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Using an innovative mixed method methodology to investigate the appropriateness of a quantitative instrument in an African context: Antiretroviral treatment and quality of life a
b
c
d
Minrie Greeff , Lignet M. Chepuka , Winnie Chilemba , Angela F. Chimwaza , Lucy I. c
e
f
e
g
Kululanga , Mabedi Kgositau , Eva Manyedi , Sheila Shaibu & Susan C.D. Wright a
African Unit for Transdisciplinary Health Research, North-West University Potchefstroom Campus, South Africa
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b
Department of Medical and Surgical Nursing, University of Malawi, Lilongwe, Malawi
c
Department of Community and Mental Health Nursing, University of Malawi, Lilongwe, Malawi d
Postgraduate Studies and Research, University of Malawi, Lilongwe, Malawi
e
School of Nursing, University of Botswana, Gaborone, Botswana
f
Quality Assurance, North-West University, Mafikeng Campus, South Africa
g
Adelaide Tambo School of Nursing Science, Tshwane University of Technology, Pretoria, South Africa Published online: 22 Nov 2013.
To cite this article: Minrie Greeff, Lignet M. Chepuka, Winnie Chilemba, Angela F. Chimwaza, Lucy I. Kululanga, Mabedi Kgositau, Eva Manyedi, Sheila Shaibu & Susan C.D. Wright (2014) Using an innovative mixed method methodology to investigate the appropriateness of a quantitative instrument in an African context: Antiretroviral treatment and quality of life, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 26:7, 817-820, DOI: 10.1080/09540121.2013.859651 To link to this article: http://dx.doi.org/10.1080/09540121.2013.859651
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any
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AIDS Care, 2014 Vol. 26, No. 7, 817–820, http://dx.doi.org/10.1080/09540121.2013.859651
Using an innovative mixed method methodology to investigate the appropriateness of a quantitative instrument in an African context: Antiretroviral treatment and quality of life Minrie Greeffa*, Lignet M. Chepukab, Winnie Chilembac, Angela F. Chimwazad, Lucy I. Kululangac, Mabedi Kgositaue, Eva Manyedif, Sheila Shaibue and Susan C.D. Wrightg a
African Unit for Transdisciplinary Health Research, North-West University Potchefstroom Campus, South Africa; bDepartment of Medical and Surgical Nursing, University of Malawi, Lilongwe, Malawi; cDepartment of Community and Mental Health Nursing, University of Malawi, Lilongwe, Malawi; dPostgraduate Studies and Research, University of Malawi, Lilongwe, Malawi; eSchool of Nursing, University of Botswana, Gaborone, Botswana; fQuality Assurance, North-West University, Mafikeng Campus, South Africa; g Adelaide Tambo School of Nursing Science, Tshwane University of Technology, Pretoria, South Africa
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(Received 5 December 2012; final version received 21 October 2013) The relationship between quality of life (QoL) and antiretroviral treatment (ART) has mainly been studied using quantitative scales often not appropriate for use in other contexts and without taking peoples’ lived experiences into consideration. Sub-Saharan Africa has the highest incidence of HIV and AIDS yet there is paucity in research done on QoL. This research report is intended to give an account of the use of a mixed method convergent parallel design as a novice approach to evaluate an instrument’s context specificity, appropriateness and usefulness in another context for which it was designed. Data were collected through a qualitative exploration of the experiences of QoL of people living with HIV or AIDS (PLHA) in Africa since being on ART, as well as the quantitative measurements obtained from the HIV/AIDS-targeted quality of life (HAT-QoL) instrument. This study was conducted in three African countries. Permission and ethical approval to conduct the study were obtained. Purposive voluntary sampling was used to recruit PLHA through mediators working in community-based HIV/AIDS organisations and health clinics. Interviews were analysed through open coding and the quantitative data through descriptive statistics and the Cronbach’s alpha coefficient. A much wider range and richness of experiences were expressed than measured by the HAT-QoL instrument. Although an effective instrument for use in the USA, it was found not to be sensitive, appropriate and useful in an African context in its present form. The recommendations focus on adapting the instrument using the data from the in-depth interviews or to develop a context-sensitive instrument that could measure QoL of PLHA in Africa Keywords: Africa; antiretroviral treatment; HIV and AIDS; mixed methods; nursing; quality of life
