Impacts of raising a child with a feeding difficulty in Aotearoa New Zealand

Paediatric feeding difficulties (PFD) are disruptive, hindering family life and routines as well as being the cause of many health issues for children. Further, PFD cause financial and psychological stress to whānau (family, extended family connections). Feeding may be a challenge from birth, may become more difficult over time or may coincide with a period of illness.¹ Children may have chronic complex medical situations or be otherwise healthy. There is currently little research that reports on the financial and psychological impacts of having a child with a feeding difficulty from an Aotearoa perspective. There is no exact data on the prevalence of feeding problems in children in Aotearoa. Existing research focussed on the economic challenges associated with childhood disability, for whom feeding difficulties are prevalent, is commonly from Census data. Feeding difficulties are not reported on in the New Zealand Disability Survey; however, if we apply the widely accepted prevalence data of 20% of typically developing children (20% of 837,479 = 167,495.8) and 80% of children with disabilities (80% of 103,521 = 82,816.8) having a feeding difficulty (PFD), this would mean that more than 250,000 children in Aotearoa will experience PFD at some point in their childhood, with approximately 43,303 (17.3%) predicted to be Māori.

Māori are the Indigenous people of Aotearoa, and the role of kai (food) is highly important in whānau relationships. Māori and Pacific grandparents and extended whānau often care for children from birth (or soon thereafter) to the age of 3 years.² Being with whānau is an important component of Māori hauora (Māori philosophy of health).^2,3 PFD may particularly impact on the nurturing aspect of feeding for Māori,^3,4 and there are known barriers to accessing public health system care and support.^2,5,6

Extant literature does little to address the cost of PFD in Aotearoa. Canadian studies identified most families of children with disabilities were unable to engage in paid work to the same extent as families of typically developing children.^7,8 In Australia, parents of children with intellectual disabilities faced between AUD$15,000 and AUD$25,000 in additional costs, depending on the severity of their child’s disability.⁹ This was on top of costs associated with reduced labour, estimated to add up to around AUD$48,000 per year. In a study focussed on PFD, Australian parents reported considerable financial impacts, including the cost of the appointment itself, the time taken to attend (at least half a day) and the associated disruption to work and other daily activities.¹⁰ These impacts are likely to be magnified for Māori.

The diverse ways that healthcare is funded internationally affects cost comparisons with Aotearoa. The 2022 Household Economic Survey¹¹ found that one in five children with disabilities in Aotearoa lived in material hardship—more than twice the rate for typically developing children. Economic barriers to accessing support and intervention for children with PFD can have serious repercussions, including parental stress and emotional fatigue, the child developing a negative relationship with food and health risks such as undernourishment, aspiration pneumonia or choking.¹² These often life-endangering risks can be avoided with appropriate multidisciplinary input.¹³

This study explored the economic costs and psychological impact associated with raising a child with PFD in Aotearoa. Furthermore, a clearer description of the financial and psychosocial consequences associated with feeding difficulties specifically would guide health professionals and service providers to more tailored support for families.

Method

This cross-sectional study had approval from The University of Auckland Human Participants Ethics Committee #22188. Data were collected via an online survey on the Qualtrics platform. Thirty-four quantitative and qualitative questions covered demographic data, financial impacts and psychological impacts of raising a child with PFD (Appendix 1). The survey design was adapted, with permission, from the Economic Impact Study created by Feeding Matters.¹⁴

Demographic questions were based on Aotearoa Census classifications.¹⁵ Options for additional expenses incurred reflect the financial support offered to parents raising a child with a disability in Aotearoa ($200 per month).¹⁶ Changes to financial providers reflect local options.

Recruitment occurred online and in-person through advertisements in special interest groups on Facebook, and professional networks. All parents or carers of children with PFD in Aotearoa were eligible to participate. Relevant Facebook groups were identified by searching “Children with feeding difficulties Aotearoa”, “Parenting children with disabilities Aotearoa” and “Parenting support group Aotearoa” in the Facebook group search function. Respondents could enter a prize draw to win one of 10 $50 vouchers. Data collection occurred exclusively online. Respondents accessed the survey via a link in the Participant Information Sheet on their own internet-capable devices. The survey ran from August 2021 to October 2022.

Descriptive statistics were calculated for select data using Microsoft Excel and Statistical Package for Social Sciences (SPSS). Qualitative comments are included to illustrate the numerical findings.

