Study design

The primary intention was to understand the barriers which may in some cases be unique to the individual. In anticipation of barriers including financial and social factors which may be difficult for parents to discuss in a group in-depth individual interviews were conducted using a pre-designed topic guide developed for this study (S1 File). The topic guide was developed with the intention of helping the researcher to explore the barriers and enablers in depth and to stay focused on the topic and ensure all important questions were raised during the interview. However, the structure allowed the researcher sufficient flexibility to permit topics to be covered in an order most suited to the participants, to allow responses to be fully probed and explored and allow the researcher to be responsive to issues raised spontaneously by the participants [20].

Participants and setting

A stratified purposive sampling technique was used to ensure that the participants included those at different socio-economic levels and with experience of accessing cataract services for their child in a range of hospitals across India. The details of the hospitals and locations has been reported elsewhere [3]. The stratification was conducted according to the child’s surgery status including children who:

• had their cataract surgery without any delay, (defined as surgery completed within three months from recognition of the condition)
• had been advised to undergo surgery but had not done so within a 3-month period.

Participants fulfilling the above two criteria were selected both from paying and non-paying patient categories at the participating hospitals. At each hospital location, 3 to 4 interviews were planned. Data saturation was reached when the data collection yields no new information about barriers and facilitators influencing access to cataract services. Saturation in interview studies is generally reached before 20 interviews. Hence, the target sample size for this study was 30 interviews with people whose children received cataract surgery [21].

Additionally, 5 home interviews were conducted with parents and carers, whose children were advised to undergo cataract surgery but had not done so. For these home interviews, two geographic locations were selected using purposive sampling to obtain different perspectives from rural and semi urban areas. This cohort was identified from hospital records and for practical reasons the families residing within 15 kms of the hospital were selected. Telephone enquiries were made to check their availability and their consent to participate in the interview. Based on the verbal consent the home visits were made, and written consent was obtained from each participant (parent or carer) before the actual interview.

Procedure

Data were collected from the participants between Nov 2015 and April 2016. All interviews were conducted in local languages (six different languages including Malayalam, Telegu, Hindi, Marathi, Bengali and Assamese) for the convenience of the participants to express their feelings openly during the discussion. Interviews were conducted in a separate room at the hospital to ensure privacy and to avoid any disturbances. Home interviews were conducted at pre-arranged appointments with the family according to their convenience.

The interviews were audio taped with prior consent for transcription. The first author, who led the data collection and analysis, is female, was born and raised in India and had worked in the field of rural eye care for several years and thus was able to understand the local context and cultural issues around it. The study was conducted as part of the author’s PhD research, and her preparation for the qualitative data collection in this study was gained as part of PhD training and in her prior role in community eye health research. The author established no prior relationship with the study participants.

To minimise the possibility of the first author’s ethno-racial background and cultural reflexivity influencing her interpretations of the data, a second author of United Kingdom origin also independently coded the transcripts.

All the hospital interviews and the home interviews were conducted by the principal researcher (SS) and a support staff member from the hospital. In most cases, the principal researcher was able to communicate with the participants in their first language. Only in two locations, Assamese and Bengali language interpreters with local community experience assisted with the interview. For each interview, the transcriber was also a translator if the interview was not in a language known to the principal researcher, providing an additional check of the interviewee’s meaning. Each interview began with an introduction by the researcher and the parents were reassured that the interview was confidential and would not affect their child’s treatment currently or in future.

Data coding and analysis

A verbatim transcript of each interview was prepared from the tape recording of the sessions and imported into NVivo 11 for data management and analysis [22]. Transcription of all audio tapes was conducted externally by an independent company, and the researcher reviewed the transcripts for accuracy and completeness. The researcher was present in all the in-depth interviews, so it was possible to cross check with the field notes of each interview to ensure transcription accuracy. However, no major changes were made to transcripts based on the researcher’s perception, retaining the participants’ meaning. To maintain anonymity, participants’ names were removed from transcripts. The researcher (SS) read all the 35 interview transcripts multiple times before coding the transcripts independently using the Theoretical Domain Framework (TDF).

