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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
*Corresponding author: Rashi Sharma, Department of Orthopedics, Nursing Officer, PGIMER, Chandigarh, India. rashisharmaangel@gmail.com
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Received: ,
Accepted: ,
How to cite this article: Sharma R, Kaur S, Shruti S, Saini UC, Kaur J, Dhillon MS. 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. Indian J Palliat Care. doi: 10.25259/IJPC_370_2024
Abstract
Objectives:
A human being is a social animal, and social interactions are pivotal in his life. After traumatic amputation, a normal and able human being becomes disabled for the rest of his entire life. Despite affecting all aspects of life, this unanticipated disability results in undeniable effects on the social relationships and social behaviour of the person. This qualitative study was conducted to explore the aftermath of traumatic amputation on the social lives of lower limb amputees.
Materials and Methods:
A qualitative approach with a phenomenological research design was employed. The study was conducted at an amputee clinic of a leading tertiary care hospital in North India. A purposive sampling technique was used to recruit the participants who had undergone lower limb amputation due to trauma and were attending an amputee clinic for their follow-ups. We conducted 16 in-depth, face-to-face interviews using a pre-validated interview guide until we reached data saturation.
Results:
Data were analysed using the Colaizzi method of thematic analysis, and three main themes emerged: (a) self-isolation (perceived social isolation); (b) support – the core of rehabilitation and (c) spirituality – a major factor in Indian culture.
Conclusion:
The findings highlighted that there is a perceived social isolation in amputees instead of actual social isolation by others in society. The study revealed spiritual support as a substantial supportive factor for the holistic rehabilitation of lower limb amputees, specifically in countries with spiritually rich traditions like India. Need-based counselling in the acute stage, family-centred care and support group intervention are the key factors for the comprehensive rehabilitation of lower limb amputees.
Keywords
Lower limb amputees
Qualitative study
Social life
Traumatic amputation
INTRODUCTION
Amputation brings permanent disability and inevitable change in an amputee’s life.[1] It affects each dimension of an individual’s life.[2] It is estimated that in 2005, around 1.6 million individuals were living as amputees in the United States, which is likely to increase to 3.6 million by the year 2050.[3] In India, over half a million individuals with amputations are there, and tens of thousands are being added to this population each year.[4]
One of the leading causes of amputations in developing countries is trauma.[5] Limb loss due to trauma may lead to disability, and the person may become functionally impaired for the rest of his entire life.[6] Amputation due to trauma is compared with the loss of a spouse, loss of one’s perception of wholeness, symbolic castration and death by many researchers.[7]
A human being is a social animal, and social interactions are pivotal in an individual’s life.[8] Despite affecting all aspects of life, this unanticipated disability after amputation results in undeniable effects on the social relationships and social behaviour of the person. An amputation may affect a person’s ability to participate in social activities as they did earlier. Structural and functional limitations in the body that come with amputation affect the activity level and lead to decreased participation of the individual in society.[1] The perceived social stigma of being an amputee and social discomfort may result in reduced physical and social activities in an amputee as a direct consequence or may affect them indirectly.[9] The people with amputation feel socially isolated, and sometimes, it may lead to the development of abnormal behaviour such as alcoholism, substance abuse and drug addiction.[10] Many researchers have highlighted that increased social isolation leads to poor quality of life and a higher level of depression.[9]
Over the last few years, evidence-based protocols have been established to lay out guidelines for the clinical care, treatment and rehabilitation of lower-limb amputees. Nevertheless, patient perspectives are sparsely illustrated in these protocols.[11] Quantitative approaches involve the measurement of key variables at particular intervals of time, which attributes statistical relationships and presents a static view of these variables.[12] Moreover, it is merely possible to understand the patient’s emotions, needs and major challenges faced by him in the form of mathematical formulas.[10] In response to this limitation of quantitative approaches, health and disability researchers have begun to use qualitative research methods to identify the meaning of ill health and disability from the point of view of those who bear the suffering.[12] These approaches seek to comprehend a given problem from the viewpoint of the concerned people and provide an in-depth understanding of a person’s feelings, emotions, needs and beliefs; how he perceives the disease; and what the major challenges faced by him are.[13] By including patients’ perspectives in clinical guidelines, patient-centred treatment, care, and rehabilitation are more likely to be planned and delivered based on scientific evidence and patients’ priorities.[11] As part of a move to involve patients or service users in the planning and development of their healthcare, qualitative approaches have the potential to make a strong contribution to the design, organisation and delivery of health rehabilitation services that meet the needs of this population.[12]
Hence, information regarding how the patients perceive amputation and their major challenges would help to develop need-based protocols for them. This would also help to sensitise the healthcare providers regarding the concerns of the patients while providing care to them. It has been suggested to conduct more longitudinal and qualitative research to address various concerns of the amputees.[9] There is a paucity of data in India regarding the consequences of traumatic amputation on the social life of lower limb amputees. Hence, this qualitative study was conducted for a deeper understanding of the phenomenon and the lived experiences of the lower limb amputees.
