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Journal of Biosocial Science http://journals.cambridge.org/JBS  Additional services for Journal of Biosocial Science: Email alerts: Click here Subscriptions: Click here Commercial reprints: Click here Terms of use : Click here ‘MAYBE IT WAS HER FATE AND MAYBE SHE RAN OUT OF BLOOD’: FINAL CAREGIVERS' PERSPECTIVES ON ACCESS TO CARE IN OBSTETRIC EMERGENCIES IN RURAL INDONESIA LUCIA D'AMBRUOSO, PETER BYASS and SITI NURUL QOMARIYAH Journal of Biosocial Science / Volume 42 / Issue 02 / March 2010, pp 213 - 241 DOI: 10.1017/S0021932009990496, Published online: 17 December 2009 Link to this article: http://journals.cambridge.org/abstract_S0021932009990496 How to cite this article: LUCIA D'AMBRUOSO, PETER BYASS and SITI NURUL QOMARIYAH (2010). ‘MAYBE IT WAS HER FATE AND MAYBE SHE RAN OUT OF BLOOD’: FINAL CAREGIVERS' PERSPECTIVES ON  ACCESS TO CARE IN OBSTETRIC EMERGENCIES IN RURAL INDONESIA. Jour nal of Biosocial Science, 42, pp 213-241 doi:10.1017/S0021932009990496 Request Permissions : Click here Downloaded from http://journals.cambridge.or g/JBS, IP address: 12.183.71.67 on 04 Dec 2015

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Journal of Biosocial Sciencehttp://journals.cambridge.org/JBS

 Additional services for Journal of Biosocial Science:

Email alerts: Click here

Subscriptions: Click hereCommercial reprints: Click hereTerms of use : Click here

‘MAYBE IT WAS HER FATE AND MAYBE SHE RAN OUT OF BLOOD’: FINALCAREGIVERS' PERSPECTIVES ON ACCESS TO CARE IN OBSTETRICEMERGENCIES IN RURAL INDONESIA

LUCIA D'AMBRUOSO, PETER BYASS and SITI NURUL QOMARIYAH

Journal of Biosocial Science / Volume 42 / Issue 02 / March 2010, pp 213 - 241

DOI: 10.1017/S0021932009990496, Published online: 17 December 2009

Link to this article: http://journals.cambridge.org/abstract_S0021932009990496

How to cite this article:LUCIA D'AMBRUOSO, PETER BYASS and SITI NURUL QOMARIYAH (2010). ‘MAYBE IT WASHER FATE AND MAYBE SHE RAN OUT OF BLOOD’: FINAL CAREGIVERS' PERSPECTIVES ON ACCESS TO CARE IN OBSTETRIC EMERGENCIES IN RURAL INDONESIA. Journal of Biosocial

Science, 42, pp 213-241 doi:10.1017/S0021932009990496

Request Permissions : Click here

Downloaded from http://journals.cambridge.org/JBS, IP address: 12.183.71.67 on 04 Dec 2015

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‘ MAYB E I T WAS H E R F AT E AN D MAYB E SH E

RAN OUT OF BLOOD’: FINAL CAREGIVERS’PERSPECTIVES ON ACCESS TO CARE INOBSTETRIC EMERGENCIES IN RURAL

INDONESIA

LUCIA D’AMBRUOSO*, PETER BYASS*†   SITI NURUL QOMARIYAH‡

*Immpact, Population Health Section, University of Aberdeen, UK,   †Umeå Centre

 for Global Health Research, Epidemiology and Public Health Sciences, UmeåUniversity, Sweden and   ‡Immpact, Center for Family Welfare, Faculty of Public

Health, University of Indonesia, Indonesia

Summary.  Maternal mortality persists in low-income settings despite prevent-

ability with skilled birth attendance and emergency obstetric care. Poor access

limits the eff ectiveness of life-saving interventions and is typical of maternal

health care in low-income settings. This paper examines access to care in

obstetric emergencies from the perspectives of service users, using established

and contemporary theoretical frameworks of access and a routine healthsurveillance method. The implications for health planning are also consid-

ered. The final caregivers of 104 women who died during pregnancy or

childbirth were interviewed in two rural districts in Indonesia using an

adapted verbal autopsy. Qualitative analysis revealed social and economic

barriers to access and barriers that arose from the health system itself. Health

insurance for the poor was highly problematic. For providers, incomplete

reimbursements, and low public pay, acted as disincentives to treat the poor.

For users, the schemes were poorly socialized and understood, complicated to

use and led to lower quality care. Services, staff , transport, equipment and

supplies were also generally unavailable or unaff ordable. The multiple

barriers to access conferred a cumulative disadvantage that culminated in

exclusion. This was reflected in expressions of powerlessness and fatalism

regarding the deaths. The analysis suggests that conceiving of access as a

structurally determined, complex and dynamic process, and as a reciprocally

maintained phenomenon of disadvantaged groups, may provide useful

explanatory concepts for health planning. Health planning from this perspec-

tive may help to avoid perpetuating exclusion on social and economic

grounds, by health systems and services, and help foster a sense of control at

the micro-level, among peoples’ feelings and behaviours regarding their

health. Verbal autopsy surveys provide an opportunity to routinely collect

J. Biosoc. Sci., (2010)   42, 213–241,     Cambridge University Press, 2009doi:10.1017/S0021932009990496 First published online 17 Dec 2009

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information on the exclusory mechanisms of health systems, important

information for equitable health planning.

Background

Maternal mortality in developing countries

Maternal ill health is a serious public health problem in developing countries.

Over 99% of the 536,000 maternal deaths estimated worldwide in 2005 occurred in

less-developed countries (WHO   et al ., 2007). In addition, over 30 million women

suff er illnesses and long-term disabilities from the complications of pregnancy and

childbirth (Filippi   et al  ., 2006). Maternal mortality has also proved to be an

intractable problem; globally, there has been no detectable change in levels of 

maternal mortality in almost three decades (WHO & UNICEF, 1996; WHO   et al .,

2001, 2004a, 2007a).Epidemiological studies have revealed that during the intrapartum period, and the

days directly after, the risk of mortality is significantly elevated (Ronsmans &

Graham, 2006), and that the direct complications of pregnancy and childbirth (i.e.

haemorrhage, hypertensive disorders, sepsis, abortion and obstructed labour) are

responsible for the majority of deaths (Khan   et al ., 2006). This information has

provided the evidence base for a core strategy of intrapartum care in health centres

(Campbell & Graham, 2006).

Key interventions are: (1) skilled birth attendance, delivery attended by an

accredited health professional who functions within an enabling environment of 

transport, drugs and supplies; and (2) emergency obstetric care (EmOC), a packageof medical interventions required to treat the main direct complications of pregnancy

and childbirth (noted above). With sufficient coverage and utilization of these

interventions, it is estimated that over 90% of maternal mortality could be prevented

(Kilpatrick   et al ., 2002; Bartlett   et al ., 2005; Campbell & Graham, 2006).

