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The experience of living with vitiligo in Nigeria: A participatory Interpretative Phenomenological Analysis

PMCID: PMC11977828

PMID: 39077838

Abstract

Vitiligo is a visible depigmenting skin condition, particularly noticeable on Black skin. There is widespread misunderstanding of the condition. Using a participatory form of Interpretative Phenomenological Analysis (IPA), we conducted eight semi-structured interviews with Nigerians living with vitiligo. Participants described their initial attempts to understand the condition, which typically drew on both traditional illness beliefs, religious influences, and the biomedical disease model. All participants reported experiencing marked stigmatization and discrimination. Participants experienced distress associated with thoughts about the personal meaning of the disease including its impact on their appearance and from concerns about anticipated and direct discrimination. Despite the wide-ranging impact, the participants’ narratives also contained references to the development of strategies that maintained wellbeing. This study provides valuable insights into the role of faith and traditional beliefs in both the experience and management of vitiligo in Nigeria. These insights can be used to develop individual and community interventions.

Full Text

Vitiligo is a chronic autoimmune skin condition characterized by the loss of pigment from the skin and hair, leading to the development of noticeable white patches. While vitiligo affects individuals regardless of skin tone, it is more noticeable in individuals with darker skin (Bergqvist and Ezzedine, 2020). The prevalence of vitiligo varies among different regions, with estimates suggesting rates of 1% in Europe and higher rates, around 3%, in African countries (Onunu and Kubeyinje, 2003; Whitton et al., 2015). These variation in prevalence probably reflect reporting bias associated with the visibility or/and cultural issues linked with the condition (Birdi et al., 2020; Parsad et al., 2003) that have not been well examined.
A number of meta-analyses and meta-syntheses demonstrate that both children and adults living with a range of visible skin conditions are at risk of experiencing significant psychological distress and psychiatric co-morbidities including experiencing symptoms typical of depression, generalized anxiety, social anxiety, and feelings of shame and anger (Ablett and Thompson, 2016; Birdi et al., 2020; Ezzedine et al., 2021; Kussainova et al., 2020; Lukmanji et al., 2021; Osinubi et al., 2018; Van Dalen et al., 2022). Evidence suggests that studies using questionnaire measurements of depression and anxiety typically report higher levels of affective distress than studies using clinical interview (Osinubi et al., 2018). Nevertheless, there is clear evidence that people diagnosed with vitiligo are at heightened risk of developing clinically significant mood disturbance (Eleftheriadou et al., 2024; Osinubi et al., 2018; Thompson et al., 2022). Indeed, in a recent large-scale UK population-based cohort study that examined medical records, Thompson et al. (2022) reported that vitiligo is associated with an approximately 25% increase in risk of new onset depression and anxiety, within the first 2 years following the diagnosis. This study also found evidence that the risk of psychological co-morbidity was higher in people of non-White ethnicity. Further, people with both vitiligo and mental health comorbidities had more primary care encounters and were found to be twice as likely to have time off work as compared to matched controls. This indicates that vitiligo can have a profound impact on healthcare utilization, quality of life, and financial stability. Treatment for both the condition itself and its comorbidities has been identified from another large-scale record review study to be slow or/and lacking (Eleftheriadou et al., 2024).
A number of cross-sectional studies further demonstrate that the psychological and quality of life burden is common across different countries (Kussainova et al., 2020; Olasode and George, 2008; Yaghoobi et al., 2011). For example, Parsad et al. (2003) conducted a review of the quality of life of people in India and found that social stigma was a major concern. Studies conducted in Nigeria report a similar impact particularly in relation to stigmatization, yet it remains unclear as to the factors that contribute to this stigma or to its exact nature or phenomenology (Nnoruka, 2005). Stigmatization may exist due to a number of factors including misunderstanding about the condition, to concerns relating to its impact on appearance. For example, Ramam et al. (2013) reported that in India, the condition is often misinterpreted as “white leprosy,” and this has also been reported to be the case in Nigeria (Onunu and Kubeyinje, 2003). Further in a cross-sectional survey conducted by Tsadik et al. (2020) in Ethiopia, participants reported that supernatural explanations remained associated with vitiligo.
