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Improving the health agency of vulnerable mothers-to-be: taking empowerment seriously

Projectomschrijving

De kans op kinderziekte en -sterfte is aanzienlijk groter in achterstandswijken, ook in een welvarend land als Nederland.
Dit heeft, zo vermoeden de onderzoekers, niet alleen te maken met de suboptimale beschikbaarheid van zwangerschapsgerelateerde zorg in die wijken.

Uit onderzoek blijkt dat individuen die in achterstand leven vaker hun voorkeuren en doelen naar beneden bijstellen, zodat het leven in achterstand dragelijker wordt. Dit zou voor de groep kwetsbare moeders betekenen dat ook zij mogelijk hun voorkeuren en doelen met betrekking tot hun gezondheid en de gezondheid van hun (toekomstige) kind naar beneden bijstellen, zonder zich daarvan bewust te zijn. Dit heeft als gevolg dat deze groep vrouwen minder geneigd is om gebruik te maken van de zorg die wel voor hen beschikbaar en toegankelijk is.

Studie

Dit project heeft zich gericht op hoe kwetsbare vrouwen kunnen worden ondersteund bij het krijgen van een gezond kind. Zodoende is onderzoek gedaan naar:

  1. Het definiëren van health agency (empowerment) en het identificeren van aangrijpingspunten om de health agency van kwetsbare vrouwen te bekrachtigen.
  2. Het vermoedelijke verband tussen de verminderde afname van beschikbare zorg door de groep kwetsbare vrouwen en de neiging om voorkeuren en doelen naar beneden bij te stellen.
  3. Het opstellen van een richtlijn voor beleid en interventies, en het ontwikkelen van een eHealth tool die kwetsbare vrouwen op moreel verantwoorde wijze ondersteunt de regie te nemen over hun gezondheid en de gezondheid van hun (toekomstige) kind.

Uitkomsten

Dit project heeft een aantal wetenschappelijke publicaties opgeleverd die zich richten op hoe kwetsbare vrouwen met een kinderwens ondersteund kunnen worden in het toewerken naar een gezonde zwangerschap. Ook zijn diverse tools ontwikkeld, zoals de app Sneller Zwange (nog in ontwikkeling), de Sneller Zwanger website, informatieve podcasts en mindfulnessoefeningen, en een aantal online communities. Allemaal bedoeld ter ondersteuning van kwetsbare vrouwen met een kinderwens.

Meer informatie

Publicaties

  • Ismaili M’hamdi, Neutrality and Perfectionism in Public Health.– American Journal of Bioethics (april 2021)
  • Ismaili M’hamdi & Inez de Beaufort, Health Agency and Perfectionism: The Case of Perinatal Health Inequalities. – Public Health Ethics (juli 2021)
  • Ismaili M’hamdi, Identity and Liberalism in Public Health: A Response to the Open Peer Commentaries. – American Journal of Bioethics (september 2021)
  • Smith SM et al, Preferences of women with a vulnerable health status towards nudging for adequate pregnancy preparation as investment in health of future generations: a qualitative study. BMC Pregnancy Childbirth (juli 2022)
  • Bertens et al. Caring for highly vulnerable pregnant women; insights into the complexity and interplay of faced adversities and perceived health and well-being - the Mothers of Rotterdam Program. – BMC Public Health (januari 2023)

Verslagen


Samenvatting van de aanvraag

The Netherlands has relatively high perinatal morbidity and mortality rates compared to other European countries. Moreover, significant neighborhood-based inequalities in these morbidity and mortality rates have been observed and recorded. For example, the chance a pregnant woman living in an underprivileged neighborhood in Rotterdam has to losing her child in the period surrounding delivery is five times higher than the national average. This has led to many initiatives to counteract these adverse pregnancy outcomes that have yielded mixed results. Most initiatives have, for good reasons, focused on improving the availability and accessibility of pregnancy-related care. The detrimental effects of living in destitution on the desire and ability of vulnerable mothers-to-be to make use of the help and care that is available to them however, has received far less attention. This is problematic because, as ample research on so called ‘adaptive preferences’ has shown, individuals living in underprivileged conditions tend to ‘adapt’ their ‘preferences’, goals and ambitions so these better match their poor living conditions. Living in destitution limits what one wants in terms of health and wellbeing. More specifically, life in destitute neighborhoods can, as we have argued in previous research, be detrimental to (i) the health-related goals mothers-to-be set (ii) the control they experience to achieve these goals and (iii) the perception of freedoms and means at their disposal to achieve these goals, that is, detrimental to what we call their ‘health agency’. This makes vulnerable mothers-to-be less likely to make use of the help and care that is available to them as they have learned to manage without and accept poor health and adverse pregnancy outcomes as a given. This project addresses the problem of adaptive preferences and impaired health agency by focusing on the insights and tools necessary to empower this group of vulnerable mothers-to-be so they can overcome the detrimental effects of life in destitution (raising aspirations beyond adaptations), to the benefit of their own health and the health of their offspring. Questions: 1. What are morally justified ways to empower vulnerable women so they become less likely to acquiesce in their poor living conditions and become more likely to seek pregnancy-related care available to them? 2. Why and to which extent is the problem of adverse pregnancy outcomes a matter of (in)justice, warranting an institutional response, as opposed to a problem pertaining to the maternal, paternal and parental responsibility for the health of children-to-be? Aim: To provide the descriptive and normative insights necessary to develop strategies and a personalized eHealth tool that aid in the empowerment of vulnerable mothers-to-be and consequently address the high number of adverse pregnancy outcomes. Methods: 1. We will map what we call the ‘health agency’ of vulnerable mothers-to-be pertaining to the health of their children-to-be. With health agency we mean (i) the health-related goals mothers-to-be set and have reason to value (ii) the control they experience over achieving these goals and (iii) the freedoms and means at their disposal to achieve these goals. To map the health agency properly, we will do in depth semi-structured interviews with vulnerable mothers-to-be and caregivers, such as midwives and obstetricians, who work in underprivileged neighborhoods. This will help to identify to which extent adverse pregnancy outcomes are a matter of limited capabilities vulnerable mothers-to-be have to convert available care into actual good health outcomes for themselves and their offspring. 2. We will perform a normative analysis necessary to develop a full-fledged concept of health agency. This is especially important as counteracting adaptive preferences and improving health agency can easily invite charges of paternalism. “What justification do we researchers have to adjudicate between preferences and goals that one has reason to value and preferences and goals that are the result of adaptive preferences?” Building on the ‘capabilities approach’ we aim to show how these charges can be avoided. 3. We will perform a normative analysis to show why the issue of adverse pregnancy outcomes and impaired health agency is an issue that falls within the scope of justice and thus demands an institutional response, irrespective of which position one takes on individual, maternal or parental responsibility. Expected outcome: This project will yield insights into why vulnerable mothers-to-be are less likely to make use of available care and what the morally justified ways are to address this problem. Based on these insights, tools, including an eHealth module, for vulnerable mothers-to-be and caregivers will be developed that will help to empower this group of vulnerable mothers-to-be.

Kenmerken

Projectnummer:
854011004
Looptijd: 100%
Looptijd: 100 %
2019
2023
Onderdeel van programma:
Gerelateerde subsidieronde:
Projectleider en penvoerder:
dr. H. Ismaili M'hamdi
Verantwoordelijke organisatie:
Erasmus Medisch Centrum