The lived experience of vitiligo patients — a qualitative study Essay

The lived experience of vitiligo patients – A Qualitative study

By Meron D Mersha

Introduction

Vitiligo is an acquired, progressive pigmentary disorder of the skin and mucous membrane which result in whitening (milky or chalk-white) of the skin due to loss of pigment cells (melanocytes). Depigmentation may involve a localized or very generalized area of the skin. Most common sites are periorificial, face, genitals, extensor surfaces, hands, and feet. It is a common cutaneous disorder that has severe psychological and significant social consequences. Vitiligo affects approximately 0.5-2% of the general population worldwide. It can occur at any age with peak onset on set at 10-30 years of age. All races and both sex is equally affected. Although the exact mechanism for the pathogenesis of the disease remains unknown, various theories have been proposed such as the complex interplay of genetics, oxidative stress and autoimmune process (bologna). Vitiligo has no cure. The available treatment option aims in repigmentation and stabilization of depigmentation process. The up-to-date treatment in best set up involves phototherapy, topical steroids, topical calcineurin inhibitors, laser therapy, micropigmentation, surgical therapies, and psychological support. (Bolognia, Cerroni, and Schaffer, 2012)

In Ethiopia, the prevalence of vitiligo is not known, but one regional tertiary level hospital-based (Ayder referral teaching hospital, Tigray region, Northern Ethiopia) study revealed the prevalence is 9.6% (Mino, Kelbore, 2018). Also, the patient treatment option is extremely limited with topical steroid being the only treatment option in Ethiopia.

Background/ previous research

[bookmark: _Hlk535081339]Skin is the largest organ in our body and has various physiological functions. It also serves as the communication to the external environment. Any visible problem on the skin might results in impairment of body image consequently leads to loss of self-esteem, stigma and serious psychiatric morbidity (Tomas-Aragones & Marron, 2014). Chronic dermatologic diseases significantly affect the quality of life. In fact, skin disease is a major cause of nonfatal disease burden globally (Hay et al., 2014). Due to non-fatal nature of the disease, it attracts minimal attention from policymakers but its impact on psychological social life in addition to physical symptom and disfigurement results in comparatively similar burden like those who affected by other chronic diseases (Hay et al., 2014). Previous research showed vitiligo significantly affects the quality of life. Aside from the aesthetic disfigurement, patients express emotional and psychological outcome. They often develop insecurities and loss of confidence which leads them to emotional disturbance and social isolation (Nath, Bhagabati and Sangma, 2015). The absence of cure from treatment, chronicity of the disease and unpredictable progression of the skin depigmentation increase stress to the patients (Parsad et al, 2003). Patients also experience unwanted attention, stigma and rejection from the society results in isolation and adding up to psychological distress (Parsad et al, 2003). As Tomas-Aragones & Marron, (2016) states patients affected by vitiligo or other dermatologic disorder have a higher risk of psychiatric illness such as depression body dysmorphic disorder, anxiety disorder, and suicidal ideation. Previous quantitative research done at ALERT hospital, Ethiopia showed that a higher prevalence of anxiety disorder among patients with common dermatologic diseases. A significant positive association documented with anxiety disorder and duration of the illness, poor social support, perceived stigma, being female and the location of the lesion (Abebe and Ayano, 2016).

Aim and research questions

The aim of this qualitative study is to explore the lived experience of patients with vitiligo in Ethiopia context and gain insight about the consequence of the disease and their experience of coping with its physical, psychological and social outcome in their life. This will ultimately aim to improve patients’ management and benefit their future life.

Research question

1. What are vitiligo patient views, experiences, and perceptions about the disease?

2. How is it affecting their day to day life experience?

3. What types of social and psychological problems they are facing?

Methods

Study setting

The study will be conducted in All African TB and Leprosy Rehabilitation and Training Center (ALERT Hospital) which is located at Addis Ababa, the capital city of Ethiopia. The center currently serves as a teaching hospital affiliated with Addis Ababa university school of medicine and as a research center. It has 240 beds and constitutes of dermatology, ophthalmology, surgery, neurosurgery and orthopedic departments. It serves for patients coming from all regions of the country. It is the pioneer hospital in providing the dermatology service and first dermatology specialty teaching center in Ethiopia. (Alertethiopia, 2019)

Design

This study is going to use a hermeneutical or interpretive phenomenology study design approach. Smith and Osborn, (2008) mentioned this approach will best suit to study lived experience of life events emphasizing on their feeling, views, and perception. The researcher will get a direct exposure into their world and analyze the phenomena from different viewpoint such as cultural and social aspect (Borimnejad et al, 2006). With this methodological approach and the research questions, I will create a space for them to reflect on their perception, feeling and concerns about vitiligo and try to interpret and understand their lived experience through their language history and culture.

