Background: Non-adherence to treatment is common and costly. Outside western culture little is known about the reasons for non-adherence with physiotherapy. This qualitative, grounded theory, focus group study investigated physiotherapists’ perception of the factors affecting non-adherence of patients to physiotherapy treatment in India.
Method: Six practising physiotherapists from New Delhi, India, formed a focus group and were invited to discuss their views regarding factors influencing patient non-adherence and their strategies to cope with these factors. The dialogue was transcribed and analysed. Significant statements/ words describing non-adherence were identified and clusters of meaning developed and used to write a composite, thematic description presenting the essence of the discussion.
Results: The major factors identified were: poor awareness of physiotherapy and poor infrastructure, time, economic factors, social and cultural factors and poor communication. Patient and family education formed the basis for many of the strategies identified by physiotherapist to help them manage non-adherence.
Conclusion: Physiotherapists in India recognise some barriers to adherence and have strategies that they perceive as helpful in encouraging motivation that are unique to the Indian social context. Other barriers to adherence and strategies recognised as key to improving adherence in western countries were not recognised by this group.
Adherence has been described as “the extent to which a person’s behaviour corresponds with agreed recommendations from a healthcare provider” (WHO 2003). In Western countries non-adherence with treatment recommendations is a problem across all health care disciplines including physiotherapy (Vasey 1990; Friedrich et al 1998; Campbell et al 2001). For example, only two-thirds of patients were adherent with short-term exercise recommendations (Sluijs et al 1993) and this may be worse for long-term treatment recommendations and unsupervised home-based exercise programmes (Reilly et al 1989; Sluijs et al 1993; Nelson et al 1995). The extent of non-adherence in the Indian population is not known.
There may be many reasons for patient non-adherence. For example, low levels of physical activity, low in-treatment adherence with exercise, low self-efficacy, depression, anxiety, helplessness, poor social support, greater number of perceived barriers to exercise and increased pain levels during exercise are barriers to treatment adherence (Jack et al 2010). It is also possible that cultural and societal differences will impact upon adherence. One study found that ethnicity was an inconsistent predictor of attendance at an exercise programme or continued exercising post-treatment in subjects with OA knee (Rejeski et al 1997). Ethnicity may also influence attitudes, beliefs and behaviour around pathology or physical activity. For example, the Chinese display more negative beliefs regarding future consequences of back pain and more fear avoidant beliefs toward being physically active with back pain compared with white Australians (Burnett et al 2009). Asian women are also less likely to take regular exercise than White or Afro-Caribbean women (Lip et al 1996). Consequently Asian women may be less likely to adhere with treatment recommendations which encourage increased levels of exercise or physical activity.
The role of ethnicity and culture in non-adherence are important areas for investigation. Increasing understanding of these issues could help physiotherapists consider how ethnicity and culture might influence adherence within their own practice The aim of this study was to investigate physiotherapist’s perception about factors influencing non-adherence in patients attending for treatment in musculoskeletal physiotherapy outpatient departments in India.
Qualitative methods using a grounded theory approach was used in this study. A focus group of physiotherapists with experience of treating patients with musculoskeletal disorders was used to obtain information regarding perceptions of the factors influencing patient non-adherence. The physiotherapist’s views were collated and recurring themes identified. Ethical approval was obtained from the Dissertation Management Group at Sheffield Hallam University.
Setting and recruitment
The venue for this study was a hospital in Delhi. Physiotherapists from different hospitals and clinics across Delhi were invited to participate in the study using information sheets sent via e-mail. Potential participants were provided with the date, time and venue of the focus group. Prior to the study taking place participants had an opportunity to ask questions about the study. Participating physiotherapists were assured of confidentiality before the start of the focus group. Those who agreed to participate signed a consent form, prior to the commencement of the focus group.
Because of time constraints, convenience sampling was used to identify suitable physiotherapists. Physiotherapists were considered suitable for the study if they worked in an outpatient department treating patients with musculoskeletal disorders, had a minimum of three years work experience and were fluent English speakers. Physiotherapists were not considered suitable for this study if they worked on wards or ICU’s, had less than three years of work experience or had no experience in an outpatient department. This method of sampling provides access to practising physiotherapists dealing with non-adherence on a daily basis, thus providing useful insights into the role of Indian culture and society on non-adherence. Since this was a focus group design the number of participants was limited to six to enable effective data analysis.
A pilot study was conducted at Sheffield Hallam University, UK to develop the interviewing guide shown in Table 1. Participants in the pilot study were physiotherapists studying for a Masters degree in Applying Physiotherapy; these physiotherapists may not have met all the criteria to participate in the study, but were able to offer some insights into the study aims. Table 1 Focus group interviewing guide
Have you all come across patients who do not seem to follow your prescribed treatment? There could be various ways in which they do not adhere. Can we name a few?
