Bilag 1: Litteratursøgning/søgeprotokol
Studie nr. Navn Hold Dato
JM10V128 Karina Dahl Andersen JM10V 03.06.13
JO8119 Stine Roager JM10V 03.06.13
Jordemoderfaglig problemstilling:
Fokus på kvinder der gennemgår en provokeret sen abort pga. anomali hos barnet Problemformulering:
Hvordan oplever kvinder det at gennemgå en provokeret sen abort pga. anomali hos barnet?
Og
Hvordan kan jordemoderen med udgangspunkt i disse oplevelser og med en narrativ tilgang støtte kvinden?
Søgeord/emneord:
Skriv søgeord/emneord ud fra de forskellige hovedpunkter i problemformuleringen.
Overvej om der findes synonymer til de enkelte søgeord/emneord. Overvej trunkering og maskering, samt oversættelse til fremmedsprog, hvis der skal søges i udenlandske kilder/databaser/tidsskrifter
Søgeord Synonym (er) Oversættelse til
fremmedsprog
Provokeret abort Sen abort Abortion, induced abortion,
termination, termination of pregnancy, late abortion
Jordemoder Omsorgsgiver Midwife, midwifery,
caregivers Attitudes
Oplevelser Begivenheder Experience, life experience
life change events,
Psykiske reaktioner Sorg Psycological adaptation,
psycosocial, bereavement
Omsorg Støtte Care, support
Misdannelser Abnormiteter, anomalier Abnormalities, anomaly, fetal abnormalities
Følelser Feelings
2. trimester Second trimester
Kvalitativt studie Qualitative study
Kvinder Women
Håndtering Coping
Informationskilde:
Valg af informationskilder samt kort begrundelse:
(databaser, søgemaskine, internet-hjemmesider mv)
PsycINFO PsycINFO er en engelsksproget database, der indeholder referencer og resumeer fra videnskabelige tidsskrifter og andre publikationer.
Databasen dækker området omhandlende adfærdsmæssige
videnskaber og mental sundhed (EBSCO 2012b). Vi anvendte denne database, da vores projekt indeholder et psykologisk aspekt, og derfor fandt vi det relevant at søge efter videnskabelige artikler her.
Pubmed Pubmed er en engelsksproget database, der indeholder flere millioner videnskabelige artikler og deraf et bredt udvalg af litteratur indenfor medicin, sundhed og sygdom. Vi anså derfor Pubmed som en relevant database at søge i efter videnskabelige artikler til brug i projektet.
Cinahl Cinahl er en engelsksproget database med flere millioner publikationer dateret tilbage fra 1981. Cinahl indeholder referencer til
sundhedsfaglige tidsskrifter og andre publikationstyper (EBSCO 2012a). Da Cinahl indeholder et bredt spektrum af sygeplejefaglige artikler og har en humanvidenskabelig vinkel, anså vi Cinahl for en relevant database at søge efter artikler i, da projektet har et
humanvidenskabeligt fokus.
Google Google er den største søgemaskine på internettet, og vi udførte enkelte søgninger her for at søge efter brugbart materiale til brug i projektet.
Bibliotek.dk Bibliotek.dk er en offentlig tilgængelig søgemaskine på internettet,
hvor det er muligt at søge efter litteratur på alle Danmarks biblioteker.
Vi valgte, at bruge denne søgemaskine, for at søge efter tilgængeligt materiale på danske biblioteker til brug i projektet.
Inklusionskriterier
Overordnede kriterier for litteratursøgningen samt begrundelse for disse:
Fx: Verden, Europa, Skandinavien
Verden: Pga. den sparsomme litteratur på området, valgte vi at inkludere hele verdenen, for at søge så bredt som muligt. Ved enkelte søgninger har Europa, Australien og Amerika været inklusionskriterier, hvis søgningen har givet for mange hits.
Andre kriterier anvendt i databasen ved søgningen samt begrundelsen for disse.
Fx: årstal, studiedesign, sprog mv.