Provision and uptake of care are problematic due to the ‘massive deprivation in

access’ characterized by the ‘sheer scarcity of staff   and the excessive costs of care to

mothers’ (Filippi  et al.,   2006). In an emergency, when care may be required suddenly

and/or at difficult times (e.g. at night), ensuring access is particularly difficult. Access

is also typically constrained for vulnerable or marginalized groups (Weiss &

Greenlick, 1970). A vast array of studies have demonstrated barriers to, or

inequalities in, access related to social, cultural and economic disadvantage (Ensor &

Cooper, 2004; Cham  et al ., 2005; Richard  et al ., 2008b), rurality and lack of transport

(McCaw-Binns   et al ., 2001; Davis-Floyd, 2003), and as arising from health policy

(Mavalankar & Rosenfield, 2005), systems and services (McCaw-Binns, 2005).

This article is concerned with describing and explaining access to health care in

obstetric emergencies. Access is examined from the perspectives of the final caregivers

of women who died during pregnancy or childbirth in two rural districts in Indonesia.

Established and contemporary theoretical frameworks of access and a routine health

surveillance method are used to consider the implications for health research and

planning.

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The concept of access

One of the most influential theoretical models of access to health care is the

Andersen Behavioural Model (ABM) (Andersen & Newman, 1973; Aday & Andersen,

1974; Andersen, 1995). It consists of determining factors related to individuals and

systems that influence health behaviour and service utilization (with the latter used asa proxy for access). Explanatory variables include: ‘predisposing factors’, e.g. age, sex

and education; ‘enabling factors’, e.g. wealth, organization of services; and ‘need’, e.g.

symptoms. The ABM, arguably the dominant concept of access, is used widely in

policy and research (Gold, 1998; Eden, 1998; Ricketts & Goldsmith, 2005).

Other models have focused on the interaction between users and services.

Penchansky & Thomas (1981) have considered the ‘fit’ between patients’ needs and

services’ ability to meet those needs. The Institute of Medicine has also conceived of 

access as an interaction between personal characteristics and structural features giving

rise to service utilization and health outcomes (Millman, 1993).

Dixon-Woods and colleagues (2006) recently developed a framework that con-

ceives of access as a dynamic, multi-dimensional, contingent process. They argue that

utilization, conceptualized and measured relative to affluent groups, overlooks the

issues of vulnerable groups, for whom access is typically constrained. They propose

‘candidacy’, or eligibility of care, as an alternative.

Candidacy encompasses a series of negotiations related to how individuals come

to use or receive care. These are: ‘identification of candidacy’ (how disadvantaged

people identify need in regard to specific events or crises), ‘navigation’ (an awareness

of services and mobilization of resources), ‘permeability of services’ (how easily people

can use services), ‘appearances’ (the ability of an individual to present credibly and

articulately), ‘adjudications’ (providers’ judgements or decisions that allow, or

disallow, access), ‘off ers and resistance’ (acknowledging that some refuse care that hasbeen off ered) and ‘operating conditions of the local production of candidacy’

(perceived and actual availability of health care determined by local conditions and

revealed through repeated encounters of individuals and providers) (Dixon-Woods

et al.,   2006).

Models and frameworks have traditionally been used for measurement to select

categorized variables and objectively evaluate trends and relationships between

determinants of utilization to empirically demonstrate inequities in access. Over time,

however, conceptualizations of access have come to reflect context-specific inter-

actions between individuals and services. Finally, the concept of barriers to access

(defined as individual and systemic social and economic factors that lead to reducedaccess (McCullock-Melnyk, 1988)) is said to be deficient in that it is derived from the

viewpoints of professionals and fails to take into account the ‘lived experiences’ of 

service users (McCullock-Melnyk, 1990; Sword, 1999).

‘Three delays’ framework 

The ‘three delays’ framework is a classic pathways-based conceptualization of 

access to good quality EmOC (and thus maternal mortality prevention) rooted in the

perspective of the service user (Thaddeus & Maine, 1994). Developed in the 1990s as

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part of the Prevention of Maternal Mortality programme at Columbia University, the

framework is concerned with timely treatment of obstetric complications to prevent

deaths and focuses on the interval between onset of a complication and receipt of 

care.

This framework sets out that delays may occur in an obstetric emergency in one

or more of three ‘phases’: (a) in the decision to seek care (phase 1); (b) in the journeyto care, once a decision to seek care has been made (phase 2); and/or (c) in receiving

good quality care when a facility has been reached (phase 3).

Delays that occur in phase 1 are related to distance, cost and (perceived) quality

of services, women’s autonomy, economic status, education, illness and cultural

factors. Despite cultural beliefs aff ecting preferences for care, Thaddeus & Maine

(1994) acknowledge the interplay of structural and individual factors: ‘a narrow focus

on “cultural barriers” obscures the role that institutional inadequacies and economic

considerations play in the decision to seek care’. Phase 2 delays refer to obstacles in

reaching health facilities, including the distribution of facilities, travel distances and

transport. Delays occur in phase 3 due to shortages of staff  and equipment, and poororganization and management.

The framework has been used extensively in studies of maternal mortality in

developing countries. Its applications include: quantifying the incidence of delays for

service planning in Haiti and Nigeria (Okonofua   et al ., 1992; Barnes-Josiah   et al .,

1998); community-based investigations of maternal mortality in Zimbabwe (Fawcus

et al ., 1996); multivariate analysis into the determinants of delay in Bangladesh

(Killewo   et al ., 2006); verbal autopsy in Afghanistan (Bartlett   et al ., 2005) and

Pakistan (Bartlett  et al ., 2002); and clinical audit in Tanzania (Mbaruku  et al.,  2009).

It has also been used to design community-oriented strategies (Sibley & Armbruster,

1997), to examine the influence of women’s social positions on maternal mortality inNigeria (Wall, 1998) and to research health-seeking behaviours and perceptions of 

quality in rural Haiti (White   et al ., 2006), Malawi (Barber, 2003), Bolivia (Otis &

Brett, 2008) and Guatemala (Berry, 2008).

Rationale

Over a decade ago, a technical consultation marking ten years of the Safe

Motherhood Initiative set out improving access as a key action message (Starrs,

1997). Research and programmes implemented since then recognize the importance of 

equitable access (ACCESS, 2009; Averting Maternal Death and Disability Program

(AMDD), 2009; Family Care International, 2009). Despite this, access to EmOC

remains poorly defined and difficult to ensure for poor and rural women in obstetric

emergencies. The rationale for this paper is to improve understandings of access to

EmOC and to inform research and policy to provide it.

Study setting 

The study was conducted in January 2008 in the Serang and Pandeglang districts

of Banten province, Java, Indonesia. Indonesia has a population of over 220 million,

88% of which are Muslim (Badan Pusat Statistik-Statistics Indonesia (BPS) & ORC

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Macro, 2003). Two-thirds of the population live in rural locations (BPS & ORC

Macro, 2003) and more than half on less than US$2 per day (World Bank, 2006).

With a population of over 123 million, Java, with Jakarta in the west, is the most

densely populated of all Indonesia’s 17,000 islands (BPS & ORC Macro, 2003).

The maternal mortality ratio for Indonesia is estimated between 307 (BPS & ORC

Macro, 2003) and 420 (WHO  et al ., 2007) maternal deaths per 100,000 live births. Atsub-national level, ratios of 212 and 628 have been measured in urban Serang and

rural Pandeglang respectively (Ronsmans   et al ., 2008) and extremely high levels of 

2303 have been demonstrated among the poorest women in these districts (Ronsmans

et al ., 2009).