What in your thinking are the reasons that act as barriers to adherence?
What in your thinking are the motivational factors that enhance adherence, if any?
What are the strategies that you think help in dealing with patients to help them adhere to your prescribed treatment?
What do you think can be done to avoid patients from going into non adherence in the first place?
Table 1 Focus group interviewing guide
In the main study one of the authors (KM) facilitated the focus group. In order not to lead participants views she did not contribute any ideas to the discussion. The participants and researcher sat around a table in full view of one another and were asked to express their opinions one at a time to ensure clarity of the information collected. The interviewing guide was used to direct the discussion as required. Information was collected about physiotherapists’ perceptions regarding factors affecting patient non-adherence and the strategies they would recommend to facilitate adherence.
Two recorders were used to collect data during the discussion in case of technical faults. The facilitator made field notes during the session. No moderators or extra observers were used which may have limited data collection, since there was no observation of non-verbal language, tone of voice etc which may have conveyed additional meaning to the data collected. The data was transcribed by the primary author (KM).
Data analysis Interview transcripts and field notes were analysed by the primary author (KM) in four stages: 1) a thorough reading of the transcribed data was conducted to gain a sense of the overall meaning, 2) significant statements/sentences/words that described the factors influencing non-adherence were highlighted, 3) clusters of meaning were developed from significant statements into themes, 4) a composite description of each theme was collated in order to further explore and discuss inferences of the themes. Due to study constraints only one researcher was used to transcribe and analyse data, which could lead to inconsistencies in the interpretation of the data.
The primary researcher (KM) is from the same race, cultural background and originating city as the study participants. This may have helped the participants to discuss their perceptions more openly. Simultaneously, this may also have helped the primary researcher to identify with and interpret the participants’ views and accurately reflect the reported factors and strategies.
At the beginning of the study, the primary researcher had little experience of dealing with non- adherent patients and low understanding of the extent of non-adherence and the factors which might influence it. During the course of the study, the literature related to non-adherence was reviewed leading to the researcher acknowledging the various issues related to non-adherence and developing a deeper insight into the problems encountered by physiotherapists in her home country of India. All care was taken to ensure that the researchers’ views did not influence the participants or discussion. All inference drawn from the data are presented with supporting evidence where possible.
Of the six participants, four had more than five years of experience. Of these one had more than 20 years of experience in various Government/private/semi-private hospitals and clinics, the other had more than 30 years of clinical experience. Two participants were male and four were female.
Six main themes emerged from the discussion.
Poor awareness of physiotherapy and poor infrastructure
Poor awareness of physiotherapy was identified as a barrier to patient’ attendance by most participants. Many people are not aware of physiotherapy centres in their locality or are not aware of the aim of physiotherapy to bring about independence for patients and their families. Many people seem unaware of treatment strategies which might be helpful for their conditions. The majority of the population seem to be unaware of various government schemes to help the less affluent to access physiotherapy; this was attributed to high rates of illiteracy in India where only a small section of the urban population are educated and equipped sufficiently to find out information about their condition. Participants perceived that the Government and doctors, who play an important role in patient education, may also have an important role in creating awareness about the availability and benefits of physiotherapy. Patient information should be accessible and comprehensible to the population with low literacy.
Inadequate public transport, lack of disabled-friendly infrastructure and low prioritisation for improved infrastructure by Government was identified as hindering access to physiotherapy and other medical amenities. Many unauthorised residential colonies with narrow lanes cause difficulty for vehicle access creating potential problems for accessing physiotherapy clinics. Even where patients have undergone rigorous physiotherapy allowing, for example, independent mobility using a wheelchair, poor access may mean that patients may not be able to enjoy their life in a wheelchair and this may discourage patients from undergoing further physiotherapy.
Participant identified that the role of educating patients and families regarding the promotion of independence was particularly important in the Indian culture where dependency on family is high.
Participants agreed that physiotherapy is time consuming and that patients need to alter their daily routine or take time from work, family or social obligations to attend the department for treatment which may be difficult for many patients. It was suggested that domiciliary physiotherapy might ease some of these issues, though it was agreed that this would be an excessive financial burden on the health sector. The addition of more home-based programs could allow patients to reduce some of the time required for attending treatment.
It was also recognised that patients have a tendency to forget their exercises, though the use of charts/diagrams may help them remember their exercises. Another solution proposed was encouraging “goal-oriented” exercises such as giving an Indian woman functional tasks of rolling dough balls with a pin so that she can see for herself any improvement. It was suggested that patients also need to be well informed and involved in the treatment planning to allow flexibility in the treatment process and increase their confidence in treatment.