In the UK Thompson et al. (2010) conducted a template analysis with British South Asian women, and whilst they did not directly ask about cultural issues, the interview data revealed that stigmatization was associated with a range of factors including perceived impact on arranged marriage and family status. In an early interpretative phenomenological study conducted in the UK, Thompson et al. (2002) reported that their female participants were concerned by thoughts of being different, and attempted to avoid stigmatization by utilizing a range of internal and external strategies. A phenomenological study conducted with women with vitiligo in Iran also demonstrated that the impact on appearance was related to culturally specific concerns, and in particular concerns about marriage (Borimnejad et al., 2006). Further, the participants gave descriptions that other people had misattributed their vitiligo as resulting from punishment from God, uncleanliness, or dietary factors, and whilst such factors have been identified in other countries the nuances of such issues appear to vary depending on cultural, geographical, and temporal factors.
As yet there have not been any substantive qualitative investigation conducted in Africa, and given this the present study sought to understand the psychosocial impact of living with vitiligo in Nigeria. In addition to the general need for expert by experience involvement, when researchers are working in cultures different from their own they must ensure that the methodology used is sensitive to cultural issues, and this is particular important when investigating phenomenon related to ethnicity such as skin pigmentation. Consequently, in this study we used a participatory form of Interpretative Phenomenological Analysis (IPA: Larkin and Thompson, 2012; Smith et al., 2021). Interpretative Phenomenological Analysis (IPA) involves a double-hermeneutic process whereby the experiences of the participant are first interpreted and made sense of by themselves within the context of the study aims, and secondly interpreted and made sense of by the research group (Larkin and Thompson, 2012; Larkin et al., 2006; Smith et al., 2021). Further IPA is an idiographic case-series approach, and as such is ideally suited to capturing detailed accounts that can be interpretated in an attempt to understand stigmatization and distress associated with vitiligo within the sociocultural context in which it occurs.
This study followed the well-established original IPA approach (Larkin and Thompson, 2012; Smith et al., 2009). IPA is grounded in two core theoretical foundations: phenomenology and hermeneutics. It begins by constructing a descriptive account of the experiences, and then moves toward making grounded interpretations based on those accounts. The IPA approach sought to not only give voice to a Nigerian account of the experience of living with vitiligo, but also sought to provide interpretation that goes beyond the accounts themselves, incorporating psychological concepts so as to enhance understanding (Smith et al., 2009). This approach has previously been used to investigate the experiences of living with vitiligo by the senior author in other contexts (Moss et al., 2020; Thompson et al., 2002, 2010). Further IPA has also been used widely in Clinical Health Psychology field (Smith, 2010; Thompson, 2017).
In researching groups according to socially constructed definitions of race/nationality/ethnicity it is essential to work with experts by experience so as to avoid “essentialism” (Gunaratnam, 2003). The participatory approach was guided by Emanuel et al.’s eight-point guideline for research in developing countries (Emanuel et al., 2004: See Supplemental Material). As such this study used a participatory form of IPA as advocated by Larkin and Thompson (2012) to capture and reflect upon the principal claims and concerns of individuals living with vitiligo in Nigeria. The study was an active collaboration with the Nigerian vitiligo charity (VITSAF: The Vitiligo Support and Awareness Foundation), and in addition had the support of the University of Sheffield’s West African Regional office, and the Nigerian Association of Dermatologists. The study was conceived and developed with VITSAF and in particular the third author who had made contact with the senior/last author to initiate and seek funding to support this work.
Ethical approval was gained from the University of Sheffield and guidelines for conducting research in developing countries was followed (Emanuel et al., 2004). Prior to interviews being conducted all participants provided written consent and had the chance to ask questions about the study.
A small homogeneous sample of eight participants (see the Supplemental Material) were purposively recruited and reimbursed for travel expenses. Participants were included if they had a diagnosis of vitiligo, experienced some source of burden due to their condition, and spoke English. To assess the burden of the condition criterion, we used the Dermatology Quality of Life Index (DLQI: Finlay, 1997) and the Fear of Negative Evaluation questionnaire (FNE: Stopa and Clark, 2001). Both male and females were eligible to participate, and the exclusion criteria were loss of pigmentation due to reasons other than vitiligo or other significant health conditions. Recruitment occurred via social media and via the personal communication carried out by VITSAF. In order to participate some participants traveled from other regions within Nigeria.
We followed guidelines to conducting IPA as per the original approach (e.g. Eatough and Smith, 2008; Larkin and Thompson, 2012; Smith et al., 2009). For each participant the transcribed audio recordings were checked for accuracy by the research team drawing on the third author for assistance where cultural translation was necessary. During the reading of the transcripts the first author referred to a reflective diary that had been maintained by the first and final authors throughout the research process. This was used to facilitate understanding of the phenomenon being investigated with reference to the researchers’ own experiences and positions (see reflexivity section below: Biggerstaff and Thompson, 2008; Shaw, 2010).
