Community Study Report

Community Perceptions of the Social Determinants of Child Health

in the Dwars River Valley

Written by: Ayesha Kadir

Date: 20 November 2013

Study supervisors: F. Marais, Stellenbosch University & Western Cape Government: Department of Health

N. Desmond, Liverpool School of Tropical Medicine, UK

Ayesha Kadir 2

Executive Summary

This report presents the findings of a community-based study of the nature of poverty in the

Dwars River Valley and its effect on child health as perceived by the local community. The

research was a pilot participatory project for an ongoing multi-centre international study by

physicians in the CHILD 2015 network. This particular study was commissioned by private

donors from the valley to inform future development projects in the area. The participatory

data collection methods were developed using a rights-based approach to health care and

health research. As such, the study design centred on the views and experiences of the

community, and data was primarily collected from children and from people living in deprived

circumstances. A series of child drawings, household interviews, focus group discussions, and

community leader interviews were conducted in July and August 2012. Walks and drives

through the area to assess local infrastructure (assets) and analysis of local newspaper articles

were done to verify that the interview and focus group findings were consistent and accurate.

The findings were presented to the community during several meetings in June 2013 in order to

share this research with the community, to cross-check relevance of the findings, to answer

questions, and to identify recommendations towards action for change. Community meeting

participants agreed fully with the results, thus also establishing internal validity of the findings.

Key findings:

Poverty was defined differently by adults and children.

o Children focused on hunger, physical and emotional neglect.

o Adults communicated a sense of inability to improve their circumstances and

provide for their children (lack of agency). Lack of secure housing and

employment were important factors.

The main child health problems identified by adults were tuberculosis, malnutrition,

asthma, seasonal respiratory tract infections and diarrhoea, HIV, rashes, teenage

pregnancy and depression.

Nutrition was identified as the most important child health issue amongst health

workers, and was their main priority for intervention.

The main social predictor of child health identified in the study was neglect by

caregivers, particularly neglect due to substance abuse.

Poor parenting skills, family breakdown, and distant child-parent relationships were

associated with poor health in early childhood, school dropout, teen pregnancy and

substance abuse in children and young people.

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People living in very deprived circumstances described feeling excluded from the

broader community.

Lack of education amongst adults was seen as a significant barrier to secure

employment. Only one household participant had completed secondary education.

Amongst adults a lack of agency, or the ability to change one’s life situation, was the

common thread linking the experience of poverty, the role of neglect, and subsequent

child health outcomes.

There are a number of active community support and development programmes that

have been developed and carried out by and for local residents.

Current community programmes were seen as helpful in the short run, but potentially

undermining of parental responsibility, thus perpetuating the cycle of poor child health,

poverty, and neglect.

Recommendations:

The main issues affecting child health and wellness were lack of agency amongst adults and

child neglect. These should be the target of further research and interventions. Any and all

interventions should take the following into consideration:

Planning and implementation should involve children and young people in an active

role from the outset and in all phases throughout the intervention process

Priority areas for intervention should be identified in collaboration with children

and people living in marginalized circumstances.

o This method will help to ensure that the interventions respond to the realities of

the communities, address issues that are prioritised by them, and build on the

existing assets of these groups. Focusing on the priorities of beneficiary groups

will ensure the contextual appropriateness and improve the uptake and ultimate

success of the interventions, and empower the more isolated/disconnected and

deprived members of the community to be active partners for change.

Empowerment of both children and adults, by building on existing community

assets (e.g. knowledge and resources), should be a main goal of any sustainable

community development intervention. This will strengthen community building and

assets, inspire creative thinking and energy within the communities to uplift

themselves and each other, independent of outside help and input.

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Funding Sources: Randgold & Exploration Company Ltd. Richard Enthoven Ayesha Kadir

Suggested citation: Kadir A, Marais F, and Desmond N. (2013) Community perceptions of the

Social Determinants of Child Health in the Dwars River Valley. London School of Hygiene and Tropical Medicine, London.

For further copies of this report, please contact Ayesha Kadir at ayeshakadir@hotmail.com Disclaimer: The contents are the responsibility of the authors and do not necessarily reflect the views of The London School of Hygiene and Tropical Medicine, Stellenbosch University or the Western Cape Government: Department of Health.

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Acknowledgements

It is with deep gratitude that I would like to acknowledge the participation, collaboration and support of

the study participants, community leaders, and community members in the valley. The open sharing of

thoughts, experiences and beliefs made this work possible.

I would also like to acknowledge my colleagues in the CHILD 2015 group, who have been instrumental in

the drafting of ideas and in extending this work to other settings. My supervisors and mentors at the

London School of Hygiene and Tropical Medicine, Stellenbosch University, and the Western Cape

Provincial Department of Health have been a constant and steady source of guidance and support, for

which I am grateful.

The study was funded by Randgold & Exploration Company Ltd, Richard Enthoven, and Ayesha Kadir. The donors are gratefully acknowledged.

