Nobody Joked about me... It was my Feeling that now I am Functionally Impaired: A Qualitative Study Exploring the Aftermath of Traumatic Amputation on the Social Life of Lower Limb Amputees

Methods

A qualitative approach with a phenomenological research design was used to answer the research question. Qualitative research is based on the realities, experiences and viewpoints of the patients.^[12] Phenomenology is a popular approach in health sciences, as its philosophical underpinnings enable researchers to understand and value people’s unique experiences, and thus, it demonstrates empathy, which is a vital element of patient-centred care.^[14]

In-depth, semi-structured and face-to-face interviews of the participants were conducted with the help of a pre-validated tool. It consisted of a socio-demographic and clinical profile data sheet and an interview guide with open-ended questions. Semi-structured interview tool was validated by the experts in the field of orthopaedic surgery, nursing and psychology (5^th author).

Interviews were conducted in Hindi. Later, these were converted into English. The English translation was primarily done by the 1^st author and then later was checked by the second and third authors.

Interviews were conducted by 1^st author in a separate room attached to the clinic. The average time spent for each interview varied from 40 to 45 min. The interviews were audio recorded and transcribed verbatim. The audio recorder of a mobile phone was used for recording the verbatim of respondents, after taking their due permission. The audio recorder was already checked for the quality of voice during the pilot study.

In qualitative research, data are collected till redundancy.^[15] In the present study, saturation of data was reached after conducting 14 interviews. However, two more interviews were conducted.

Participant selection

A purposive sampling technique was used to recruit the participants. Inclusion criteria were patients undergone lower limb amputation due to trauma, attended the amputee clinic, and were willing to participate in the study. Exclusion criteria were patients having amputation due to other causes, for example, diabetes, peripheral vascular diseases, tumours, etc. Patients with known psychiatric problems or cognitive impairments were also excluded from the study. Total sixteen participants were interviewed using a questionnaire guide.

Study location

The study was conducted at the amputee clinic of a leading tertiary care hospital in North India.

Data analysis

The data were analysed using Colaizzi’s steps of data analysis. Colaizzi’s method of data analysis provides researchers with clear, logical and sequential steps that can be used in phenomenological research and increase the reliability and dependability of the results obtained. It allows researchers to reveal emergent themes and their interwoven relationships.^[14] Written and audiotaped descriptions from in-depth interviews were the source of data in this study. All the interviews were immediately typed and analysed word for word to avoid memory biases. Recorded interviews were listened to, and transcripts were read several times by the first three authors independently to avoid personal biases. Significant statements relevant to the phenomenon were taken from the recorded interviews. The text was divided into meaning units. Meaning units were extracted and labelled with codes. The codes were categorised into themes and subthemes according to their similarities and differences. A robust discussion was held among the first three authors unless a consensus was reached. To ensure trustworthiness, transcribed interviews were validated by respondents to ensure that it was in accordance with their experiences. In addition, the results were examined by all the authors. Ambiguity and drawbacks were discussed and analysed to maintain the compatibility of the extracted data.

Description of themes and sub-themes

Theme 1: Self-isolation (perceived social isolation)

Many researchers have highlighted social isolation after amputation. As per Thompson and Haran^[16] all the respondents reported social isolation in their study. Murray and Forshaw^[12] have revealed social withdrawal in amputees due to negative reactions from other people. Similar findings have been revealed in other studies wherein amputees tended to avoid social crowds due to unpleasant gazing by others.^[17-19] It has also been revealed that people with disabilities are treated differently by normal people, and they often have to face negative reactions from others, due to which they tend to avoid social contact.^[9]

In the present study, Most of the participants expressed that they did not face any negative reactions, comments or negative jokes from others. Chini and Boemer^[20] highlighted in a study that amputation was associated with the experience of stigma due to disability. Documented data in the present study revealed that instead of actual rejection from society, amputees had a fear of being rejected by others and also anxiety about facing society. These feelings were consistent with a study where Hamill et al.^[21] had discussed the process of self-stigmatisation in which social stigma is internalised by amputees; they had embarrassment and shame for their perceived abnormality. Horgan et al.^[9] reported that after amputation, one perceives oneself as functionally impaired and stigmatised. A similar finding was revealed in a study by Liu et al.^[22] where lower limb amputees expressed embarrassment that society would reject them due to their physical impairment. Most of the participants were not going outside at all, and they isolated themselves. A few of the participants were restricted to their beds. In the same study, it was reported by many participants that due to the fear of rejection from society, they were not willing to go out. Hence, in a nutshell, one of the important findings of the present study is that there is perceived social isolation (self-isolation) in amputees instead of actual social isolation by others in society, and it is so severe that some patients were even restricted to their beds only. Hence, need-based counselling at the acute stage and in-hospital mobilisation of the patient in the presence of experts is of utmost importance.

Theme 2: Support – The core of rehabilitation

Many studies have highlighted the importance of social support for adaptation after amputation. As per Horgan and MacLachlan^[9] there are two theories behind the mechanism through which positive adaptation is enhanced after amputation. One theory explained the direct positive effect of social support, and the second theory discussed the buffer effect of social support. The social support as one of the protective factors during adaptation to amputation, has also been highlighted in other studies.^[21,23] In the present study, most of the participants expressed the importance of support in their lives and also shared the importance of spouse, family, friends and peers in their journey of life after amputation.