Development of coding framework

Quotes representing factors that helped or encouraged the parents/ carers to access the services early were coded as ‘enablers’ and the quotes that were associated with factors contributing to surgical delay were coded as ‘barriers’. Every extracted statement was coded based on the 12 domains of TDF and its related component construct [10], either into one domain or into multiple domains. For example, one patient’s father stated: “We felt very sad. She is so young and she has got cataract! What would happen if we get her married? Problems can arise. So, without delay surgery should be done”. This was coded to both “Beliefs about consequences” (“what would happen…?”) and “Social Influences” (related to marriage “Problems can arise…”) domains.

Both deductive and inductive approaches were used to ensure all themes were coded [23]. As part of inductive analysis, the focus was on sifting and sorting the data to thematically synthesise and to identify key domains and key emerging issues under each identified domain. Two factors were used as “importance criteria” [15] to identify key domains which are likely to have the greatest influence on access to childhood cataract services.

1. The number of beliefs identified as barriers and enablers under each domain and elaboration (number of themes and sub themes) within each domain. The three domains with the most frequently identified beliefs are discussed in detail in the results section. A summary of domains and their prioritization is provided in S1 Table.
2. The expressed importance within each domain. This was primarily a qualitative judgement made by the researcher based on her perception during each in-depth interview conducted in this research. For example, a point offered spontaneously by the interviewee rather than in response to a topic guide question was considered to have higher expressed importance.

A sample of 20% of all interview transcripts were randomly picked and coded independently by another researcher (CS) to increase the validity of the coding.

Barriers to access of childhood cataract services

The three most important domains representing perceived barriers to childhood cataract services were found to be environmental context and resources, beliefs about consequences and social influences. Each of these are explained below, with examples.

Enablers to access of childhood cataract services

The three domains into which most of the enablers cited by participants fitted were ‘Social influences’, ‘beliefs about consequences’ and ‘motivation, goals and intention’.

Implications for policy and practice

One of the key findings from this study is that establishing community eye screening programs in rural areas can act as both a barrier and an enabler for accessing cataract services in children (S2 and S3 Tables). The qualitative interviews revealed that some parents were waiting for the community screening program to be organised in their vicinity to access free services for their children, despite being aware of the problem and the need for early surgery. The inability to pay for the surgical services mean that they wait for the screening camp to arrive in the villages. However, in case of surgical referrals from the community screening, the parents reported confident in accessing the referred facility as they were provided with all the details in the referral form given to them.

Although most carers accessed eye care centres after recognising the eye problem, a substantial minority chose to access traditional healers and other forms of care initially, potentially delaying the opportunities for optimal intervention. Previous research in developing countries about health seeking behaviour for childhood illness [25] has indicated that care seeking behaviour in resource poor settings is a hierarchical process, in which carers first seek inexpensive solutions before visiting a hospital. Cultural beliefs based on religion and superstition were found to be an important impediment in accessing surgical services.

Another important factor that influenced access to childhood cataract services in this study was the social support provided by family and relatives and the wider community as a source of information and guidance. Cataract surgery requires admission for a minimum of three days at the hospital and mostly these hospitals are located in major towns and cities. If the family has more than one child, the support system within the family becomes an important enabling factor for cataract surgery. Arrangements need to be made for a member (usually a grandparent) to look after the other siblings whilst the parents are away. Similarly, after surgery a support network is required to ensure good post-operative recovery and later follow-up in children.

Previous work suggests that any decisions regarding the child’s health and access to care are made at the household level and that these decisions are largely influenced by household factors such as parents’ educational and occupational exposures and mainly depend on the household income [26]. A similar pattern was observed in the present research. Also, parents-in-law played a major role in overall decision making in rural families and this is consistent with previous findings [27].

The present findings also indicate that the eye care professionals in rural areas and in smaller towns may give inappropriate advice to the parents about cataract surgery in children (S2 and S3 Tables). This would have caused delayed presentation for cataract surgery and is modifiable with continuous medical education programs to update the local practitioners’ knowledge in rural areas as they play a crucial role in timely referral to tertiary centres for surgical services.

Although Knowledge was not identified as one of the top three domains in this research, it is important to note that most of the participants were not aware of the specific issues regarding childhood cataract. However, the prior experience of the family related to adult cataract may have had a greater influence in the parent’s health-seeking behaviour. This finding contrasts with earlier studies, in which knowledge among the parents about children’s eye diseases was generally low but they were aware of cataract in children [28, 29]. This difference is due to the majority of the respondents in this study being from rural locations, where eye care service availability is very limited, whereas both previous studies were based on urban populations.