Home deliveries are common. Nationally, two in every three live deliveries occur

in the home (BPS & ORC Macro, 2003; Achadi   et al ., 2007), over 80% in the study

districts (Ronsmans   et al ., 2009). Uncertified Traditional Birth Attendants (TBAs or

dukun bayi ) attend two in every three deliveries for uneducated women and two of 

every five in rural areas (BPS & ORC Macro, 2003).

Rural villages are served by the   bidan di desa   (village midwife) programme.Launched in 1989, it aims to post a qualified midwife in every rural village to live as

part of, and provide integrated maternal and child health (MCH) services to, the

community (Shankar  et al ., 2008). Despite two decades of support, the coverage and

quality of services is compromised in remote and rural areas (Makowiecka   et al .,

2008), with the poor obtaining unequal access to services (Ensor   et al ., 2008),

particularly life-saving EmOC (Ronsmans   et al ., 2001; Hatt   et al ., 2007).

Indonesia has a decentralized governance system, of which villages (desa)  are the

lowest level. Serang District has 373   desa,   80% of which are rural, and a population

of 1.7 million. There is one district referral hospital, two private hospitals, and 36

health centres ( puskesmas), ten with beds. Pandeglang is more remote with apopulation of 1.1 million and 335  desa, of which over 90% are rural. Pandeglang has

one public comprehensive EmOC facility and 30  puskesmas,  five with beds (Izati  et al .,

2005; Makowiecka   et al.,   2008). Villages are also served by  posyandu, an integrated

health post used for primary preventative care. Unpaid volunteer health workers

(kader) provide basic care through  posyandu. Five  kader  usually operate per  posyandu.

Following the economic crisis in 1997, the government introduced health insurance

for the poor through a publically owned commercial insurance organization.   Jaring 

Pengaman Sosial   (JPS), or social safety net schemes, use village authorities to identify

and exempt poor families from the costs of care. The schemes do not waive the costs

of incidentals, medication or transport (Sparrow, 2008). At the time of the study, an

insurance scheme called  Asuransi Kesehatan untuk Keluarga Miskin  (ASKESKIN), or

health insurance for the poor, was in operation.

Methods

Verbal autopsy

A routine health surveillance method called verbal autopsy was used. Verbal

autopsy is an established health surveillance technique used to generate cause-specific

mortality profiles in populations with significant numbers of deaths outside health

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facilities and/or poor routine certification (WHO, 2007). It is widely used in over 30

countries (Baiden  et al ., 2007). In a verbal autopsy, final caregivers are interviewed on

the medical signs and symptoms of the deceased prior to death. The interview data

are then interpreted to establish a medical cause of death. Recently, verbal autopsy

has been used to collect additional information on non-medical causes, circumstances

and events surrounding deaths (WHO, 2004). In this study, verbal autopsy wasextended in this manner, to collect information on the interaction of women with

health services.

Identifying women and respondents

Women who had died during pregnancy, childbirth or within six weeks of 

pregnancy ending, regardless of whether they had died in or been cared for in a

facility, were identified from a previous survey conducted in the study districts. The

previous study used village-based informants, volunteer health workers (kader) and

unpaid village officials (rukun tetangga), to collect information on maternal deathsthat had occurred between January 2004 and December 2005. This study identified

474 such deaths (Ronsmans   et al ., 2009).

A total of 104 cases were purposively selected. The basis of the selection was

two-fold: first, it reflected the profile of causes from the original survey; and second,

based on geographical and resource feasibility, 104 cases represented a feasible

number of interviews to conduct. The cases were not selected randomly and the

selection did not seek to represent, nor make inferences for, the wider population.

District Health Office staff , consulted in the weeks prior to the survey, provided

valuable support in making contact with families of deceased women. Families were

approached for permission to conduct the interview through village leaders, commu-

nity health staff   (including village midwives and   kader) and others as possible and

necessary.

Ethical considerations

Informed consent was gained from all respondents. This included an explanation

of the study, a guarantee of anonymity and assurance that participation would not

have any bearing on the availability of health services to respondents or their families.

Participants were not obliged to answer questions, and could stop the interview at any

time and for any reason. Respondents were also given a gift at the end of the

interview as a gesture of goodwill and as compensation for time that may haveotherwise been spent generating income. The gift consisted of soap, shampoo, a

toothbrush and toothpaste.

Ethical approval for the study was granted from the Faculty of Public Health,

University of Indonesia and the College of Life Science and Medicine, University of 

Aberdeen.

Interview

The interview contained two parts. Firstly, as in a traditional verbal autopsy, a

series of 75 checklist-style closed questions were used to collect information on

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medical signs and symptoms, from which a medical cause of death was interpreted.

These were developed on the basis of standard verbal autopsy questions (WHO,

2007). Information was also collected on socioeconomic status through standard

questions on asset ownership.

In the second part, respondents were asked about the circumstances and events

surrounding the death in a semi-structured format with free dialogue. Respondentswere asked to recount the events between onset of the complication until death,

according to the ‘three delays’ framework (Thaddeus & Maine, 1994). At the end of 

the interview, respondents were also asked their opinions on the preventability and

cause of death.

Descriptions of the general conduct of health professionals were invited, but

questions were not asked about their clinical actions due to the likelihood that

respondents were not in a position to be either exposed to or critique them in

anything more than general terms. As a result, technical aspects of care, particularly

those in facilities, cannot be examined in an equivalent manner.

Interviewers

Four public health graduates with general medical backgrounds (one nursing,

two midwifery and one public health), and who were also familiar with the local

context, were recruited and trained. In order not to impose a diagnostic line of 

enquiry (implicit or explicit) onto the interview, doctors were purposely not recruited.

Although the majority of the work was conducted in Bahasa Indonesian, the

abilities of the interviewers to communicate in the indigenous languages of the

districts, Javanese and Sundanese, and in English, was also useful in maximizing

communication between interviewers, respondents and researchers.Three days of training were provided that adopted a role-playing format. Actions

and situations such as audio-recording, gaining informed consent and potentially

difficult or unwilling respondents were rehearsed to prepare the interviewers to

respond to the informants and their ability to describe the cases. The researchers

SNQ, PB and LD conducted the training and observed or participated in the

interviews. The interviews were conducted in Bahasa Indonesian, with some exchanges

in Sundanese and Javanese, and typically lasted 60–90 minutes. They were

audio-recorded for transcription and translation, with observations noted on paper.

Data analysis

Descriptive statistics were prepared on the characteristics of women and respond-

ents, and probable causes of death were interpreted from the data collected in the first

part of the interview (see Fottrell   et al . (2007) for a description of the interpretation

method). The narratives gained in the second part of the interview were regarded as

representations of women’s lived experiences of health care and constituted the main

subject of the analysis.

The audio recordings were transcribed and translated into English and qualitative

analysis was performed. A combined inductive/deductive, iterative approach was

adopted whereby the ‘three delays’ framework and respondents’ opinions regarding

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the preventability and cause of death provided an initial coding frame (‘mega-

themes’). Through a detailed examination of the transcripts, further recurring

descriptive themes and sub-themes that emerged were used to supplement the initial

coding frame. Explanations of access to care were constructed by considering patterns

and relationships across the themes.

The researcher LD systematically searched and manually coded the data forrecurring themes until thematic saturation was reached (the point at which no new

categories, factors or explanations emerged). The results of the analysis are presented

with supporting verbatim quotes from the interviews. Where quotes are provided, the

relationship of the respondent to the deceased, the anonymized case reference number

and probable cause of death are also indicated.

