strong for your kids. (Pakistani participant, Bradford)
Husbands and partners Partners were often a mainstay of support Many women also reported difficulties talking about their grief and the impact of the loss with their partner: You know until now me and my husband, we don t talk about it. He won t talk about it to me. He just changes the subject. (Pakistani participant, Bradford) Examples of partners suffering stress and depression, suicide attempts Women having to interpret for partners, even when having bad news broken or dealing with loss Need for bilingual counsellors to work with couples where one partner doesn t speak English
Need for specific support for Asian women Any Asian lady that can t speak English she s got nobody to turn to because she goes back home after delivering this baby. The baby is taken away, buried and she s got no one (Pakistani participant, Bradford) Some of them [Asian mums] do really suffer in silence and not know where to get the support...you accept it because that s the done thing and move on. (KI working for Bradford doula service) I felt really lost...there was no one there, me and my husband, we d cried, we did need support, but we didn t ask for it and there was no one...so it was our fault to be honest with you (Pakistani participant, Bradford)
Teenage Mums One mum admitted she cut herself off from people: I just wanted it to be me and my baby and that was that (Bradford participant) Another described how she didn t want to see anyone connected to her baby, like the health visitor: It is still a little bit hard [in subsequent pregnancy] because it s the same health visitor that everyone has. There s always something to bring it all back One mum had a few counselling sessions and then it ended: Because I d stopped crying in every session...it was a bit like, right, you don t need me anymore.
Summary This study explores social support and social networks for women at highest risk of an infant death, up until the loss of their baby The presence and quality of bereavement support for high risk women was a key emerging theme Access to bereavement support may mirror factors affecting access to other types of social support Women and their families have diverse needs, expectations and knowledge and provision of support should reflect these Consideration of spiritual beliefs is key in the grieving process
Leeds Institute of Health Sciences Questions