Introduction and background The most commonly used indicator of internal consistency of an instrument is the Cronbach’s alpha coefficient (Pallant, 2007). This research report discusses a novice combination of qualitative and quantitative methodologies to evaluate whether the HIV/AIDS-targeted quality of life (HAT-QoL) instrument (Holmes & Shea, 1998), often used by researchers in Africa, is context sensitive, appropriate and useful in the African context. QoL measures should be culturally appropriate and a good quality measure is indispensable (Masquillier, Wouters, Loos, & Nöstlinger, 2012). Antiretroviral treatment (ART) has been used in the West since 1987 (Abdool Karim & Abdool Karim, 2005) following many studies on the use of ART and QoL. ART has both short-term and long-term side-effects (Montesorri, Press, Harris, Akagi, & Montaner, 2004) on people’s lived experience, adherence to ART and QoL (Gill, Griffith, Skinner, Gorbach, & Wilson, 2002; Kyajja, Muliira, & Ayebare, 2010). Most studies on *Corresponding author. Email: [email protected] © 2013 Taylor & Francis
ART and QoL focus on the aforementioned aspects and on support, while few investigate people living with HIV or AIDS’s (PLHA) coping and lived experiences since being on ART (Corless, Nicholas, Davis, Dolan, & McGibbon, 2005; Erikson, Bratt, Sandstrom, & Nordstrom, 2005; Kyajja, et al., 2010; Mannheimer et al., 2005; Reis, Santos, & Gir, 2012; Tramarin et al., 2004). In Africa, ART only became available to very ill PLHA (CD4 count below 200) since 2002 (Peltzer & Ramlagan, 2011), with some places in South Africa only receiving ART since 2007. The assessment of QoL is central to understanding how people are affected by the HIV infection (Venter, Gericke, & Becker, 2009). De Boer, Van Dam, and Sprangers (1995) identified 11 health-related, QoL instruments for HIV-infected patients. Tsasis (2000) reported on the Medical Outcomes Study-Based QoL measure. Some studies in Africa used the HAT-QoL instrument of Holmes and Shea (1998, 1999) (Dlamini et al. 2009; Greeff et al. 2010). Mannheimer et al. (2005) and Corless et al. (2005, 2009) linked adherence,
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side-effects and QoL. Fatiregun, Mofolorunsho, and Osagbemi (2009) studied the WHOQOL-HIV brief instrument. The latest instrument is the PROQOL-HIV of Duracinsky et al. (2012). Due to the rapid evolution of HIV medicine, instrument developers need to regularly review and update measures of QoL (Ho, Twinn, & Cheng, 2010). Participants view ART as a trade-off between poorer QoL and being alive (Park-Wyllie, Strike, Antoniou, & Bayoumi, 2007). Phaladze et al. (2005) reported that in four sub-Saharan Africa countries with a low roll-out rate of ART, ART often increased life satisfaction. Kabore et al. (2010) found that patients in sub-Saharan Africa exposed to community-based services experienced a more rapid increase in CD4 counts and healthrelated QoL indicators. In Uganda, Kyajja et al. (2010) focused on side-effects, while a Malawian study of the improvement in QoL reports that little is known about how QoL and needs/survival strategies of PLHA vary in less-developed regions (Fan, Kuo, Kao, Morisky, & Chen, 2011). In South Africa, Rosen et al. (2010) found a large and sustained improvement of patients’ symptom prevalence, general health, ability to perform normal activities and employment status through the first three years with ART. Stigma is described as influencing QoL and as an obstacle towards receiving medication (Dlamini et al., 2009; Greeff et al., 2010; Makoae et al., 2009). Insufficient literature exists on the African situation, and this study aimed to explore the QoL experienced by PLHA in Africa since using ART; and how the qualitative data compares with results obtained through the HAT-QoL instrument that was developed in the USA, but which is currently being used in several studies in Africa. Objectives The study combined the data from the qualitative exploration and description of the QoL experienced by PLHA in Africa since being on ART, with the quantitative measurements from the HAT-QoL instrument, to evaluate the context specificity, appropriateness and usefulness of the HAT-QoL instrument. Research methodology A mixed method convergent parallel design (Creswell & Plano Clark, 2011) was used. Thorne’s (2008) qualitative interpretive description approach and the quantitative survey design (Creswell, 2009) were combined. In-depth interviews about PLHA’s lived experiences of QoL since being on ART were directly followed by administering the HAT-QoL instrument. The population was PLHA on ART in three African countries (South Africa, Botswana