Due to the interpretative nature of IPA reflexivity is central to the research process (Biggerstaff and Thompson, 2008; Shaw, 2010). As described above the first and senior/final author kept an ongoing reflective diary. This was used to record both theoretical reflections and field notes at various points throughout the study. Within the diary particular consideration was given to the impact of the research teams preconceptions might have on the study’s findings, and how the research teams values and theoretical orientations might affect the study. The reflexivity process was essentially used to inform the analysis process via consideration of the inter-subjectivity and some excerpts are included in the results section to demonstrate this (Biggerstaff and Thompson, 2008).
Qualitative equivalent of validity criteria as defined by writers such as Stiles (1999) were adhered to, which for example included consideration that the analysis was conducted in an iterative fashion. As IPA is an interpretative approach, participant validation was not utilized and was replaced with an audit process that saw the data and analytic processes scrutinized so as to ensure that there was evidence of there being quality data, and that this data could be evidenced as having been analyzed in a rigorous fashion commensurate with IPA procedures (Larkin and Thompson, 2012; Spencer and Ritchie, 2012).
The careful grouping of themes across the transcripts led to the creation of four superordinate themes, each associated with secondary themes (see Table 1). These are described in more detail below with some references also being made to the reflective diary used to support the development of the interpretations.
The second super-ordinate theme, as Table 1 presents, generated two overlapping sub-themes, referring to: (a) ideas derived from traditional beliefs of the condition, and (b) ideas from medical beliefs of the condition.
The findings of this study provide some support for the applicability of current psychological theories and models of disfigurement (e.g. Clarke et al., 2013; Thompson, 2012a, 2012b), with the participants describing vitiligo as having both a negative psychological impact and considerable impact upon their quality of life. This fits with Thompson and Kent (2001) and Cash’s (1990) distinction that in order to understand disfigurement or visible difference, both “the view from the inside” (self-concept, quality of life, emotional wellbeing) and “view from the outside” (social and cultural interactions) must be understood. However, our findings provide a unique insight into the experience of people living with vitiligo in Nigeria that suggests existing models do need to give greater consideration to cultural aspects of the condition that go beyond simple recognition that this might be associated with stigmatization.
Whilst the findings largely align with previous qualitative (Borimnejad et al., 2006; Thompson et al., 2002, 2010) and survey studies (Ayonrinde et al., 2004; Nnoruka, 2005; Onunu and Kubeyinje, 2003) that highlight the common experience of early distress, stigmatization, and the desire to conceal the condition, there are important nuanced differences that will be discussed below. Certainly, the experience of stigmatization is evident in both the current study and research conducted in other countries (Kim et al., 2009; Olasode and George, 2008; Onunu and Kubeyinje, 2003; Parsad et al., 2003; Schmid-Ott et al., 2007), with the participants’ in this study reporting having experienced particularly vocal public displays of disgust and shock associated with misunderstandings and prejudice about vitiligo.
The psychological impact of vitiligo was described as initially being distressing and confusing. When compared with the findings of Thompson et al. (2002, 2010) where the participants were drawn from the UK, the participants in this study described having less initial awareness and knowledge about vitiligo, and this is similar to the findings of Borimnejad et al. (2006) with a sample of Iranian women. One explanation for this difference might be the differences in the health care systems, however there is also the possibility that additional confusion and anxiety results from the increased complexity, associated when alternative (traditional or faith-based) causal explanations are present. Indeed, our superordinate theme associated with core beliefs about causation indicates narratives of confusion and distress in participants’ accounts.
Indeed, the present study uniquely highlights the significant role of traditional cultural health beliefs in the vitiligo experience. Participants’ descriptions of their initial beliefs about vitiligo corroborate those given by Ayonrinde et al. (2004) who explored the perspectives of lay individuals in Nigeria, of health issues. Notably, these beliefs are deeply rooted in traditional spiritual frameworks. Many beliefs are rooted in the idea of punishment for previous wrongdoing, such as displeasing forefathers or going against traditions. In turn, these beliefs can influence treatment approaches. For instance, some individuals may opt for evidence-based intervention, while others may seek cultural practices, for instance, involving interactions with tribe members, and in conditions where there is limited medical treatment available and lack of understanding about a condition, both approaches may be utilized, at least initially, as was found in this study.