Sprog: Dansk, svensk, norsk, tysk, engelsk – da det er disse sprog, vi behersker.
Kvalitative studier: Da vi ønskede, at vores projekt skulle have et kvalitativt grundlag.
Årstal: Fra 2000 og opefter. Dette blev ikke udført ved alle søgninger, for at få flere artikler frem i søgningerne.
Søgning 1: PsycINFO Fritekst / emneord AND / OR / NOT
Relevante hits
(DE "Induced Abortion") AND (DE "Midwifery") 16 hits, heraf 2 relevante (DE ”Midwifery”) AND (DE ”Attitudes”) AND (DE
”Abortion”)
4 hits, heraf 1 relevant
(DE "Experiences (Events)") AND (DE "Induced Abortion")
28 hits, heraf 1 relevant
(DE "Caregivers") AND (DE "Induced Abortion") 3 hits
Søgning 2: Pubmed Fritekst / emneord AND / OR / NOT
Relevante hits
(("Midwifery"[Mesh]) AND "Abortion, Induced"[Mesh]) AND "Attitude"[Mesh])
27 hits
("Abortion, Induced"[Mesh]) AND "Adaptation, Psychological"[Mesh] AND care)
44 hits
("Abortion, Induced"[Mesh]) AND "abnormalities"
[Subheading] AND feelings
18 hits
("Abortion, Induced"[Mesh]) AND "Life Change Events"[Mesh]
37 hits, heraf 1 relevant
("Pregnancy Trimester, Second"[Mesh]) AND "Life Change Events"[Mesh]
13 hits
Coping AND termination of pregnancy AND qualitative study
23 hits, heraf 1 relevant
Termination of pregnancy AND midwi* 3 hits
Søgning 3: Cinahl Fritekst / emneord AND / OR / NOT
Relevante hits
(MH "Abortion, Induced+") AND (MH "Life Experiences+")
37 hits, heraf 2 relevante
coping AND termination of pregnancy AND qualitative study
2 hits
induced abortion AND experience AND qualitative 46 hits, heraf 1 relevant Midwi* AND termination of pregnancy 3 hits, heraf 1 relevant
Late abortion AND care 7 hits
Late termination of pregnancy 0 hits
Termination of pregnancy AND care AND midwi* 17 hits, heraf 1 relevant Late termination of pregnancy AND care 6 hits
induced abortion AND midwifery 32 hits, heraf 1 relevant Induced abortion AND life experience 34 hits, heraf 1 relevant Induced abortion AND support, psychosocial 1 hit, heraf 1 relevant (MH "Bereavement+") AND (MH "Congenital,
Hereditary, and Neonatal Diseases and
Abnormalities+") AND (MH "Abortion, Induced+")
17 hits
(MH "Fetal Abnormalities") AND (MH "Abortion, Induced+") AND (MH "Life Experiences+")
3 hits
(MH "Fetal Abnormalities") AND (MH "Abortion, Induced+") AND role
7 hits
(MH "Fetal Abnormalities") AND (MH "Abortion, Induced+") AND midwi*
6 hits
(MH "Fetal Abnormalities") AND (MH "Abortion, Induced+") AND women
24 hits
Søgning 4: Bibliotek.dk
Sen abort og jordemoder 1 hit
Provokeret abort og jordemoder 3 hits, heraf 1 relevant
Oplevelser og provokeret abort 3 hits
Oplevelser og sen abort 0 hits
Misdannelser og abort 35 hits
Misdannelser og jordemoder 5 hits
Søgning 5: Google
På Google søgte vi bredt med mange kombinationer af de nævnte søgeord for at afdække emnet for projektet. Ved søgningerne fremkom flere resultater, men ved gennemlæsning af resuméer fandt vi ikke materialet relevant for projektet.