and Malawi). Because South Africa is much bigger than the other two countries, only the rural North West Province in South Africa was included. Purposive voluntary sampling was used with a final sample size of 50 PLHA (30 females and 20 males). The gender distribution is relevant for Africa, where infection rates are higher amongst females. Inclusion criteria were diagnosis of HIV within six months; being on ART for the past six months; and being 18 years old. Permission and ethical approval were obtained from the ethical committees of the North-West University, University of Malawi and University of Botswana, as well as the respective health departments. The PLHA were recruited through mediators from community-based HIV/AIDS organisations and clinics. Participants were informed about the purpose of the study, their voluntary participation and their freedom to withdraw at any time. Benefits were explained, e.g., the opportunity to talk to someone, as well as the possible risk of emotional discomfort, although support would be available. No incentives were offered. All participants gave written consent. Interviews were conducted in private interruption-free venues and only an open-ended question was asked: “Tell me about your experience of QoL since you have been on ART”. The interviews were audio-taped, translated into English and verified. Fieldnotes were made after each interview. The researchers adhered to rigour, using the approach of Lincoln and Guba (in Krefting, 1991) to ensure truth, value, applicability, consistency and neutrality. The transcribed interviews were analysed used the open coding technique of Tesch (in Creswell, 2009) keeping each country’s data separate. An independent co-coder was used and consensus reached through discussions. Because no big dissimilarities were found amongst the three countries, the datasets were pooled. Data-sets were merged during analysis as well as during interpretation, moving between the qualitative and quantitative data-sets. With the analysis of the interviews in mind, the items of the instrument were evaluated for face validity. Themes identified in the interviews were compared with the dimensions of the instrument. The in-depth interviews were followed by the HATQoL (Holmes & Shea, 1998), a 34-item, HIV diseasespecific instrument that measures nine dimensions scored on a Likert-scale ranked from 1 to 5, to produce a final dimension score of 0–100. Holmes and Shea (1998, 1999) reported on the development and validation of the scale. The quantitative data-sets were statistically analysed by means of descriptive statistics and Cronbach’s alpha coefficient. The mean and response rate for each item were established.
AIDS Care
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Results The analyses of the in-depth interviews indicated that only 18 of the 34 items can be used in the African context. A much wider range and richness were found in the qualitative data than in the dimensions set out in the instrument. PLHA focused on the positive strengths and gains since being on ART and less on worries: “Amazing how I suddenly got up and had the strength”; “I am focusing on my life now”. One of their biggest gains was to enter the job market again and feel they have a future. Problematic areas included disclosure issues, finances and nutritional meals. Seven of the nine dimensions had a Cronbach alpha coefficient above 0.5 and only 26 of the 34 items could be used. There was a low response rate for dimensions 4 (“financial worries”) and 6 (“HIV mastery”). Using both the qualitative and the quantitative data, only 11 of the 34 items were found to be usable.
Conclusion The appropriateness and usefulness of an instrument may not reflect the true picture if only quantitative measures are used to evaluate the context specificity. In this evaluation, using both qualitative and quantitative measures, PLHA in Africa expressed experiencing increased QoL since being on ART. A much wider and richer range of experiences of QoL were expressed during the interviews than covered by the items of the instrument. The HAT-QoL instrument was not sensitive to or appropriate for use in the African context. As ART has only become available in Africa recently, people are still in euphoria about its positive effects. Long-term sideeffects might change these positive experiences in future.
Limitations of the study The interviews were conducted by a different researcher in each country affecting the quality of the interviews. Information may have been inaccurately translated to English.