Results and Discussion

Characteristics of the women and respondents

Over three-quarters of the women were aged 20–39 years at death; virtually all

were married and almost half were employed. The majority were literate, with

primary education. Husbands earned income mainly through labouring, informal

work and transport. Half of the women had 1–3 previous live deliveries, a quarter had

none and a quarter more than seven (Table 1). Just under half the women died at

home, a similar proportion in a facility and six died  en route. The respondents were

mainly close relatives of the woman (parent, parent-in-law, spouse, sibling or child)

and most had lived in the same household. Respondents had an average age of 47 and

the majority were literate (data not shown).

Causes and delays

The leading medical cause of death was sepsis, accounting for one-third of the

deaths. Haemorrhage and malaria together accounted for one-fifth and small

proportions were due to pregnancy-induced hypertension, unsafe abortion and

obstructed labour. Indirect causes (including conditions such as tuberculosis, human

immunodeficiency virus (HIV), diabetes and cardiovascular disease) accounted for

over a third of deaths (Table 2). Delays in the decision to seek care were reported by

nearly half the respondents. Delays in reaching care were reported by two-thirds, and

in receiving care in almost half of the cases (Table 3). These results are discussed in

greater depth elsewhere (D’Ambruoso   et al ., 2009; Byass   et al ., 2009).A thematic account of experiences of EmOC and perspectives on causation

and preventability is provided below. The thematic framework is presented in

Table 4.

The decision to seek care (Phase 1)

Poor birth preparedness/emergency readiness. Most women sought traditional

therapies, including stomach massages and herbal medicines, from TBAs (dukun)

during pregnancy. Women also generally sought antenatal care on more than one

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occasion with a village-based midwife. A common belief, recounted by respondents as

being perpetuated by both women and providers, was that if a pregnancy was

established as ‘normal’ by a midwife during antenatal care, then the delivery would

be presumed to be uncomplicated. Midwives were thought to be unnecessary for

‘normal’ deliveries and were only called when a complication arose.

Interviewer: Did the midwife recommend having the delivery with the midwife or at hospital?

Father: No, she was healthy. (Case 543215, Haemorrhage)

As a result, women generally planned to deliver with   dukun, with little provision

for going to hospital in the event of a complication. If families failed to prepare

transport, finances and blood donors etc., then delays were incurred when unexpected

complications arose because the decision to seek care, and associated negotiations and

arrangements, still had to be made.

Interviewer: Did you call the midwife?

Sister: No . . . we did not call [the midwife].

Interviewer: And then who told you to bring her to hospital?Sister: Relatives, we discussed it.

Interview: You discussed it. It happened at 8 pm, and she was brought at . . .?

Sister: In the morning.

Interviewer: The event was at night, why did you bring her in the next morning? She had fainted;

she should be brought to hospital that night.

Sister: I do not know, maybe because we were shocked, and then . . . because we were far from

the main road, nobody had the chance to go there to seek the car.

Interviewer: During the night of the event until the next morning, what happened to [name]? Did

she faint or continue bleeding? What happened maam?

Sister: Yes . . . she had bleeding all night long.

Interviewer: From night until morning?

Sister: Yes. (Case 448106, Ectopic pregnancy)

Unmet need for community-based care in obstetric emergencies. Despite being

‘first-line’ delivery attendants, TBAs are not trained or equipped to manage

complications (Bailey   et al  ., 2002). When unexpected complications occurred,

traditional medicine was often administered before a midwife was called.

Interviewer: Did he [traditional healer] give some kind of water or something?

Mother-in-law: He gave water, but he didn’t say anything.

Interviewer: Did he ask to take her to hospital for instance?

Mother-in-law: Nope.

Interviewer: What did he do at that time?

Mother-in-law: He did nothing.Respondent 2: Only [cast] the spells . . . (Case 267305, Pregnancy-related sepsis)

When a midwife was called, further delays were usually introduced because of the

general shortage of health staff   in villages.

Husband: The dukun  pulled the placenta but it did not work. It was raining heavily, so when they

called the midwife it took longer for her to arrive. Because the rain was heavy, she could not be

saved by the time the midwife arrived. (Case 518105, Diabetes)

Respondent 2: There used to be a  posyandu   [integrated health post for rural areas], but only in

name . . . there was no function of it . . . Kind of, inactive.

Interviewer: How about the midwife around here?

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Respondent 1: There was no midwife. (Case 305302, Pregnancy-related sepsis)

Mother-in-law: When the midwife came she had already passed away. (Case 267305, Pregnancy-

related sepsis)

The poor availability of midwives can be attributed to their low public pay, which

necessitates their developing private practice. More than two-thirds of midwives’

salaries come from private practice and over 90% generate income this way (Ensor

et al ., 2008). As a result, midwives tend to prefer clients who can pay for services

immediately and they are discouraged from establishing practices in rural areas where

it is harder to make a private income.

Interviewer: What did midwife [name] say, why was the deceased brought to her house? Why

didn’t she help her to deliver at home?

Husband: She said that she had a lot of patients, she was busy. (Case 292101, Kidney disease)

Table 1.   Characteristics of the 104 women who died

Characteristic   n  (%a)

Age <20 6 (6)

20–29 45 (43)30–39 34 (33)

40–49 19 (18)

R50 0 (0)

Education None 5 (5)

Primary 67 (64)

High school 31 (30)

Other 1 (1)

Literate 97 (93)

Worked for income 45 (43)

Married 103 (99)

Husband’s occupation Labourer/informal sector 67 (64)

Transport 20 (19)

Farmer 10 (10)

Government/formal sector 4 (4)

Unemployed 1 (1)

Not applicable (not married) 1 (1)

Gravidity 1–3 54 (52)

4–6 26 (25)

R7 24 (23)

Parity 0 17 (16)

1–3 48 (46)

4–6 23 (22)

R7 16 (15)Place of death Home 50 (48)

Facility (hospital/health centre) 48 (46)

En route   6 (6)

aTotals may be >100% due to rounding.

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In the cases where the midwife attended the woman in her household, and in time,

the situation had to be clinically assessed before a referral could be made. In several

cases, the midwife was also ill-equipped and/or had to convince the family of the need

for referral, introducing further delays.

Table 2.   Mortality profile of the 104 women who died

Cause of death   na (%b)

Abortion-related death 2 (2)

Anaemia 5 (5)Cancer 3 (3)

Cardiovascular disease 6 (6)

Diabetes 6 (6)

Ectopic pregnancy 4 (4)

Haemorrhage 13 (13)

HIV/AIDS-related death 2 (2)

Kidney disease 4 (4)

Liver disease 4 (4)

Malaria 8 (8)

Obstructed labour 2 (2)

Other maternal cause 4 (4)

Pregnancy-induced hypertension 4 (4)

Pregnancy-related sepsis 29 (28)

Ruptured uterus 1 (1)

Suicide 1 (0)

Tuberculosis (pulmonary) 5 (5)

Indeterminable 1 (1)

Total   104 (100)

aUp to three cause-of-death conclusions are generated by the Inter-

VAM model. These were weighted according to their likelihoods. For

example, if a case was concluded to be due to both haemorrhage (50%

likelihood) and sepsis (50% likelihood), then this case would count as0.5 of a case of haemorrhage and 0.5 of a case of sepsis.bTotals may be >100% due to rounding.

