Use of a Mixed Methods Approach to Investigate the Support Needs of Older Caregivers to Family Members Affected by HIV and AIDS in South Africa

Abstract

A mixed methods approach was used to investigate the support needs of older persons in South Africa who care for children and grandchildren infected with or affected by HIV/AIDS. A total of 305 caregivers in rural and urban areas were surveyed, and 10 case studies were constructed from follow-up interview data. Nine key informants in government and nongovernmental organizations were interviewed. Results of the analyses of the three data sets were triangulated. The outcomes indicated the impact of caregiving on the caregivers’ health and well-being, and areas in which they need support and policy intervention. The utilization of a mixed methods research design demonstrated two benefits: It increased comprehensiveness of the results and it enhanced understanding of HIV/AIDS-related caregiving.

Keywords

HIV/AIDS older caregivers policy nongovernment organizations

The care management of the HIV and AIDS epidemic, and a reduction in HIV prevalence and control of the spread of the disease have been major concerns of the South African government since the early 1990s. Some actions that the government has taken to address the problem have been to operate a mother to child prevention program (MTCT; Coovadia, 2005), a voluntary counseling and testing (VCT) program, and programs to promote the use of condoms and to combat sexually transmitted infections (STIs; Avert, 2005; Coetzee & Johnson, 2005). In addition, the government has developed policy on blood safety and a national HIV/AIDS strategic plan (Heyns & Swanevelder, 2005). However, the interventions have been primarily targeted at young and middle-aged persons. No attention has been given in policies and programs to older persons who are equally at risk of HIV infection and are typically burdened with informal caregiving to persons infected with or affected by the disease (Ferreira, Keikelame, & Mosaval, 2001; Petros, 2010).

Knowledge on the prevalence, spread, and impact of the disease in South Africa has emanated primarily from statistics on infection rates in expectant women who attend public antenatal clinics run by the National Department of Health, South Africa (2004, 2005, 2007) and national surveys conducted by the Human Sciences Research Council (Shisana et al., 2008; Shisana, Rehle, & Simbayi, 2005; Shisana & Simbayi, 2002). Other studies have been conducted on effects of the epidemic on orphaned and vulnerable children (OVC; Giese, Meintjies, Croke, & Chamberlain, 2003; Lang, 2005; Richter, Manegold, & Pather, 2004). Studies on the impact of the disease on older persons in South Africa and in certain other African countries have mainly focused on associated morbidity and mortality rates (Ferreira et al., 2001; Jackson, 2002; World Health Organization [WHO], 2002) and resultant dysfunction in affected households (Dayton & Ainsworth, 2002; Ellis & Muschkin, 1996; Hosegood, Preston-Whyte, & Busza, 2007). Small, localized qualitative studies in South Africa, although not focused on AIDS, have assessed the perceived needs of older persons in poor settings (Møller & Nkosi, 1992; O’Brien & Gillis, 1994; Keikelame, 2000; Mosaval & Ferreira, 2000; Ferreira & Van Dongen, 2004). With the exception of studies by Petros (2010), Ogunmenfun (2007) and Ferreira et al. (2001), few have prioritized the needs of older caregivers affected by HIV and AIDS for government intervention.

“Older caregivers” were defined as individuals aged 50 years and older who care for a family member, or members, infected with or affected by a debilitating chronic disease—in this case HIV and AIDS, and orphaned and vulnerable children. Reasons for setting a cut-off age to 50 years, instead of 60 years, for eligibility for inclusion in the sample were as follows: (a) Individuals aged 50 to 59 years will soon enter the rank of “older adults,” and future resource requirements of the older population can be informed by the number and situation of persons affected by HIV and AIDS in this age category. Such requirements include social security, health care, and institutional care; (b) African society traditionally views persons once they reach the age of 50 years as old and responds to them accordingly (WHO, 2001); (c) studies on older caregivers to persons living with HIV and AIDS (PLWHA) and OVC conducted by Ferreira et al. (2001) in the Western Cape Province and others lowered the cut-off age to 50 years in order to recruit a sufficiently large sample of carers. Carers in their 50s typically care for adult children with AIDS who are in their 20s and 30s and have young children for whom the older caregiver now cares.

Research that uses a mixed methods approach to describe the impact of HIV/AIDS on these persons is scarce. A lack of studies from such an approach may have contributed to a downplaying of the multidimensionality and complexity of the effects of the disease on this vulnerable group. The employment of a mixed methods approach in such an investigation could provide for the integration of analyzed data from subpopulations targeted in the study (Creswell, 2003; Tashakkori & Teddlie, 2003), all of which might have a particular experience and perception of the impact of the problem—in this case, effects of HIV and AIDS. The outcomes of a study employing such methodology could contribute to a comprehensive description of the multifaceted nature of the problem and the design and implementation of appropriate intervention to support the caregivers through the efficient management of the effects of the epidemic at household and community levels.

To my knowledge, no study in this problem area in South Africa has employed a theoretical framework to analyze and understand HIV and AIDS caregiving at a household level, apart from a study by Ogunmenfun (2007) who used family stress theory (Hill, 1949). Ogumenfun used this theory to explain family responses or adjustments to stresses visited on a household by HIV/AIDS adult morbidity and mortality, with a particular focus on older women as caregivers.

Against this background, a study was undertaken in three of South Africa’s nine provinces to investigate the effects of the HIV and AIDS epidemic on older persons who are caregivers to PLWHA and OVC. The study sought to identify areas in which the caregivers would benefit from government intervention to support them in their contribution to the management of the epidemic at a household level. The study would be conducted using a mixed methods approach in which results of analyses of multiple data sets would be triangulated to understand the complex situation of and difficulties experienced by caregivers in this situation comprehensively.

Two research questions were formulated for the investigation based on the following assumption: Caregiving in households affected by HIV and AIDS is largely unidirectional—from caregivers to PLWHA and OVC, and reciprocation from care recipients is limited.

Research Question 1: What, therefore, are challenges and support needs of older caregivers in such households in South Africa?

Research Question 2: What are gaps in public policy in terms of the South African government’s response to the burden of care on older caregivers?

