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. 2021 May 6;17(4):e13182. doi: 10.1111/mcn.13182
Article Country Pub year Objective Design Main findings Pop'n type Number in sample Potential confounding factors? Variables controlled for/commented on?
Banta‐Wright et al. USA/Canada 2015 Describe meaning and purpose of BF to mothers Qualitative descriptive

Diagnosis required a re‐commitment to BF, including learning about child's condition

BF was meaningful, maintaining closeness and connection, but required some adaptation—being flexible about how much/little BF, as well as maintaining lactation

Mothers required support. Mostly, this came from peers. Most cited a lack of clear written info. LCs helped but had to be found

Final theme was that although BF infants with PKU was hard work, it was worth it. BF gave them a way to see their infants as normal

Mothers of babies with PKU 10 SES, intention to breastfeed, education status, previous breastfeeding experience, prior knowledge of PKU, support from partner, support from healthcare professionals, information about PKU, NICU/PICU admission, gestational age, availability of breast pump, distance from hospital or access to regular domiciliary nursing for blood tests, BFI‐accredited hospital, parental mental health condition SES, partner availability, education status, previous children with PKU
Barbas and Kelleher. USA 2004 Describe BF outcomes among mother–infant pairs in a CHD context Retrospective survey

Breastfeeding provided mothers with an opportunity to feel more involved in their infant's care, as well as higher sense of self‐efficacy, making a ‘difficult experience bearable’

Many mothers found nursing and medical staff unsupportive—the importance of breastmilk was not acknowledged by many, and many of the staff were felt to imply that formula was better and less ‘icky’. There were some notable exceptions from supportive staff members

The most common positive comment was about the availability of pumps

Mothers of babies with CHD 68 SES, intention to breastfeed, education status, previous breastfeeding experience, antenatal breastfeeding education, access to specialist breastfeeding support, NICU/PICU admission, gestational age, breast pumps, support from healthcare professionals, infant caloric need/growth rate, BFI‐accredited hospital, parental mental health condition Maternal age, level of education, marital status, number of children, classification of CHD, prenatal preparation for CHD, availability of specialist breastfeeding support
Barros da Silva et al. Portugal 2019 Explore experiences of mothers breastfeeding children with Down syndrome Qualitative, semi‐structured interview Mothers expressed dissatisfaction with healthcare practitioners regarding their support and knowledge of breastfeeding children with Down syndrome. Mothers persevered due to their commitment to breastfeeding, in spite of a lack of support and the challenges of feeding babies with low tone, sucking problems or cardiac anomalies Mothers of children with Down syndrome 10 SES, education status, intention to breastfeed, previous breastfeeding experience, antenatal education, prenatal diagnosis of Down syndrome, co‐morbidities (such as CHD), support from health professionals, infant stability, NICU/PICU admission, gestational age, availability of psychological support, BFI‐accredited hospital, parental mental health condition Confounding variables not commented on
Duhn and Burke Canada 1998 What are the key issues experienced by mothers feeding their babies with CHD Qualitative interviews using a grounded theory approach (unpublished)

There was a theme of acknowledging that the feeding and mothering process was different. This involved grief and shock

Mothers described the hard work of feeding, and incorporating this into everyday life was difficult, stressful, time consuming and anxiety provoking

Mothers began to develop feelings of control after reframing their experience, persisting with feeding even though it was hard and choosing to remain positive

There were recurring experiences of loss, fear of their baby dying and an emotional battle between feeling close through feeding, yet needing to create a protective distance due to a feeling of threatened survival

All mothers stopped breastfeeding within 4–6 weeks, and though some continued to pump, nobody resumed breastfeeding after initially stopping

Mothers of infants with CHD 7 SES, education status, previous breastfeeding experience, BFI‐accredited hospital, parental mental health condition
Heilbronner et al. France 2017 Evaluate breastfeeding disruption during hospital admission for bronchiolitis Cross‐sectional study Forty‐three per cent of mothers stated that hospitalization modified their breastfeeding experience. Several either stopped, switched to partial breastfeeding or reduced breastfeeding. Lack of support by healthcare staff as well as medical advice was the most commonly cited reason for this Breastfeeding mothers of children hospitalized with bronchiolitis 84 Child age, prior difficulty with breastfeeding, social support, SES, intention to breastfeed, PICU admission, ventilation, respiratory support, tube feeding, whether parent was able to be resident overnight, nursing ratios, level of nursing knowledge in breastfeeding, problems with recall, availability of breast pump, BFI‐accredited hospital, parental mental health condition Age of child, length of stay, severity of illness, length of PICU stay, length of ventilation, nutritional support, growth rate prior to hospitalization. SES only available for 54/84 patients
Lambert and Watters Canada 1998 Share insights about the experiences of parents of CHD infants Descriptive survey Some parallels noted between maternal reported benefits of breastfeeding a sick child with those reported by mothers of preterm infants. Most of the mothers were not encouraged to breastfeed, and many healthcare professionals expressed inaccurate views of breastfeeding in the context of physiological instability. There were also barriers put up by healthcare professionals due to concerns over the difficulty with measuring volumes when babies are breastfed Mothers of children with CHD 12 SES, education status, intention to breastfeed, previous breastfeeding experience, degree if infant stability, NICU/PICU/CICU admission, gestational age, antenatal education, prenatal diagnosis of CHD, peer support, availability of specialized lactation support, support from healthcare staff, BFI‐accredited hospital, parental mental health condition Maternal age, education status, nature of cardiac anomaly, personal breastfeeding goals, whether information provided by medical professionals was broadly positive, negative or absent
Lewis and Kritzinger South Africa 2004 Describe the experiences of feeding children with Down syndrome Descriptive survey