Sampling/ participants/ context of sampling

This study is going to use a qualitative research method with a phenomenological approach. The inclusion criteria for the Participants will be both male and female, age greater than 18 years Patients diagnosed with Vitiligo for at least 1 or more years, a patient who have no comorbid chronic illness, no prior psychiatric illness, no acute illness at the time of interview and voluntary participation. Participant will be contacted when they come for follow up at ALERT hospital chronic dermatology clinic. I will use a purposeful sampling technique with criterion sampling approach.

Data and data collection

After gaining approval from hospital research ethics committee, participants will be recruited based on the inclusion criteria, I will give them information about the aim of the research and take their signature on the written consent form to participate the study. The interview will be one to one basis with an investigator in quite a room or anywhere participant feels comfortable inside the hospital compound. The interview will be for 45 to 60 minutes and the participant will get reassurance that they can withdraw from the study anytime they want. The national official language ‘Amharic’ will be used for an interview. The interview will be recorded for later transcription and participant will be informed. An in-depth interview with semi-structured questions will be conducted by the investigator until the level saturation attained. The questions will be open-ended and participant response will direct the investigator to subsequent questions. The following questions will be initiated by the investigator

Question 1-Lets go back to the first day of your diagnosis of vitiligo, how was your reaction during that time

Questions 2- how is vitiligo affecting your day to day life

Question 3- how is the reaction of those around you when they see the white patch over your skin

Question 4- have you ever heard of any myth or belief about vitiligo from the society you come from

participant response will be audiotaped and at the same time notes will be taken by the investigator, especially anything that can’t be captured by recording such as facial or body emotional expression will be written. During each question, investigator will be able to probe interesting area and let the participant dictate the interview process. Smith & Osborn (2008) mentioned even though this process sometimes will lead to outside of the scope the investigator expects, it is very important to note this point and use as an input for subsequent questions.

Finally, the participant will be given free sun protection cream as an acknowledgment for their participation and request for their permission to contact them if any further information needed after the interview.

Data analysis

After completion of the interview, Tapes of the interviews will be translated into English and transcribed verbatim. Then investigator will start analyzing the interview based on the recommended approach by Smith and Osborn (2006) as follows

Step 1- careful reading and re-reading of the interview transcript. Reflections based on the interview texts were noted to allow prominent themes to emerge.

Step 2- identifying the initial themes that best captured the important qualities of the interview and making sense of the connections between chronologically emerging themes. Also included organizing the closely related themes into superordinate clusters and creating a table of superordinate themes and subthemes.

Step 3- analysis of other cases, as well as identifying the similarities, discrepancies, and contradictions across cases to refine the themes.

step 4- translating the themes extracted from the participants’ experiences into a narrative account and outlining the meanings attributed to it.

Ethics

Ethical approval will be obtained from ALERT hospital Institutional ethical review board. A participant who fulfill the inclusion criteria will be contacted by the investigator and the objective of the study will be explained. A participant who give their consent will sign the form and proceed to interview. With the assurance that they can exit from the interview at any time they want. Patients name will not be recorded, and data will be accessed only by the investigators.

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Reference

Abebe, G. and Ayano, G. (2016). Prevalence and Factors Associated with Anxiety among Patients with Common Skin Disease on follow up at Alert Referral Hospital",

Addis Ababa, Ethiopia. Journal of Psychiatry, 19(03).

Alertethiopia.org. (2019). Alert Center | About ALERT. [online]

Available at:https://alertethiopia.org/about-alert/ [Accessed 14 Jan. 2019].

Bolognia, J., Cerroni, L. and Schaffer, J. (2012). Dermatology. 3rd ed. London: Mosby, pp.1023- 1030.

Hay, R., Johns, N., Williams, H., Bolliger, I., Dellavalle, R., Margolis, D., Marks, R., Naldi, L., Weinstock, M., Wulf, S., Michaud, C., J.L. Murray, C. and Naghavi, M. (2014).

The Global Burden of Skin Disease in 2010: An Analysis of the Prevalence

And Impact of Skin Conditions. Journal of Investigative Dermatology, 134(6), pp.

1527- 1534.

Mino, A",. Kelbore, A. (2018). Prevalence of Vitiligo and Associated Factors Among Adult Patients Attending Ayder Referral Teaching Hospital Dermatology Clinic in Mekelle Town, Tigray Region-Northern Ethiopia.

Parsad, D., Dogra, S., & Kanwar, A. J. (2003). Quality of life in patients with vitiligo.

Health and quality of life outcomes, 1(1), 58.

Smith, J. A., & Osborn, M. (2004). Interpretative phenomenological analysis.

Doing social psychology research, 229-254.

Tomas-Aragones, L. and Marron, S. (2014). Body Image and Body Dysmorphic Concerns.

Acta Dermato Venereologica, p.0.

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