The experiences of new mothers accessing feeding support for infants with down syndrome during the COVID-19 pandemic

Figures & data

Table 1. Results from questionnaire distributed to professionals working in feeding services.

Comments regarding changes to services during the pandemic	No. of services this change was reported by	Positive feedback from staff and their service users about feeding support services during the pandemic	Negative feedback from staff and service users about feeding support services during the pandemic
Feeding support services were stopped or changed during the pandemic, including peer support in hospital, drop-in breastfeeding clinics and face-to-face introduction to solids seminars at family centres. Some of these services remained available face-to-face but by appointment only instead of as a drop-in service and some sessions were offered via video call instead. Circumstances under which face-to-face appointments went ahead were where there were safeguarding concerns, where a full feeding assessment was required (e.g. in cases of a potential tongue tie), and if virtual consultations had not addressed parents’ needs).	5	A switch to video and telephone appointments in some services meant that more service users could be contacted. Beneficial for staff to see where parents usually sit and feed baby at home. One service conducted an infant feeding survey and found that 93% of families surveyed were happy with the virtual drop-in service.	Two staff members from different organisations felt that feeding support availability at their service had reduced in this time. Some service users were unsure where to access feeding support. Staff confusion over service availability meant that staff were not referring service users to tongue tie clinics or Health Visiting specialist clinics, mistakenly thinking that they were not running anymore. Number of different options of support available to mothers was reduced. One service received feedback that mothers would like more universal drop in feeding groups that anyone could attend (which were available pre-pandemic), as opposed to specific groups for people with certain difficulties.
Some existing feeding support services increased throughout the pandemic.	3	One staff member felt that the overall quality of feeding support their service offered had improved throughout the pandemic.
No feeding support services were increased throughout the pandemic.	3
Introduced new 1:1 and group support sessions via telephone and video cal e.g. new appointment at 3 months old	4	Being able to access support in service users’ own homes was very positive. New systems were time effective. Video calls were beneficial for staff—allowed a closer view of baby’s feeding than would have been possible from in-person appointment where a 2 m distance would have been required.
		Service users were happy with extra contact at three months

Figure 1. Superordinate themes and their sub-themes.

Table 2. Sample characteristics.

	Maternal characteristics	Infant characteristics
Mean age	35.5 years, SD= 3.9	11.8 months, SD= 3.0
Age range	28–40 years	8–17 months
No. who gave birth before lockdown	3
No. who gave birth after start of first lockdown	9
No. of the sample that were first time mothers	6
Postnatal hospital stay duration (range)	1–15	1–35
Postnatal hospital stay duration (mean)	6, SD= 5.0	9.7, SD= 9.9

Table 3. Characteristics of individual participants and their infants.

Participant Pseudonym	Age (years)	Country of residence	First time mother?	Child born before or after start of 1st UK lockdown	Mother’s postnatal hospital stay duration (days)	Automatic referrals to relevant services^1 when leaving hospital?	Child age (months)	Infant’s postnatal hospital stay duration (days)
Megan	39	England	Yes	Before	14	No	16	35
Amber	38	Scotland	No	After	4	No	11	4
Christine	28	England	Yes	After	12	No	8	12
Lily	34	England	No	After	1	No	9	1
Nicole	34	England	Yes	Before	15	No	16	15
Robin	29	England	Yes	After	5	Yes	13	20
Jen	37	England	No	After	2	No	10	2
May	40	England	No	After	2	No	9	2
Evie	36	England	Yes	After	2	No	12	2
Claudia	38	England	No	After	7	No	10	7
Isabelle	39	Northern Ireland	No	Before	6	Yes	17	6
Zena	34	England	Yes	After	2	Yes	11	10
Kaisha	–	England	No		–	No		–

¹ This encompasses all support services relevant to infants with Down syndrome e.g. Speech and Language, Occupational Therapy, Physiotherapy.