A theoretical–analytical framework was developed for the study subsequently conducted, drawing on tenets of both feminist theory (Humm, 1990) and social exchange theory (Homans, 1958). Employment of feminist theoretical perspectives would aid explanation of expected study outcomes such as why caregiving in this population is largely viewed women’s responsibility and understanding of why community-based, long-term care of vulnerable persons is largely dependent on (older) female caregivers. Social exchange theoretical perspectives would aid an examination of exchanges between household actors (i.e., caregivers, PLWHA, and OVC) that are both tangible (monetary, food, shelter, etc.) and nontangible (cooperation, respect, companionship, etc.). Together, the perspectives would provide for understanding cultural behavioral practices in this population.

A Mixed Methods Approach

A mixed methods research approach uses a combination of research methods to investigate a problem from different perspectives to obtain a holistic understanding of the problem. Both quantitative and qualitative research techniques are selected and employed, usually sequentially—or concurrently, and theoretical assumptions may guide the collection and analysis of data (see Creswell, 2003).

Considerations in employing a mixed methods approach in the present study were as follows: Different research methods and techniques have particular strengths and weaknesses, and the use of multiple methods in combination can serve to overcome such weaknesses and provide complete data (Creswell, 2003; Yount & Gittelson, 2008; Vitale, Armenakis, & Field, 2008). Quantitative surveys yield numerical data for measurement of the magnitude and spread of the problem, but on their own they neither capture the richness and complexity of factors that contribute to the problem nor describe experiential issues of living with the problem (Gergen, 1988; Morris, 1991; Patton, 1990; Schoepf, 1991). Qualitative research techniques can provide a “human context” behind the numbers but are limited in their inability to assess the extent of the problem (Levera et al., 2008). The findings of qualitative studies cannot be generalized to a population; certainly not with a similar degree of certainty that results of analyses of quantitative data can (Fowler, 2002; Skinner, 2000; Walton, 2008). Hence, single method studies on the informal management of an epidemic such as HIV and AIDS may not provide a comprehensive understanding of the problem. Consequently, findings may minimize or distort the experiences of the actors, in this case caregivers who help to manage effects of the epidemic.

The two broad methodological approaches, quantitative and qualitative, used on their own, have additional limitations. Quantitative research methods typically involve numerous variables and treatments, such as factorial designs and repeated measure designs. The designs can involve elaborate structural equation models that incorporate causal paths and the identification of the collective strength of multiple variables (Creswell, 2003). However, the data are limited in that they neither describe nor capture human aspects of the problem, such as actors’ perceptions, feelings, and views (Creswell, 2003). On the other hand, qualitative studies may be viewed by some quantitative-oriented researchers as lacking systematic procedure, and having inherent problems of reliability and validity in that the data cannot be tested statistically (Baum & Nesselhof, 1998; McQueen, 1992). In their own right, nevertheless, qualitative data offer an opportunity to derive meaningful interpretations of subjects’ experience (Hudelson, 1996; Mayan, 2001; Schurink, 1998). Indeed, it has been widely stated that qualitative techniques are better able to provide insight into complex issues and are more useful in studying new topics—or exploring topics on which little is known, than quantitative research techniques (Bowling, 1997; Creswell, 2003). Moreover, they explain or clarify quantitative findings and provide meaning to different dimensions of respondents’ experiences (Jackson & Trochim, 2002; Sproull, 1988). The approach enables actors to articulate in their own words what their day-to-day experiences are and what problems they encounter and how they overcome the problems.

The employment of multiple research methods in a single study can therefore yield results that are enriched in ways that a single method does not allow (Tashakkori & Teddlie, 1998). Moreover, it may be argued that no method on its own can provide for the gathering of comprehensive data on a full range of the human experience and behavior. In the case of older persons affected by HIV and AIDS, the effects of the epidemic at community and household levels are enormous and complex (Petros, 2010; WHO, 2002). An investigation of the impact on these persons thus calls for an innovative methodological approach to capture the nuances of the impact. A dearth of information exists moreover on the employment of such research designs in public health studies on the management of HIV and AIDS. Such gaps and limitations of earlier studies that relied on the employment of a single method thus indicate the merit of employing a mixed methods research design in the present study to identify the care burden and support needs of older caregivers who care for PLWHA and OVC.

The Empirical Study

A sequential mixed methods approach (Creswell, 2003) was employed in the study, to obtain multilevel data for analysis, the results of which would be integrated or triangulated to yield evidence to inform the development of a policy framework. Such analyses would assess the caregivers’ support needs and well-being, or lack thereof. The quantitative part of the study provided for an assessment of the extent of the problem of caregiving by older persons in both urban and nonurban settings. The qualitative part provided for gathering data to understand the burden of caregiving on these caregivers and areas in which they need formal support. Collection of qualitative data would allow for responses to be probed, insight to be gained, and narratives to be constructed on the caregivers’ knowledge and beliefs about HIV and AIDS, their caregiving experiences, and their support needs.

Analyses of the three data sets—emanating from the survey, the case studies, and interviews with key informants, obtained through the use of the multiple techniques, would be triangulated. As a research technique, triangulation helps to offset shortcomings of outcomes of analyses of multiple data sets and to corroborate findings (Creswell, 2003). In short, the use of the technique in the study would help to synergize the data gathered from two methods (quantitative and qualitative), which when combined would yield “more than the sum of the [two] approaches used independently” (White, 2002, p. 513). The study outcome would thus provide an integrated and comprehensive understanding of the support needs of older caregivers.

Implementation of the Study

The multistage, sequential mixed methods research design for the study was implemented as follows: A specially constructed data collection instrument was administered in a survey to respondents in their home by trained interviewers of the same ethnic group as the respondents, who spoke a respondent’s home language, that is, isiXhosa, isiZulu, or Afrikaans. The sampling design was as follows: A database of all registered nongovernmental organizations (NGOs) in the country was obtained from the National Department of Social Development (DoSD) and an alphabetical list drawn up of all NGOs serving clients affected by HIV and AIDS in the three study provinces. The NGOs were numbered according to province, and numbers identified randomly to select seven NGOs in each province. Fifteen households were then selected systematically from the client register lists of the seven NGOs in each province. The sampling strategy was aimed at minimizing selection of households in close proximity to one another in order to avoid creating suspicion among community dwellers that a household was affected by HIV and AIDS.

