Abstract
The Ponseti Method of casting and bracing is the gold-standard treatment for congenital clubfoot in young children. Despite its many advantages, outcomes depend heavily on caregiver adherence to the treatment protocol. Our study explored the experience caregivers had with the Ponseti method using a photography-based participatory research method known as Photovoice. Five adult caregivers were recruited from families pursuing clubfoot treatment at the Children's Hospital in Lima, Perú, during June, 2013. Each was provided a digital camera and training and agreed to photograph their experiences caring for a child undergoing Ponseti Method clubfoot treatment. Participants held four to five weekly one-on-one meetings with the researcher to discuss their photos. They also attended a group meeting at the end of the study to view and discuss photos of other participants. Using photos collected at this meeting, participants identified themes that summarized their experiences with treatment and discussed ways to improve delivery of care in order to support caregiver adherence to treatment. These results were presented to clinicians in Lima who use the Ponseti Method. The Photovoice method allowed researchers and participants to study the experience caregivers have with the Ponseti Method, and results can be used to inform the design of patient-based care models.
Introduction
Clubfoot is the most common musculoskeletal birth defect. It affects, on average, one in every 1,000 live births, or 200,000 babies each year, worldwide (80% in developing countries)1 Additionally, an estimated one million children are currently living with untreated clubfoot, a rigid, unsightiy, lifelong disability that often leads to isolation, abuse, limited access to education, and poverty.2 Traditional treatment has been based on major surgical interventions that are very expensive, require highly trained professionals and facilities, and have poor long-term outcomes. In light of these barriers and due to a lack of awareness and availability regarding a simpler and more cost-effective approach, a high percentage of children are simply left untreated and disabled for life, especially in developing countries2.
The Ponseti Method is a simple and inexpensive outpatient treatment that has been proven to be over 95% effective when properly administered3. Long term follow-up studies spanning on average 34 years have also observed maintenance of clinical and functional results in a majority of patients4,5. This treatment method consists of a series of specific gentie manipulations followed by plaster casts, changed weekly. Usually four to six casts are required to correct the deformity. In 85% of cases, patients undergo a simple, percutaneous heel cord tenotomy (usually done as an outpatient procedure) as the final stage of the casting treatment. To prevent relapses, a foot abduction brace is usually worn daily for three months and then nightly until the child is three to four years old6. Given then effectiveness of the treatment and the avoidance of surgery, the Ponseti method is now the preferred treatment for clubfoot worldwide7. Still, this method is not without its challenges, namely the length of treatment. Although correcting the foot may only take a few weeks, maintaining the correction through the use of the abduction brace requires that caregivers commit their children to wearing the brace for several years. Adherence to the bracing protocol is the main factor determining the long-term success of treatment, even as it poses a challenge for patients and caregivers8.
Several studies have explored the reasons for non-adherence using qualitative research methods including semi-structured interviews, focus groups, and observations with parents of patients, health-care providers, and general community members9-16. In this study we continue to explore caregiver adherence using a novel qualitative research method known as Photovoice.
Photovoice has been used since the mid-1990s as a community-based participatory research method that allows participants to use photography as a medium to identify and discuss social issues within their communities17. Participants are given cameras and encouraged to photograph images they self-identify as significant to their experience of the world. These images are then used to initiate discussion regarding their community's strengths and concerns, promote critical dialogue and knowledge about important issues, and to influence policy. Photovoice has been used by researchers in collaboration with different vulnerable populations to address a variety of public health and social justice concerns including infectious disease epidemics, chronic health problems, political violence, and discrimination18-22. This study used Photovoice to gain an inside perspective of the lives of families affected by clubfoot and the Ponseti Method by giving them cameras and engaging them as research partners. By asking them to photograph their experience with clubfoot and its treatment and through joint analysis of the photos, we evaluated opportunities to promote and improve adherence to the Ponseti Method.
Methods
The University of Iowa Institutional Review Board approved this study before implementation. A Spanish-speaking medical student recruited subjects and coordinated meetings and data analysis with study participants.