Participants identified that since much of India is below the poverty level, economic factors may act as a barrier to attending physiotherapy. For most patients physiotherapy treatment is not covered by insurance and cheaper alternatives are often sought. The participants suggested that increasing awareness about Government schemes and introducing home-based exercise, domiciliary physiotherapy or physiotherapy assistants might help to tackle issues of cost.
Social and cultural factors
Family obligations were identified as another barrier to treatment. One example was that because of love and concern, help is available within the family, which may prevent a patient from doing even simple tasks for themselves. This may encourage dependency and maintain disability. Many cultural barriers were also identified. For example, the participants described the prevalence of the “purdah” system in many parts of India whereby the daughter-in-law stays under a veil and is bound so deeply by her daily chores that her need for physiotherapy is not considered a priority because the money spent does not represent good value. This may prevent many women having access to physiotherapy, and at times other basic medical amenities. This barrier was thought to be changing, but change of this kind and the “up-lifting” of women in the family may take time.
Another cultural barrier identified was the “stigma” attached to disability by society and the popular belief that a person suffers from disabilities because of past “karma”. Patients often admit to visiting “saints” and “babas” who promise them cure to help them get back to normal quickly. One participant suggested that this was due to “lack of patience in patients”. Such deep-seated cultural beliefs are beyond the scope of a single profession such as physiotherapy. Participants suggested that a greater effort on the part of all medical professions and Government and non-Government agencies is required to address social and cultural barriers which are unhelpful for the health of sectors of the population.
Poor communication was identified by all participants as a barrier to adherence with communication gaps or poor relationships sometimes existing between therapist and patient or between therapist and referring doctor. This may arise in part due to language, social or intellectual differences. Most participants identified that many GPs do not acknowledge physiotherapy. Those GPs that do may enforce their own treatment plans. Consequently therapists may be unwilling or unable to change doctors’ recommendations and continue the treatment programme without regard for treatment outcome. This may influence patients who may then be unwilling to deviate from the GP recommended protocol thus creating strains on the patient-therapist relationship. Some participants suggested that this scenario may be changing and that therapists are getting better at communicating with doctors and supporting changes in treatment with evidence.
Physiotherapists often have different professional approaches which can create confusion for patients. For example, if the patient sees five different therapists, he may find five different treatment approaches. They justified this variation by adding that an individual therapist’s clinical experience and perception of the condition may cause them to deviate from following a fixed protocol. They identified that variations in practice could also be due to poor or inconsistent standards of education in practice. Standardisation and regulation of education and practice may be beneficial to ensure equity of care. Participants suggested that treatment recommendations also need to be justified to the patients to provide a credible intervention and build more trust in the profession.
This study examined the perceptions of Indian Physiotherapists about factors influencing adherence of patients to physiotherapy treatment. Some barriers were identified which may be common to patients of all nationalities. Other barriers were identified which may be specific to India.
Forgetfulness, time and treatment cost were identified in this study as barriers to poor adherence with physiotherapy treatment. Cost of treatment was also identified as a reason for non-adherence in patients attending private physiotherapy practices in Holland (Sluijs et al 1993) and the USA (Alexandre et al 2002), though it is likely to be a variable barrier depending on how physiotherapy is funded in different countries. Time issues associated with work or family commitments and forgetfulness have also been identified by Spanish (Medina-Mirapeix et al 2009), British (Campbell et al 2001), American (Alexandre et al 2002) and Dutch patients (Sluijs et al 1993).Some suggestions for alleviating the cost of physiotherapy and improving uptake of physiotherapy in India were to ensure that patients have self-management strategies for continuation at home. However previous studies have also observed that asking patients to adhere with home-based exercise can be problematic (Reilly et al 1989; Nelson et al 1995). In particular Asian women may be less likely to take regular exercise than White or Afro-Caribbean women (Lip et al 1996) and therefore less ready to adhere with treatment recommendations which encourage increased levels of exercise or physical activity (Jack et al 2010). A particular problem emerges for women who, because of family obligations or the presence of the “purdah” system, may be prevented from participating in physiotherapy or from undertaking rehabilitative exercises. At this time, reaching such women may present a great challenge which is beyond the scope of the physiotherapy profession. However, for many patients, it may be helpful to reinforce evidence that chronic pain patients who adhere with exercise therapy can achieve reduction in symptoms (Guzman et al 2002), improve function and return to work (van Tulder et al 2000). It may also be helpful to ensure that advice and home-based treatment recommendations are credible, fit with the patients daily activities, alleviate symptoms or problems which are important to the patient (Campbell et al 2003), do not exacerbate pain (Jack et al 2010) and are interesting and enjoyable (Sluijs et al 1993).