Potential respondents aged 50 years and older who were primary caregivers in selected households were invited to participate in the study. The study’s aims and what caregivers’ participation would involve were explained to them. If willing to participate in the study, the caregivers were asked to sign an informed consent form. If unable to read and write, the contents of the form were explained to them and they could give verbal consent to the fieldworker. A pamphlet with addresses of resource organizations available in the area was handed to each participant. A total of 305 households were drawn in this way in three of South Africa’s nine provinces—the Eastern Cape (EC), KwaZulu-Natal (KZN), and the Western Cape (WC) provinces. In each province, the samples represented caregivers in urban areas and nonurban areas but with lower numbers of caregivers in nonurban areas, owing to fewer NGOs operating in the area. The Eastern Cape Province was selected because of its poor public health care infrastructure and high levels of deprivation; KwaZulu-Natal was selected for its high HIV prevalence and AIDS-related mortality rates; and the Western Cape Province was selected for its comparatively well-developed public health infrastructure and low HIV prevalence rate. The situations in the three provinces differed in the above regard and comparisons of data from the three provinces would be informative.

A qualitative follow-up study was conducted in one province (WC) with a purposively selected subsample of 10 survey respondents, using an interview guide, from which case studies were later constructed. The selection criteria for the 10 respondents were “unexpected” (or unanticipated) responses provided in the survey interview and the respondent caring for both PLWHA and OVC. Such “unexpected” responses included fatalistic attitudes that AIDS is punishment from God. These interviews were conducted by the author and audio-recorded with the consent of the respondents.

Finally, nine purposively selected key informants comprising six senior managers in government and three managers of NGOs were interviewed by the author. Separate interview schedules comprising questions relating to government policy and programs on HIV and AIDS were used to interview the two sets of key informants. The interviews were guided by results of preliminary analyses of the survey and case studies data, and the extent and nature of government and NGO support for older caregivers. The selection criterion for the key informants was their presumed knowledge of government legislation, policy on HIV and AIDS, and such programs for older persons. All the interviews were audio-recorded with the permission of the informants.

The Data Collection Instruments

A brief description is given of the three data collection instruments used in the study.

Survey instrument

A semistructured survey instrument was specially constructed and included both fixed-response and open-ended items. The tool sought primarily to capture quantifiable data on the caregivers’ situation, problems, and support needs. Sixty-four items were arranged in two parts and provided categories for analyses of the data: Part 1 elicited quantitative data through fixed-response items, in which responses could be measured using nominal scales with dichotomous variables in the following categories: (a) demographic and household data, (b) health status, (c) knowledge and awareness of HIV and AIDS, (d) caregiving to persons living with the disease, (e) caregiving to orphaned/grandchildren, and (f) support received from the government and other community institutions, such as churches and NGOs. Part 2 comprised open-ended (narrative) items covering problems experienced with caregiving, perceived critical support needs for optimal caregiving, and daily care activities. The instrument was constructed in English, translated into the languages of the sample (isiZulu, isiXhosa, and Afrikaans), and back-translated by independent researchers. It was then field-tested and refined and later piloted by the author in a 5% sample (n = 15 households) in one of the provinces (WC).

Case study instrument

For the case studies, an interview schedule was constructed with six broad open-ended questions designed to elicit opinion, perceptions, and suggestions from the 10 purposively selected survey respondents on what the government could or should do to alleviate their caregiving burden. The areas covered were (a) information on the household, (b) the caregivers’ knowledge about HIV and AIDS, (c) care activities, (d) assistance or help the caregivers solicit from people in the neighborhood, (e) reasons why a caregiver may not ask neighbors for help, and (f) how the government could or should assist older persons who care for PLWHA and young grandchildren. Questions posed sought to encourage the caregivers to express their feelings about their situation and how they might be helped by the government. The unstructured interviews would help moreover to elicit experiential issues and insights, to construct a record of daily caregiving activities (Gergen, 1988; Hudelson, 1996; Mayan, 2001). The narrative data recorded in the interviews were audio-recorded, translated, content analyzed, and written up as case studies.

Key informant interviews instrument

Two interview schedules were constructed to interview the two categories of key informants: one for government officials and one for managers of NGOs. The schedule for government officials comprised 15 open-ended questions and that for NGO representatives, 10 open-ended questions. One NGO manager was selected in each province for interviewing, with an aim to balance the views, perceptions, and opinion of the managers on government policies and programs, with those of two senior managers in the Departments of Social Development and Health across the provinces. The main purpose in interviewing the government officials was to learn about the content and implementation of policies and programs relevant to the inquiry, and how responsive the instruments are to the needs of older caregivers—from the informants’ perspective. The main purpose in interviewing the NGO informants was to elicit knowledge and their perspective of government policy as it pertains to supporting older caregivers. Interviews with key informants gathered information especially helpful to the drafting of guidelines for policy. The technique proved particularly helpful moreover in gathering information that could be used to inform policy review and reform (see United States Agency for International Development [USAID], 1996).

Results

The three classified data sets were analyzed separately, and key findings of the analyses are shown in three parts. The results of the analyses are later triangulated.

Survey Data

The survey data were analyzed descriptively and characteristics of the sample described using the SPSS 17.0 program. Qualitative-type responses to open-ended items were classified in categories and content analyzed. The proportional distribution of the sample of 305 respondents was fairly similar across the three provinces in which the study was conducted. The male/female ratio of the respondents, that is, the primary caregivers, was skewed toward females—who predominate as caregivers, especially in nonurban areas (100% of the KZN subsample) and 92.1% and 86.2% of the WC and EC subsamples, respectively. Only 27 males were drawn into the sample. The mean age of the sample was 65.9 years (SD = 8.3 years), with the mean age for males 63.4 years and for females 66.1 years. More than two third of the respondents (86.2%) headed their household and more than a third (35.2%) were widowed. Only 3.6% had completed 12 years of schooling. See a profile of the survey sample in Table 1.