Participants were recruited from the National Children's Hospital in Lima, Perú. Inclusion criteria were parents (hereon referred to as caregivers) over the age of 18 who have at least one child with clubfoot, for whom they were seeking treatment for the first time. Caregivers agreed to take photographs documenting their experiences with the Ponseti Method and to share them with us and a small group of other caregivers participating in the study. Informed consent was obtained by having caregivers review and discuss a consent form with us. No names were attached to the data and all data was stored in a secure location.
We recruited five adult caregivers pursuing clubfoot treatment for a child during June, 2013. We gave each caregiver a digital camera, trained them how to use it, and instructed them on how to take pictures in a manner that respected the privacy of others, including consent forms to offer photo subjects in the event they needed to do so. Caregivers were also given a 1 hour educational session about clubfoot and the Ponseti method of treatment as well as corresponding printed information.
Caregivers were asked to photograph their experiences caring for a child undergoing the Ponseti Method for clubfoot; instructions on what to photograph was left deliberately broad in scope to allow participants to focus on whatever they identified as important. Caregivers returned in one week and met with the researcher to show and discuss photographs taken over the course of the week. Discussions of the photographs were loosely structured so as to allow caregivers to focus on photographs they felt were the most pertinent to their experience. Conversations were started with the question, “tell me the story of this photo,” and followed up with, “why is this photo important to you?” and, “is there something about this photo that you wish your doctor could understand?” when appropriate. In subsequent weeks, caregivers continued to focus their photographs on themes they self-identified as important. Caregivers participated in four to five of such weekly one-on-one meetings, which were recorded and transcribed. Identifying information was removed from the transcriptions, and transcriptions were attached to the photographs.
After four to five weeks, caregivers attended a group meeting that included all study participants to view and discuss the photos taken and their associated transcriptions. The photo collection, transcriptions, and the discussions revealed that these caregivers had a collective experience associated with clubfoot and the Ponseti Method. Caregivers were asked to identify any repeating themes within their collective experience, and to choose the photos that best represented those themes. Finally, they were asked to identify opportunities to improve delivery of care of the Ponseti Method and support adherence to treatment.
All results were presented at an additional meeting to physicians, nurses, and technicians in Lima who use the Ponseti Method. Meeting participants were encouraged to discuss results and assess whether suggestions made by the caregivers were realistic and implementable.
Results
Caregivers identified four major themes that represented their collective experience with the Ponseti Method and their thoughts on adherence: family, education, child development, and judgment. They also chose photos that best represented those themes (Photos 1–14) and brainstormed strategies that healthcare providers could employ to address these observations and encourage adherence (Table 1).
Photo 1. This is my brother. We stay with him in Lima while my son gets treatment. We could not do the treatment without his support because we live very far from the hospital and we have very little money.
Photo 14. My son has clubfoot and Mobius syndrome, but his clubfoot worries me more. He can't go to school in casts or with clubbed feet, the other children make fun of him and his teachers don't know how to help him. But I know he is smart and can learn.
Table 1.
Results of the group meeting involving all caregivers including identified themes, major observations within those themes, and suggested strategies for healthcare providers to address these observations and encourage adherence.
| Theme | Observation | Suggested strategy | Photographs |
|---|---|---|---|
| Family | Moral and financial support from the family and sharing of caregiver responsibilities were described as critical to supporting caregiver adherence. | Provide printed materials about clubfoot and the Ponseti Method. Use photography to tract the progress of the feet. |
Figures 1-4 |
| Education | Caregivers agreed that the more educated they became about clubfoot and the Ponseti Method of treatment, the better they were at caring for their child and eliciting support from others. | Provide printed materials about clubfoot and the Ponseti Method. Raise awareness of the Ponseti Method among other healthcare providers. |
Figures 5-8 |
| Child development | Concerns about the normal development of their children and the inability to track growth while using the Ponseti Method caused some caregivers to question their participation in treatment. | Discuss concerns during regular appointments. Make scales and measuring tables available in the clinic. | Figures 9–11 |
| Judgment | Caregivers were distressed by what they perceived as others' negative judgments towards them when they appeared in public with a child wearing full leg casts. | Provide printed materials about clubfoot and the Ponseti Method. Suggest alternative terms to discuss clubfoot instead of “deformity” or “sickness”. |
Figures 12-14 |
Description of Photos
In each case, photo captions are transcriptions of explanations caregivers felt were important to include with the photographs.
