Role of Parents and Carers in Clubfoot

Original Editor - Rosalind Owen in conjunction with Africa Clubfoot Training Team as part of ICRC and GCI Clubfoot Content Development Project

Top Contributors - Naomi O'Reilly, Kim Jackson, Rachael Lowe, Simisola Ajeyalemi, Meaghan Rieke and Rucha Gadgil  

Introduction

Caregivers (parents, families, carers) of children with clubfoot play a very large, and essential role in their treatment. First they must take responsibility for seeking care for the child. Treatment involves correcting the foot position with a series of manipulation and castings, for success the caregiver must adhere to the protocol which involves attending multiple and frequent clinic visits. Once the foot is in the correct position foot abduction bracing is started it is the caregivers that must apply braces every night until they are 4-5 years old.

There are many factors that influence caregivers in seeking and attending treatment for their child. Addressing the carer related factors that influence the start and non-compliance for the treatment can be beneficial for the whole population served and attribute to the success of healthcare programs.  

Barriers to early presentation

Despite clubfoot clinics being well prepared to provide treatment, often parents do not bring their children for treatment. Possible reasons include:

Beliefs:

• That clubfoot is a curse, from God, or because of mother’s behavior
• That the child is a reincarnation of a deceased relative who had clubfoot and therefore should not be treated
• In witchcraft

Fear:

• Stigma, Shame, Rejection, Blame
• Modern Medicine

Poverty:

• Cost of treatment
• Transport costs can be prohibitive

Other:

• Girls may be a low priority
• Don’t know treatment is available
• Not diagnosed at birth
• Poor referral systems
• Limited general public awareness
• Lack of access to medical care
• Lack of awareness of other health services regarding where Ponseti treatment is available.

Challenges during treatment

Caregivers face many challenges during clubfoot treatment that lead to missed appointments or stopping attending treatment. This not only affects the effectiveness of the treatment and prolongs its duration, but also wastes hospital resources. These challenges often include:

• Duration of treatment - from birth until 4-5 years of age or longer
• Frequency of appointments
• Practicalities of application of the foot abduction brace for 23 hours for the first 12 weeks and at night and nap times until 4-5 years of age

In some locations additional challenges can include:

• Financial constraints in relation to transport and other medical expenses
• The distance, duration and cost of travel to attend clinic appointments
• Not having someone at home to care for other children.
• Families not understanding clubfoot treatment correctly, or not being given clear instructions on their roles in treatment
• Facing stigma from their communities due to traditional or cultural beliefs around clubfoot, such as that it is a curse. Mothers of babies born with clubfoot can be ostracised by their communities or families for these reasons.
• Lack of family support.

Parents advisors

Clinical staff are often too busy to provide detailed education and support to parents. Therefore many clinics now use parent advisors to help improve their effectiveness. In addition to providing education as above, parent advisors can also help with:

• Encouraging adherence, e.g. through reminder calls or messages before appointment, or home and community visits
• Problem-solving practical challenges such as difficulties attending appointments
• Identifying and working with families at risk of dropout
• Calling after patients miss appointments
• Dispelling myths about clubfoot and causes
• Advocating for families
• Acting as a communication link between families and medical staff
• Encouraging discussion and support between parents e.g. in the waiting area
• Working in the community to raise awareness
• Providing encouragement throughout the process
• Encouraging fathers to get involved
• Working with community leaders to endorse families seeking and attending treatment
• Dealing with conflict in the family that may disrupt clinic attendance.

Role of physiotherapist

As well as providing empathetic support and information throughout the treatment process, physiotherapists have a role in ensuring that patients who are at risk of, or who have dropped out of treatment are identified and followed up.  This means putting systems in place so that when patients do not attend for follow up visits as scheduled this is noted and there is a means of contacting them to remind them of their appointment and encourage them to attend.

Promotion

Clinics can do many things to try to promote options to caregivers about early diagnosis and referral of babies with clubfoot:

• Public awareness campaigns
• Posters, brochures
• Radio, newspapers, TV
• Training - midwives, TBAs (Traditional Birth Attendants), community health workers, rural hospitals
• Setting up referral networks
• Introducing ponseti training into health worker curriculums
• Set weekly clinic days
• Encourage word of mouth
• Challenge traditional beliefs
• Involve community leaders, chiefs, elders
• Share testimonials of success stories

Education

Parents need a lot of information during clubfoot treatment, especially early in the process. It is important to communicate clearly and simply. Cover subjects including the following:

• What clubfoot Is
• The cause of clubfoot is not known
• It is not a curse or the mother’s fault
• Clubfoot is very common
• What is Ponseti method of treatment
• Success of Ponseti method
• Treatment stages - full protocol
• How long treatment takes
• How to care for casts
• What is a tenotomy
• Braces - what they are and why they are needed
• Brace wearing protocol
• How the clinic works
• Appointments schedule
• The role and importance of parents.

Resources

There are useful materials on the STEPS South Africa website on supporting parents throughout the treatment process:

Manuals:

• Ponseti for Parents Advisor Manual

Step by Step Guides:

• Clubfoot can be Treated
• Maintaining Clubfoot Correction

Posters

• Clubfoot can be Treated