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Australian Journal of Primary Health Australian Journal of Primary Health Society
The issues influencing community health services and primary health care
RESEARCH ARTICLE

A qualitative investigation of barriers, support-seeking and coping among South Sudanese people with chronic hepatitis B in Australia

William Mude A B , Christopher Fisher A , Jacqui Richmond A , Jack Wallace A and Roslyn Le Gautier A
+ Author Affiliations
- Author Affiliations

A Australian Research Centre in Sex, Health and Society, School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Building NR6, Bundoora, Vic. 3086, Australia.

B Corresponding author. Email: mude.w@students.latrobe.edu.au

Australian Journal of Primary Health 25(3) 264-274 https://doi.org/10.1071/PY19015
Submitted: 23 January 2019  Accepted: 8 May 2019   Published: 19 June 2019

Abstract

This inquiry examines health-seeking practices and challenges among South Sudanese people from refugee backgrounds with chronic hepatitis B in Australia. Fifteen semi-structured interviews were conducted. Using interpretative thematic analysis, the results revealed four themes, consisting of barriers and facilitators to clinical follow up, treatment and support-seeking practices and coping responses. Time constraints, having divergent views about treatment decisions and perceived inadequate clinical support were also identified as barriers. Being referred to a specialist, being aware of the risk associated with liver cancer and sending reminders about appointments were identified as facilitators to clinical follow up. Treatment-seeking practices involved both biomedical and alternative therapies. Participants mainly drew on their social networks and supports, religious beliefs and individual resilience as coping strategies. The findings are important for improving access to treatment and care and support for people with chronic hepatitis B from the South Sudanese community.

Additional keywords: healthcare-seeking, social support, Sudanese refugees.


References

Abe-Kim J, Takeuchi DT, Hong S, Zane N, Sue S, Spencer MS, Appel H, Nicdao E, Alegría M (2007) Use of mental health-related services among immigrant and US-born Asian Americans: results from the National Latino and Asian American study. American Journal of Public Health 97, 91–98.
Use of mental health-related services among immigrant and US-born Asian Americans: results from the National Latino and Asian American study.Crossref | GoogleScholarGoogle Scholar | 17138905PubMed |

Akey JE, Rintamaki LS, Kane TL (2013) Health Belief Model deterrents of social support seeking among people coping with eating disorders. Journal of Affective Disorders 145, 246–252.
Health Belief Model deterrents of social support seeking among people coping with eating disorders.Crossref | GoogleScholarGoogle Scholar | 22840616PubMed |

Alegria M, Takeuchi D, Canino G, Duan N, Shrout P, Meng XL, Vega W, Zane N, Vila D, Woo M, Vera M (2004) Considering context, place and culture: the National Latino and Asian American Study. International Journal of Methods in Psychiatric Research 13, 208–220.
Considering context, place and culture: the National Latino and Asian American Study.Crossref | GoogleScholarGoogle Scholar | 15719529PubMed |

Ali PA, Watson R (2018) Language barriers and their impact on provision of care to patients with limited English proficiency: nurses’ perspectives. Journal of Clinical Nursing 27, e1152–e1160.
Language barriers and their impact on provision of care to patients with limited English proficiency: nurses’ perspectives.Crossref | GoogleScholarGoogle Scholar | 29193568PubMed |

Allard NL, MacLachlan JH, Cowie B (2015) The cascade of care for Australians living with chronic hepatitis B: measuring access to diagnosis, management and treatment. Australian and New Zealand Journal of Public Health 39, 255–259.
The cascade of care for Australians living with chronic hepatitis B: measuring access to diagnosis, management and treatment.Crossref | GoogleScholarGoogle Scholar | 25716519PubMed |

Andruszkiewicz A, Basińska MA, Felsmann M, Banaszkiewicz M, Marzec A, Kędziora-Kornatowska K (2017) The determinants of coping with pain in chronically ill geriatric patients – the role of a sense of coherence. Clinical Interventions in Aging 12, 315–323.
The determinants of coping with pain in chronically ill geriatric patients – the role of a sense of coherence.Crossref | GoogleScholarGoogle Scholar | 28223789PubMed |