Photos 1–4. Family. These photos were selected to represent the important role that family plays when a child is undergoing the Ponseti Method.
Photo 4. This is my son. He helps me take care of his brother. Sometimes he gets mad and calls him names. I tell him that he shouldn't do that, that we must help him. I know that he loves him.
Photos 5–8. Education. These photos were selected to represent the importance of properly educating both caregivers and other healthcare providers about clubfoot and the Ponseti Method.
Photo 5. This is my sister-in-law. She is pregnant. I had to explain to her what clubfoot was when she came to visit and saw my baby. She had never heard about it and asked me if her baby could get it too. I gave her some information I got from the hospital and I felt good about that.
Photo 8. My daughter got a UTI because I didn't change her diaper carefully enough. I wish I knew that could happen! Now I use plastic bags on her casts when I change her.
Photos 9–11. Child development. These photos were selected to represent concerns caregivers have regarding the normal development of their children while undergoing the Ponseti Method.
Photo 9. Here is my daughter trying to crawl. I know she wants to, she is at the age when children want to move. It hurts me to see her so frustrated, and other mothers in the waiting room say that even though this treatment straightens the feet, they are still unable to walk well after.
Photos 10–11. I took these pictures when I took him to his Well Child appointments. The technician could only approximate his weight and length. I get worried that we cannot track the development of my son, as I did for my other children. The casts also prevented the nurse from administering vaccinations in the thigh. Maybe it would be better to start Ponseti after he is done with these appointments?
Photos 12–14. Judgment. These photos were chosen to represent how caregivers feel judged when others see their child's legs in casts.
Photo 12. This is the father, my husband. When we first knew our child had clubfoot, he blamed me, then he blamed himself. He still won't take our baby to meet his family until he does not need to wear casts.
Discussion
Family
Caregivers identified “Family” as a major theme in their experience with clubfoot and the Ponseti Method. Family provides the financial support necessary for weekly trips to the National Children's Hospital in Lima. Family also shares in caregiver responsibilities, making caring for a child with two full-leg casts more manageable. Caregivers also found that securing these forms support from family was not always easy. One caregiver, originally from a rural province, was living her brother in Lima while her son received treatment. She was keenly aware of being a financial drain and worried that she would overstay her welcome before her son's feet were corrected (photo 1). Another caregiver had to argue with her husband for money to take her son to the hospital for his weekly cast change. Her husband wasn't convinced that the treatment was working, because he only ever saw his son in casts and never saw the progress of the treatment (photo 2). Other caregivers experienced difficulty explaining to family members what was wrong with their child's feet and securing more help in caring for the child (photos 3 and 4).
Photo 2. My husband cannot come to appointments because he works. I took this picture before they put on the new cast to show him so he could see that the treatment works, that I am not just spending his money.
Photo 3. It takes 30 minutes to wash my baby because of the casts. I could not do it without my daughter's help. My other daughter does not like that I spend so much time with the baby. She is jealous.
When asked what healthcare providers could do to help caregivers address these challenges, caregivers felt that if they understood better what clubfoot was and how the entire treatment process worked, they could better advocate for resources and support from their family. They felt that printed materials provided to them by the study would help them teach their family about clubfoot and the Ponseti Method and add legitimacy to their requests for support. One caregiver began taking photos of her child's feet after the old cast was removed and before the new cast was applied so that she could show her husband the progress the child's feet were making (photo 2). After she began doing this, she no longer had difficulty obtaining money from her husband for weekly appointments. This caregiver felt that healthcare providers should encourage other caregivers to photograph the treatment progress using cellphones, as even the most basic models usually have a camera function.
Education
“Education” was another major theme identified by caregivers in their experience with clubfoot and the Ponseti Method. One caregiver found herself needing to explain what clubfoot was to a sister-in-law who was in her third-trimester and worried that her unborn child could have clubfoot too. That caregiver struggled to explain both clubfoot and its treatment until she found the printed information given to her during the educational sessions when she first joined the study, at which point she could explain what clubfoot was and how the Ponseti method worked (photo 5). Another caregiver regularly struggled with adhering to treatment given the major doubts she had regarding the Ponseti method's effectiveness. Her son began the treatment at three years old (as opposed to within the first few months of life), and consequently was not progressing as quickly or noticeably at the other children who started within the first 6 months after birth. She did not share her questions with the physician, however, and remained unsure whether the expense of getting the treatment was worthwhile (photo 6).
