Leeds Institute ofHealth Sciences

Dr Katie SpicerDr Ghazala Mir

NHS Airedale, Bradford and Leeds; LeedsTeaching Hospitals Trust; Bradford TeachingHospitals Trust; Bradford District Care Trust;

Leeds Community Health Trust

ESRC Grant Ref: RES-061-25-0509

Infant Mortality and Social Networks:Perspectives on Bereavement

Outline

• Introduction to study: socialsupport and birth outcomes

• Women’s perspectives ofbereavement care and support

• Feedback from one participant onbehalf of the Leeds ProjectDevelopment group

• Questions

Background

• Social exclusion and inequalities in infant mortality

• Infant mortality rate (IMR) for babies of mothersborn 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 mothers5.4/1000

• Risk reduction strategies suggested includeoptimising maternal and mental health, addressingenvironmental stressors, improved services andincreased social support for women at risk (DH2007)

Plan of investigation

1. Explore the current evidence, policy guidance andlocal context

2. Interview women from a range of backgrounds in twomatched groups who have

1. experienced an infant death OR

2. a child over one year old

3. Analyse data using quantitative and qualitativemethods

4. Project development groups using participatoryresearch methods to develop solutions to problemsidentified, working with professionals in statutory andvoluntary sectors in Leeds and Bradford

Details of sample of bereavedwomen

Risk group by ethnicbackground and age

Leeds Bradford Total

Pakistani (one teenagemother, 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 atinterview)

Numbersaffected

Genetic condition confirmed or suspected 10

Prematurity (included incompetent cervix,bicornuate uterus)

6

Perinatal death, one associated withpreeclampsia

3

Sudden death at home, cause unknown 2

Infection in utero (CMV) and sepsis inneonatal period

2

TOTAL 23

Women’s Priorities:Relationships

Being listened toand takenseriously

Empathy, feelingunderstood,emotionalsupport

Not beingjudged/

stereotyped

Feelingencouraged/

reassured, havingconfidence boosted

Having confidenceto ask questions

Not being lonelyor isolated in

hospital

Bere

ave

ment

support

Women’s Priorities:Knowledge

Being taughtwhat youneed toknow

Beinginformed

aboutwarning

signs

Fears aboutcaring for

sick child athome

Havinghonest, clearand completeinformation

Women’s Priorities: ServiceDesign

Better interpreting provision

More resources in different languages

Staff from different ethnicbackgrounds

Professionals keeping in touch witheach other

Including women in decisions abouthow to run services

Targeted support for women at mostrisk

Bereavement support

• Many women spoke of the presence or absence ofsupport in both hospital and community settings duringtheir process of grieving

• Bereavement support recognised by women as importantfor on-going health and well being

• There were diverse needs, expectations and priorknowledge expressed by women and their families inrelation to bereavement, including the importance ofconsideration of spiritual beliefs

• Factors at play in accessing bereavement support maymirror those affecting access to support for other healthneeds; 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 familymembers, 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 inBRI. 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 familycoming to see me, there was no one really that wouldcome to my room. I thought there should have beensomeone...some sort of support...some midwifecoming...they’d come and do their checks and theywould go. They didn’t really come and sit with me, youknow, have a one to one chat with me, to see how it’sgoing, you know, nothing. No support like that in anyway. 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 timesafter he passed away, and she really was a help.”

• Women appreciated encouragement to be involved intheir baby’s care, particularly holding their baby in thelast moments

• Women also reported staff members who were notempathic and whom they didn’t feel they could trust

• Staffing levels on neonatal units a problem; nurses takenup with practical tasks which can limit engagement withfamilies (KI, neonatologist in Leeds)

Uncertainties and conflictingmessages

• Key informants and women both described situations ofconflict around withdrawal of treatment and end of lifedecisions, in particular where diagnosis and prognosis wereuncertain

• It upsets you, thinking: “Well, how long have I got?Maybe days, weeks, months”. So we didn’t know A wasgoing to live for 3 months...” (Pakistani participant,Bradford)

• Accepting that the prognosis is poor and that treatment wouldbe futile was often difficult for parents, particularly where notmany 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 areligious perspective as well as medical

• “They [staff] do so much, they try as much as they canand whatever happens it’s in God’s hands” (Pakistaniparticipant, Bradford)

• “It was very tough..I think the only thing that kept megoing was my faith, to honest with you...” (Pakistaniparticipant, Leeds)

• Doctors’ perspectives acknowledged to be at timescontradictory to the views of communities with strong faithconvictions

• Access to advice from a faith based source/chaplain or Imamcould aid understanding and decision making for families

Community Support

• Some women described good support, sometimes over anextended 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 wentthat extra mile to make me feel like it was genuinelyupsetting for her as well [...] and you’re not just anumber on a register...”