The findings of this research suggest that there are facilitators and barriers to childhood cataract services which are modifiable such as beliefs and consequences, social influences and knowledge, and this study is an important first step in establishing evidence as a basis for addressing issues on this topic. Further, this study has identified that there is a need to modify the health seeking behaviour of the parents and carers to address the issues related to childhood cataract services.

There are four steps involved in developing a theory informed implementaion intervention for achieving positive health seeking behaviour among the target population [17]. The first two of these involve identifying the specific behaviour and the target group and using the TDF approach to identify barriers and enablers that need to be addressed. Based on these two factors, the third step is to identify the intervention components that are feasible, relevant to the cultural context and defines the measures of behaviour change. This research has addressed the first two steps towards developing a theory information implementation. Based on the present finding this study has recommended various intervention functions using behavioural change wheel components of the COM-B model [18] to increase the timely uptake of cataract services in children Table 1. Programs implemented in wider communities should be developed that target specific behaviours that could bring changes in how childhood cataract and its treatment is perceived to increase the uptake of services by the communities. The impact of implementing such positive behavioural changes program in the community should be investigated using a robust experimental design.

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Table 1. Recommended intervention functions for increasing the timely uptake of childhood cataract services in India.

https://doi.org/10.1371/journal.pone.0261308.t001

Strengths and weakness of the study

This is the first study to look systematically at the barriers and enablers for childhood cataract services in India using the TDF to identify theoretical perspectives associated with the identified issues. The respondents included in this research were selected from nine different geographical regions in India with broad cross-cultural representation. Also, the participants included parents, carers and other family members chosen from rural, urban and remote hilly and tribal areas to cover a range of perspectives among families in these regions.

The in-depth interviews were conducted with the parents and carers who had already accessed the hospital for childhood cataract surgery. The reported barriers and enablers from this study are therefore relevant to the members of the community who have accessed the services. Ideally, barrier assessment should target those who have been unable to access services for their children’s cataract, and further study including this group is required to identify barriers that have proved impenetrable for some.

In this study a purposeful sampling method was used. This method is widely used in qualitative research for the identification and selection of information-rich cases with relevant experience and with availability and willingness to participate, and the ability to reflect on and communicate their experiences for the most effective use of limited resources. However, the challenge in using this sampling strategy is that the range of variation in a sample is often not known at the beginning of a study or may be incorrectly assumed [30]. However, maximum variant samples were used to obtain varied experiences in utilising the services.

All parents or carers bringing their child to each of the included hospitals were eligible for inclusion. Selection bias was therefore not introduced at the point of recruitment. The hospitals were selected, and our results may have differed if a different set of hospitals had been included.

Most of the interviews were conducted at the hospital premises, either at the time of admission for surgery or during the follow up care. The hospital environment and the presence of a member of hospital support staff may have had an influence, for example parents and carers may have felt obliged to give favourable answers thinking that their response would affect their child’s care. As part of the information provided to participants, they were assured that their participation in this research would not affect their child’s treatment at the hospital. However, it remains possible that responses were tempered by the hospital location and the presence of a hospital staff member, and that the use of a more neutral location without hospital staff may yield more barriers and enablers.

Another important limitation in this study is the involvement of language interpreters to facilitate the discussion in few locations. This has an inherent disadvantage on the flow and continuity of the discussion and may potentially impact on the interaction with the participants. The presence of an interpreters may have made participants less willing to voice any concerns. In addition, it is possible that the translation itself may have altered the meaning or emphasis in the participant’s words, and thus may have affected the results. However, the person engaged for transcribing the interviews, who was unrelated to this research were able to capture the exact information conveyed by the participants.

Data was initially analysed deductively, using the TDF to generate the framework for an inductive analysis that generated themes within TDF domains. ‘Whilst the TDF provides a useful and comprehensive theoretical approach to identifying influences on behaviour, if applied too rigidly there is a risk that non TDF-related participant perspectives could be missed. We attempted to reduce this risk by applying a more flexible inductive analytical approach to ensure that potential themes that could not be coded to the TDF were not lost.

Future research

Childhood cataract surgery requires long term follow up and achieving a good visual outcome after cataract surgery is likely to depend at least in part on the post-operative follow up care in children. Achieving maximum uptake of follow up care is a continuous challenge even in adults for any chronic conditions and it is considered more challenging in children. The present research was focused on access to services and additional research is needed to assess the barriers and enablers associated with the access to follow-up care post childhood cataract surgery in different regions.