Table 3.   Phases in which delays were reported

Phasea %b

Decision-making for care-seeking (Phase 1) 45

Reaching care (Phase 2) 66

Quality facility-based care (Phase 3) 44aAccording to the ‘three delays’ framework (Thaddeus & Maine,

1994).bAs a proportion of surviving women.

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Fear of the hospital . Decisions to seek care were strongly influenced by concerns

over the costs of care. A dominant view was that delivery care would incur high costs,

Table 4.  Thematic framework

Mega-themes Themes Sub-themes

The decision to seek

care (Phase 1)

Poor birth preparedness/

emergency readiness

Traditional therapies during pregnancy

Antenatal care visits with midwivesDelivery planned with midwife

Delivery planned with TBA

Pregnancy ‘normal’, uncomplicated delivery

assumed, and delivery planned with TBA

Poor preparation for complications

Unmet need for

community-based care in

obstetric emergencies

TBA-assisted complicated delivery

Traditional emergency therapies

Delays before calling midwife

Delays before midwife attended

Poor availability of midwife in emergency

Low acceptability of midwife in emergency

High cost of midwife in emergency

Midwife attended delivery after called by

TBA/family/both

Midwife assessment of complication

Poor quality of care from midwife in

emergency

Time taken before referral

Seeking care late

Death in the home

Fear of the hospital Fears/panic over costs of care

Time taken before making a decision

Death at homeReaching care

(Phase 2)

Difficulties arranging

health insurance for the

poor

No health insurance granted in

advance/previously

Arrangement of health insurance in

emergency

Complicated/time-consuming

health-insurance-arrangement process

Stigma of health insurance

Late and/or poor quality

referral

Women critical at referral

Poor quality referral

Lack of drugs, supplies

Midwife did not accompanyUnavailable, unaff ordable

and/or unsafe transport

Costs of transport

Availability of transport

Time taken to arrange transport

Modes of transport

Inappropriate/unsafe mode of transport

Death en route

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of which respondents were fearful. In many cases, by the time a decision was made

to accept the costs and seek care, the women’s condition had become life-threatening.

Other relative: . . . she was not hospitalized . . . because of her fear of hospital. You have to

understand our perception about being hospitalized, even if we get serious illnesses; we take care

of it ourselves.

Interviewer: Oh . . . I see . . . fear of what?

Other relative: Here, there is no social safety net – we don’t have the money. (Case 305302,Pregnancy-related sepsis)

Reaching care (Phase 2)

Di  fficulties arranging health insurance for the poor. A further dominant theme was

the failure of the health insurance scheme for the poor to mediate these fears and

enable access when a decision to seek care had been made. In the majority of cases,

families had not been identified and issued with the green JPS health insurance card

and had to arrange insurance in the emergency. In these cases, a Surat Keterangan

Tidak Mampu (SKTM) letter, or poverty certificate, had to be issued from village

Table 4.   Continued 

Mega-themes Themes Sub-themes

Receiving good

quality EmOC in

hospitals (Phase 3)

Admissions of women

with health insurance

No health insurance/partially arranged

health insurance

Complicated admission

Time-consuming admission

Discrimination on basis of health insurance

use

Stigma of health

insurance

Discrimination on basis of health insurance

use

No communication to family on conditions

or treatments

No death certificate/information on cause of 

death

No ‘right’ to ask questions if poor

Poor quality facility-basedcare

Lack of staff  and/or equipmentAdditional cost considerations

Additional journeys for drugs, blood, care

Death in hospital

Second referrals Poorly staff ed and equipped facilities

Unavailable or poorly equipped ambulances

Death en route

Prevention and

cause

Fatalism and passivity Death was unavoidable

Sufficient eff ort/everything possible was

done: nyreat

Fate, destiny, God’s will

Dual recognition of fate and healthsystems/health care

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authorities. The SKTM letter is an interim statement of eligibility for health insurance

in lieu of a JPS/ASKESKIN card. The SKTM has to be used within a short time

span, and covers a brief episode of care. In many cases, arranging the letter

introduced or exacerbated delays. Respondents described bureaucratic processes

whereby numerous forms of paperwork (cards, letters and certificates) required issue,

authorization and/or signature from various village officials and health workers.

Sister: The family discussed and planned to take her to hospital ‘X’, but because they didn’t have

money, they needed to manage the statement letter for poor people first [SKTM letter]. The time

to process the letter was so long, a day wasn’t enough, finally she didn’t have the chance to go

to the hospital, she died immediately. (Case 128101, Tuberculosis (pulmonary))

Mother: We had to arrange the administration [health insurance] first because we are poor. We

had to go to the   bidan   [midwife] first, then to the head of sub-district and to the head of the

village to arrange the [SKTM] letter, so it took a long time. We should not have to arrange the

administration [health insurance] first because it can be arranged later . . . I wanted her to be cared

for immediately. (Case 131103, Pregnancy-related sepsis)

In many cases, health insurance was only partially arranged before the women’scondition necessitated presenting at a facility. Even when successfully arranged and

used, families still had to meet the costs of drugs, transport and other incidentals.

Late and poor quality referral . By the time they were referred, many women were

in critical health states. Referral was also often of poor quality; the narratives

indicated that, when they did attend, many health staff   did not follow standard

referral procedures on accompaniment, essential drugs, supplies, vehicles, referral

letters, communication and monitoring. Inadequate birth preparedness/emergency

readiness on the part of women and families coupled with inadequate community-

based services had negative synergistic eff ects resulting in women not being attendedor referred in time in the emergency situations.

Daughter: She died when there was no-one . . . When she died she cried for help like someone who

was strangled. (Case 635106, Pregnancy-induced hypertension)

Unavailable, una ff ordable and unsafe transport. When referral journeys were

embarked upon, the cost of transport (usually public) was often problematic. At

difficult times such as late at night, it was also usually unavailable. Even during the

day and in good weather, transport could take hours to arrange. Modes of transport

used in emergencies included:   angkot, a public minibus, unlikely to be aseptic or

equipped; and   ojek,   a rented motorcycle, highly inappropriate and dangerous.Father: Her body was yellow, she was pale and weak with stomach ache and vomited

continuously . . . I was bringing her to the hospital but [after] three junctions I had to go back

because I couldn’t stand for her to be transported by motorcycle. (Case 487101, Anaemia)

Receiving good quality EmOC in hospitals (Phase 3)

Admissions of women with health insurance. The difficulties of using health insurance

extended into facilities. The bureaucratic, complicated and time-consuming admis-

sions of poor women with health insurance, partially arranged health insurance, or no

health insurance and no ability to pay for care, were recurrent themes. Some

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respondents felt that delays in receiving care arose   because of   using health insurance

and would not have occurred otherwise.

Husband: [The admission] was quite difficult at first; they made it difficult . . . because the letters

from ASKESKIN [health insurance for the poor] were not complete. And then I was told to

arrange it. (Case 635107, Pregnancy-related sepsis)

The stigma of health insurance. The stigma of health insurance and its negative

eff ect on quality of care were repeatedly recounted. In several cases, respondents

indicated that the quality of care received in hospitals was lower than it may have

been otherwise by virtue of the women’s low economic status, revealed by their use

of health insurance.