Barratt MJ, Ferris JA, Lenton S (2015) Hidden populations, online purposive sampling, and external validity: taking off the blindfold. Field Methods 27, 3–21.
Hidden populations, online purposive sampling, and external validity: taking off the blindfold.Crossref | GoogleScholarGoogle Scholar |

Bishop AC, Baker GR, Boyle TA, MacKinnon NJ (2015) Using the Health Belief Model to explain patient involvement in patient safety. Health Expectations 18, 3019–3033.
Using the Health Belief Model to explain patient involvement in patient safety.Crossref | GoogleScholarGoogle Scholar | 25303173PubMed |

Burmeister E, Aitken LM (2012) Sample size: how many is enough? Australian Critical Care 25, 271–274.
Sample size: how many is enough?Crossref | GoogleScholarGoogle Scholar | 22835279PubMed |

Carpenter CJ (2010) A meta-analysis of the effectiveness of health belief model variables in predicting behavior. Health Communication 25, 661–669.
A meta-analysis of the effectiveness of health belief model variables in predicting behavior.Crossref | GoogleScholarGoogle Scholar | 21153982PubMed |

Cohen S (2004) Social relationships and health. The American Psychologist 59, 676–684.
Social relationships and health.Crossref | GoogleScholarGoogle Scholar | 15554821PubMed |

Creswell JW, Hanson WE, Clark Plano VL, Morales A (2007) Qualitative research designs: selection and implementation. The Counseling Psychologist 35, 236–264.
Qualitative research designs: selection and implementation.Crossref | GoogleScholarGoogle Scholar |

Davis CG, Morgan MS (2008) Finding meaning, perceiving growth, and acceptance of tinnitus. Rehabilitation Psychology 53, 128–138.
Finding meaning, perceiving growth, and acceptance of tinnitus.Crossref | GoogleScholarGoogle Scholar |

deRoon-Cassini TA, de St Aubin E, Valvano A, Hastings J, Horn P (2009) Psychological well-being after spinal cord injury: perception of loss and meaning making. Rehabilitation Psychology 54, 306–314.
Psychological well-being after spinal cord injury: perception of loss and meaning making.Crossref | GoogleScholarGoogle Scholar | 19702429PubMed |

Ellard J, Wallace J (2013) Stigma, discrimination and hepatitis B: a review of current research. ARCSHS Monograph Series No. 93. Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Vic., Australia.

Etikan I, Musa SA, Alkassim RS (2016) Comparison of convenience sampling and purposive sampling. American Journal of Theoretical and Applied Statistics 5, 1–4.
Comparison of convenience sampling and purposive sampling.Crossref | GoogleScholarGoogle Scholar |

Fradgley EA, Paul CL, Bryant J (2015) A systematic review of barriers to optimal outpatient specialist services for individuals with prevalent chronic diseases: what are the unique and common barriers experienced by patients in high income countries? International Journal for Equity in Health 14, 52
A systematic review of barriers to optimal outpatient specialist services for individuals with prevalent chronic diseases: what are the unique and common barriers experienced by patients in high income countries?Crossref | GoogleScholarGoogle Scholar | 26051244PubMed |

Fusch PI, Ness LR (2015) Are we there yet? Data saturation in qualitative research. The Qualitative Report 20, 1408–1416.

Gair S (2012) Feeling their stories: contemplating empathy, insider/outsider positionings, and enriching qualitative research. Qualitative Health Research 22, 134–143.
Feeling their stories: contemplating empathy, insider/outsider positionings, and enriching qualitative research.Crossref | GoogleScholarGoogle Scholar | 21873286PubMed |

Glanz K, Rimer BK, Viswanath K (2008) ‘Health Behavior and Health Education: Theory, Research, and Practice.’ (Jossey-Bass: San Francisco, CA, USA)

Hajli MN, Shanmugam M, Hajli A, Khani AH, Wang Y (2015) Health care development: integrating transaction cost theory with social support theory. Informatics for Health and Social Care 40, 334–344.
Health care development: integrating transaction cost theory with social support theory.Crossref | GoogleScholarGoogle Scholar | 25068990PubMed |

