The impact of the Ponseti treatment method on parents and caregivers of children with clubfoot: a comparison of two urban populations in Europe and Africa

Congenital talipes equinovarus (CTEV) or clubfoot is the most common musculoskeletal deformity at birth, with a reported incidence of 1.2 per 1000 live births [1]. Various treatment options exist for CTEV but the current accepted gold standard is the Ponseti method, with open surgery reserved for those feet that cannot be completely corrected [2‐5].

Parents of children diagnosed with CTEV face increased stress during pregnancy and/or at birth [6]. In addition, they have to learn to accept the deformity in the neonatal period, to attend weekly visits to the hospital for several weeks after birth for casting and to cope daily with an intensive bracing regime until the child is at least 3 or 4 years old.

It is known that chronic conditions in children, such as asthma, heart and renal disease, cause increased levels of anxiety, depression and stress in parents [7‐9]. Only one study reports preliminary findings of a negative impact of the diagnosis of CTEV on the mother’s psychological well-being [6]. It is important to evaluate the parent’s perspective in order to minimize the impact of the condition and to implement appropriate interventions that help optimize family function.

There are no published studies that evaluate the effect of the currently accepted gold standard treatment of CTEV on parents and caregivers. We conducted a double-centre study of parents with children diagnosed with idiopathic CTEV to determine the impact on the family of the serial casting and bracing stages of the Ponseti treatment regime [10]. We also investigated any potential differences in impact and illness perception between two different communities: the high-income city of London, United Kingdom, versus the low-income city of Johannesburg, South Africa [11].

The results of this study objectively demonstrated the impact of Ponseti treatment on parents and caregivers of children affected with clubfoot. Despite being very successful, relatively non-invasive and embraced by the medical community as the gold standard, medical professionals need to acknowledge that this treatment regime causes increased stress for the families.

For a similar impact on the family, South African parents perceive higher social support, as measured using the MSPSS, and employ significantly more coping strategies, according to Brief COPE, than their British peers. This may be due to cultural and social differences between the studied populations. Our cohorts from the two different countries were dissimilar in terms of ethnicity and so the effect of the condition and its treatment, and the ways that stress is handled, are likely to be expressed differently. The results of our study show that South Africans are more comfortable receiving support and that they tend to search more for external collaboration with and help from friends and family. They employed nine different coping strategies at a significantly higher level than the British cohort in both the casting and bracing phases. These included active coping, denial, emotional support, instrumental, venting, positive reframing, planning, acceptance and religion. In the remaining five coping categories of the Brief COPE, the British cohort still showed a lower level of use although this was not statistically significant. Although it is true that South African children underwent on average a higher number of casts (6.9 UK vs 8.7 SA), when ignoring the effect of the outliers the median values are very similar for both populations (6 UK vs 7 SA). Such a small difference of one extra cast is unlikely to produce an effect on perceived social support or impact in families. Our study contributes to the literature on the assessment of cultural differences in coping with chronic conditions and the effect that a child’s medical treatment has on different cultural backgrounds [16]. Most research in this field has been conducted in Western cultures and to our knowledge none has compared European and African populations.

Social data showed that a vast majority of the families in our cohort were below the 50th percentile for household income or deprivation (92 % in the UK and 75 % in SA). We suspect that the observed lower levels of income and higher deprivation may play a role in the level of stress and coping strategies used by families, although we cannot prove this in our study. Different variable units were used in our populations, the reason being that the Office for National Statistics in the UK provided data on deprivation but this was not available for SA. In the latter population we used household income instead [17, 18].

There are some limitations of this study. Firstly, the lack of a control group does not allow for comparison with a cohort of families with healthy babies. Secondly, all questionnaires were collected retrospectively and this could have led to recall bias. To minimize this effect, we only included patients who were close to the initial casting phase so that the parents could recall their experience more easily. Thirdly, we accept that there may be an underlying gender-related bias in answering the questions, as we did not specifically ask the gender of the person completing the questionnaires. Previous evidence indicates that mothers report more psychological stress than fathers [19, 20]. Nevertheless, with the numbers in the study, we expect that this would balance out between the two groups and clearly the person most engaged with the child’s care would likely attend the appointments and would therefore be the most appropriate person to answer the questions.

A recently published study by Coppola et al. [6] is the only paper to our knowledge that investigates how an orthopaedic physical malformation can interfere with the mother’s psychological well-being. Mothers were questioned in the first 3 months after giving birth to a child diagnosed with CTEV and compared to mothers of healthy full-term babies. Amongst others, the Brief COPE and MSPSS were used. They found that mothers in the CTEV group reported more stress-related and depressive symptoms in reaction to the birth of their child and found a protective role for social support. Moreover, they highlighted the importance of implementing protocols in the hospital unit directed to parents of babies with a congenital malformation. Our study focuses on the treatment of CTEV and its impact on families who have already been through the negative event of being diagnosed at birth. Our results show only a trend towards higher impact during the initial casting phase when compared to bracing. It is unclear whether this trend is due to the higher demand of the treatment itself or to the residual effect shown by Coppola et al. [6] after being diagnosed at birth. It is likely that during the first 3 months after birth, the impact of the diagnosis could be superimposed on the effect of the casting treatment. It is therefore during this first month of treatment that families have the highest need for medical and psychological support.

In chronic diseases in children, the literature supports the need for parents to have access to medical information and emotional support [8, 9, 21, 22]. On completion of this study, a support protocol was implemented in the UK unit for parents undergoing treatment for clubfoot. A website was updated with information on clubfoot treatment available to all parents. Close links with the charity Steps (http://​www.​steps-charity.​org.​uk) were developed in order to provide guidance and support for those parents in need, including a helpline and an online community of parents that aids to reassure families of children with clubfoot. In SA the local charity Steps (http://​www.​steps.​org.​za) provide two full-time parent support staff who speak to parents and help them to cope with the stress of having a child undergoing the Ponseti treatment. Similar strategies have proved effective in managing uncertainty in the context of clubfoot [23]. Finally, a virtual clinic led by a specialized physiotherapist was implemented in the UK centre which allows consultation with parents and the child from home using videoconferencing technology. This has received very positive initial feedback, as parents complained that the number of follow-up visits and journeys to the treating hospital were one of the most significant burdens of treatment. There are plans for a similar clinic to be set up in the South African centre.

Interventions that support and help parents during the Ponseti treatment method are vital in order to minimize the impact on families. In children with chronic conditions, parenting stress and marital satisfaction can be significantly affected in an adverse manner [24]. Possible future avenues of research could include new treatment methods that reduce the numbers of visits to hospital while maintaining the standards of care, and providing the parents with easily accessible support.

This is the first study to assess the impact of an orthopaedic treatment in parents of affected children and to consider cultural differences between the two populations. The findings show that both stages of Ponseti treatment, serial casting and bracing, have a similar impact on families, although the initial casting stage demonstrated a trend towards higher impact. The populations studied showed significant differences in the perceived social support and the employment of coping strategies, with both being higher in SA than the UK. Implementation of protocols that support parents are recommended in an attempt to improve the well-being of families from different cultural and social backgrounds.