Results

A total of 101 respondents began the survey, with a completion rate of 87% (n=88). Twenty-one respondents had children with PFD 12 months old or less, 66 children were older (range, 2 months–17 years). Of the 59 (67%) children who were tube-fed, 38 (43%) had a gastrostomy and 21 (23%) a nasogastric tube. Five respondents identified as Māori, two as Pacific peoples and 70 as Pākehā. Respondents were able to identify with more than one ethnicity. Demographic information is shown in Table 1.

View Table 1–2, Figure 1–2.

Levels of reported financial strain

A majority of respondents (n=73, 82%) reported their income was at least enough to meet their needs and a majority (n=68, 80%) experienced at least minor financial strain, with 15 (18%) respondents reporting significant strain. Chi-squared between perceived income sufficiency and financial strain was not statistically significant (χ2[9]=13.565, p=.139).

Expenses incurred by parents/caregivers of a child with PFD

Almost half of respondents (n=39, 45%) have not had to pay for any medical expenses out-of-pocket. However, all respondents in the survey reported paying for at least one non-medical expense out-of-pocket, with the most common expense being extra cleaning/laundry supplies due to reflux and/or vomiting (Figure 1).

Thirty-two percent of respondents indicated they were not experiencing extra travel costs because of their child’s PFD: 70% reported they did not travel extensively to appointments, 48% indicated they spent $1–200 per month and 20% spent over $200 on travel costs. Over 50% of respondents spent additional money each month on childcare related to their child’s feeding difficulties (up to $200 n=24 [27%], more than $201 n=23 [26%]).

Several parents reported a significant loss of earnings due to extra time spent looking after children at home or in hospital: “… There is a financial burden as I didn’t qualify for maternity leave and planned to be back at work after 4 months. At 10 months I am still not able to return to work” – P12; “I’ve been unable to work due to my youngest’s issues, yet there is no other funding or help available” – P23; “We live in a small community, and I haven’t been able to go back to work, our small daycare has only just agreed to take her. Financially we have run out of savings” – P56.

Money saving strategies

Respondents were using a wide range of strategies to save money on costs related to their child’s feeding difficulty (Figure 2). The most common strategies included reducing spending on leisure activities (n=27, 42%), reducing spending on basic needs (n=18, 28%), working more hours (n=18, 28%) and not participating in a treatment programme due to cost (n=18, 28%).

Psychological impacts

Most whānau said their relationship with food or mealtimes had changed because of their child’s feeding difficulty. Most respondents (94.4%) reported feeling stressed about their child’s feeding. Typically, mealtimes were more complex: “Very stressful environment around mealtimes. We are unable to all eat the same meal and eat as a family” – P22. Parents reported differing significance of feeding difficulties, which frequently co-occurred with other needs: “Although my child has general special needs, it is the tube feeding and feeding difficulty which causes the most strain on our day to day lives by far!” – P60, whereas P57 commented “They do correspondence school. This is in part due to feeding issues but also in part due to anxiety etc. Also, marriage issues and stress cannot be entirely blamed on feeding issues, but it’s played a part.”

Parents reported PFD resulted in them experiencing depression (n=46, 52%), anxiety (n=62, 70%) and relationship struggles with their spouse/domestic partner (n=36, 41%), as well as disconnection from their community (n=39, 44%). Some (n=13, 15%) noted challenging relationships between other siblings, particularly resentment over “special treatment”: “I feel like my other kids resent him for always having special things” – P23; “My older son … resents his brother terribly and it's causing all sorts of problems” – P14.

Supportive people, groups or organisations for parents

Most respondents were able to identify at least one person or organisation that was helpful or supportive (Table 2)—some named specific people. Forty percent had accessed free support. A minority felt whānau were supportive. Unfortunately, several felt unsupported: “None, I have tried so hard, but I can’t seem to get anywhere” – P7, “No one—I’m in this alone” – P14. Parents reported feeling judged negatively: “To be honest, no one has helped, just say I’m a bad parent [and] that he is just fussy” – P40. Others had mixed experiences with the support that was available: “Our DHB physio team have been the most helpful. Our SLT is a lovely lady—but useless. We don’t know where else to access help and can’t afford private” – P70.

There was difficulty in accessing sufficient or timely mental health support through the public health system: “I was offered six sessions of counselling via my GP but needed much more to deal with the PTSD I have from being in hospital so much with my child” – P87; “Little mental health support—took over 6 months to get any counselling” – P30.

Discussion

The aim of this study was to gain perspectives from caregivers in Aotearoa regarding the financial and psychological impact of caring for a child with PFD. Overall, results highlighted that there was a substantial experience of financial strain and little opportunity for psychological support for parents.