Most of the participants considered their spouse as the most important person in the process of adjustment after amputation. A similar finding is highlighted in a study by Valizadeh et al.^[10] wherein one of the participants shared the prominent value of a spouse and expressed that the spouse was the most important supporter. Sahu et al.^[7] also revealed that one of the protective factors against major depression after amputation was the partner’s support. Some of the participants in the present study also expressed the importance of family in the process of rehabilitation and shared that after amputation, their family was more caring than earlier. The importance of family and friends’ support in the successful rehabilitation of amputation has been documented in the literature. Liu et al.^[22] have revealed the importance of encouragement and comfort from family and friends. Another study by Washington and Williams^[24] has also appreciated the positive effect of family and friends’ support and discussed its benefits in general adjustment after amputation. In a study by Senra et al.^[25] many participants expressed their satisfaction with family and friends’ support and also highlighted it as an important tool in the adjustment process. Murray and Forshaw^[12] also emphasised the positive benefits of social relationships, family and friends’ support in adaptation to the life of amputees.

In the present study, participants had mixed responses regarding the role of friends. Few participants expressed the positive support that they gained from friends, while some others shared the changed behaviours of their friends after amputation. The participants reported that despite the invaluable support gained from their family and friends, most of the participants reported that they knew that family and friends were their well-wishers and gave unconditional support, but still, they could not understand the inner pain of functional loss because they were all normal. In the present study, participants further expressed that they knew that all the health professionals were very educated and had rich experience in treating similar types of patients, but even then, they could not understand the pain of functional loss. This finding is consistent with a study by Murray and Forshaw^[12] where participants shared that their family and friends could not understand their feelings of being an amputee. The same findings were highlighted by Valizadeh et al.^[10] who emphasised the importance of peer support and also discussed the meaning of peer as a group of amputees in the study. Further, participants felt that the problems of the peer group were similar to their own, and problems faced in daily life could be easily understood by the peer group. Moreover, seeing people with similar defects acts as an effective aid in the process of adaptation. Sjödahl et al.^[17] reported that participants in their study highlighted that after meeting with persons having lower extremity amputation, they became more positive and faced problems more bravely. The same findings were supported by Liu et al.^[22] where participants shared that their sense of isolation and emotional distress was reduced through peer support, and they developed a new perspective toward life. A similar finding is highlighted by Srivastava and Chaudhury^[26] that the stress of being alone is reduced after meeting with other amputees. In another study, visits from other amputees encouraged them that they would also be independent like them in the future.^[23] The findings of the present study also revealed that apart from Spirituality-A major factor in Indian culture the invaluable support from their families, friends and hospital staff, the amputee’s support group is the need of the hour.

Theme 3: Spirituality – A major factor in Indian culture

India is a large nation with a significant number of people having disabilities.^[27,28] Sources of emotional support in India are distinct from the Western world. In the present study, participants from every religion were there. Regardless of the religion they belong to, the term God was frequently used by study participants. Despite all of their sufferings, 37.5% of participants were thanking God for saving their lives. They expressed their belief that after such a major accident, they were saved due to the grace of God only. Rybarczyk et al.^[29] discussed that spirituality had started to be recognised as an important factor in adjustment to chronic illness and disability. As per Issac et al.,^[30] spirituality is an important factor as a characteristic of cultural identity in affecting the health care decisions of patients. Furthermore, if spirituality were recognised as a feature of a patient’s cultural identity, it would ultimately help practitioners in rendering holistic, culturally competent, patient-centred and ultimately good clinical care. In the present study, spirituality emerged as a major factor in the Indian scenario. Hence, while rendering holistic care to the amputees, custom-tailored and need-based spiritual support can act as an important supportive factor.

Participants in the present study had expressed trust in the existence of God, and they considered God as a supreme power capable of controlling destiny. The core of rehabilitation, Participants in the present study expressed that they had not done anything bad; why did it happen to them only...?

Being a part of a support group would enable the amputee to realise that it had not happened to him only; people with the same and even worse conditions are there. Support groups can have a triad positive effect on the rehabilitation of amputees; first, meeting with persons with the same problem would ensure them that they are not the only sufferers in the world and that successful rehabilitation is still possible. Second, when they see amputees who have even major or higher levels of amputation, it would act as a downward comparison for them, and they would feel themselves in a better condition. Third, meeting with an amputee who is successfully rehabilitated would enable the amputees to do an upward comparison and take him as their role model, which ultimately would give them positive reinforcement for the successful rehabilitation of self.

Rigour of the study

We adopted various strategies to magnify the trustworthiness and rigour of the study findings. The consolidated criteria for reporting qualitative research (COREQ) were followed throughout the research process. Trustworthiness and rigour were established through the assurance of dependability, confirmability and credibility. Dependability was achieved using a single data collection process for all participants. Moreover, the whole research process involved the entire research group, from the development of research questions, interview guide, transcription of data, analysis and discussion of findings. Confirmability was assured as data were checked and rechecked throughout the research process by all the authors. Credibility was achieved by an iterative review process among the authors of the research team, by sharing data within the research group and achieving an agreement on themes and findings together. The first three authors met regularly to perform the initial coding, with the fourth, fifth and sixth authors reviewing this process. The average time spent for each interview varied from 40 to 45 min. Spending persistent time with the participants for 40–45 minutes during interviews provides enough time for developing a trusting relationship with them that ultimately promotes the sharing of varied experiences and increases the credibility of the findings. To ensure trustworthiness, transcribed interviews were validated by respondents to ensure that it was in accordance with their experiences. A robust discussion was held among the authors of the research team regarding areas of concurrence and disagreement.