Recommendations The context specificity, appropriateness and usefulness of an instrument should be evaluated through a combination of both qualitative and quantitative methods. If only one method is used, researchers may reach premature conclusions. The HAT-QoL instrument is inappropriate for an African setting in its current form. The instrument should be adapted or a QoL instrument, that is Africa sensitive, should be developed and validated. A follow-up study to compare the long-term use of ART
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and QoL in the West and Africa would be meaningful in the future. References Abdool Karim, S. S., & Abdool Karim, Q. (2005). HIV/AIDS in South Africa. Cape Town: Cambridge University Press. Corless, I. B., Nicholas, P. K., Davis, S. M., Dolan, S. A., & McGibbon, C. A. (2005). Symptom status, medication adherence, and quality of life in HIV disease. Journal of Hospice and Palliative Nursing, 7(3), 129–138. doi:10.1097/00129191-200505000-00005 Corless, I. B., Wantland, D., Bhengu, B., McInerney, P., Ncama, B., Nicholas, P. K., … Davis, S. M. (2009). HIV and tuberculosis in Durban, South Africa: Adherence to two medication regiments. AIDS Care, 21, 1106–1113. doi:10.1080/09540120902729932 Creswell, J. W. (2009). Research design. Qualitative, quantitative and mixed methods approaches (3rd ed.). Los Angeles, CA: Sage. Creswell, J. W., & Plano Clark, V. L. (2011). Designing and conducting mixed methods research (2nd ed.). Thousand Oaks, CA: Sage. De Boer, J. B., Van Dam, F. S. A. M., & Sprangers, M. A. G. (1995). Health-related quality-of-life evaluation in HIVinfected patients: A review of the literature. Pharmacoeconomics, 8, 291–304. doi:10.2165/00019053-19950804000004 Dlamini, P. S., Wantland, D., Makoae, L., Chirwa, M., Kohi, T. W., Greeff, M., … Holzemer, W. L. (2009). HIV stigma and missed medication in HIV-positive people in five African countries. AIDS Patient Care and STDs, 23, 377–387. doi:10.1089/apc.2008.0164 Duracinsky, M., Herrmann, S., Berzins, B., Armstrong, A. R., Kohli, R., Le Coeur, S., … Chassany, O. (2012). The development of PROQOL-HIV: An international instrument to assess the health-related quality of life of persons living with HIV/AIDS. Journal of Acquired Immune Deficiency Syndrome, 59, 498–505. doi:10.1097/QAI.0b0 13e318245cafe Erikson, L. E., Bratt, G. A., Sandstrom, E., & Nordstrom, G. (2005). The two-year impact of first generation protease inhibitor based antiretroviral therapy (PI-ART) on healthrelated quality of life. Health Quality Life Outcomes, 4(3), 32. doi:10.1186/1477-7525-3-32 Fan, A. P., Kuo, H. C., Kao, D. Y., Morisky, D. E., & Chen, Y. A. (2011). Quality of life and needs assessment on people living with HIV and AIDS in Malawi. AIDS Care, 23, 287–302. doi:10.1080/09540121.2010.507742 Fatiregun, A., Mofolorunsho, K., & Osagbemi, K. (2009). Quality of life of people living with HIV/AIDS in Kogi State, Nigeria. Benin Journal of Postgraduate Medicine, 11(1), 21–27. doi:10.4314/bjpm.v11i1.48823 Gill, C. J., Griffith, J. L., Skinner, S., Gorbach, S. L., & Wilson, I. B. (2002). Relationships of HIV viral loads, CD4 counts, and HAART use to health-related quality of life. Journal of Acquired Immune Deficiency Syndromes, 30, 485–492. doi:10.1097/00126334-200208150-00004 Greeff, M., Uys, L. R., Wantland, D., Makoae, L., Chirwa, M., Dlamini, P., … Holzemer, W. L. (2010). Perceived HIV stigma and life satisfaction among persons living with HIV infection in five African countries: A longitudinal study. International Journal of Nursing Studies, 47, 475–486. doi:10.1016/j.ijnurstu.2009.09.008