The majority of parents/caregivers of a child with PFD experienced some degree of financial strain. More than 60% reported feeling at least minor financial strain, with nearly 40% of respondents rating their level of financial strain as moderate or significant. This result is consistent with results of the Feeding Matters Economic Impact Study,¹⁴ as well as literature on the financial impact of raising a child with a disability.^9,17

There was a positive relationship between number of non-medical items purchased out-of-pocket and levels of reported financial strain. This could be due to Health New Zealand – Te Whatu Ora funding, whereby financial support is not provided for items costing less than $50, nor for toileting products if the child is younger than 4.5 years.¹⁸ This correlation suggests that the lack of funding for smaller items specifically related to feeding and swallowing, like special feeding utensils, food preparation supplies, bibs and nappies, are having a significant impact on the cost of raising a child with PFD.

Medical expenses, as opposed to non-medical expenses, do not appear to be a major source of financial strain for the respondents. This contrasts with the findings from the original Economic Impact Study.¹⁴ Some Aotearoa respondents reported having to pay for prescriptions, therapy visits, formula and feeding tube costs; however, a third of respondents reported that they were not paying for any medical expenses related to their child’s PFD. Further investigation is required to determine why some whānau are paying for medical expenses that should be covered by Health New Zealand – Te Whatu Ora, such as formula feeds for children over 1 year old. Respondents were paying for a maximum of two medical expenses, and up to 10 non-medical expenses. Unfunded costs such as additional kitchen utensils, formula feed and extra laundry can make healthcare unaffordable.⁶ Children’s healthcare visits and prescriptions are currently free in Aotearoa, and some feeding difficulties have funded medical expenses (e.g., tube feeding costs, formula prescriptions). It is positive that medical expenses are not a major source of financial strain. The lack of travel expenses for around half the families is consistent with the health professionals being community-based, and increasingly using telehealth methods of service delivery.

Respondents reported a wide range of money-saving strategies they used. These strategies can be broadly classified into three groups: saving money on household expenses, seeking extra money and saving money on healthcare expenses related to their child’s feeding difficulty. Respondents reduced spending on both basic needs like food and clothing, as well as on leisure and community activities. Findings suggest the financial strain is leading to a reduced quality of life for the entire whānau.¹⁷ Lastly, while the known impacts of credit card debt are variable, medical debt may lead to a cycle of poverty, including poorer physical and mental health and disruption to whānau life.^19–21

The burden of hospital stays and reduced opportunity for working was a reported cause of stress for many families. Rather than additional expenses, a lack of income due to not being able to work was a substantial cause for parents’ concern. For many, partner and spousal relationships were impacted, along with relationships between parents and children who were typical feeders. Whānau were a source of support for only a few families, which may reflect the mainly Pākehā demographic. Māori and Pacific whānau were under-represented in this study and are likely to experience greater whānau support. Previous studies show high levels of stress and increased risks of anxiety and depression in parents of children with feeding difficulties, with impacts on relationships with spouses, wider social relationships and employment.¹² Parents commented that it was difficult to access mental health support when they needed it, with a small number indicating they were under care of local Maternal Mental Health services. Approximately one third of families/whānau spent money to address psychological issues arising from the stress of their child’s PFD.

Our sample mainly captured the perspectives of Pākehā whānau in Aotearoa. Overall, 38% of respondents indicated they were not employed outside of the home and 14% were not in a relationship. Further, one third of our sample paid out-of-pocket to access psychological support (broadly construed).²² The sample population was strongly tauiwi. An online survey may not adequately capture voices of Māori or Pacific whānau, due to accessibility, or the lack of kanohi ki te kanohi (face-to-face) recruitment or delivery. Further qualitative research with a Kaupapa Māori approach is needed; a notable example is a recent paper focussing on Māori experiences of treatment and recovery from eating disorders.²³

For Māori, we also acknowledge the impact of colonisation on health outcomes, and the current systemic and institutional biases in the healthcare system that act as barriers to accessing care.²⁴ Especially for PFD, there are few and inconsistently funded services, and none that are designed by Māori or involve a Kaupapa Māori approach.

There are many informal networks accessed by whānau and families to mitigate stress and fulfil a need for advice and support when caring for a child with a feeding difficulty. This, however, does not replace the medical advice and assistance needed for whānau and families to safely care for children with feeding difficulties alongside very complex health needs and medical challenges. Overall, the results indicate that for most families there is a substantial financial burden posed from raising a child with PFD. Parents/caregivers reported experiencing financial strain, but psychological impacts were more emotive, and further consideration should be given to a whānau-centred approach, addressing the mental wellbeing of the whole whānau where there is a child with a feeding difficulty.

View Appendices.