Heaney CA, Israel BA (2008) Social networks and social support. In ‘Health Behavior and Health Education: Theory, Research, and Practice, 4th edn’ (Eds K Glanz, BK Rimer, K Viswanath) pp. 189–210. (Jossey-Bass: San Francisco, CA, USA)

Heid C, Knobloch MJ, Schulz LT, Safdar N (2016) Use of the Health Belief Model to study patient perceptions of antimicrobial stewardship in the acute care setting. Infection Control and Hospital Epidemiology 37, 576–582.
Use of the Health Belief Model to study patient perceptions of antimicrobial stewardship in the acute care setting.Crossref | GoogleScholarGoogle Scholar | 26809477PubMed |

Henderson S, Kendall E (2011) Culturally and linguistically diverse peoples’ knowledge of accessibility and utilisation of health services: exploring the need for improvement in health service delivery. Australian Journal of Primary Health 17, 195–201.
Culturally and linguistically diverse peoples’ knowledge of accessibility and utilisation of health services: exploring the need for improvement in health service delivery.Crossref | GoogleScholarGoogle Scholar | 21645477PubMed |

Holloway I, Brown L, Shipway R (2010) Meaning not measurement: using ethnography to bring a deeper understanding to the participant experience of festivals and events. International Journal of Event and Festival Management 1, 74–85.
Meaning not measurement: using ethnography to bring a deeper understanding to the participant experience of festivals and events.Crossref | GoogleScholarGoogle Scholar |

Jors K, Büssing A, Hvidt NC, Baumann K (2015) Personal prayer in patients dealing with chronic illness: a review of the research literature. Evidence-Based Complementary and Alternative Medicine 2015, 927973
Personal prayer in patients dealing with chronic illness: a review of the research literature.Crossref | GoogleScholarGoogle Scholar | 25815041PubMed |

Jowsey T, Gillespie J, Aspin C (2011) Effective communication is crucial to self-management: the experiences of immigrants to Australia living with diabetes. Chronic Illness 7, 6–19.
Effective communication is crucial to self-management: the experiences of immigrants to Australia living with diabetes.Crossref | GoogleScholarGoogle Scholar | 21078683PubMed |

Kennedy P, Evans M, Sandhu N (2009) Psychological adjustment to spinal cord injury: the contribution of coping, hope and cognitive appraisals. Psychology, Health & Medicine 14, 17–33.
Psychological adjustment to spinal cord injury: the contribution of coping, hope and cognitive appraisals.Crossref | GoogleScholarGoogle Scholar |

Kortte KB, Stevenson JE, Hosey MM, Castillo R, Wegener ST (2012) Hope predicts positive functional role outcomes in acute rehabilitation populations. Rehabilitation Psychology 57, 248–255.
Hope predicts positive functional role outcomes in acute rehabilitation populations.Crossref | GoogleScholarGoogle Scholar | 22946612PubMed |

Kouvonen A, De Vogli R, Stafford M, Shipley MJ, Marmot MG, Cox T, Vahtera J, Väänänen A, Heponiemi T, Singh-Manoux A, Kivimäki M (2012) Social support and the likelihood of maintaining and improving levels of physical activity: the Whitehall II Study. European Journal of Public Health 22, 514–518.
Social support and the likelihood of maintaining and improving levels of physical activity: the Whitehall II Study.Crossref | GoogleScholarGoogle Scholar | 21750013PubMed |

Lenfant C (2003) Shattuck lecture: clinical research to clinical practice – lost in translation? The New England Journal of Medicine 349, 868–874.
Shattuck lecture: clinical research to clinical practice – lost in translation?Crossref | GoogleScholarGoogle Scholar | 12944573PubMed |

Levy JD, Nguyen GT, Nguyen ET (2010) Factors influencing the receipt of hepatitis B vaccination and screenings in Vietnamese Americans. Journal of Health Care for the Poor and Underserved 21, 851–861.
Factors influencing the receipt of hepatitis B vaccination and screenings in Vietnamese Americans.Crossref | GoogleScholarGoogle Scholar | 20693731PubMed |