Participants in this study emphasized the significant role of God and their own faith in helping them to positively adjust and cope. Substantial evidence indicates that positive religious coping is linked with better illness experience and outcome and that negative religious coping is associated with poor illness experience and outcome, specifically anxiety and depression (Krägeloh, 2011; Weber and Pargament, 2014). The narratives from all the interviews in our study consistently reflect the adoption of positive religious coping mechanisms by participants, albeit on occasion accompanied by ambivalence about specific practices suggested by others.
Likewise, all the participants described the benefits of belonging to a peer support organization as facilitating positive coping that allowed them to find out about treatment and benefit from the support of a community. Mead et al. (2001) argues that peer support is an extension of community rather than being an extension of professional style care. She defines peer support as involving respect, mutual agreement about what is helpful, and a shared responsibility. This definition fits well with the description given by participants of the benefits of connectedness with VITSAF, and this is the first study to highlight the potential benefits of peer support for vitiligo in Nigeria.
From a practical perspective, incorporating spiritual well-being alongside physical and mental well-being might provide a foundation for culturally sensitive interventions in African countries (Anakwenze, 2022). Likewise, accommodating traditional health beliefs into cognitive, behavioral, and public health interventions can booster targeted outcomes, such as reducing stigmatization and shame, as well as creating more inclusive healthcare environments that value and respect diverse beliefs and practices. Strategies such as cultural sensitivity (Resnicow et al., 1999), collaborative approaches (Wallerstein et al., 2017) education and awareness (Gamby et al., 2021), and the integration of spirituality (Karademas and Petrakis, 2009; Koenig et al., 2001; Tsaousis et al., 2013) can foster a greater understanding, challenge discrimination, and promote inclusive healthcare environments (Betancourt, 2003). However, it is essential to tailor interventions to the local context and engage with relevant stakeholders and communities to ensure their relevance and success in addressing the unique experiences of individuals with vitiligo in African countries (De Jong, 2014). Development and testing such interventions, may be particularly important for countries in African with strong cultural influence where ineffective and dangerous medicinal products or traditional treatments can prevail.
The study acknowledges limitations, with participants being recruited via a specific organization, possibly limiting the themes transferability beyond this context. High acceptance of medical causes by our sample perhaps indicates access to information facilitated by the charity that others might not have, and clearly further studies are needed to examine the experience of participant samples in both Nigeria and other African countries not connected with peer support organizations. Whilst the study had clear processes in place to consider cultural issues, further studies might adopt additional ethnographic methods that might enable additional cultural issues to be identified. We used the original version of IPA and it is possible that the newer version (e.g. Smith and Nizza, 2022; Smith et al., 2021) may have possibly contributed to the development of more detailed themes. That said, our approach was extremely rigorous and had a high level of expert by experience involvement.

Sections

"[{\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr4-13591053241261684\", \"bibr31-13591053241261684\", \"bibr57-13591053241261684\", \"bibr7-13591053241261684\", \"bibr33-13591053241261684\"], \"section\": \"Introduction\", \"text\": \"Vitiligo is a chronic autoimmune skin condition characterized by the loss of pigment from the skin and hair, leading to the development of noticeable white patches. While vitiligo affects individuals regardless of skin tone, it is more noticeable in individuals with darker skin (Bergqvist and Ezzedine, 2020). The prevalence of vitiligo varies among different regions, with estimates suggesting rates of 1% in Europe and higher rates, around 3%, in African countries (Onunu and Kubeyinje, 2003; Whitton et al., 2015). These variation in prevalence probably reflect reporting bias associated with the visibility or/and cultural issues linked with the condition (Birdi et al., 2020; Parsad et al., 2003) that have not been well examined.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr1-13591053241261684\", \"bibr7-13591053241261684\", \"bibr15-13591053241261684\", \"bibr23-13591053241261684\", \"bibr26-13591053241261684\", \"bibr32-13591053241261684\", \"bibr54-13591053241261684\", \"bibr32-13591053241261684\", \"bibr13-13591053241261684\", \"bibr32-13591053241261684\", \"bibr49-13591053241261684\", \"bibr49-13591053241261684\", \"bibr13-13591053241261684\"], \"section\": \"Introduction\", \"text\": \"A number of meta-analyses and meta-syntheses demonstrate that both children and adults living with a range of visible skin conditions are at risk of experiencing significant psychological distress and psychiatric co-morbidities including experiencing symptoms typical of depression, generalized anxiety, social anxiety, and feelings of shame and anger (Ablett and Thompson, 2016; Birdi et al., 