Table 1.

Survey Sample Personal and Household Profile, by Three Provinces, and Urban and Nonurban Area (Percentage Distribution)

	Province and Subsample (%)
	Eastern Cape		KwaZulu-Natal		Western Cape
Characteristic	Urban	Nonurban	Urban	Nonurban	Urban	Nonurban	Total (%)
Total (%)	18.0	48.9	41.9	22.6	40.1	28.6	33.4
n	31	65	72	30	69	38	305
Gender
Male	25.8	13.8	8.3	—	1.4	7.9	9.5
Female	72.4	86.2	91.7	100.0	98.6	92.1	90.5
Age group (years)
50-54	3.2	7.7	2.8	—	10.1	18.9	7.2
55-59	25.8	13.8	8.3	6.7	31.9	13.5	17.1
60-64	29.0	24.6	20.8	23.3	15.2	16.2	21.0
65-69	25.8	24.6	27.8	40.0	21.7	32.4	27.3
70+	16.1	29.2	40.3	30.0	20.3	18.9	27.3
Marital status
Married	19.4	23.4	44.4	66.7	30.4	36.8	35.5
Widowed	41.9	59.4	20.8	20.0	27.5	42.1	35.2
Other	17.5	45.5	36.5	18.2	30.0	27.7	29.2
Household water source(multiple responses)
River/stream/pond	—	70.0	—	10.3	—	3.2	21.8
Tap (inside house)	16.7	7.8	38.6	3.6	58.8	52.6	32.9
Tap (in yard)	54.8	23.4	37.1	40.0	31.1	23.7	33.3
Communal tap	38.9	61.1	68.2	31.2	39.3	43.5	41.2
Household toilet facility
Flush toilet (inside house)	12.9	7.7	37.5	—	36.2	44.7	25.6
Pit latrine	71.0	70.8	48.6	100.0	—	31.6	47.5
Bucket toilet	—	1.5	—	—	13.0	—	3.3
Household energy sources (multiple responses)
Wood	80.0	56.2	9.7	40.0	1.6	10.5	28.5
Electricity	71.0	73.4	94.4	73.3	84.1	81.6	81.6
Paraffin	76.7	62.5	23.6	3.3	36.1	26.3	38.3
Household members’ receipt of a social grant (multiple responses)
Social old age pension (n = 201)	79.2	20.8	59.4	40.6	43.7	57.0	65.9
Child support grant (n = 133)	20.9	49.2	33.3	26.7	50.7	68.4	43.9
Perceived financial situation of household
Not enough money for basic expenses	38.9	61.1	62.0	38.1	64.4	35.6	78.0
Has enough money for food/clothes but not other things	16.7	83.3	86.2	13.8	85.7	14.3	33.6

Basic amenities in the sampled caregivers’ households are also shown in Table 1 and demonstrate the low socioeconomic status, or indeed dire poverty situation of the households. Only a third of the households had piped water inside the dwelling; two fifths obtained water from a communal tap whereas more than a fifth drew water from an unprotected source, such as a river, stream, or pond. More households in nonurban areas of the Eastern Cape Province (70%) than in the other two provinces depended on an unsafe water source. Only 25.6% of households overall had a flush toilet inside the dwelling—a particular hardship for both older caregivers and PLWHA. Almost half of the households (47.5%) used a pit latrine. However, more than four fifths (81.6%) of households had electricity as their main source of energy while the remainder relied on paraffin. In nonurban areas, the dwellings were mainly built from inexpensive materials, such as mud bricks and thatched roofs, and in urban areas, mainly from brick, although in the case of shacks, from timber and galvanized corrugated iron.

The majority of the caregivers and numerous household members who were eligible for one, based on age or disability status, depended on a social grant for income. Two thirds (65.9%) of the older respondents received a social old-age pension (a quarter was not yet age eligible), and more than two fifths (43.9%) of the households received one or more child support grants (an amount of R250 or US$36.35 in 2010). Only a small percentage of caregivers (10.2%) generated income by selling perishables in their community to supplement their household’s income. More than three quarters (78%) perceived that their household did not have enough money and less than half (47.7%) reported that they had enough money for basic items. Across households, the social old-age pension (an amount of R1010 or US$131 in 2010) was the main source of income in households in receipt of a grant.

More than half (53.1%) of the caregivers perceived their health as fair—although 70.8 in nonurban areas of the Eastern Cape Province did so. More than two third of caregivers (66.7%) in the nonurban area of KwaZulu-Natal rated their health as worse than that of their peers. Problems of a lack of money, economic inactivity, and poor health were expanded on purposively selected by the caregivers in follow-up interviews. More than three quarters of the caregivers were knowledgeable about HIV/AIDS. However, although almost all (97.3%) knew that AIDS is caused by a virus, more than half of the caregivers in nonurban areas of the Western Cape contended that AIDS is punishment from God. In all, 94% knew that HIV can be transmitted through unprotected sex; 80.3% knew that the virus can be contracted through exchange of body fluids, such as blood. Hence, the respondents were generally knowledgeable about the disease and the knowledge was largely obtained from an NGO. A majority of the caregivers (59.3%) relied on informal support to help them with caregiving, mainly from NGOs and family members. A lack of formal support, as reported by the caregivers, was common across the three provinces, particularly in nonurban settings. The majority of caregivers received help from these sources with daily activities, such as administering medication (78.3%), washing the PLWHA (65.8%), transporting the PLWHA to places such as health service points (56.9%), and receiving emotional and spiritual support (67.4%).

Case Study Interview Data

Qualitative data were collected from the 10 purposively selected respondents (Table 2) in the follow-up, and in-depth interviews were transcribed using a word processor and classified for content analyses (Krippendorf, 2004). Comprehensive information was gathered on each case through a combination of unstructured interview data and observation. Observation focused on the dwelling environment: the type of building materials used, the size of the household, the number of rooms, the source of energy used, the type of water source, and the type of toilet facility. Observations were recorded by the researcher as field notes and later classified.

Table 2.