Lewis M (2016) The role of spirituality in coping with chronic illness: what health care providers need to know for advance directive decision making. Journal of Doctoral Nursing Practice. 9, 194–198.
The role of spirituality in coping with chronic illness: what health care providers need to know for advance directive decision making.Crossref | GoogleScholarGoogle Scholar |

Lincoln YS, Guba EG (1985) ‘Naturalistic Inquiry.’ (Sage Publications: Newbury Park, CA, USA)

Livneh H (2016) Quality of life and coping with chronic illness and disability. Rehabilitation Counseling Bulletin 59, 67–83.
Quality of life and coping with chronic illness and disability.Crossref | GoogleScholarGoogle Scholar |

MacLachlan JH, Cowie B (2018) Cultural and linguistic diversity of people living with chronic hepatitis B in 2011–2016: changing migration, shifting epidemiology. Australian and New Zealand Journal of Public Health 42, 441–443.
Cultural and linguistic diversity of people living with chronic hepatitis B in 2011–2016: changing migration, shifting epidemiology.Crossref | GoogleScholarGoogle Scholar | 30198602PubMed |

MacLachlan JH, Allard N, Towell V, Cowie B (2013) The burden of chronic hepatitis B virus infection in Australia, 2011. Australian and New Zealand Journal of Public Health 37, 416–422.
The burden of chronic hepatitis B virus infection in Australia, 2011.Crossref | GoogleScholarGoogle Scholar | 24090323PubMed |

McConnell-Henry T, Chapman Y, Francis K (2011) Member checking and Heideggerian phenomenology: a redundant component. Nurse Researcher 18, 28–37.
Member checking and Heideggerian phenomenology: a redundant component.Crossref | GoogleScholarGoogle Scholar | 21319482PubMed |

McGregor S (2017) Transfusion-transmissible infections in Australia: 2017 Surveillance Report. (Kirby Institute, UNSW Sydney, and the Australian Red Cross Blood Service, Sydney, NSW, Australia) Available at https://kirby.unsw.edu.au/sites/default/files/kirby/report/SERP_Transfusion-transmissible-infections-in-Australia-Surveillance-Report-2017.pdf [Verified 25 August 2018]

Michaëlis C, Kristiansen M, Norredam M (2015) Quality of life and coping strategies among immigrant women living with pain in Denmark: a qualitative study. BMJ Open 5, e008075

Newbold KB, Cho J, McKeary M (2013) Access to health care: the experiences of refugee and refugee claimant women in Hamilton, Ontario. Journal of Immigrant & Refugee Studies 11, 431–449.
Access to health care: the experiences of refugee and refugee claimant women in Hamilton, Ontario.Crossref | GoogleScholarGoogle Scholar |

Papatheodoridis GV, Chan HL-Y, Hansen BE, Janssen HL, Lampertico P (2015) Risk of hepatocellular carcinoma in chronic hepatitis B: assessment and modification with current antiviral therapy. Journal of Hepatology 62, 956–967.
Risk of hepatocellular carcinoma in chronic hepatitis B: assessment and modification with current antiviral therapy.Crossref | GoogleScholarGoogle Scholar | 25595883PubMed |

Patton MQ (2002) ‘Qualitative Research and Evaluation Methods, 3rd edn’. (Sage Publications: Thousand Oaks, CA, USA)

Reynolds N, Mrug S, Wolfe K, Schwebel D, Wallander J (2016) Spiritual coping, psychosocial adjustment, and physical health in youth with chronic illness: a meta-analytic review. Health Psychology Review 10, 226–243.
Spiritual coping, psychosocial adjustment, and physical health in youth with chronic illness: a meta-analytic review.Crossref | GoogleScholarGoogle Scholar | 26930502PubMed |

Ritchie J, Spencer C (1994) Qualitative data analysis for applied policy research. In ‘Analyzing Qualitative Data.’ (Eds A Bryman, RG Burgess) pp. 173–194. (Routledge: London, UK)