Mother: . . . the hospital staff   don’t really take care, she was not really cured, the doctor

sometimes checked, but most of the time they don’t really care for poor people, especially if we

use the ASKESKIN [health insurance for the poor] card. (Case 540208, Abortion-related death)

Some respondents did not feel that there was a problem with bad quality care

because they were poor. Others felt discriminated against.

Sister-in-law: At the hospital, sometimes poor people are neglected, especially when there is no

referral from the   bidan   [midwife], they just ignored us . . . Just don’t treat us diff erently. Even if 

we are poor people and use ASKESKIN, they neglect or ignore us. We are lacking in ways to

go to the   bidan   or doctor. (Case 281102, Cancer)

There were repeated accounts of how hospital staff  failed to explain procedures or

conditions to family members, unless there was a direct implication for action (e.g.

buying blood or medication). Over 80% of families were not informed of the cause

of death or given death certificates. Many respondents expressed the opinion that they

did not have authority to ask questions about their health care because they were

poor.

Mother: . . . if you are poor, you can’t ask this or that. If you have money you can. (Case 547303,

Tuberculosis (pulmonary))

This context or culture of care is linked to how care is financed. Research on

public funding for delivery care has shown that professionals are not fully reimbursed

for care they provide through the ASKESKIN scheme (Ensor   et al ., 2008). In

addition to low public pay, incomplete reimbursements from ASKESKIN serve as a

further disincentive to provide emergency care to poor women.

Poor quality facility-based care. Many respondents described facilities that were not

adequately staff ed or equipped, often lacking in crucial supplies, such as bloodproducts. As a result, many families had to embark on additional journeys, and pay

associated transport costs, to locate and purchase medicines and/or blood. This

presented particular difficulties for poor families who had to balance the likelihood

that their relative would survive with the cost implications of their death.

Interviewer: What about the cost?

Sister: Yes, it was difficult to find money to pay for the cost.

Interviewer: Was it expensive?

Sister: It was expensive. Where should we get the money from, from whom should we borrow

money? [We] should have to sell land for that [costs of care]. (Case 401101, Pregnancy-related

sepsis).

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In several cases, by the time the necessary resources to obtain medications or

blood products had been mobilized, the woman was too weak to have them

administered, or had passed away.

Other relative: We brought her on Saturday at 6 o’clock in the morning. Then on Sunday, the

blood was supposed to be transfused to her body. But we could not get it. We got it at 7 o’clock

at night. So it was kind of late to do a blood transfusion. We were looking for the blood in the

city. We couldn’t get it there. (Case 295105, Pregnancy-related sepsis)

Husband: [We] bought the blood for 750,000 rupiahs (~80US$), 3 bags . . . only one and a half 

bags were used . . . then she died. (Case 302108 Haemorrhage)

Second referrals. Despite the physical presence of health facilities, shortages in

personnel, equipment and supplies often led to a second referral. Second referrals may

also have been made due to reluctance to treat poor patients (see D’Ambruoso

et al . (2008) for a detailed example). Ambulances provided for second referrals

were frequently un-staff ed and ill-equipped. Several women died   en route   between

hospitals.Mother: I do not know for sure whether the hospital was full or not. If you have the money, you

will immediately get the services. She did not have money. We had money, but now it is gone.

(Case 401101, Pregnancy-related sepsis)

Mother: The doctor said, ‘there’s no option, there’s no equipment here.’ She went by ambulance.

No health staff   accompanied on the journey. (Case 300119, Malaria)

Opinions on preventability and cause. In more than half the cases, respondents felt

that the deaths could not have been avoided and attributed them to destiny, fate or

God’s will, particularly when they felt that everything possible had been done. The

extent of ‘everything possible’ varied, but generally referred to the eff orts, albeitunsuccessful, of various individuals (the woman, family, TBAs, health workers, village

leaders etc.). Sufficient eff ort to avoid death from disease or other conditions, by

traditional or medical means, beyond which it was permissible to attribute the death

to destiny, had a specific name:  nyreat. When opinions of  nyreat  were explored, some

respondents did acknowledge the contribution of unavailable or ineff ective health

systems, services and/or personnel. However, there was often an equivalent and

ambiguous sense of submitting to or accepting destiny, fate or God’s will.

Brother-in-law: Maybe it was her fate . . . and maybe she ran out of blood. (Case 478102,

Haemorrhage)

Interviewer: After she was cut [episiotomy] by midwife [Y], she bled. According to you, was thata problem?

Husband: No . . . no problem. I let go of that, I am not disappointed. If I did not remember fate,

I would consider it a problem. It is just that, I remember fate. (Case 292101, Haemorrhage)

Sister: If you think that [the death was avoidable] it is difficult, heart breaking. Let’s think the

way I have been thinking. It’s her destiny, from the Almighty, I prefer it that way. (Case 548305,

Cancer)

The expressions of destiny and fate may represent coping mechanisms to mediate

grief, sorrow and/or culpability. They may also simply be a common turn of phrase.

Contextualizing this theme, however, provides an additional explanation. In West

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Java, an elaborate and nuanced order of courtesy and politeness, related to social

standing, exists. As observed by Iskandar and colleagues (1996) ‘When a woman dies

it is God’s will, when she survives, it is the doctor’s skill’. The passivity and fatalism

over the deaths may therefore reflect feelings of powerlessness to question the medical

staff    and systems associated with authority. In addition, the multiple barriers

described above conferred a cumulative disadvantage that culminated in exclusionfrom access. It is likely that the passivity and fatalism may have also reflected feelings

of powerlessness in the face of such marked exclusion.

Social exclusion

Theoretical frameworks of exclusion set out that participation in social systems

(including health care) is dictated by social and moral values that are expressed

through repeated interactions of individuals with systems (Gilson, 2003; Freedman,

2005; Popay   et al ., 2008). As set out earlier, access to health care can be described

as a highly dynamic, relational process between personal characteristics and structuralfeatures. If access and exclusion are sufficiently similar, and if exclusion is a

phenomenon of the marginalized, then it follows that access might also usefully be

considered as a phenomenon of disadvantaged groups.

This supports the Dixon-Woods framework of access (2006). To examine its

relevance in more depth, the core element of candidacy was examined in terms of the

emergent themes (Table 5). This revealed a hierarchical arrangement of the relevance

of the dimensions of candidacy. For example, an awareness of available care and an

ability to mobilize resources (navigation) governed how people identified need and

whether care was ‘refused’ (identification, o ff ers   and   resistance), not the reverse.

Similarly, the ease with which people use services ( permeability) determined how theymust mobilize resources (navigation). The judgements of providers regarding people’s

eligibility for care (adjudications) governed whether people presented for care

convincingly (appearances). And the local conditions of systems and services

(operating conditions) determined the ease with which they were used and providers’

 judgements allowed or disallowed access ( permeability   and   adjudications).

From this, it can be inferred that the organization of health systems dictates

service provision, provider and user behaviours; i.e. the locus of control over

candidacy, or eligibility for access to EmOC, lies within the macro-level   operating 

conditions. A reciprocal eff ect can also be seen whereby the behaviours and attitudes

of service users (expressed in terms of powerlessness and passivity) feed back into the

operating conditions, maintaining the social and cultural norms that shape the health

system, and exclusion from access (Fig. 1).