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Ho, C.-F., Twinn, S., & Cheng, K. K. F. (2010). Quality of life constructs of Chinese people living with HIV/AIDS. Psychology, Health & Medicine, 15, 210–219. doi:10.1080/13548501003623948 Holmes, W. C., & Shea, J. A. (1998). A new HIV/AIDStargeted quality of life (HAT-QoL) instrument: Development, reliability, and validity. Medical Care, 36, 138–154. doi:10.1097/00005650-199802000-00004 Holmes, W. C., & Shea, J. A. (1999). Two approaches to measuring quality of life in the HIV/AIDS population: HAT-QoL and MOS-HIV. Quality of Life Research, 8, 515–527. doi:10.1023/A:1008931006866 Kabore, I., Bloem, J., Etheredge, G., Obiero, W., Wanless, S., Doykos, P., … Tiam, A. (2010). The effect of communitybased support services on clinical efficacy and health-related quality of life in HIV/AIDS patients in resource-limited settings in Sub-Saharan Africa. AIDS Patient Care, 24, 581– 594. doi:10.1089/apc.2009.0307 Krefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. The American Journal of Occupational Therapy, 45, 214–222. doi:10.5014/ajot.45.3.214 Kyajja, R., Muliira, J. K., & Ayebare, E. (2010). Personal coping strategies for managing the side effects of antiretroviral therapy among patients at an HIV/AIDS clinic in Uganda. African Journal of AIDS Research, 9, 205–211. doi:10.2989/16085906.2010.530171 Makoae, L. N., Portillo, C., Uys, L. R., Dlamini, P. S., Greeff, M., Chirwa, M., … Holzemer, W. L. (2009). The impact of taking or not taking ARTs on HIV stigma as reported by persons living with HIV infection in five African countries. AIDS Care, 21, 1357–1362. doi:10.1080/09540120902862576 Mannheimer, S. B., Matts, J., Telzak, E., Chesney, M., Child, C., Wu, A. W., & Friedland, G. (2005). Quality of life in HIVinfected individuals receiving antiretroviral therapy is related to adherence. AIDS Care, 17, 10–22. doi:10.1080/ 09540120412331305098 Masquillier, C., Wouters, E., Loos, J., & Nöstlinger, C. (2012). Measuring health-related quality of life of HIV-positive adolescents in resource-constrained settings. PLoS ONE, 7, e40628. doi:10.1371/journal.pone.0040628 Montesorri, V., Press, N., Harris, M., Akagi, L., & Montaner, J. S. G. (2004). Adverse effects of antiretroviral therapy
for HIV infection. Canadian Medical Association Journal, 170, 229–238. Pallant, J. (2007). Checking the reliability of a scale. In J. Pallant (3rd ed.), SPSS survival manual (pp. 95–99). Sydney: Ligare Book. Park-Wyllie, L. Y., Strike, C. S., Antoniou, T., & Bayoumi, A. M. (2007). Adverse quality of life consequences of antiretroviral medication. AIDS Care, 19, 252–257. doi:10.1080/0954 0120600774180 Peltzer, K., & Ramlagan, S. (2011). Perceived stigma among patients receiving antiretroviral therapy: A prospective study in KwaZulu-Natal, South Africa. AIDS Care, 23, 60–68. doi:10.1080/09540121.2010.498864 Phaladze, N. A., Human, S., Dlamini, S. B., Hulela, E. B., Hadebe, I. M., Sukati, N. A., … Holzemer, W. L. (2005). Quality of life and the concept of “Living well” with HIV/ AIDS in sub-Saharan Africa. Journal of Nursing Scholarship, 37(2), 120–126. doi:10.1111/j.1547-5069.2005.00023.x Reis, R. K., Santos, C. B., & Gir, E. (2012). Quality of life among Brazilian women living with HIV/AIDS. AIDS Care, 24, 626–634. doi:10.1080/09540121.2011.630345 Rosen, S., Larson, B., Brennan, A., Long, L., Fox, M., Mongwenyana, C., … Sanne, I. (2010). Economic outcomes of patients receiving antiretroviral therapy for HIV/ AIDS in South Africa are sustained through three years on treatment. PLoS ONE, 5, e12731. doi:10.1371/journal. pone.0012731 Thorne, S. (2008). Interpretive description. Walnut Creek: Left Coast Press. Tramarin, A., Parise, N., Campostrini, S., Yin, D. D., Postma, M. J., Lyu, R., … Starace, F. (2004). Association between diarrhea and quality of life in HIV-infected patients receiving highly active antiretroviral therapy. Quality of Life Research, 13, 243–250. doi:10.1023/B:QURE.000001 5282.24774.36 Tsasis, P. (2000). Health-related quality-of-life measurements in HIV/AIDS care. AIDS Patient Care and STD, 14, 427–438. doi:10.1089/108729100416641 Venter, E., Gericke, G. J., & Becker, P. J. (2009). Nutritional status, quality of life and CD4 cell count of adults living with HIV/AIDS in the Ga-Rankuwa area (South Africa). South African Journal of Clinical Nutrition, 22(3), 124–129.
AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
Using an innovative mixed method methodology to investigate the appropriateness of a quantitative instrument in an African context: Antiretroviral treatment and quality of life a
b
c
d
Minrie Greeff , Lignet M. Chepuka , Winnie Chilemba , Angela F. Chimwaza , Lucy I. c
e
f
e
g
Kululanga , Mabedi Kgositau , Eva Manyedi , Sheila Shaibu & Susan C.D. Wright a
African Unit for Transdisciplinary Health Research, North-West University Potchefstroom Campus, South Africa
Click for updates
b
Department of Medical and Surgical Nursing, University of Malawi, Lilongwe, Malawi
c
Department of Community and Mental Health Nursing, University of Malawi, Lilongwe, Malawi d
Postgraduate Studies and Research, University of Malawi, Lilongwe, Malawi
e
School of Nursing, University of Botswana, Gaborone, Botswana
f
Quality Assurance, North-West University, Mafikeng Campus, South Africa
g
Adelaide Tambo School of Nursing Science, Tshwane University of Technology, Pretoria, South Africa Published online: 22 Nov 2013.
To cite this article: Minrie Greeff, Lignet M. Chepuka, Winnie Chilemba, Angela F. Chimwaza, Lucy I. Kululanga, Mabedi Kgositau, Eva Manyedi, Sheila Shaibu & Susan C.D. Wright (2014) Using an innovative mixed method methodology to investigate the appropriateness of a quantitative instrument in an African context: Antiretroviral treatment and quality of life, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 26:7, 817-820, DOI: 10.1080/09540121.2013.859651 To link to this article: http://dx.doi.org/10.1080/09540121.2013.859651
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any
Downloaded by [Chinese University of Hong Kong] at 17:28 20 February 2015
form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
AIDS Care, 2014 Vol. 26, No. 7, 817–820, http://dx.doi.org/10.1080/09540121.2013.859651
Using an innovative mixed method methodology to investigate the appropriateness of a quantitative instrument in an African context: Antiretroviral treatment and quality of life Minrie Greeffa*, Lignet M. Chepukab, Winnie Chilembac, Angela F. Chimwazad, Lucy I. Kululangac, Mabedi Kgositaue, Eva Manyedif, Sheila Shaibue and Susan C.D. Wrightg a
African Unit for Transdisciplinary Health Research, North-West University Potchefstroom Campus, South Africa; bDepartment of Medical and Surgical Nursing, University of Malawi, Lilongwe, Malawi; cDepartment of Community and Mental Health Nursing, University of Malawi, Lilongwe, Malawi; dPostgraduate Studies and Research, University of Malawi, Lilongwe, Malawi; eSchool of Nursing, University of Botswana, Gaborone, Botswana; fQuality Assurance, North-West University, Mafikeng Campus, South Africa; g Adelaide Tambo School of Nursing Science, Tshwane University of Technology, Pretoria, South Africa
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(Received 5 December 2012; final version received 21 October 2013) The relationship between quality of life (QoL) and antiretroviral treatment (ART) has mainly been studied using quantitative scales often not appropriate for use in other contexts and without taking peoples’ lived experiences into consideration. Sub-Saharan Africa has the highest incidence of HIV and AIDS yet there is paucity in research done on QoL. This research report is intended to give an account of the use of a mixed method convergent parallel design as a novice approach to evaluate an instrument’s context specificity, appropriateness and usefulness in another context for which it was designed. Data were collected through a qualitative exploration of the experiences of QoL of people living with HIV or AIDS (PLHA) in Africa since being on ART, as well as the quantitative measurements obtained from the HIV/AIDS-targeted quality of life (HAT-QoL) instrument. This study was conducted in three African countries. Permission and ethical approval to conduct the study were obtained. Purposive voluntary sampling was used to recruit PLHA through mediators working in community-based HIV/AIDS organisations and health clinics. Interviews were analysed through open coding and the quantitative data through descriptive statistics and the Cronbach’s alpha coefficient. A much wider range and richness of experiences were expressed than measured by the HAT-QoL instrument. Although an effective instrument for use in the USA, it was found not to be sensitive, appropriate and useful in an African context in its present form. The recommendations focus on adapting the instrument using the data from the in-depth interviews or to develop a context-sensitive instrument that could measure QoL of PLHA in Africa Keywords: Africa; antiretroviral treatment; HIV and AIDS; mixed methods; nursing; quality of life