Photo 6. This is my son with animals from my family's farm. I get upset when I see this because I worry that he'll never be able to take over the family business. I am discouraged when I look at this, I don't see progress.
Another caregiver was frustrated with a general lack of knowledge among healthcare professionals about clubfoot and the Ponseti Method. Prior to seeking treatment at the National Children's Hospital, this caregiver spent a lot of money on diagnostic tests and imaging studies requested by different physicians who were not familiar with clubfoot (photo 7). These physicians recommended surgery as the only option to correct her daughter's bilateral clubfeet. Fearing disfiguring scars that would result from the surgery, this caregiver sought out alternative therapies and chose the Ponseti Method of treatment because it sounded less risky, not because it had better outcomes. Due to the lack cohesive medical opinions regarding clubfoot and its proper treatment, she admitted to feeling initially distrustful of even the Ponseti Method and it took her several weeks before she felt confident that the treatment would work. Another caregiver felt that she was not instructed properly by her physician how to care for her child while the child was wearing casts. Her daughter experienced reoccur-ring urinary tract infections while wearing the casts and she wasn't sure if it was related. She did not bring her question to the physician, but rather chose to ask other mothers in the waiting room if they had experienced anything similar. They suggested she protect the casts while changing her daughter's diapers by tucking plastic bags around the rim of the cast to prevent trace fecal contamination (photo 8). After adopting this suggestion and with treatment, her daughter's infections stopped and did not reoccur.
Photo 7. These are all of the tests and x-rays we got for our daughter when she was born. They were very expensive, but the doctors we saw still didn't know her diagnosis. We looked for a long time for an alternative to surgery. It seems that other doctors don't know about the Ponseti Method.
When asked what healthcare providers could do to help caregivers address these challenges, caregivers again suggested that hospitals provide printed materials explaining club foot and the Ponseti Method. They also wanted advice on how to care for a child with full leg casts such as how to bath, change, and dress a child wearing casts, how to determine if a cast is too tight, and acceptable activities for a child wearing casts. They also suggested that while applying the new casts the healthcare provider should use that opportunity to check in with the caregiver's understanding of clubfoot and the Ponseti method and ask if there were any new concerns or questions. Finally, caregivers emphasized the need for their healthcare providers to raise awareness of clubfoot and the availability of the Ponseti Method among other healthcare professionals, including midwives, nurses, obstetricians, pediatricians, and orthopedic surgeons.
Child Development
Caregivers identified “Child Development” as a major theme in their experience with clubfoot and the Ponseti Method. Caregivers of children only a few months old at the start of treatment were concerned that the casts would not allow the proper development of their children since the casts prohibited them from normal activities like crawling, standing, and walking (photo 9). One caregiver was also mislead by other mothers to believe that while the treatment would help to straighten her daughter's feet, she would still be unable to walk properly due to being prevented by the casts from learning how at an early age. Another caregiver was worried by the inability to accurately monitor the length and weight of her baby at Well Child appointments as she had with her previous children due to the casts (photos 10 and 11). She was also worried about the difficulty accessing the thigh for childhood immunizations with the casts on. These concerns related to child development caused caregivers to wonder whether delaying the Ponseti Method would be a better choice so as to allow the child a chance to comply with Well Child appointments and develop better motor skills.
When asked what healthcare providers could do to help caregivers address these concerns, caregivers again suggested that healthcare providers establish a time for caregivers to ask questions or voice concerns about the treatment, and suggested that that time be while the caregiver assisted the healthcare provider in reapplying the new cast. Caregivers also suggested that a measuring table and scale be available in the same room as where the casts are removed and reapplied so that accurate measurements of length and weight may be made in between casts. Finally, caregivers suggested that healthcare providers make nurses who give vaccinations aware of alternative places to administer vaccinations other than the upper thigh if that region is unavailable due to the casts.