Profile of the Respondents in the Case Studies

Case Study Number	Age (Years)	Gender	Marital Status	Cares for PLWHA	Cares for OVC	Receives Social Old-Age Pension	Other Sources of Income
1	69	F	Widowed	Y	Y	Y	None
2	59	F	Never married	Y	Y	N	None
3	65	F	Widowed	Y	Y	Y	Sells perishables
4	72	F	Widow	Y	Y	Y	None
5	73	F	Widowed	Y	Y	Y	Child support grant
6	64	F	Never married	Y	Y	Y	None
7	65	F	Widowed	Y	Y	Y	None
8	77	F	Widowed	Y	Y	Y	None
9	66	F	Widowed	Y	Y	Y	None
10	64	F	Widowed	Y	Y	N	None

Note: PLWHA = Persons living with HIV and AIDS; OVC = orphaned and vulnerable children; F = female; Y = yes; N = no.

Analytical categories in which the data were organized were (a) sociodemographic characteristics; (b) health status; (c) level of knowledge of HIV and AIDS; (d) formal and informal support available and accessed; (e) the household members’ knowledge of the status of the PLWHA and related stigma; and (f) caregivers’ concerns about coresident grandchildren and their own well-being. Writing up of the case studies involved pulling together and organizing all the information according to topics, to represent a respondent’s situation.

All caregivers interviewed in the follow-up study were female. The mean age was 67.3 years and the majority had only lower primary schooling. Only one caregiver did not receive an old-age grant; she was 59 years old and not eligible for one. All were grandmothers and, on average, had four coresident grandchildren. All were primary caregivers to the PLWHA and grandchildren. Nine were unemployed, owing partly to caregiving responsibilities and partly to their own ill-health:

I cannot work . . . I must look after them. We survive by the little things [perishable goods] that I sell to make ends meet. That has helped me to put bread on the table and send my grandchild to school . . .

The majority was widowed. None had an educational level beyond 12 years of schooling; two had no schooling. A number of them had not completed school owing to a lack of financial resources and/or early marriage. In eight cases, the PLWHA for whom the caregivers were caring was their adult child; in two cases it was a grandchild. “My son’s illness gives me a lot of worries, on top of which I suffer from ‘high-high’ [high blood pressure]. I sometimes forget to take my diabetes medication. I am very worried.”

In general, the case studies indicated similar problems, concerns, and needs to those articulated by the survey respondents in both urban and nonurban settings. Particular problems reported in the case studies were a lack of money and a deterioration in a respondent’s health: “. . . sometimes I have to borrow money from money lenders [loan sharks], and they charge very high interest rates and sometimes confiscate one’s ID [identity document] until one pays back the money in full.” “The problems I face in this house affect my health badly. I think I am suffering from a lot of stress . . .” In general, caregiving entailed preparing meals, and feeding, washing, turning, lifting, and dressing the PLWHA. Such activities require energy and stamina that an older person may lack. Apart from noting the physical demands of caregiving, the caregivers reported sleep disruptions and worries about coping with their situation with little or no support.

A key finding of content analysis of the case study data was that all the caregivers felt that the government should support them to enable them to render better care. Other findings were (a) caregiving compromises the caregivers’ mental and physical health, (b) they suffer emotional problems, (c) they must forego employment opportunities and thus livelihoods because of caregiving responsibilities, (d) they fear social stigma and discrimination because of AIDS in the household, (e) some hold fatalistic beliefs about the disease

[I] . . . believe strongly that it is a punishment from God to wrongdoers and one can’t do anything about it . . . the bible says there will come a time where there will be incurable diseases because people have sinned in the eyes of God

and (f) they contend that the government should support caregivers by, among others, exempting them from paying certain dues, such as school fees for their grandchildren. The old-age grant is not enough to meet all of a child’s needs, they emphasized, which includes school expenses. The government should thus consider exempting older persons who provide care for PLHWA and orphaned children “. . . from paying school fees [as well as] . . . other things such as electricity and medicine.”

The analysis indicated that the strain of caregiving resulted in new ailments in the caregivers, such as sleep disorders, headaches, stress, and depression. Several suffered health conditions, such as hypertension, arthritis, and diabetes. Some reported health conditions that had neither been clinically diagnosed nor were being treated by a doctor. Some feared “harsh” (depersonalizing) treatment from health professionals at public health care facilities. Emotional health problems from which they suffered would conceivably be debilitating, and diminish their ability to render care and to cope. Indeed, it is probable that the chronic health conditions that several caregivers suffered could cause physical disability and even lead to an early death.

Fear of HIV- and AIDS-related stigma was common among the caregivers. Some feared that people would gossip about the caregiver’s family because of “this thing” (AIDS) in the household. Even worse, some feared grandchildren might be discriminated against and their lives put at risk, or other children might not play with them, which would cause unnecessary misery for the children. Some who held fatalistic beliefs about the disease, such as AIDS being punishment from God, contended that only divine intervention would solve the problem of AIDS.

There were no discernable differences in caregiving patterns and problems between caregivers in urban settings and their nonurban counterparts. It was evident however that the caregivers could not cope with the burden of caregiving on their own and needed formal support.

Key Informant Interview Data

The qualitative data gathered in interviews with key informants in relevant government departments and NGOs were classified and content analyzed. Analyses focused on opinions expressed and issues identified by the informants.

The three government key informants interviewed conceded that government officials are largely unaware of the plight of older caregivers while those who are aware of it seemingly view difficulties that older caregivers experience as the responsibility of other departments, not theirs. The informants indicated a willingness to engage with older caregivers or their NGO representatives to learn more about and find solutions to alleviate the caregivers’ burden. NGO informants on the other hand understood older caregivers’ support needs well but were constrained in how much they could help the caregivers, owing to a lack of resources, and a lack of consultation by government officials regarding policy and program intervention to address the problem. Overall, the results indicated that the government informants had no knowledge of policies and programs that could support older caregivers affected by HIV and AIDS—and indeed were even puzzled why there should be a need for specific policy and programs in this regard. A government informant commented, “. . . we work on the basis of guidelines on the HBC [home-based care] program. . . . there are organizations of older persons [that] the department supports . . .” Hence, problems experienced by older caregivers, according to this informant, are being met sufficiently by programs such as the HBC. No need was perceived for an official policy to address older caregivers’ support needs; nor did any government department have a policy in this regard.