Schweitzer A, Horn J, Mikolajczyk RT, Krause G, Ott JJ (2015) Estimations of worldwide prevalence of chronic hepatitis B virus infection: a systematic review of data published between 1965 and 2013. Lancet 386, 1546–1555.
Estimations of worldwide prevalence of chronic hepatitis B virus infection: a systematic review of data published between 1965 and 2013.Crossref | GoogleScholarGoogle Scholar | 26231459PubMed |

Sippel LM, Pietrzak RH, Charney DS, Mayes LC, Southwick SM (2015) How does social support enhance resilience in the trauma-exposed individual? Ecology and Society 20, art10
How does social support enhance resilience in the trauma-exposed individual?Crossref | GoogleScholarGoogle Scholar |

Skinner CS, Tiro J, Champion VL (2015) The Health Belief Model. In ‘Health Behavior: Theory, Research, and Practice, 5th edn’. (Eds K Glanz, BK Rimer, K Viswanath) pp. 75–94. (Jossey-Bass: San Francisco, CA, USA)

Stewart MJ, Makwarimba E, Beiser M, Neufeld A, Simich L, Spitzer D (2010) Social support and health: immigrants and refugees perspectives. Diversity and Equality in Health & Care. 7, 91–103.

Stewart BJ, Mikocka-Walus AA, Harley H, Andrews JM (2012) Help-seeking and coping with the psychosocial burden of chronic hepatitis C: a qualitative study of patient, hepatologist, and counsellor perspectives. International Journal of Nursing Studies 49, 560–569.
Help-seeking and coping with the psychosocial burden of chronic hepatitis C: a qualitative study of patient, hepatologist, and counsellor perspectives.Crossref | GoogleScholarGoogle Scholar | 22154094PubMed |

Taylor VM, Bastani R, Burke N, Talbot J, Sos C, Liu Q, Jackson JC, Yasui Y (2012) Factors associated with hepatitis B testing among Cambodian American men and women. Journal of Immigrant and Minority Health 14, 30–38.
Factors associated with hepatitis B testing among Cambodian American men and women.Crossref | GoogleScholarGoogle Scholar | 22002705PubMed |

The Polaris Observatory Collaborators (2018) Global prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study. The Lancet. Gastroenterology & Hepatology 3, 383–403.
Global prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study.Crossref | GoogleScholarGoogle Scholar |

Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19, 349–357.
Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.Crossref | GoogleScholarGoogle Scholar | 17872937PubMed |

Vagle MD (2018) ‘Crafting Phenomenological Research.’ (Routledge: New York, NY, USA)

Van Der Veen YJJ, Van Empelen P, Richardus JH (2012) Development of a culturally tailored Internet intervention promoting hepatitis B screening in the Turkish community in the Netherlands. Health Promotion International 27, 342–355.
Development of a culturally tailored Internet intervention promoting hepatitis B screening in the Turkish community in the Netherlands.Crossref | GoogleScholarGoogle Scholar |

Van Manen M (2016a) ‘Phenomenology of Practice: Meaning-Giving Methods in Phenomenological Research and Writing.’ (Routledge: New York, NY, USA)

Van Manen M (2016b) ‘Researching Lived Experience: Human Science for an Action Sensitive Pedagogy.’ (Routledge: New York, NY USA)

Wallace J, McNally S, Richmond J, Hajarizadeh B, Pitts M (2011) Managing chronic hepatitis B: a qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia. BMC Research Notes 4, 45
Managing chronic hepatitis B: a qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia.Crossref | GoogleScholarGoogle Scholar | 21371332PubMed |

Ward EC, Clark LO, Heidrich S (2009) African American women’s beliefs, coping behaviors, and barriers to seeking mental health services. Qualitative Health Research 19, 1589–1601.
African American women’s beliefs, coping behaviors, and barriers to seeking mental health services.Crossref | GoogleScholarGoogle Scholar | 19843967PubMed |

Williams SJ, Bury MR (1989) Impairment, disability and handicap in chronic respiratory illness. Social Science & Medicine 29, 609–616.
Impairment, disability and handicap in chronic respiratory illness.Crossref | GoogleScholarGoogle Scholar |