2020; Ezzedine et al., 2021; Kussainova et al., 2020; Lukmanji et al., 2021; Osinubi et al., 2018; Van Dalen et al., 2022). Evidence suggests that studies using questionnaire measurements of depression and anxiety typically report higher levels of affective distress than studies using clinical interview (Osinubi et al., 2018). Nevertheless, there is clear evidence that people diagnosed with vitiligo are at heightened risk of developing clinically significant mood disturbance (Eleftheriadou et al., 2024; Osinubi et al., 2018; Thompson et al., 2022). Indeed, in a recent large-scale UK population-based cohort study that examined medical records, Thompson et al. (2022) reported that vitiligo is associated with an approximately 25% increase in risk of new onset depression and anxiety, within the first 2\\u2009years following the diagnosis. This study also found evidence that the risk of psychological co-morbidity was higher in people of non-White ethnicity. Further, people with both vitiligo and mental health comorbidities had more primary care encounters and were found to be twice as likely to have time off work as compared to matched controls. This indicates that vitiligo can have a profound impact on healthcare utilization, quality of life, and financial stability. Treatment for both the condition itself and its comorbidities has been identified from another large-scale record review study to be slow or/and lacking (Eleftheriadou et al., 2024).\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr23-13591053241261684\", \"bibr30-13591053241261684\", \"bibr58-13591053241261684\", \"bibr33-13591053241261684\", \"bibr29-13591053241261684\", \"bibr34-13591053241261684\", \"bibr31-13591053241261684\", \"bibr52-13591053241261684\"], \"section\": \"Introduction\", \"text\": \"A number of cross-sectional studies further demonstrate that the psychological and quality of life burden is common across different countries (Kussainova et al., 2020; Olasode and George, 2008; Yaghoobi et al., 2011). For example, Parsad et al. (2003) conducted a review of the quality of life of people in India and found that social stigma was a major concern. Studies conducted in Nigeria report a similar impact particularly in relation to stigmatization, yet it remains unclear as to the factors that contribute to this stigma or to its exact nature or phenomenology (Nnoruka, 2005). Stigmatization may exist due to a number of factors including misunderstanding about the condition, to concerns relating to its impact on appearance. For example, Ramam et al. (2013) reported that in India, the condition is often misinterpreted as \\u201cwhite leprosy,\\u201d and this has also been reported to be the case in Nigeria (Onunu and Kubeyinje, 2003). Further in a cross-sectional survey conducted by Tsadik et al. (2020) in Ethiopia, participants reported that supernatural explanations remained associated with vitiligo.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr48-13591053241261684\", \"bibr51-13591053241261684\", \"bibr8-13591053241261684\"], \"section\": \"Introduction\", \"text\": \"In the UK Thompson et al. (2010) conducted a template analysis with British South Asian women, and whilst they did not directly ask about cultural issues, the interview data revealed that stigmatization was associated with a range of factors including perceived impact on arranged marriage and family status. In an early interpretative phenomenological study conducted in the UK, Thompson et al. (2002) reported that their female participants were concerned by thoughts of being different, and attempted to avoid stigmatization by utilizing a range of internal and external strategies. A phenomenological study conducted with women with vitiligo in Iran also demonstrated that the impact on appearance was related to culturally specific concerns, and in particular concerns about marriage (Borimnejad et al., 2006). Further, the participants gave descriptions that other people had misattributed their vitiligo as resulting from punishment from God, uncleanliness, or dietary factors, and whilst such factors have been identified in other countries the nuances of such issues appear to vary depending on cultural, geographical, and temporal factors.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr24-13591053241261684\", \"bibr40-13591053241261684\", \"bibr24-13591053241261684\", \"bibr25-13591053241261684\", \"bibr40-13591053241261684\"], \"section\": \"Introduction\", \"text\": \"As yet there have not been any substantive qualitative investigation conducted in Africa, and given this the present study sought to understand the psychosocial impact of living with vitiligo in Nigeria. In addition to the general need for expert by experience involvement, when researchers are working in cultures different from their own they must ensure that the methodology used is sensitive to cultural issues, and this is particular important when investigating phenomenon related to ethnicity such as skin pigmentation. Consequently, in this study we used a participatory form of Interpretative Phenomenological Analysis (IPA: Larkin and Thompson, 2012; Smith et al., 2021). Interpretative Phenomenological Analysis (IPA) involves a double-hermeneutic process whereby the experiences of the participant are first interpreted and made sense of by themselves within the context of the study aims, and secondly interpreted and made sense of by the research group (Larkin and Thompson, 2012; Larkin et al., 2006; Smith et al., 2021). Further IPA is an idiographic case-series approach, and as such is ideally suited to capturing detailed accounts that can be interpretated in an attempt to understand stigmatization and distress associated with vitiligo within the sociocultural context in which it occurs.