Shifting the responsibility for intervention in this regard to other departments, an informant commented, “This [older caregivers’ vulnerability] is a Social Development [ministry] function. Our department’s role is to implement the national strategic plan and policy on HIV and AIDS. I cannot say much on this.” Another government informant explained, “. . . our department has [only] recently become aware of this problem . . . there are no strategies nor policies that have been conceptualized to date to address this issue.” The government informants uniformly “passed the buck” on whose responsibility the plight of older caregivers was to other departments.

Each of the three NGO key informants interviewed had a background in nursing or teaching and had worked in public hospitals, in public schools, or with NGOs. A common problem for NGOs across all three provinces highlighted by the informants is difficulty experienced in interacting with government officials. Although all three informants were aware of the national HIV/AIDS strategic plan, only one had a copy of the plan. None were fully cognizant of the plan’s contents. Access to government documents can indeed be difficult—owing to bureaucracy and ignorance of the existence of the documents and how a relevant government department should be contacted to obtain a copy of the document. However, none of the informants’ organizations had been invited to participate in any consultative process to formulate the strategic plan. “No, no, no, our organization was never involved in any way in the development of this strategic plan you are talking about,” explained one NGO informant.

Results from analyses of the interview data from the key informants highlight a gap between the government’s response to the epidemic and its social partners who battle the effects of the epidemic head-on. Hence, senior government personnel need to be informed of the nature and magnitude of the care burden on older caregivers, who lack any direct support through formal policy and programs.

Triangulation and Discussion

The results of the analyses of the three data sets were triangulated in the following way: First, key information in the data sets that either corroborated or diverged from findings of analyses of the other data sets was identified. An integration of corroborated findings resulted in a rich and diverse set of study findings. Divergent findings were not integrated but noted for separate comment or follow-up. Highlighted in triangulated findings of data set were the following: (a) A relatively high level of respondents’ knowledge of HIV and AIDS (evident in both the survey data and the case studies), (b) the limited extent of support that older caregivers receive from the government (evident in all three data sets), (c) the feminization of caregiving (evident in both the survey data and the case studies), (d) the problem of HIV/AIDS stigma (equally evident in the case studies and survey data), and (e) the work of and support provided by the NGOs to caregivers (corroborated in both the case studies and the survey data). Overall, the triangulated findings highlight the lack of formal support to older caregivers.

Divergent findings in the three data sets were (a) curiously, a high level of satisfaction was expressed by survey respondents with public health services—with respondents in the case studies showing a low level of satisfaction with these services (the case study method used may have enabled more sensitive articulation of true satisfaction) and (b) new information yielded in the case studies, serendipitously, in areas not been inquired about in the survey, such as reported sleeplessness, bouts of crying, and a worsening of some caregivers’ health conditions, such as diabetes, as a result of the strain of caregiving responsibilities. The case studies method thus yielded a richer set of data in terms of an indication of the effects of caregiving on the caregivers than the survey. The case study data also elaborated findings of the survey data through the provision of rich detail on how the caregivers coped with caregiving despite limited resources (e.g., some supplemented social pension income by borrowing money). Typical situations of these caregivers are shown in Box 1.

Box 1.

Situations of Three Caregivers in the Case Studies, Illustrative of the Caregivers’ Plight and Coping Strategies

Mrs. Kamanga,^a 69 years and widowed, stopped schooling at primary school, lives with a son (45), a daughter (28) and two grandchildren in a small four-roomed shack in Khayelitsha. Another son lives with his family in a separate shack in the backyard. Both families take meals communally. The families’ only steady source of income is Mrs Kamanga’s indodla (monthly old age pension) from the government. One of her other sons, all who live elsewhere and are unemployed, was diagnosed with HIV in 2001. For the past 2 years he was hospitalized intermittently for an incurable skin condition. The doctors had told Mrs Kamanga that her son’s skin condition was a form of cancer common in people infected with HIV. The last time she had visited the hospital was to take her son home. She was given tablets to give him every day. At first she had believed that AIDS can be cured similar to any other sexually transmitted disease. She consulted traditional healers who say they can cure sexually transmitted infections such as gcusula (gonorrheoa), as she understood that AIDS is a form of gcusula. However, her son’s condition did not improve, even though she had paid the healers money to cure him. She feels she spent a great deal of money trying to help her son with no success.

Mrs. Zozo,^a 59 years and never married, lives with her daughter and five grandchildren in a two-roomed shack in Khayelitsha. Another three grandchildren were living temporarily with relatives in a neighboring township as Mrs Zozo’s house is overcrowded. She receives no financial support from the government: neither an old age pension nor a child support grant (she is not yet eligible for a social pension as she is younger than 60 years and she is ignorant about child-support grants). Mrs Zozo has no schooling. She previously worked as a domestic worker, but had to stop work to care for her daughter when the daughter contracted double pneumonia. When she had taken the daughter to hospital on that occasion, the doctor had told her that the daughter has AIDS that led to the pneumonia. At the time Mrs Zozo was caring for all five of the daughter’s children, as the father had died 2 years earlier, purportedly from tuberculosis. Mrs Zozo suspected that two of the grandchildren may have AIDS, as they were not eating well and were losing weight rapidly. She had not taken them to a clinic or a hospital as she had neither a chance to do so nor the money; taxis to transport them to a clinic are expensive. She also feared that the nurses at the clinic would talk harshly to her.

