TABLE 6.

Study themes

Study	Sub‐themes	Themes analysed from data
Banta‐Wright et al. (2015)	Breastfeeding was hard work but important. Mothers had to adapt to infant condition constantly. IBCLCs were hard to find, and healthcare professionals lacked information. Pumps were essential	1, 2, 4, 5, 6, 7
Barbas and Kelleher (2004)	Breastfeeding increased self‐efficacy. Infants were sometimes too sick and too sleepy to feed. IBCLCs were found to be helpful but few of them. Nurses were less helpful. Pumps were essential	2, 3, 4, 5, 6, 7
Barros da Silva et al. (2019)	Practical issues of discomfort and difficult to maintain supply. Breastfeeding was hard, but parents motivated to persevere. Infants often too sick to feed, then once better, very sleepy. Very little support available. Pumps essential and not always available	1, 2, 3, 4, 5, 6, 7
Duhn and Burke (1998)	Parents were exhausted and stressed. Surgery and ventilation were barriers to success. As infants got better, they continued to be sleepy and struggled with weight. Healthcare professionals often used negative language. Lack of support to use equipment though it was essential.	2, 3, 4, 6, 7
Heilbronner et al. (2017)	Parents struggled with practicalities of admission to hospital. Illness severity not linked to breastfeeding rates in this sample. Inadequate lactation support. Poor advice from healthcare professionals. Not enough pumps	1, 3, 5, 6, 7
Lambert and Watters (1998)	Practical milk supply issues. Parents struggled with fatigue and anxiety. Preoperative fasting and surgery was a barrier. Adaptations for sleepy, slow gaining babies needed. IBCLCs were helpful but not enough of them. Healthcare professionals had little training and were not found to be helpful by parents. Lack of privacy and inconsistent advice about equipment noted.	1, 2, 3, 4, 5, 6, 7
Lewis and Kritzinger (2004)	Parents experienced a range of emotions. Infants were often complex and unstable. Infants often had low tone, and adaptations were needed. No IBCLCs, but peer support was helpful. No critique of healthcare professional input. Parents variously used nasogastric and gastrostomy tubes but no information about how these were managed by parents	2, 3, 4, 5, 6, 7
Madhoun et al. (2019)	Milk supply struggles. Anxiety and depression were common. Many breastfeeding problems and lower duration of feeding with cleft palate. IBCLCs accessible but not part of cleft team. Healthcare professionals lacked knowledge and skills. Multiple types of equipment needed	1, 2, 4, 5, 6, 7
Moe et al. (1998)	Feeding challenges were common. Infant supplementation common. Breastfeeding was seen as a positive intervention. Many complex swallowing problems cited, plus low tone and sleepy infants. Lack of lactation support. Healthcare professionals were unsupportive. Specialized techniques were needed	2, 3, 4, 5, 6, 7
Rendón‐Macías et al. (2002)	Perceived low milk supply was common. Fasting protocols and surgery were barriers, and as infants got better, weight problems and poor suck were problematic. Advice to stop breastfeeding was common	1, 3, 4, 6
Ryan et al. (2013)	Perceived low milk supply was common. Parents experienced stress and anxiety frequently. Needing to know fluid volumes was a barrier. Parents were critical of healthcare professionals' support of lactation but felt conflicted as they needed those professionals to care for their infants clinically. Pumps were essential	1, 2, 4, 5, 6, 7