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr24-13591053241261684\", \"bibr39-13591053241261684\", \"bibr39-13591053241261684\", \"bibr28-13591053241261684\", \"bibr51-13591053241261684\", \"bibr48-13591053241261684\", \"bibr38-13591053241261684\", \"bibr47-13591053241261684\"], \"section\": \"Study design\", \"text\": \"This study followed the well-established original IPA approach (Larkin and Thompson, 2012; Smith et al., 2009). IPA is grounded in two core theoretical foundations: phenomenology and hermeneutics. It begins by constructing a descriptive account of the experiences, and then moves toward making grounded interpretations based on those accounts. The IPA approach sought to not only give voice to a Nigerian account of the experience of living with vitiligo, but also sought to provide interpretation that goes beyond the accounts themselves, incorporating psychological concepts so as to enhance understanding (Smith et al., 2009). This approach has previously been used to investigate the experiences of living with vitiligo by the senior author in other contexts (Moss et al., 2020; Thompson et al., 2002, 2010). Further IPA has also been used widely in Clinical Health Psychology field (Smith, 2010; Thompson, 2017).\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr18-13591053241261684\", \"bibr14-13591053241261684\", \"bibr24-13591053241261684\"], \"section\": \"Study design\", \"text\": \"In researching groups according to socially constructed definitions of race/nationality/ethnicity it is essential to work with experts by experience so as to avoid \\u201cessentialism\\u201d (Gunaratnam, 2003). The participatory approach was guided by Emanuel et al.\\u2019s eight-point guideline for research in developing countries (Emanuel et al., 2004: See Supplemental Material). As such this study used a participatory form of IPA as advocated by Larkin and Thompson (2012) to capture and reflect upon the principal claims and concerns of individuals living with vitiligo in Nigeria. The study was an active collaboration with the Nigerian vitiligo charity (VITSAF: The Vitiligo Support and Awareness Foundation), and in addition had the support of the University of Sheffield\\u2019s West African Regional office, and the Nigerian Association of Dermatologists. The study was conceived and developed with VITSAF and in particular the third author who had made contact with the senior/last author to initiate and seek funding to support this work.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr14-13591053241261684\"], \"section\": \"Study design\", \"text\": \"Ethical approval was gained from the University of Sheffield and guidelines for conducting research in developing countries was followed (Emanuel et al., 2004). Prior to interviews being conducted all participants provided written consent and had the chance to ask questions about the study.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr16-13591053241261684\", \"bibr44-13591053241261684\"], \"section\": \"Sampling and recruitment\", \"text\": \"A small homogeneous sample of eight participants (see the Supplemental Material) were purposively recruited and reimbursed for travel expenses. Participants were included if they had a diagnosis of vitiligo, experienced some source of burden due to their condition, and spoke English. To assess the burden of the condition criterion, we used the Dermatology Quality of Life Index (DLQI: Finlay, 1997) and the Fear of Negative Evaluation questionnaire (FNE: Stopa and Clark, 2001). Both male and females were eligible to participate, and the exclusion criteria were loss of pigmentation due to reasons other than vitiligo or other significant health conditions. Recruitment occurred via social media and via the personal communication carried out by VITSAF. In order to participate some participants traveled from other regions within Nigeria.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr12-13591053241261684\", \"bibr24-13591053241261684\", \"bibr39-13591053241261684\", \"bibr6-13591053241261684\", \"bibr37-13591053241261684\"], \"section\": \"Data analysis\", \"text\": \"We followed guidelines to conducting IPA as per the original approach (e.g. Eatough and Smith, 2008; Larkin and Thompson, 2012; Smith et al., 2009). For each participant the transcribed audio recordings were checked for accuracy by the research team drawing on the third author for assistance where cultural translation was necessary. During the reading of the transcripts the first author referred to a reflective diary that had been maintained by the first and final authors throughout the research process. This was used to facilitate understanding of the phenomenon being investigated with reference to the researchers\\u2019 own experiences and positions (see reflexivity section below: Biggerstaff and Thompson, 2008; Shaw, 2010).\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr6-13591053241261684\", \"bibr37-13591053241261684\", \"bibr6-13591053241261684\"], \"section\": \"Reflexivity\", \"text\": \"Due to the interpretative nature of IPA reflexivity is central to the research process (Biggerstaff and Thompson, 2008; Shaw, 2010). As described above the first and senior/final author kept an ongoing reflective diary. This was used to record both theoretical reflections and field notes at various points throughout the study. Within the diary particular consideration was given to the impact of the research teams preconceptions might have on the study\\u2019s findings, and how the research teams values and theoretical orientations might affect the study. The reflexivity process was essentially used to inform the analysis process via consideration of the inter-subjectivity and some excerpts are included in the results section to demonstrate this (Biggerstaff and Thompson, 2008).