Mrs. Biddy,^a 65 years of age and widowed, left school in the eighth grade, and lives in a nonurban area of the Western Cape. She had not spoken to her relatives or neighbors about her daughter being HIV positive, as she feared that people would start to gossip about her child and say she had failed to be a good parent. In her opinion people still believe the disease will afflict others, not themselves. She spent sleepless nights, she said, thinking about the “bad thing” (HIV and AIDS) that had happened in her house. She had borrowed money from friends to pay for transport to take her daughter to traditional healers and preachers to get help, but the daughter’s condition was “on and off” and she was getting worse each day. Mrs Biddy, commented fatalistically as follows: “[I] . . . believe strongly that it is a punishment from God to wrongdoers and one can’t do anything about it (AIDS). . . . the bible says there will come a time where there will be incurable diseases because people have sinned in the eyes of God.” Mrs Biddy complained of having a constant headache and sleeplessness ever since she had learned of her daughter’s HIV status. Her diabetes had worsened, even though she was being treated for the condition. She believed that her health was deteriorating because of the troubling situation (HIV and AIDS) in her household.

^a. Pseudonyms.

The situations reported in Box 1 are illustrative of efforts made by caregivers to manage PLWHA in their care. Such efforts included learning about a PLWHA’s status for the first time, visiting traditional healers in desperation to seek a cure, and supplementing household income. The situations highlight a common lack of financial resources in these caregivers’ households.

The three case studies shown in Box 1 are broadly representative of the 10 case studies in the following ways: All 10 case studies covered areas such as the main sources of income of the caregiver and the household, the caregiver’s knowledge of HIV, her marital status, and her fear of stigma associated with HIV. The case studies in Box 1 represent the situations of two caregivers resident in an urban area and one caregiver resident in a nonurban area. Unorthodox views of the disease articulated by the three caregivers were that AIDS is curable and that the disease is manifestation of God’s punishment of wrongdoers.

Both the survey and case studies data sets highlighted financial constraints in caregivers’ households. Caregiving to persons infected with or affected by AIDS is costly: Caregivers need to buy and prepare nutritious food, hire transport to take a PLWHA to a health care facility for treatment, and buy toiletries and medication to clean and dress skin lesions. Some expend scarce money on alternative treatment regimens, such as herbal remedies offered by traditional healers. Some caregivers expend copious time rendering care and forego income-generating opportunities as a result. When a PLWHA succumbs to the illness, a caregiver must arrange and pay for the funeral.

Cross-checking of the results of the analyses of the three data sets revealed new information that would not have been gathered if a single method approach had been used. Such information included (a) caregivers’ reports of new ailments perceived to have been caused by caregiving, (b) unorthodox beliefs or understanding of the disease, (c) government officials’ ignorance of caregivers’ plight, and (d) NGO key informants’ frustration with the government’s lack of consultation with them. Findings of an analysis of the case studies data that did not correspond with those of the other two data sets were (a) caregivers being unable to engage in paid employment because of caregiving responsibilities. The method of data collection used for the case studies enabled respondents to explain how they coped with caregiving under these circumstances—such as engaging in petty trading and borrowing money from money lenders to purchase goods to sell and (b) some caregivers fearing “harsh treatment” from certain health professionals at public health service points.

Findings of the analysis of the government key informant data suggest that a major gap exists between the challenges and hardships that caregivers face and the level of the officials’ understanding of the caregivers’ problems and hardship. Consequently, the government’s response to older caregivers’ support needs has been inadequate or nonexistent. Overall, the government informants appeared to be unaware of how desperate older caregivers’ situation and plight are. By implication, they suggested, fairly insensitively, that older caregivers, albeit triply burdened by caregiving, poverty, and poor health, should take responsibility for making their voices heard. These informants overlooked the caregivers’ vulnerability and precarious situation on several levels: one being the caregivers’ low level of education and inability to articulate their needs and demands and another being their lack of knowledge on how government structures function and how to access them.

Despite not being consulted on issues relating to HIV and AIDS intervention to support older caregivers, the NGOs represented by the key informants interviewed nonetheless work steadfastly to render support, as was evident in both the survey and the case studies data sets. Although the majority of the survey respondents reported that they had learned what they know about AIDS from an NGO, the NGO key informants were frustrated that they are not consulted by the government in strategy planning. The anomaly of the government not working with NGOs, which have firsthand information on the situation of, and direct contact with older caregivers, cut across all three provinces. A lack of consultation of NGOs by the government in effect limits the organizations’ ability to support the caregivers—and the NGOs are consequently frustrated. Similar frustration was expressed by respondents in the case studies, who referred to the inordinate time it takes for the government to process and approve an application for a social grant.

Triangulation of the findings from analyses of the three data sets thus helped the author to pull together the outcomes, drawing on both quantitative- and qualitative-type data gathered through the employment of multiple research methods. The qualitative data provided firsthand descriptions of difficulties experienced by the caregivers as well as suggestions proffered by the caregivers on how the difficulties could be resolved. Corroboration of common findings in the three data sets moreover contextualized caregiving by older caregivers.

Theoretical Interpretation

As the number of persons who are terminally ill with AIDS in South Africa grows, so is informal caregiving to these persons increasing. The majority of caregivers in households affected by AIDS are older women. The theoretical framework constructed for the study draws on tenets of feminist theory (Humm, 1990) and social exchange theory (Homans, 1958) to explain (a) the predominance of female caregivers in African society in general and in households affected by HIV and AIDS in particular and (b) the nature, extent, and limits of exchanges between older caregivers and care recipients in these households. Within the study population, caregiving is predominantly viewed as a women’s responsibility, and community-based, long-term care of ill and vulnerable persons is largely accepted as being undertaken by (older) female caregivers. However, from a feminist perspective, older female caregivers in these situations are particularly disadvantaged for reasons that follow: They lack adequate financial resources, experience food insecurity, and lack access to affordable transport. For gender and age reasons they are markedly poor, and are marginalized in formal support and counseling. Older female caregivers in households affected by HIV and AIDS are therefore disproportionately affected by effects of the disease, relative to older men. Their disadvantage is a function moreover of unequal life chances and caregiving having little value. Neither are older caregivers remunerated nor is their caregiving recognized as work. The caregiving is rendered moreover in a household, which is viewed as a woman’s “workplace.” In African society, women are socialized from an early age to render care; should they fail to perform this role, they open themselves to social opprobrium (Mackinnon, 2009). Consequently, older women simply accept caregiving to PLWHA and OVC as their duty and obligation. In rendering care moreover, they will put their charges’ needs first and neglect their own well-being. In essence, older women in households affected by HIV and AIDS in African society have little choice than to render care, which does not indicate that they are naturally more nurturing than older men (Walker, 1992). On the other hand, men have been socialized to believe that caregiving is a female activity and not valuable work to be performed by men.