De artikler vi fandt relevante ved gennemlæsning af resuméer, bestilte vi hjem og foretog herefter en gennemlæsning af artiklerne. Vi fandt dog, at ingen af artiklerne var brugbare i vores projekt, da de ikke havde det ønskede fokus. Ved gennemlæsningen af artiklen ”’My brain couldn’t move from planning a birth to planning a funeral’: A qualitative study of parents’ experiences of decisions after ending a pregnancy for fetal abnormality”, highlightet i søgning 3, fandt vi en henvisning til databasen
www.healthtalkonline.org. Denne database indeholder en primær analyse af interviews med engelske kvinder, der har gennemgået en provokeret sen abort. Vi har derfor valgt, at anvende denne primære analyse som den primære empiri i vores projekt.
Bilag 2: Udvalgte temaer
Ending the pregnancy: Going through labour and birth
Going through labour and birth without the reward of a healthy baby at the end is likely to be a difficult experience for most women. The emotional distress that can often accompany ending a pregnancy may make labour more painful for some women, though others found their labour less difficult than they had expected. Several women said that going through labour and birth was an extraordinary experience that they valued because it had brought them together with the baby.
Reference: A
Her baby was born in the maternity ward and she feels glad that she had a chance to have a normal birth.
Reference: B
She wanted the baby to be born in a normal delivery suite with a midwife present and she found the birth went well and that she stayed calm.
Reference: C
Even though she had given birth twice before she found this labour was more physically and emotionally draining.
There were several key aspects of care that women and their partners particularly valued - being able to decide where to have the baby, being cared for by an experienced midwife or nurse, understanding what choices were available about pain relief, and knowing that they could chose whether or not to see and hold the baby afterwards. (See 'Deciding whether to see, hold and name the baby').
Reference: D
She found the birth was less demanding physically than she had expected.
Reference: E
Feels she was well looked after by a nurse on a gynaecology ward and was able to self-administer morphine and gave birth quite easily.
Many women who had experienced childbirth before said that this labour 'felt different'. Several said the labour took longer and others felt that this labour had been more painful than others because their emotions 'were wrapped up in it'. Several women felt that neither their minds nor bodies were 'ready to lose the baby'.
Reference: F
She attributes her painful labour to her body and mind not being ready to lose the baby.
Reference: G
She felt no one was interested in the baby and felt guilty that she had accepted an epidural.
Some of the women who felt their labour and delivery did not go as they had hoped were first-time mothers who hadn't been to antenatal classes and didn't know how to cope with labour.
Several women who had never given birth before said they would have liked more pro-active support - some felt they had been left to cope alone for long periods of time, and several had delivered their babies with no one except their partners present in the room.
Reference: H
She had never had a baby before and didn't know when she was in labour and found herself alone when the baby was born.
Reference: I
She was promised support during labour and delivery but felt that she did not receive it.
Pain relief
Most women, though not all, had pain relief. Some were advised by health professionals that 'there was no point being brave' because pain relief would not affect the baby. Most women took whatever form of pain relief they were offered - sometimes women had been given a pethidine injection, others said they had taken morphine or diamorphine.
Several women took responsibility for their own pain relief and were attached to a PCA device (see resources)). Some women found the drug (most said it was morphine) did not control their pain as much as making them 'feel out of it' and several had taken so much pain relief that they had passed out. Many regretted taking morphine because they felt sick and also because some women found that they lost control of what was happening to them and the baby.
Reference: J
She chose to take morphine not realising that her baby was about to be born and she regretted it because the morphine made her sick and sleepy.
Reference: K
He felt helpless as there was nothing he could do to help his wife as she gave birth.
A few women had gone through labour and delivery with little or no pain relief - one woman who had given birth to 4 children said she 'just got on with it' - another woman had gas and air.
Reference: L
She found that gas and air provided enough pain relief for her on this occasion so that she was able to deliver her baby quite easily.
A few women had asked for an epidural and found that staff were reluctant to give them.
Several people didn't understand why it was difficult to get an epidural - some wondered if they cost too much. One woman thought that health professionals might be reluctant to provide epidurals because they felt that women were experiencing 'emotional' rather than genuine physical pain.