\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr43-13591053241261684\", \"bibr24-13591053241261684\", \"bibr42-13591053241261684\"], \"section\": \"Quality control\", \"text\": \"Qualitative equivalent of validity criteria as defined by writers such as Stiles (1999) were adhered to, which for example included consideration that the analysis was conducted in an iterative fashion. As IPA is an interpretative approach, participant validation was not utilized and was replaced with an audit process that saw the data and analytic processes scrutinized so as to ensure that there was evidence of there being quality data, and that this data could be evidenced as having been analyzed in a rigorous fashion commensurate with IPA procedures (Larkin and Thompson, 2012; Spencer and Ritchie, 2012).\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"table1-13591053241261684\"], \"section\": \"Results\", \"text\": \"The careful grouping of themes across the transcripts led to the creation of four superordinate themes, each associated with secondary themes (see Table 1). These are described in more detail below with some references also being made to the reflective diary used to support the development of the interpretations.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"table1-13591053241261684\"], \"section\": \"Core beliefs about causation\", \"text\": \"The second super-ordinate theme, as Table 1 presents, generated two overlapping sub-themes, referring to: (a) ideas derived from traditional beliefs of the condition, and (b) ideas from medical beliefs of the condition.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr10-13591053241261684\", \"bibr45-13591053241261684\", \"bibr46-13591053241261684\", \"bibr50-13591053241261684\", \"bibr9-13591053241261684\"], \"section\": \"Discussion\", \"text\": \"The findings of this study provide some support for the applicability of current psychological theories and models of disfigurement (e.g. Clarke et al., 2013; Thompson, 2012a, 2012b), with the participants describing vitiligo as having both a negative psychological impact and considerable impact upon their quality of life. This fits with Thompson and Kent (2001) and Cash\\u2019s (1990) distinction that in order to understand disfigurement or visible difference, both \\u201cthe view from the inside\\u201d (self-concept, quality of life, emotional wellbeing) and \\u201cview from the outside\\u201d (social and cultural interactions) must be understood. However, our findings provide a unique insight into the experience of people living with vitiligo in Nigeria that suggests existing models do need to give greater consideration to cultural aspects of the condition that go beyond simple recognition that this might be associated with stigmatization.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr8-13591053241261684\", \"bibr51-13591053241261684\", \"bibr48-13591053241261684\", \"bibr3-13591053241261684\", \"bibr29-13591053241261684\", \"bibr31-13591053241261684\", \"bibr20-13591053241261684\", \"bibr30-13591053241261684\", \"bibr31-13591053241261684\", \"bibr33-13591053241261684\", \"bibr36-13591053241261684\"], \"section\": \"Discussion\", \"text\": \"Whilst the findings largely align with previous qualitative (Borimnejad et al., 2006; Thompson et al., 2002, 2010) and survey studies (Ayonrinde et al., 2004; Nnoruka, 2005; Onunu and Kubeyinje, 2003) that highlight the common experience of early distress, stigmatization, and the desire to conceal the condition, there are important nuanced differences that will be discussed below. Certainly, the experience of stigmatization is evident in both the current study and research conducted in other countries (Kim et al., 2009; Olasode and George, 2008; Onunu and Kubeyinje, 2003; Parsad et al., 2003; Schmid-Ott et al., 2007), with the participants\\u2019 in this study reporting having experienced particularly vocal public displays of disgust and shock associated with misunderstandings and prejudice about vitiligo.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr51-13591053241261684\", \"bibr48-13591053241261684\", \"bibr8-13591053241261684\"], \"section\": \"Discussion\", \"text\": \"The psychological impact of vitiligo was described as initially being distressing and confusing. When compared with the findings of Thompson et al. (2002, 2010) where the participants were drawn from the UK, the participants in this study described having less initial awareness and knowledge about vitiligo, and this is similar to the findings of Borimnejad et al. (2006) with a sample of Iranian women. One explanation for this difference might be the differences in the health care systems, however there is also the possibility that additional confusion and anxiety results from the increased complexity, associated when alternative (traditional or faith-based) causal explanations are present. Indeed, our superordinate theme associated with core beliefs about causation indicates narratives of confusion and distress in participants\\u2019 accounts.