The care management of PLWHA and OVC thus presents severe social, economic, and psychosocial challenges for older female caregivers. It may be argued therefore that intervention to support the caregivers should be gender specific to ensure they are supported adequately. Nonetheless, intervention is needed at the same time to encourage older men to participate in caregiving and to establish what their situation and specific support needs are.

From a social exchange theoretical perspective, the study has shown that dyadic reciprocity between caregivers and care recipients and within social networks may not be immediate—or even delayed. A sick or dying PLWHA may be unable to reciprocate care, love, and concern—either immediately or in the future. OVC may be unable to reciprocate care and support immediately but may be able to do so when their caregiver is elderly, and possibly frail, and in need of care and support. Not being able to reciprocate immediately does not appear to deter caregivers from rendering care to OVC. Some OVC may indeed reciprocate immediately in practical ways, by running errands for the caregiver and performing minor domestic chores. Although the dynamics of reciprocation between caregivers and care recipients in the study may not be explored and explained entirely satisfactorily by social exchange theory, the theoretical construct has nevertheless indicated that intervention is needed to support older caregivers.

A Policy Framework

Understanding a problem in its full complexity and multidimensionality is essential to the development of appropriate policy responses to remedy the problem. The study, in which multiple methods were used to collect data from different subpopulations, yielded evidence of the multifaceted nature of the difficulties that older persons in South Africa experience in caring for persons with or affected by HIV and AIDS. The evidence could then be used to inform the design and implementation of policy and programmatic responses aimed at supporting the caregivers. A policy framework was subsequently developed, based on the study outcome, to serve as a tool to guide decision makers in such an undertaking—aimed at an alleviation of their plight and giving wider recognition to their contribution to the care management of the epidemic. An abridged version of the policy framework is shown in Figure 1, organized according to “Desired Outcomes,” each with corresponding “Data/Results” and proposed “Policy Recommendations.” (The comprehensive framework is shown in Petros, 2010.) The framework is intended for role players to use as a mechanism to guide them in the review of existing policy, analyses of older caregivers’ support needs, and the formulation and implementation of new and appropriate policies and programs to support caregivers.

Figure 1.

Policy framework for the provision of support to older caregivers

The framework shows clearly how outcomes of the triangulation of the data analyses were used to inform the policy recommendations. The recommendations specify at what level of government and by which agency a recommendation should be implemented as follows: (a) When the data across the data sets showed low concurrence, or vice versa, of a desired situation, such as health-seeking behavior or poor service delivery, such as lack of safe piped water, a recommendation(s) was formulated to address the undesired situation and achieve the desired outcome. (b) When the data showed new or negative effects of caregiving on the caregivers, such as the manifestation of new ailments, a recommendation to address the effects was formulated accordingly. (c) When the data showed unusual or unexpected responses, such as several respondents’ belief that AIDS is punishment of a wrongdoer by God, or a belief that AIDS can be cured by a traditional healer, recommendations were formulated to address such misunderstandings of the disease. (d) Where gaps were identified in the data such as a lack of opportunity for older caregivers or their NGOs to participate in HIV/AIDS policy formulation, recommendations were made to fill such gaps. (e) Where the data showed a lack of coordinated action between the role players (i.e., government departments, private sector agencies and NGOs), recommendations were made to address such lack of coordination. Essentially, all recommendations made were based on outcomes of a triangulation of findings of the data analyses.

Hence, the framework may be used to review whether policies and programs address older caregivers’ needs in a manner that supports caregiving activities and enable the caregivers to provide shelter, food, clothes, health care, guidance, and education for affected household members as well as sustain their own physical and mental health and well-being—and develop and implement new and appropriate policies and programs.

Conclusion

Key outcomes of a study conducted in three provinces of South Africa on the impact of caregiving to persons infected with or affected by HIV and AIDS on older persons, in which a mixed methods research design was used to produce a comprehensive, novel, nuanced, and integrated data set, informed the construction of a policy framework to guide decision makers in policy and programmatic responses to support older caregivers. The use of a mixed methods approach for the study provided a robust alternative to the use of a single research method. The present study has been the first study to employ a mixed methods approach in a study on this problem area in South Africa. The use of this approach and triangulation of the data from multiple data sets have contributed to an understanding of the multidimensionality and complexity of the effects of HIV and AIDS on older caregivers in a context of extreme poverty.

The approach enabled an exploration of the study problem on multiple levels. Analyses of the survey data indicated the magnitude of the problem in delimited settings as well as differences in the effects of the disease on study households in urban areas and nonurban areas. An analysis of the case studies data yielded a description of caregivers’ perceptions of their situation and how it might be remedied by public policy makers and other stakeholders. An analysis of the key informant interview data yielded views and lack of understanding of government officials of the plight of older persons who manage HIV and AIDS in their household—and highlighted a lack of a policy response. Triangulation of the data and findings from the three data sets supported this finding on a lack of understanding and formal support, and gaps in public policy could be identified and a policy framework constructed.

Overall, the study has demonstrated benefits of using a mixed methods approach to evaluate public policy. Future studies on similar problems in other settings using this approach, including comparative studies, are therefore indicated. Future studies on caregiving in households affected by HIV and AIDS may consider the development and validation of an instrument to measure the burden of care on older caregivers toward pinpointing specific areas in need of intervention. Finally, future studies may examine the situations of more socioeconomically advantaged older caregivers to compare how effects of the disease affect caregivers of different social strata.

Footnotes

Acknowledgements

Professor Monica Ferreira at International Longevity Centre–South Africa, at the University of Cape Town, South Africa, and Professor Adesola Ogunniyi in the Department of Medicine at the University of Ibadan, Nigeria are thanked for comment on drafts of this article.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article:

The Nelson Mandela Foundation in Houghton, South Africa, is thanked for initial funding of the investigation.

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