There were a number of feeding challenges due to low tone, heart defects, infant exhaustion, problems with sucking and safe swallowing

Mothers experienced a range of emotions, such as shock, concern, stress, disappointment and frustration

Mothers identified that they required support, choices and skilled guidance from professionals, as well as peer support to achieve their feeding goals

They also valued encouragement to continue breastfeeding

Mothers of children with Down syndrome 20 SES, education status, intention to breastfeed, previous breastfeeding experience, comorbid condition, prenatal diagnosis of Down syndrome, NICU/PICU admission, gestational age, nutritional/feeding support, BFI‐accredited hospital, parental mental health condition

Maternal age, but not level of education, partner status or antenatal education

Many infant variables accounted for. Apart from NICU/PICU admission—though questions were asked about whether baby was ventilated

Madhoun et al. USA 2019 To examine trends in breastmilk provision and characterize barriers and supports to maintaining breastfeeding or breastmilk feeding Online retrospective cross‐sectional study of parents of cleft babies

Breastfeeding duration was dependent on cleft type. CL‐only babies were more successful at breastfeeding

Many mothers in the study pumped, and pumping duration was not affected by cleft type

Lactation consultants were the most common source of support, but were not ‘required’ members of the cleft team. Feeding duration was also improved by peer support

Many mothers described anxiety and/or depression

Mothers of babies with cleft lip/palate 150 (69 BF mothers) SES, education status, previous breastfeeding experience, intention to breastfeed, partner support, lactation support, medical professional support, access to breast pump, NICU/PICU admission, cleft lip and/or palate, co‐morbidities, BFI‐accredited hospital, parental mental health condition SES, maternal age, marital status, education status, intention to breastfeed, age of infant, cleft type, co‐morbidities, maternal depression, NICU admission
Moe et al. USA/Canada 1998 Determine what support is useful in establishing and maintaining lactation in infants with Rubenstein‐Taybi syndrome Retrospective survey Even with very little support, babies with RTS demonstrated ability to be able to breastfeed successfully. However, mothers reported that many health professionals were discouraging, and there were not enough lactation consultants to support them with specialist feeding techniques to facilitate effective feeding. Support more often came from booklets, family members and their prior experience of breastfeeding another child. The research suggests ways in which the techniques described in this study may be of help to babies with other conditions that involve low tone—such as Down syndrome Parents of children with Rubenstein‐Taybi syndrome 194 SES, education status, intention to breastfeed, previous breastfeeding experience, NICU/PICU admission, co‐morbidities, lactation and healthcare professional support, BFI‐accredited hospital, parental mental health condition No data on SES variables, parental age, partner status, prenatal preparation. Data were provided about breastfeeding duration, reasons for cessation, quality and prevalence of support provided and by whom
Rendón‐Macías et al. Mexico 2002 Determine frequency of breastfeeding, and identify factors associated with initiation and cessation among parents of children with congenital anomalies Descriptive cohort study Infants with congenital malformations are less likely to BF. Mothers cited many reasons, including medical advice, separation and infant disease—especially GI disease Mothers of babies with congenital anomalies 120 SES, education status, previous breastfeeding experience, BFI‐accredited hospital, intention to breastfeed, infant condition, co‐morbidities, NICU/PICU admission, breast pump availability, parental mental health condition

No data relating to SES, partner status, education level, provided

Data about parental age, employment, intention to breastfeed, antenatal education, initial infant feeding pattern and infant condition are provided. No breast pumps available at this facility, and no rooming in facilities—though parents are permitted to stay (unclear how this is facilitated). Unclear differentiation between exclusively and partially breastfed infants when calculating duration of breastfeeding

Ryan et al. UK 2013 Explore the experience of breastfeeding a baby with chronic illness or disability Narrative interviews Chronic illness or disability causes disruption to the breastfeeding relationship. In this study, mothers' sense of self‐efficacy was closely tied to their ability to breastfeed and thus was an important part of emotional adjustment to chronic illness or disability Mothers of children with Down syndrome, cleft and CHD 5 SES, education status, previous breastfeeding experience, intention to breastfeed, infant condition, NICU/PICU admission, co‐morbidities, BFI‐accredited hospital, parental mental health condition Parental age, marital status, employment status, ethnicity was collected. Data about infant illness or disability were also provided