• Others described an absence of ongoing support:

“She died and that’s the end of the story. I saw thehealth visitor once, saw the social worker once andthat’s it. Nobody else- it was like she didn’t exist. Iknow that doctors are too busy...I was just there on myown because my husband didn’t want to talk about it...”

Communication betweenprofessionals

• A few bereaved women described visits frommidwives who were unaware of their loss, asking toweigh the baby

• More than one woman had repeated visits fromdifferent members of a community midwifery team,with the expectation of a live baby

• Community teams not sharing information affectedtrust and confidence for further care:

“I think at that point I stopped relying on them. Istopped going to them. I stopped listening tothem” (Pakistani participant, Bradford)

Access to bereavement support

• No direct access to bereavement support in Leeds fromneonatal unit; previously a dedicated post (KI,neonatologist)

• Overall lack of services around bereavement for somegroups (KI, Haamla, Leeds)

• Women valued empathy and caring approach from all staff

• Some women expressed a preference for support fromsomeone of a similar cultural or religious background, oftenin a context where they hadn’t received support fromprofessionals

• Bereavement counselling situated right at end of maternityward; “not ideal” (teenage mum, Bradford)

Voluntary services: SANDs

• Recognition by SANDs that needs of clients fromdifferent backgrounds not being met with existingservices

• Plan for a pilot over 3 sites in England with a workerfrom minority ethnic background

• Many women interviewed were not aware of SANDs

• Group, evening meeting and mixed gender context notpreferable for many women

• Excellent support from SANDs volunteers in Leeds andBradford in working with Project Development Groups

• Possibility of a BLISS group starting in Bradford

Family support

• “Being from the Asian community, the network offamily, friends and work colleagues if we are working-it’s good because we’ve got the support there.”(Pakistani participant, Bradford)

• Family and personal networks may have differentexpectations of the grieving process, or lack understandingof what might help: “...don’t cry, you are not supposed tocry...” and on the fourth day: “Look, you can stopgrieving now...” (Pakistani participant, Bradford)

• “I used to just sit and cry and cry, she was like don’t besilly, 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 theirgrief and the impact of the loss with their partner:

“You know until now me and my husband, we don’t talkabout it. He won’t talk about it to me. He just changesthe subject.” (Pakistani participant, Bradford)

• Examples of partners suffering stress and depression,suicide attempts

• Women having to interpret for partners, even when havingbad news broken or dealing with loss

• Need for bilingual counsellors to work with couples whereone partner doesn’t speak English

Need for specific support forAsian women

• “Any Asian lady that can’t speak English she’s gotnobody to turn to because she goes back home afterdelivering this baby. The baby is taken away, buried andshe’s got no one” (Pakistani participant, Bradford)

• “Some of them [Asian mums] do really suffer in silenceand not know where to get the support...you accept itbecause that’s the done thing and move on.” (KI workingfor Bradford doula service)

• “I felt really lost...there was no one there, me and myhusband, we’d cried, we did need support, but we didn’task for it and there was no one...so it was our fault to behonest 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 wasthat” (Bradford participant)

• Another described how she didn’t want to see anyoneconnected 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 everyonehas. There’s always something to bring it all back”

• One mum had a few counselling sessions and then itended: “Because I’d stopped crying in everysession...it was a bit like, “right, you don’t need meanymore””.

Summary

• This study explores social support and social networksfor women at highest risk of an infant death, up until theloss of their baby

• The presence and quality of bereavement support forhigh risk women was a key emerging theme

• Access to bereavement support may mirror factorsaffecting access to other types of social support

• Women and their families have diverse needs,expectations and knowledge and provision of supportshould reflect these

• Consideration of spiritual beliefs is key in the grievingprocess

Leeds Institute ofHealth Sciences

Questions