MATERIALS AND METHODS
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 (5th author).
Interviews were conducted in Hindi. Later, these were converted into English. The English translation was primarily done by the 1st author and then later was checked by the second and third authors.
Interviews were conducted by 1st 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.
RESULTS
After data analysis, three main themes emerged from the lived experiences of the participants, as depicted in Table 1:
S. No. | Themes | Subthemes |
---|---|---|
1. | Self-isolation (perceived social isolation) | A. Perceived social stigma B. Fewer social visits C. Bed is a new and safer world |
2. | Support-The core of rehabilitation | A. Spouse-The biggest support B. Family-A strong pillar C. Positive and negative reactions of friends D. Inner pain cannot be understood by a normal person-the compelling need for support group intervention |
3. | Spirituality-A major factor in Indian culture | A. Thanking god for saving life B. Asking god –why me only |
Description of themes and sub-themes
Theme 1: Self-isolation (perceived social isolation)
One of the major themes extracted after data analysis in the present study is self-isolation (perceived social isolation) due to the feeling of self-stigma of being functionally impaired, instead of actual social isolation by others in society.
Perceived social stigma
Participants in the study reported that they did not face any negative comments or jokes from others instead, they were having feelings of self-stigmatisation of being functionally impaired.
‘Nobody joked about me’ why should I lie...all were aware that I had met with an accident...it was my feeling that now I am functionally impaired’. (Participant 10)
One of the participants verbalised his fear that now, after being functionally impaired, he will have to face society. ‘I felt it as a drastic change...it was tough to accept, what would people say about me...how I would reply to them.and how to face others...now I was functionally impaired...not the same as earlier...’ (Participant 13)
Fewer social visits
One of the participants in the present study said that after amputation, he was not interested in going out anywhere and wanted to remain in his home only because of the fear of facing society.
‘Didn’t go anywhere... After meeting with this accident, I am at home only... Sometimes when I think of going outside, suddenly bad thoughts come around me about what people would say... Now I prefer to be at home.’ (Participant 3)
One of the participants in the study reported that he did not even attend the marriage of his cousin’s sister because he was not feeling good after being an amputee.
‘My cousin sister was getting married...she was my age, mate... we were having very good bonding...she called me several times that you would have to come... But I didn’t go…. Even I was not picking up her call because I was not able to explain to her that if one is not feeling good from inside, how could he go outside to attend functions and marriages?’ (Participant 4)
Bed is a new and safer world
Participants verbalised that after amputation, they felt safer in bed as compared to walking with crutches.
‘I don’t feel functionally impaired until I am in bed...but whenever I try to take a step out from my bed, it reminds me that I can’t walk without crutches... I felt so bad at that time... I can’t explain that inner pain… I was all right earlier. and now I don’t have my leg... So most of the time I prefer to lie in bed’. (Participant 2)
‘There is no routine now... I spend my whole day in bed either watching my mobile or remembering my old days… I feel safe on it...now it’s the only world for me’. (Participant 13)
Theme 2: Support – The core of rehabilitation
In the present study, most of the participants expressed the importance of having some support in their lives and considered it an important part of adjusting to life after amputation.
Spouse – The biggest support
Participants verbalised about the unconditional support of their wives.
‘The biggest support was my wife...even I used to get angry with her...many times cried like kids in front of her...but she was beside me in every situation.’ (Participant 2)
‘I was all right... Suddenly I met with an accident... I was not able to earn now... It was tough to manage the household expenses... Nothing would be possible without the support of my wife... She started to work as a labourer... She was earning and also looking after me... I don’t know what would happen to me and my children if she were not there.’ (Participant 5) ‘My wife understands me without saying a single word...and she always supports me...she is very caring for me.’ (Participant 11)
Family – A strong pillar
As per the participants’ responses, the support of their families was also a vital factor in their lives after amputation, and their families were even more caring than earlier.
‘My family takes care of me…even more than earlier…. Earlier they used to get angry sometimes, but now they listen to every single word of mine. My mobile phone went out of order. Before amputation, they always used to scold me for using my phone. I thought that they would not repair it, but they repaired it the very next day.’ (Participant 1)
‘Whole of my family is very caring... Before amputation, I was earning, but my brother was not... He was very careless and liked to roam around...but after my accident, he has started working.he cared for me also...earlier my parents used to refuse me for certain things...but now they fulfil all my demands...all have become very caring.’ (Participant 4)
Positive and negative reactions of friends
In the present study, participants verbalised mixed responses about their friend’s behaviour. Few of them expressed the changed behaviour of their friends after amputation, whereas a few talked about the supportive nature of their friends.
