Abstract
BACKGROUND: Maternal multiple long-term conditions are associated with adverse outcomes for mother and child. We conducted a qualitative study to inform a core outcome set for studies of pregnant women with multiple long-term conditions.
METHODS: Women with two or more pre-existing long-term physical or mental health conditions, who had been pregnant in the last five years or planning a pregnancy, their partners and health care professionals were eligible. Recruitment was through social media, patients and health care professionals' organisations and personal contacts. Participants who contacted the study team were purposively sampled for maximum variation. Three virtual focus groups were conducted from December 2021 to March 2022 in the United Kingdom: (i) health care professionals (n = 8), (ii) women with multiple long-term conditions (n = 6), and (iii) women with multiple long-term conditions (n = 6) and partners (n = 2). There was representation from women with 20 different physical health conditions and four mental health conditions; health care professionals from obstetrics, obstetric/maternal medicine, midwifery, neonatology, perinatal psychiatry, and general practice. Participants were asked what outcomes should be reported in all studies of pregnant women with multiple long-term conditions. Inductive thematic analysis was conducted. Outcomes identified in the focus groups were mapped to those identified in a systematic literature search in the core outcome set development.
RESULTS: The focus groups identified 63 outcomes, including maternal (n = 43), children's (n = 16) and health care utilisation (n = 4) outcomes. Twenty-eight outcomes were new when mapped to the systematic literature search. Outcomes considered important were generally similar across stakeholder groups. Women emphasised outcomes related to care processes, such as information sharing when transitioning between health care teams and stages of pregnancy (continuity of care). Both women and partners wanted to be involved in care decisions and to feel informed of the risks to the pregnancy and baby. Health care professionals additionally prioritised non-clinical outcomes, including quality of life and financial implications for the women; and longer-term outcomes, such as children's developmental outcomes.
CONCLUSIONS: The findings will inform the design of a core outcome set. Participants' experiences provided useful insights of how maternity care for pregnant women with multiple long-term conditions can be improved.
METHODS: Women with two or more pre-existing long-term physical or mental health conditions, who had been pregnant in the last five years or planning a pregnancy, their partners and health care professionals were eligible. Recruitment was through social media, patients and health care professionals' organisations and personal contacts. Participants who contacted the study team were purposively sampled for maximum variation. Three virtual focus groups were conducted from December 2021 to March 2022 in the United Kingdom: (i) health care professionals (n = 8), (ii) women with multiple long-term conditions (n = 6), and (iii) women with multiple long-term conditions (n = 6) and partners (n = 2). There was representation from women with 20 different physical health conditions and four mental health conditions; health care professionals from obstetrics, obstetric/maternal medicine, midwifery, neonatology, perinatal psychiatry, and general practice. Participants were asked what outcomes should be reported in all studies of pregnant women with multiple long-term conditions. Inductive thematic analysis was conducted. Outcomes identified in the focus groups were mapped to those identified in a systematic literature search in the core outcome set development.
RESULTS: The focus groups identified 63 outcomes, including maternal (n = 43), children's (n = 16) and health care utilisation (n = 4) outcomes. Twenty-eight outcomes were new when mapped to the systematic literature search. Outcomes considered important were generally similar across stakeholder groups. Women emphasised outcomes related to care processes, such as information sharing when transitioning between health care teams and stages of pregnancy (continuity of care). Both women and partners wanted to be involved in care decisions and to feel informed of the risks to the pregnancy and baby. Health care professionals additionally prioritised non-clinical outcomes, including quality of life and financial implications for the women; and longer-term outcomes, such as children's developmental outcomes.
CONCLUSIONS: The findings will inform the design of a core outcome set. Participants' experiences provided useful insights of how maternity care for pregnant women with multiple long-term conditions can be improved.
| Original language | English |
|---|---|
| Article number | 551 |
| Number of pages | 15 |
| Journal | BMC Pregnancy and Childbirth |
| Volume | 23 |
| Issue number | 1 |
| Early online date | 1 Aug 2023 |
| DOIs | |
| Publication status | Published - 1 Aug 2023 |
Bibliographical note
AcknowledgementsWe would like to thank the following organisations for helping with recruitment for the focus groups: 4 M Project, Beat (Eating Disorders), British Thyroid Foundation, Bump2Baby Parent and Public Involvement Group (Nottingham Clinical Trials Unit), Caribbean Nurses and Midwives Association (UK), Crohn’s and Colitis UK, Diabetes UK (forum), Elly Charity, Epilepsy Action, General Practitioners Championing Perinatal Care, Health and Care Research Wales, Hereditary Spastic Paraplegia Support for UK HSP’rs, Juvenile Diabetes Research Foundation, Katie’s Team, Kidney Patient Involvement Network, Kidney Research UK, Multiple Sclerosis Society UK, Mums Like Us, National Childbirth Trust, National Kidney Federation, Perinatal Mental Health Research (Facebook), Polycystic Kidney Disease Charity, Positive Birth Edinburgh, Positive Birth Scotland: Hypnobirthing and Birth Preparation, Psoriasis Association, Raham Project, Rare Autoinflammatory Conditions Community – UK, Royal College of Obstetricians and Gynaecologists Women’s Voices Involvement Panel, West Bromwich African Caribbean Resource Centre, Somerville Heart Foundation, The Birth and Baby Space (Facebook), The Migraine Trust, The Voice for Epilepsy, The Hereditary Spastic Paraplegia Support Group, Versus Arthritis, Women Connect First.
Funding
This work was funded by the Strategic Priority Fund “Tackling multimorbidity at scale” programme (grant number MR/W014432/1) delivered by the Medical Research Council and the National Institute for Health Research in partnership with the Economic and Social Research Council and in collaboration with the Engineering and Physical Sciences Research Council. BT was funded by the National Institute for Health Research (NIHR) West Midlands Applied Research Collaboration. The views expressed are those of the author and not necessarily those of the funders, the NIHR or the UK Department of Health and Social Care. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Keywords
- Child
- Female
- Pregnancy
- Humans
- Pregnant Women/psychology
- Quality of Life
- Maternal Health Services
- Qualitative Research
- Parturition
Access to Document
- Lee_etal_BMCPC_Key_Outcomes_For_VoR
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