Introduction and background The most commonly used indicator of internal consistency of an instrument is the Cronbach’s alpha coefficient (Pallant, 2007). This research report discusses a novice combination of qualitative and quantitative methodologies to evaluate whether the HIV/AIDS-targeted quality of life (HAT-QoL) instrument (Holmes & Shea, 1998), often used by researchers in Africa, is context sensitive, appropriate and useful in the African context. QoL measures should be culturally appropriate and a good quality measure is indispensable (Masquillier, Wouters, Loos, & Nöstlinger, 2012). Antiretroviral treatment (ART) has been used in the West since 1987 (Abdool Karim & Abdool Karim, 2005) following many studies on the use of ART and QoL. ART has both short-term and long-term side-effects (Montesorri, Press, Harris, Akagi, & Montaner, 2004) on people’s lived experience, adherence to ART and QoL (Gill, Griffith, Skinner, Gorbach, & Wilson, 2002; Kyajja, Muliira, & Ayebare, 2010). Most studies on *Corresponding author. Email: [email protected] © 2013 Taylor & Francis
ART and QoL focus on the aforementioned aspects and on support, while few investigate people living with HIV or AIDS’s (PLHA) coping and lived experiences since being on ART (Corless, Nicholas, Davis, Dolan, & McGibbon, 2005; Erikson, Bratt, Sandstrom, & Nordstrom, 2005; Kyajja, et al., 2010; Mannheimer et al., 2005; Reis, Santos, & Gir, 2012; Tramarin et al., 2004). In Africa, ART only became available to very ill PLHA (CD4 count below 200) since 2002 (Peltzer & Ramlagan, 2011), with some places in South Africa only receiving ART since 2007. The assessment of QoL is central to understanding how people are affected by the HIV infection (Venter, Gericke, & Becker, 2009). De Boer, Van Dam, and Sprangers (1995) identified 11 health-related, QoL instruments for HIV-infected patients. Tsasis (2000) reported on the Medical Outcomes Study-Based QoL measure. Some studies in Africa used the HAT-QoL instrument of Holmes and Shea (1998, 1999) (Dlamini et al. 2009; Greeff et al. 2010). Mannheimer et al. (2005) and Corless et al. (2005, 2009) linked adherence,
Downloaded by [Chinese University of Hong Kong] at 17:28 20 February 2015
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side-effects and QoL. Fatiregun, Mofolorunsho, and Osagbemi (2009) studied the WHOQOL-HIV brief instrument. The latest instrument is the PROQOL-HIV of Duracinsky et al. (2012). Due to the rapid evolution of HIV medicine, instrument developers need to regularly review and update measures of QoL (Ho, Twinn, & Cheng, 2010). Participants view ART as a trade-off between poorer QoL and being alive (Park-Wyllie, Strike, Antoniou, & Bayoumi, 2007). Phaladze et al. (2005) reported that in four sub-Saharan Africa countries with a low roll-out rate of ART, ART often increased life satisfaction. Kabore et al. (2010) found that patients in sub-Saharan Africa exposed to community-based services experienced a more rapid increase in CD4 counts and healthrelated QoL indicators. In Uganda, Kyajja et al. (2010) focused on side-effects, while a Malawian study of the improvement in QoL reports that little is known about how QoL and needs/survival strategies of PLHA vary in less-developed regions (Fan, Kuo, Kao, Morisky, & Chen, 2011). In South Africa, Rosen et al. (2010) found a large and sustained improvement of patients’ symptom prevalence, general health, ability to perform normal activities and employment status through the first three years with ART. Stigma is described as influencing QoL and as an obstacle towards receiving medication (Dlamini et al., 2009; Greeff et al., 2010; Makoae et al., 2009). Insufficient literature exists on the African situation, and this study aimed to explore the QoL experienced by PLHA in Africa since using ART; and how the qualitative data compares with results obtained through the HAT-QoL instrument that was developed in the USA, but which is currently being used in several studies in Africa. Objectives The study combined the data from the qualitative exploration and description of the QoL experienced by PLHA in Africa since being on ART, with the quantitative measurements from the HAT-QoL instrument, to evaluate the context specificity, appropriateness and usefulness of the HAT-QoL instrument. Research methodology A mixed method convergent parallel design (Creswell & Plano Clark, 2011) was used. Thorne’s (2008) qualitative interpretive description approach and the quantitative survey design (Creswell, 2009) were combined. In-depth interviews about PLHA’s lived experiences of QoL since being on ART were directly followed by administering the HAT-QoL instrument. The population was PLHA on ART in three African countries (South Africa, Botswana