Occasionally women wanted to have - or thought they could have - a caesarean section to avoid going through any kind of labour pain, but caesarean sections are not usually performed in these circumstances.
Women who felt they should have been treated with greater sensitivity during this difficult time, or who sensed that midwives disapproved of what they were doing or who wanted to avoid caring for them, felt disappointed and let down with their care.
Reference: M
Describes her labour and epidural neither of which went as well as she had hoped.
Women were very sensitive about how the baby was handled during and after labour; they wanted the baby to be protected and cared for after s/he was delivered and not left alone or taken away from them for too long. (See also 'Deciding whether to see, hold and name the baby'.)
Several women expressed the view that midwives probably didn't enjoy dealing with terminations and wondered if they had any special training for this role.
Last reviewed May 2012.
Last updated May 2012.
Reference: Field, Kate (2012a): Lokaliseret [010413] på
http://www.healthtalkonline.org/Pregnancy_children/Ending_a_pregnancy_for_fetal_ab normality/Topic/2003/
Ending the pregnancy: Treatment, care and communication
Women ending a pregnancy will be cared for at different stages by different health professionals - midwives, obstetricians, nurses, geneticists - as well as bereavement counsellors and hospital chaplains. When women felt positive about treatment it was usually because they felt they had been offered the support they wanted at the times they felt they needed it. However these needs varied widely - most wanted warmth and compassion, wanting staff to empathise with the loss of a baby, but a few preferred a more matter-of-fact or detached approach.
Most women said that the health professionals who had cared for them were generally compassionate and competent. People remembered personal acts of kindness and valued midwives and doctors who took the time to check up on them afterwards. People also valued health professionals who made a point of acknowledging how difficult their circumstances were and who gave them reassurance at the right moments.
Reference: A
She valued the care she received from everyone on her medical team and felt the midwives took a personal interest in her.
Reference: B
She was touched to have been treated so considerately by the screening coordinator and felt that all her care had been good.
Reference: C
She didn't 'gel' with her hospital midwife but found the community midwife helped both her and her husband.
In some instances though women found that health professionals were awkward and didn't seem to know what to say. Some women felt that certain staff found it difficult to cope with grief, and others said they didn't particularly like being treated in a 'matter-of-fact' manner.
Reference: D
All the specialists she met were professional but she preferred the care of a woman consultant because she was thoughtful and approachable.
Midwives were at the heart of women's experiences of labour and delivery and most felt it was vital to establish a good relationship with them, especially during labour and birth. (Also see 'Going through labour and birth'.) Many women appreciated the care they received from midwives, and valued it when midwives tried to include their partners. But several first-time mothers said they would have liked more information about childbirth and more active support as opposed to observation during labour. A few women felt that the midwife who cared for them didn't have enough experience. Lack of continuity of care from midwives - especially during labour - was also a problem in a few cases.
Reference: E
She was disappointed to be assigned a midwife who didn't seem to know how to reassure or care for her.
Some women felt it was important not to be 'tucked away' and wanted to give birth to the baby on the labour ward. However other women felt that the labour ward was not the right place for them though many appreciated being given their own special room with its own bathroom.
Almost everyone had been offered the chance to see the hospital chaplain whether for a talk, to bless the baby or to arrange a funeral for them and all these services were greatly valued. Many women found that hospital chaplains were able to comfort them because they were used to 'taking on other's sadness' without trying to 'fix everything'. Women remarked on how easily and naturally chaplains acted with the baby - several picked the baby up to bless him/her (see 'Saying goodbye to the baby'.).
Reference: F
She appreciated the way the hospital chaplain helped her deal with what she had done and that he blessed her baby.
Several people found there was a different atmosphere in specialist fetal medicine clinics where they were sent for specialist scans and the diagnosis, and local hospitals where they went for
the termination itself. Though some preferred the atmosphere of the local hospital, several others felt that staff in their local hospitals didn't seem to understand what they were going through.