Social and cultural norms

These relationships are typical of the structuralist perspective, which sets out that

deep social structures are produced and maintained in human actions and interactions

(Riessman, 1974, 1984; Rappaport, 1995). Rural Indonesian society is governed by a

decentralized, yet staunchly hierarchical and bureaucratic system without a great deal

of eff ective social welfare or protection and with widespread abuse of power and

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Table 5.   Relevance of the dimensions of candidacy to emergent t

Dimension of candidacya

Descriptiona Themes Number ofrelevantthemes andcategorizatiof thematicrelevanceb

Phase 1 Phase 2 Phase 3

     P   o   o

   r     b     i   r    t     h   p   r   e   p   a   r   e     d   n   e   s   s     /   e   m   e   r   g   e   n   c   y   r   e   a     d     i   n   e   s   s

     U   n   m

   e    t   n   e   e     d   c   o   m   m   u   n     i    t   y  -     b   a   s   e     d   c   a   r   e

     F   e   a   r   s   o     f    t     h   e     h   o   s   p     i    t   a     l

     D     i     ffi

   c   u     l    t     i   e   s   a   r   r   a   n   g     i   n   g     h   e   a     l    t     h     i   n   s   u   r   a   n   c   e

     L   a    t   e   a   n     d     /   o   r   p   o   o   r   q   u   a     l     i    t   y   r   e     f   e   r   r   a     l

     U   n   a

   v   a     i     l   a     b     l   e ,   u   n   a     ff   o   r     d   a     b     l   e   a   n     d     /   o   r   u   n   s   a     f   e    t   r   a   n   s   p   o   r    t

     A     d   m

     i   s   s     i   o   n   s   o     f   w   o   m   e   n   w     i    t     h     h   e   a     l    t     h     i   n   s   u   r   a   n   c   e

     S    t     i   g

   m   a   o     f     h   e   a     l    t     h     i   n   s   u   r   a   n   c   e

     P   o   o

   r   q   u   a     l     i    t   y     f   a   c     i     l     i    t   y  -     b   a   s   e     d   c   a   r   e

     S   e   c   o   n     d   r   e     f   e   r   r   a     l   s

Identification How disadvantaged peopleidentify need in regard tospecific events or crises

x 1, LOW

Navigation An awareness of services andmobilization of resources

x x x x 4, MED

Permeability of 

services

The simplicity with which

people can use services and theability of certain services toexclude vulnerable groups

x x x x x x 6, MED

Appearances The ability of an individual topresent credibly and articulately

x x x x x 5, MED

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Table 5.   Continued 

Dimension of candidacya

Descriptiona Themes Number ofrelevantthemes andcategorizatiof thematicrelevanceb

Phase 1 Phase 2 Phase 3

     P   o   o   r     b     i   r    t     h   p   r   e   p   a   r   e     d   n   e   s   s     /   e   m   e   r   g   e   n   c   y   r   e   a     d     i   n   e   s   s

     U   n   m   e    t   n   e   e     d   c   o   m   m   u   n     i    t   y  -     b   a   s   e     d   c   a   r   e

     F   e   a   r   s   o     f    t     h   e     h   o   s   p     i    t   a     l

     D     i     ffi   c   u     l    t     i   e   s   a   r   r   a   n   g     i   n   g     h   e   a     l    t     h     i   n   s   u   r   a   n   c   e

     L   a    t   e   a   n     d     /   o   r   p   o   o   r   q   u   a     l     i    t   y   r   e     f   e   r   r   a     l

     U   n   a   v   a     i     l   a     b     l   e ,   u   n   a     ff   o   r     d   a     b     l   e   a   n     d     /   o   r   u   n   s   a     f   e    t   r   a   n   s   p   o   r    t

     A     d   m     i   s   s     i   o   n   s   o     f   w   o   m   e   n   w     i    t     h     h   e   a     l    t     h     i   n   s   u   r   a   n

   c   e

     S    t     i   g   m   a   o     f     h   e   a     l    t     h     i   n   s   u   r   a   n   c   e

     P   o   o   r   q   u   a     l     i    t   y     f   a   c     i     l     i    t   y  -     b   a   s   e     d   c   a   r   e

     S   e   c   o   n     d   r   e     f   e   r   r   a     l   s

Adjudications Health providers’ judgementsor decisions on an individual’seligibility for care that allows,or disallows, access

x x x x x x 6, MED

Off ers andresistance

Acknowledging that somefamilies refuse off ers of care

x 1, LOW

Operatingconditions of thelocal production of candidacy

Perceived and actualavailability of health careservices determined by localconditions and revealedthrough repeated encountersbetween individuals andproviders

x x x x x x x x x x 10, HIGH

aReproduced from (Dixon-Woods   et al ., 2006).bCategorization of thematic relevance: LOW=0–3 emergent themes relevant to dimension of candidacy; MED=4–6 emergent themes relevant to dimension

to dimension of candidacy.

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corruption (Friend, 2003; Utomo, 2005). Village governance systems have been

described as chaotic – ‘at the village level, most representatives (officials) scarcely

understand their roles’ (Bebbington   et al ., 2006) – and village-level health care hasbeen characterized as being ‘without transparency and accountability’ and ‘increas-

ingly privatized’ (Kristiansen & Santoso, 2006). Society is also conservative and

restrictive towards women, and by extension, their reproductive health needs (Beegle

et al ., 2001). Norms of discrimination, elitism and a market ideology were clearly

reflected in the accounts of interactions and negotiations that took place when women

attempted to access EmOC.

Implications for health planning 

A focus on the macro-level organization and the culture and context of care is

central to the structuralist reform agenda. Key approaches are well known. These

include increasing the roles of lower cadre providers to encompass responsibilities

traditionally within the realm of higher cadres, usually physicians (Riessman, 1984).

In the rural villages on Java,  bidan, kader  and other health staff  represent viable entry

points for such reform. Increased investment, training and support with concomitant

improvements in local-level health infrastructure such as   posyandu   could maximize

their documented potential (Berman   et al  ., 1987; Leimena, 1989; Kristiansen &

Santoso, 2006).

Health insurance for the poor is highly problematic. For providers, incomplete

reimbursements, and low public pay, act as disincentives to treat the poor. For users,

Fig. 1.  Elements of eligibility for access to health care (candidacy) arranged according

to thematic relevance reveals a structuralist and reciprocal hierarchy.

232   L. D’Ambruoso, P. Byass and S. N. Qomariyah

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the schemes are poorly socialized and understood, highly bureaucratic and compli-

cated, and they lead to lower quality and discriminatory care. Informing and issuing

families with health insurance could also be achieved via  kader  and  posyandu  as part

of birth preparedness/emergency readiness during the antenatal period.

When they have not been arranged in advance, poverty certificates (SKTM letters)

need to be more quickly and easily attainable in emergencies. The SKTM letters couldbe placed within the authority and management of  kader,   to reduce bureaucracy and

dependence on busy village officials,  puskesmas  heads etc. The health insurance system

should also ensure rapid and full reimbursements to midwives in villages and hospitals

to encourage their services to be made available to the poor. Finally, health staff 

should also receive training to improve their acceptance of women with health

insurance in obstetric emergencies.

More progressive structuralist health policies challenge the biomedical model of 

health and health care by increasing mutual participation in care, reducing the

passivity of the patient, sharing medical knowledge, increasing kinship and so on,

allowing health and illness to be thought of as ‘inextricably linked to broader socialarrangements’ (Reissman, 1984). Health planning from a more holistic perspective has

the potential to develop robust solutions to complex problems. It could also help

foster a sense of control at the micro-level, influencing people’s feelings and

behaviours regarding their health, lives and futures, and conferring a sense of 

self-worth and control that appear to be lacking in this setting.