Physiotherapist in this study identified a variety of issues which as far as we are aware have not previously been identified as barriers to adherence. Various social and cultural factors, such as the familial obligations of many Indian women, bonds within the family, the stigma of disability, a belief in other forms of alternative treatment may be unique to certain Asian cultures. This may be true whether resident in India or not; given the deep-seated beliefs of such factors they may be present and act as a barrier to physiotherapy wherever in the world these ethnic groups reside. The role of ethnicity as a barrier to adherence is an area which requires further investigation in USA and Europe, which have large Asian populations. Within multi-cultural countries such as UK and USA adherence issues may vary with ethnicity. For example an American study found that after adjusting for educational attainment, the use of communication booklets were found to be more effective for achieving effective communication and adherence in the white population compared with the non-white population (Post et al 2001), suggesting that mode of communication of treatment recommendations may be an important consideration in areas where multicultural populations co-exist.
Physiotherapists also identified that inter-professional communication was a potential threat to adherence. As far as we know, this has not previously been identified as a threat to adherence. However poor inter-professional communication may lead to poor inter-professional working, poor understanding of the capabilities of other groups of health professionals and consequently ineffective delivery of healthcare programmes such as physiotherapy (Rushmer and Pallis 2003). In addition, under the Medical Council Act (1956) physiotherapists in India work under medical direction. More recently the Paramedical and Physiotherapy Central Council Bill (2007) refused approaches made by the Indian Association of Physiotherapists to grant permission to remove the words ‘medical direction’ from the definition of Physiotherapy practice, thereby preventing professional autonomy. The issues that have emerged in this study indicate that some Indian physiotherapists may be moving towards autonomous thinking. This may present as a problem in organisations such as the Indian Health Service which has a hierarchical structure and where any attempts to flatten out that hierarchy may represent a perceived threat to power and influence of some health professionals (Rushmer and Pallis 2003).
Several factors identified in the adherence literature were not advanced by the physiotherapists in this study. For example the impact of a variety of patient related psychological and socio-demographic factors were not discussed. Previouslow levels of physical activity, low in-treatment adherence with exercise, low self-efficacy, depression, anxiety, helplessness, poor social support, greater number of perceived barriers to exercise and increased pain levels during exercise are all barriers to treatment adherence (Jack et al 2010). This may be due to a lack of biopsychosocial health education within the undergraduate curriculum in India, though their relevance to Indian society has not yet been established. The credibility and effectiveness of advice/treatment/exercise have been identified as important issues which may influence whether patients adhere to treatment recommendations (Sluijs et al 1993; Campbell et al 2001; Medina-Mirapeix et al 2009). Being aware of all the possible reasons why patients may not adhere to treatment recommendations may help therapists to carefully enquire about the kinds of problems patients are experiencing, help patients to resolve their difficulties and facilitate greater treatment adherence (Sluijs et al 1993).
The disadvantage of using a single focus group is that saturation may not be reached i.e. physiotherapists in this focus group may not have identified all possible factors perceived as contributing to patient’ non-adherence. The addition of follow-up focus groups may have allowed fuller exploration of emergent issues.
The physiotherapists’ perception of barriers to patient adherence may be different from those expressed by patients or identified by quantitative research. Therefore this study provides a perspective on the construct of adherence. At the same time, this study provides an insight into the issues encountered by Indian physiotherapists and possibly the limited understanding which physiotherapists may have about a topic which is highly complex, under-researched and difficult to address.
This study investigated adherence in its widest sense. Within physiotherapy, the concept of adherence is multi-dimensional (Kolt et al 2007) and could relate to attendance at appointments, following advice, undertaking prescribed exercises, frequency of undertaking prescribed exercise, correct performance of exercises or doing more or less than advised. The barriers to each aspect of adherence may be different. Future research should consider adherence in relation to a single dimension e.g. why patients do not attend appointments etc.
This study has identified several factors surrounding non-adherence/non-attendance to physiotherapy in India. All of these factors are worthy of further investigation. More detailed qualitative studies investigating the views of physiotherapists and patients across the globe would enhance our understanding of racial, cultural or societal perspectives which have to date been minimally investigated and which may need to be considered in order to enhance treatment adherence and effectiveness.
This is the first study of its kind investigating Indian physiotherapists’ perspective for why patients find it difficult to adhere to physiotherapy recommendations. Factors were identified which appear to be common to all nations e.g. forgetfulness, time and cost of treatment. Factors were identified which may be unique to India and to date have not been identified in western cultures e.g. the familial obligations of many Indian women, bonds within the family, the stigma of disability, a belief in other forms of alternative treatment unique to Indian culture. However many psychological and sociodemographic factors e.g. anxiety or low levels of activity, were not identified indicating that physiotherapists may not be aware of all the potential barriers which may prevent patients from adhering with treatment recommendations.
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