Reference: G
They found it helpful that staff at the specialist hospital understood them and the difficulties they were facing.
Seeing doctors at a specialist clinic often meant that other specialists were asked to give opinions about the baby. Mostly this was viewed by parents in a positive light, but some were upset when the baby's abnormalities were described by doctors as 'interesting'. (See also 'Ending a pregnancy by induction'.)
Reference: H
He found it difficult when a consultant saw his baby on the scanner and described her as 'interesting'.
Follow-up treatment sometimes didn't come up to people's expectations, particularly when women needed further treatment or consultations if there were any complications following the baby's delivery.
Reference: I
Described how upset she felt to be treated in a matter-of-fact way when she returned to hospital for two D & Cs after a surgical termination.
Reference: J
After the birth of her baby she contracted an infection and had to go back to hospital where the doctor treating her assumed she had a normal delivery.
Some women recalled instances of poor communication between hospitals and hospital staff.
Sometimes medical notes did not arrive in time at clinics, occasionally parents were kept waiting by senior doctors who didn't realise an appointment had been booked. Being kept waiting two or three hours for an appointment about termination in a clinic full of pregnant women was a common cause of distress to many people.
Last reviewed May 2012.
Reference: Field, Kate (2012b): Lokaliseret [010413] på
http://www.healthtalkonline.org/Pregnancy_children/Ending_a_pregnancy_for_fetal_ab normality/Topic/2006/
Losing the baby: Coping with bereavement - women's experiences
Coping with the sadness of losing a baby, regret for what might have been and guilt for having ended a life, can take women months or years - a woman reflecting on what happened to her 8 years ago said 'I don't know if you ever get over it - you learn to live with it'.
Some women said they had accepted the loss of the baby and no longer blamed themselves for what had happened. Several wanted other women to know that it was normal to feel extremely sad at first, but that in time they would recover from the experience and feel better - they wanted others to know that they would feel better in time and that 'something good can come out of it'.
Reference: A
Says that as terrible as it feels at the time the sadness does get better and you can cope with it.
Reference: B
She's learned that you can recover from ending a pregnancy and put your experiences to good use.
Most women described how they felt 'empty' and sad for some weeks after leaving hospital.
Many women had taken time off work - or been given time off work - to help them recover emotionally and physically. Some women said that though they had felt very unhappy for months afterwards and had been wrapped up in their loss, they now accepted what they had done, and said that time had helped to heal them. For many women, having other children to look after helped them feel better and gave them 'a reason to get up in the morning'.
Reference: C
She cried everyday for weeks before realising after several months that she was starting to think about other things.
Reference: D
It has taken many years for her sadness and loss about the baby to shift from the front to the back of her mind.
Everyone coped with bereavement differently - some women wanted to get pregnant again to fill 'the void' left by the baby they had lost, others couldn't face another pregnancy in case the same thing happened again (see 'Deciding whether to have another baby'). Several women had gone away on holiday or for a short break with their partners, though not everyone found this was helpful.
Many women derived great comfort from their families and also from the strength of their relationship with a partner or husband. Several women who had gone through the termination many years ago said that other life events that had happened to them since the termination had helped them see the loss of the baby in a wider perspective.
Reference: E
Describes feeling in limbo afterwards and says that it had helped her to get away from home for a while.
However, some women's feelings of loss carried on for some time - and also after the birth of another baby - and several had needed professional help and support. Generally women had asked the GP for advice, or been offered help by the midwife. Other women had arranged counselling and other kind of therapy for themselves (see 'Counselling and other kinds of support'). Several women who had ended a pregnancy within the last two years said they were still finding life without the baby extremely difficult.
Reference: F
Still feels she hasn't come to terms with her guilt about the baby's death which happened two years' ago.
Reference: G
She can remember everything about her baby who died less than a year ago, and still thinks about him every day.
In the year following the termination, most women we talked to had experienced some periods when they felt particularly low. Some women said they had asked themselves, 'Why me?', or