‘Those friends who used to walk shoulder to shoulder with me, today they are not willing to talk to me...those who used to sit and eat with me, they turned the dice on seeing my time today... Hey God, please do not show this kind of time to anyone...’ (Participant 1)
‘Yes, there is a big change...now friends even don’t pick up my calls...perhaps they might be afraid that I should not borrow money from them...’ (Participant 2)
‘I have good friends...they used to call me regularly...one of my friends was there with me at the hospital also...others are also good.’ (Participant 10)
Inner pain cannot be understood by the normal person: Compelling need for a support group
As per the verbalisation of the study participants, despite the unconditional support of their family and friends, it is not easy to understand the suffering and pain of disability by a normal person.
‘Whenever somebody came to console me, they used to say not to lose hope…it had already happened… Then I always used to think that they wouldn’t understand the pain of a person who is normal one day and the next day becomes functionally impaired for the rest of his whole life… No, a normal person can’t understand…’ (Participant 1)
‘My whole family, all relatives, console me that do this, do that… But they don’t know how tough it is… because they have not gone through this suffering, so they won’t be able to feel my pain.’ (Participant 2)
‘All were consoling me at the hospital also… My family is also saying that I should listen to hospital staff…they know everything… Yes, I agree that hospital staff are very educated… They look after such patients daily, but even then, they can’t understand my pain. because they are not functionally impaired…this could be understood only by me….’ (Participant 15)
Theme 3: Spirituality: A major factor in Indian culture.
In the present study, spirituality also emerged as an important factor in the Indian scenario.
Thanking god for saving the life
Participants expressed a thankful attitude towards God and considered God as a supreme power who saved them even after such a major accident.
‘The moment when I met with the train accident, I thought I would not be alive... Even after losing my leg, I reached the nearby road by crawling... If God had not been there with me, I would have died.’ (Participant- 5)
‘There were 2 more persons along with me...both died at the site of the accident... I also fainted...never thought I would be alive...after meeting with such a bad accident, I am still alive... it’s the grace of God only.’ (Participant-6)
Asking god – Why me only?
The participants verbalised the importance of karma and were complaining to God about why amputation happened to them only.
‘I have heard since my childhood that we have to pay for our bad deeds... I have never done anything bad in my life...then, hey God, why did I get such a kind of fruit?’ (Participant 1)
“There are other people of my age around me...my friends are also there... Whenever I see them walking properly, I always think, ‘Hey God, why did you give this suffering to me only?” (Participant 2)
DISCUSSION
Amputation is an irreversible and harsh shock in an individual’s life. The loss of body parts due to trauma is sudden and emotionally disastrous. To meet the challenges faced by amputees, there is a need for a deeper understanding of the consequences of limb loss from the perspective of the person who bears it. The present study aimed to explore the consequences of traumatic amputation on the social life of lower limb amputees in the Indian setting. A total of 16 patients (till saturation of data) were enrolled in the study. The data from this study documented that amputation had affected their social life very badly and impaired their role functions in the family and society. Most of the participants verbalised the importance of the support of their families and friends in the acceptance of amputation and recovery from the trauma of amputation.
After data analysis, various themes and subthemes were prepared based on statements given by the participants. The various themes are discussed as follows:
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.
CONCLUSION
One of the major findings of the present study is that there is perceived social isolation (self-isolation) in amputees instead of social isolation by others in society. Hence, there is a need for timely professional support in the form of counselling in the acute stage, along with ongoing support during the process of rehabilitation. Amputees need to understand that the loss of one body part is not the end of life. Life is still possible, and they are not functionally impaired but differently abled to lessen the feeling of self-stigmatisation. The findings of the study highlighted the importance of support in the form of spouses, family and friends in the rehabilitation of amputees. Hence, it calls for the inclusion of family and caregivers, or we can say the adoption of family-centred care in the process of rehabilitation after amputation. The study highlighted spirituality as a major factor in Indian culture. Hence, spiritual support can act as a substantial supportive factor in the holistic rehabilitation of amputees, specifically in countries like India with spiritually rich traditions. This would also help to sensitise the healthcare providers regarding the concerns of the patients and to demonstrate empathy, a vital element of patient-centred care. Despite adequate professional support and support from caregivers, the support group is an evidence-based intervention, which is an emergent need in the overall successful rehabilitation of amputees.
Acknowledgment:
The researchers thank all the study participants for their active participation.
Data availability statement:
The datasets generated during and/or analysed during the present study are available from the corresponding author on reasonable request.
Ethical approval:
The research/study was approved by the Institutional Review Board at PGIMER Chandigarh, number NK5998/MSc/301, dated 2nd March 2020.
Declaration of patient consent:
The authors certify that they have obtained all appropriate patient consent.
Conflicts of interest:
There are no conflicts of interest.
Use of artificial intelligence (AI)-assisted technology for manuscript preparation:
The authors confirm that there was no use of artificial intelligence (AI)-assisted technology for assisting in the writing or editing of the manuscript and no images were manipulated using AI.
Financial support and sponsorship: Nil.
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