and Malawi). Because South Africa is much bigger than the other two countries, only the rural North West Province in South Africa was included. Purposive voluntary sampling was used with a final sample size of 50 PLHA (30 females and 20 males). The gender distribution is relevant for Africa, where infection rates are higher amongst females. Inclusion criteria were diagnosis of HIV within six months; being on ART for the past six months; and being 18 years old. Permission and ethical approval were obtained from the ethical committees of the North-West University, University of Malawi and University of Botswana, as well as the respective health departments. The PLHA were recruited through mediators from community-based HIV/AIDS organisations and clinics. Participants were informed about the purpose of the study, their voluntary participation and their freedom to withdraw at any time. Benefits were explained, e.g., the opportunity to talk to someone, as well as the possible risk of emotional discomfort, although support would be available. No incentives were offered. All participants gave written consent. Interviews were conducted in private interruption-free venues and only an open-ended question was asked: “Tell me about your experience of QoL since you have been on ART”. The interviews were audio-taped, translated into English and verified. Fieldnotes were made after each interview. The researchers adhered to rigour, using the approach of Lincoln and Guba (in Krefting, 1991) to ensure truth, value, applicability, consistency and neutrality. The transcribed interviews were analysed used the open coding technique of Tesch (in Creswell, 2009) keeping each country’s data separate. An independent co-coder was used and consensus reached through discussions. Because no big dissimilarities were found amongst the three countries, the datasets were pooled. Data-sets were merged during analysis as well as during interpretation, moving between the qualitative and quantitative data-sets. With the analysis of the interviews in mind, the items of the instrument were evaluated for face validity. Themes identified in the interviews were compared with the dimensions of the instrument. The in-depth interviews were followed by the HATQoL (Holmes & Shea, 1998), a 34-item, HIV diseasespecific instrument that measures nine dimensions scored on a Likert-scale ranked from 1 to 5, to produce a final dimension score of 0–100. Holmes and Shea (1998, 1999) reported on the development and validation of the scale. The quantitative data-sets were statistically analysed by means of descriptive statistics and Cronbach’s alpha coefficient. The mean and response rate for each item were established.
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Results The analyses of the in-depth interviews indicated that only 18 of the 34 items can be used in the African context. A much wider range and richness were found in the qualitative data than in the dimensions set out in the instrument. PLHA focused on the positive strengths and gains since being on ART and less on worries: “Amazing how I suddenly got up and had the strength”; “I am focusing on my life now”. One of their biggest gains was to enter the job market again and feel they have a future. Problematic areas included disclosure issues, finances and nutritional meals. Seven of the nine dimensions had a Cronbach alpha coefficient above 0.5 and only 26 of the 34 items could be used. There was a low response rate for dimensions 4 (“financial worries”) and 6 (“HIV mastery”). Using both the qualitative and the quantitative data, only 11 of the 34 items were found to be usable.
Conclusion The appropriateness and usefulness of an instrument may not reflect the true picture if only quantitative measures are used to evaluate the context specificity. In this evaluation, using both qualitative and quantitative measures, PLHA in Africa expressed experiencing increased QoL since being on ART. A much wider and richer range of experiences of QoL were expressed during the interviews than covered by the items of the instrument. The HAT-QoL instrument was not sensitive to or appropriate for use in the African context. As ART has only become available in Africa recently, people are still in euphoria about its positive effects. Long-term sideeffects might change these positive experiences in future.
Limitations of the study The interviews were conducted by a different researcher in each country affecting the quality of the interviews. Information may have been inaccurately translated to English.
Recommendations The context specificity, appropriateness and usefulness of an instrument should be evaluated through a combination of both qualitative and quantitative methods. If only one method is used, researchers may reach premature conclusions. The HAT-QoL instrument is inappropriate for an African setting in its current form. The instrument should be adapted or a QoL instrument, that is Africa sensitive, should be developed and validated. A follow-up study to compare the long-term use of ART
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