Judgment
Caregivers identified “Judgment” as a major theme in their experience with clubfoot and the Ponseti Method. The casts, being conspicuous, often lead to questions from both strangers and family members about clubfoot at the Ponseti Method of treatment. Caregivers felt ill-prepared initially to answer these questions and were distressed by what they perceived as judgment from others, such as the belief that they did or didn't do something during pregnancy, thus causing their child's clubfoot. One caregiver's husband refused to introduce their child to other family members while the child was wearing casts because he felt his family would either blame his diabetes or the great difference in age between him and his wife as the cause for the clubfeet (photo 12). Another caregiver was so bothered by questions from strangers regarding the casts that she practiced role-playing responses with her cousin before using public transportation (photo 13). Another caregiver, whose son also had Mobius Syndrome, was more concerned by how the casts prevented her son from playing with other children and caused him to be teased for crawling than by how Mobius Syndrome interfered with his ability to socialize (photo 14).
Photo 13. This is my cousin. She and her husband are helping me practice talking about clubfoot and the casts. I still have trouble explaining why my daughter has clubfoot, but I am better at explaining how the casts help fix her feet.
When asked what healthcare providers could do to help caregivers address these concerns, caregivers again suggested that the hospital provide them with printed materials by the hospital explaining clubfoot and the Ponseti Method could help facilitate conversations with family and friends about these topics. After brainstorming among themselves, caregivers felt that the term “condition” instead of “illness” or “deformity” helped explain clubfoot and the Ponseti Method in a way that mitigated judgment from others and suggested that healthcare providers encourage other caregivers to use this term when explaining clubfoot to others. Caregivers also felt that describing the bones in the feet as “being crooked”, similar to crooked teeth, might help create a visual of the problem and support the rational for using casts as a means of straightening the feet.
After caregivers finished organizing their experiences into themes, they were asked to rank their suggested strategies for promoting treatment adherence. Caregivers believed that receiving more education about clubfoot and the Ponseti method in the form of printed materials would be the most effective intervention. Following this was tracking the progress of their children's feet using cell phone photography, regularly discussing their concerns with their doctors, and receiving counseling from their doctors on how to teach others about clubfoot and the Ponseti Method. Finally, they felt that making scales and measuring tables available in the office to track height and weight would also support adherence.
At a final meeting in Lima, we presented the results to physicians, nurses, and technicians who use the Ponseti Method. Certain findings were expected and understood by health professionals, for example, how a lack of education about clubfoot and the Ponseti Method contributes to caregiver-non-adherence. The group agreed that printed informational material would be a valuable resource for caregivers and could help address common misconceptions and promote adherence. While many providers felt they did not have the resources (paper and printing costs) to offer such material, they believed that institutions like Ponseti International Association could provide such material for their clinics.
Findings that the group did not anticipate included how the Ponseti Method can interfere with Well Child appointments and how that could impact a parent's decision to adhere to treatment. The group agreed that they could and should equip examination rooms with scales and measuring tables in order to accurately trend developmental milestones for Well Child documentation. They also agreed that those who administered childhood vaccinations in the hospital should be educated about alternative appropriate injection sites for a child with leg casts so that these patients did not miss any scheduled immunizations. Overall, the group of healthcare providers found the results of the study to be insightful, and the proposed suggestions for improving treatment adherence to be sensible and implementable.
Conclusion
Treatment adherence is critical to successful immediate and long-term outcomes of the Ponseti Method. Caregiver adherence can be influenced by multiple factors ranging from financial constraints to logistic and cultural barriers. In this study, Photovoice was used as a novel qualitative participatory research method to explore issues affecting adherence to the Ponseti Method in Lima, Perú. Participant caregivers used digital photography to collect data and explore their experiences with clubfoot and the Ponseti Method, asking themselves why adherence to the Ponseti Method is difficult and what can be done about it. The results of this inquiry were well-received by other stake-holders in the treatment of clubfoot, namely healthcare professional who use the Ponseti Method. They felt this study clarified the degree to which certain barriers may impede caregivers' adherence to the Ponseti method, and illuminated new barriers to treatment adherence. Finally, both caregivers and healthcare professionals discussed and agreed upon practical strategies that could help improve adherence to treatment.
Source of Funding
Funded by the Minority Health and Health Disparities International Research and Training (MHIRT) program of the National Institutes of Health, and also by Ponseti International Associaiton.
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