Finally, the multitude of delays often resulted in admission of women to hospitals

in a critical or moribund condition. As well as being avoidable, this may negatively

distort clinical audits of quality of care that often do not take account of factors that

occur outside a facility (Adisasmita   et al ., 2008).

Methodological reflections

By virtue of its focus on deaths outside hospitals, verbal autopsy provides an

opportunity to collect information on the very individuals excluded from (and by)

health care systems. Extending verbal autopsy to capture information on the

dynamics of access maximizes the potential of a widely used, routine and action-

oriented health planning method. Benefits and limitations of the approach are

described below.

Interviewers and interviews

The verbal autopsy interview is typically a brief, one-off   discussion, without

feedback, conducted by a medical practitioner who may represent the structures of 

‘medical authority’, so interpersonal power dynamics may be reproduced. The

interview also deals with a sensitive topic. On a number of occasions observed by the

authors and recounted by the interviewers, the interviewee struggled with or stopped

the interview due to its upsetting nature. In most of these cases, the respondent

decided to continue and complete the interview; only a small number did not wish to

carry on (in these cases, the gift was still given). As a result, careful recruitment and

training, continuous support for interviewers, appropriate conduct and carefully

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worded informed consent for respondents are critical to gain meaningful accounts of 

the cases. Sufficient time is also required. The extended verbal autopsy interview was

20–30 minutes longer than a standard verbal autopsy, an increase that may be

significant in larger surveys.

Respondents

Although verbal autopsy collects subjective accounts of care, by virtue of the

emergency situation, an atypical chain of events occurs that is likely to be recalled in

detail – that is, ‘narrative reconstructions’ of ‘actual practices’ are likely to be

obtained rather than ‘normative statements’ (Lambert & McKevitt, 2002). In

addition, in the interviews in this study, several people (family members, friends and

neighbours) in addition to the primary respondent were present at various points

during the interview and information was often provided by more than one

respondent. This was not challenged by the interviewers; they did not insist on a

privately conducted one-to-one interview and attempted to gain consent from, and

record descriptive information for, all who gave significant or substantial information.

This approach allowed for cross-verification of information and ‘gap-filling’, which

was useful if the respondent(s) had not been with the woman continuously from the

onset of the complication until she died. Drawbacks were that confidentiality may

have been compromised and attributing all the information provided to the primary

respondent may have been inaccurate. The convention of verbal autopsy interviews

being privately conducted, confidential interviews may not always be necessary nor

appropriate. An interview under these conditions should be off ered to respondents,

rather than enforced.

Analysis

Verbal autopsy aims to detect the magnitude of medical disorders and identify,

associate and quantify risk factors at aggregate level. Qualitative enquiry off ers an

alternative, complementary, analytical perspective, to describe and explain   why   such

trends occur. Despite being time- and resource-intensive, the narrative approach is

particularly appropriate to examine issues of access. Individual explanations of 

health-seeking behaviours ‘perform social functions rather than being neutral reflec-

tions’ (de Kok & Widdicombe, 2008) and allow for an examination of social contexts

on people’s behaviours, and vice versa.

It is also important to consider for whom the results of verbal autopsy are useful.

National and international organizations use standardized verbal autopsy data tomonitor disease burdens between populations and over time (Byass, 2007). Tradi-

tional verbal autopsy also considers cause of death in narrow biomedical terms of 

disease classification and organ failure. Broadening the cause of death concept to

consider the impact of failures of health and social systems may provide more

complete information, relevant for local-level planning.

Implications for future research

Verbal autopsy can be used as a means, or an element, of clinical audit to examine

the social and structural constraints on access to quality care. Allied methods include

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near-miss audit (Filippi   et al ., 2004, 2009; Béhague   et al ., 2007), community- and

facility-based maternal death reviews (Manandahar et al ., 2004; Richard  et al ., 2008a)

and confidential enquiries (Pattinson & Hall, 2003; South Africa Every Death Counts

Writing Group, 2008). When conducted appropriately, these methods have the

potential to generate critical evaluations of access to (and quality of) health care using

the insights of service users and providers operating in the local contexts.Other more conventional qualitative approaches exist to describe and explain

phenomena such as access. Their visibility, and hence utility, for local-level health

planning is, however, limited. The analyses of the data collected, presented here and

elsewhere (D’Ambruoso  et al ., 2009; Byass  et al ., 2009), demonstrate that qualitative

enquiry can be combined with the wide application of verbal autopsy for a robust and

routine interpretation of the social and structural dimensions of health, as well as to

quantify the incidence of complications that are unpredictable and swift to kill in the

absence of good quality care.

Conclusion

The narratives reveal a multitude of social and economic barriers to access that

women encountered during obstetric emergencies in this setting. The manner in which

the barriers arose demonstrated the structural construction of access to health care for

disadvantaged groups, and that, in this setting, a diff erent standard of care seems to

be reserved for, and accepted by, the poor.

Although EmOC and skilled birth attendance require that women have access to

professional delivery care, access itself remains poorly understood. Conceiving of 

access as dynamic and relational, and as a phenomenon of disadvantaged groups,

may provide a useful point of departure for re-positioning health planning and basicdistributive commitments that are appropriate for the social and economic, and

emergency, contexts in which these services are provided.

Incorporating qualitative data collection and analysis into traditional biomedical

and epidemiological approaches to health surveillance is a route to gaining cross-

disciplinary insights into complex problems. This approach has the potential to

inform more robust, eff ective and culturally relevant strategies to address the

cumulative disadvantage and restricted access to essential, life-saving care for

pregnant women in low-income settings.

Acknowledgments

This work was undertaken as part of the Initiative for Maternal Mortality

Programme Assessment (Immpact), funded by the Bill & Melinda Gates Foundation,

the UK Department for International Development, the European Commission and

US Agency for International Development (USAID). Immpact is an international

research programme which also provides technical assistance through its affiliate

organization, Ipact. The funders have no responsibility for the information provided

or views expressed in this paper. The views expressed herein are solely those of the

authors. The authors would also like to acknowledge the contributions of: Dr Linda

Barlett, for sharing the verbal autopsy interview schedule applied in a study in

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Afghanistan in 2002 (UNICEF and Centres for Disease Control, CDC, Atlanta),

upon which the interview guide in this study was based; Dr Endang Acahdi and her

team at the Centre for Family Welfare, University of Indonesia, including Kamalud-

din Latief for co-ordinating the fieldwork and to Trisari Anggondowati and Eko

Pambudi; the interviewers Lupthi Tri Utari, Sri Rahmi, Kray S. Asa and Agus

Khomeini; and the District Health Offices in Serang and Pandeglang for the valuablesupport in making contact with the families of the deceased women. The authors are

grateful to the respondents in Banten province who gave up their time to participate

in the interviews. Finally, acknowledgements go to Dr Alice Kiger, Ms Suzanne Cross

and Mr Alec Cumming at the University of Aberdeen, Dr Linda Bartlett at Johns

Hopkins School of Public Health and Dr Susan Murray at Kings College London

who gave useful comments on earlier versions of the manuscript.

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