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr3-13591053241261684\"], \"section\": \"Discussion\", \"text\": \"Indeed, the present study uniquely highlights the significant role of traditional cultural health beliefs in the vitiligo experience. Participants\\u2019 descriptions of their initial beliefs about vitiligo corroborate those given by Ayonrinde et al. (2004) who explored the perspectives of lay individuals in Nigeria, of health issues. Notably, these beliefs are deeply rooted in traditional spiritual frameworks. Many beliefs are rooted in the idea of punishment for previous wrongdoing, such as displeasing forefathers or going against traditions. In turn, these beliefs can influence treatment approaches. For instance, some individuals may opt for evidence-based intervention, while others may seek cultural practices, for instance, involving interactions with tribe members, and in conditions where there is limited medical treatment available and lack of understanding about a condition, both approaches may be utilized, at least initially, as was found in this study.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr22-13591053241261684\", \"bibr56-13591053241261684\"], \"section\": \"Discussion\", \"text\": \"Participants in this study emphasized the significant role of God and their own faith in helping them to positively adjust and cope. Substantial evidence indicates that positive religious coping is linked with better illness experience and outcome and that negative religious coping is associated with poor illness experience and outcome, specifically anxiety and depression (Kr\\u00e4geloh, 2011; Weber and Pargament, 2014). The narratives from all the interviews in our study consistently reflect the adoption of positive religious coping mechanisms by participants, albeit on occasion accompanied by ambivalence about specific practices suggested by others.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr27-13591053241261684\"], \"section\": \"Discussion\", \"text\": \"Likewise, all the participants described the benefits of belonging to a peer support organization as facilitating positive coping that allowed them to find out about treatment and benefit from the support of a community. Mead et al. (2001) argues that peer support is an extension of community rather than being an extension of professional style care. She defines peer support as involving respect, mutual agreement about what is helpful, and a shared responsibility. This definition fits well with the description given by participants of the benefits of connectedness with VITSAF, and this is the first study to highlight the potential benefits of peer support for vitiligo in Nigeria.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr2-13591053241261684\", \"bibr35-13591053241261684\", \"bibr55-13591053241261684\", \"bibr17-13591053241261684\", \"bibr19-13591053241261684\", \"bibr21-13591053241261684\", \"bibr53-13591053241261684\", \"bibr5-13591053241261684\", \"bibr11-13591053241261684\"], \"section\": \"Discussion\", \"text\": \"From a practical perspective, incorporating spiritual well-being alongside physical and mental well-being might provide a foundation for culturally sensitive interventions in African countries (Anakwenze, 2022). Likewise, accommodating traditional health beliefs into cognitive, behavioral, and public health interventions can booster targeted outcomes, such as reducing stigmatization and shame, as well as creating more inclusive healthcare environments that value and respect diverse beliefs and practices. Strategies such as cultural sensitivity (Resnicow et al., 1999), collaborative approaches (Wallerstein et al., 2017) education and awareness (Gamby et al., 2021), and the integration of spirituality (Karademas and Petrakis, 2009; Koenig et al., 2001; Tsaousis et al., 2013) can foster a greater understanding, challenge discrimination, and promote inclusive healthcare environments (Betancourt, 2003). However, it is essential to tailor interventions to the local context and engage with relevant stakeholders and communities to ensure their relevance and success in addressing the unique experiences of individuals with vitiligo in African countries (De Jong, 2014). Development and testing such interventions, may be particularly important for countries in African with strong cultural influence where ineffective and dangerous medicinal products or traditional treatments can prevail.\"}, {\"pmc\": \"PMC11977828\", \"pmid\": \"39077838\", \"reference_ids\": [\"bibr41-13591053241261684\", \"bibr40-13591053241261684\"], \"section\": \"Discussion\", \"text\": \"The study acknowledges limitations, with participants being recruited via a specific organization, possibly limiting the themes transferability beyond this context. High acceptance of medical causes by our sample perhaps indicates access to information facilitated by the charity that others might not have, and clearly further studies are needed to examine the experience of participant samples in both Nigeria and other African countries not connected with peer support organizations. Whilst the study had clear processes in place to consider cultural issues, further studies might adopt additional ethnographic methods that might enable additional cultural issues to be identified. We used the original version of IPA and it is possible that the newer version (e.g. Smith and Nizza, 2022; Smith et al., 2021) may have possibly contributed to the development of more detailed themes. That said, our approach was extremely rigorous and had a high level of expert by experience involvement.\"}]"

Metadata

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