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Table of Contents

Abbreviations and Definitions 7

1. Background 8

2. Aim of the study 9

3. Objectives of the study 9

4. Research design and approach 10

5. Results: Views and experience of poverty 13 Children’s experience of poverty: Physical aspects of poverty and neglect Adult experience of poverty: Lack of security and agency

6. Results: Child Health Problems 14

7. Results: Social Predictors of child health 14 Neglect Cycle of poor parenting skills, breakdown in family relationships, and substance abuse Barriers to education Social exclusion and lack of agency

8. Results: Current programmes 16

9. Challenges and limitations of the study 16

10. Discussion 18

11. Conclusion 20

12. Recommendations 21

Tables 23

Appendices 26

References 33

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Abbreviations and Definitions

Bungalow Prefabricated, informal shelter commonly constructed from wood,

BSDI Boschendal Sustainable Development Initiative

CBO Community-based organisation

Dagga Marijuana

DOH Department of Health

FGD Focus group discussions

House Formal shelter, commonly built from brick or cement

IDI In-depth Interviews

LMIC Low- and middle-income countries

Matric Matriculation, the final year in high school in South Africa

MDR TB Multi-drug resistant tuberculosis

NGO Nongovernmental organisation

RTI Respiratory tract illness

SEP Socioeconomic position

SDH Social determinants of health

SDCH Social determinants of child health

Shack Informal shelter, commonly constructed from zinc sheets

TB Tuberculosis

Tik Methamphetamine

WHO World Health Organization

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1. Background It is well documented that the social, cultural, political, environmental and economic

environments in which patients live have a direct impact on their health. In the past decade,

the social determinants of health have drawn increasing attention as clinical practitioners,

humanitarian, and development workers search for more effective and sustainable means of

improving health in local settings and amongst large populations across the globe. Since the

late 1970s, researchers have been studying how socioeconomic status affects health and

mortality outcomes (1-3). Since that time, a vast amount of evidence has been gathered which

demonstrates that health is socially patterned (4, 5). These studies have led to a World Health

Organization Commission on the Social Determinants of Health (6). In 2011, the Commission

published a series of case studies on interventions (7). The studies were heavily geared

towards national-level policy change, and only a few of these studies contained interventions

targeting children. The introduction paper on the Commission states that the Commission’s

report argues that “health status should be of concern to all policy makers, not merely those

within the health sector” (8).

The need for a multi-sector policy focus on the social determinants of health is inherent, given

the nature of social determinants. Until present, however, it has largely excluded the assets,

including expertise, of communities and health workers. In particular, the voices of children and

people living in deprived circumstances is often missing in the design and undertaking of

intervention research on the health effects of socioeconomic position and on the prioritisation

and development of subsequent interventions. At present, there remains a large gap in

knowledge about how best to understand and respond to the social determinants of child

health in collaboration with communities.

This study was designed to test a participatory qualitative approach to the study of the social

determinants of child health from the perspective of the target population and the local health

workers. Such tools are needed in order to identify the realities, views and priorities of children

and their communities, as they are best placed to identify locally relevant social determinants

and use the information to improve child health. This study serves as a pilot project for a larger

study by a group of health care workers in low and middle income settings who are doing this

research in their local settings.

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2. Aim of the study

To develop a way for health workers to identify the social determinants of child health in

localised settings and to understand how these influence child health and wellness.

3. Objectives of the study

1. Understand the social, economic, cultural, political, religious and environmental

determinants of child health as experienced by the people living in the Dwars River

Valley

2. Test the feasibility of a qualitative participatory exploration of social determinants of child

health in a well-defined locality

3. Identify a set of social indicators that can be used by local authorities and organisations to:

Inform quantitative and participatory research

Improve clinical care

Develop local programmes to promote sustainable child health and wellness in the Dwars River Valley

Advocate with governmental agencies for evidence-based programmes to improve child health and wellness in Western Cape and across South Africa

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4. Research design and approach

4.1 Design of the study

The study employed a participatory research design. Data collection was focused on the

experiences of children and people living in deprived circumstances in the valley. As such, data

collection took place primarily in Lanquedoc, Kylemore, Meerlust Bosbou and the Giff. The

methods included semi-structured in-depth interviews (IDI), focus group discussions (FGD) and

children’s drawings as well as transect walks and drives and documentary analysis.

Sampling of children was guided by the school principals and staff for convenience, and

included 41 participants from three schools, ages 5 -15 years. Volunteers from a classroom

were recruited at two of the schools. Participants from the third school were identified during a

school staff meeting in which children who were subjectively considered to be living in deprived

circumstances were selected from the entire school population. The school was provided with

the definitions of deprivation used in the study and asked to structure their selection based on

these (Appendix 1)(9).

Thirty children made drawings of poverty and explained them to the researcher on video tape.

Additionally, two child focus group discussions with 5-6 children, respectively, were held.

During the FGDs, the children made drawings of poverty and explained these to the group. The

explanations were then used to guide discussion. The drawings and FGDs with children were

moderated in Afrikaans by an educational psychologist.

Twenty-one interviews were held with female heads of household. The interviews covered the

nature of deprivation and poverty in the area, health problems of children, and the ways in

which deprivation were thought to affect health. Social and family support mechanisms,

knowledge about community programmes and perceived access to these programmes was also

explored. An initial random sample of households was obtained using aerial maps. Five random

housing structures were selected for each of Lanquedoc and Kylemore, and these houses were

approached for interview. Subsequent purposeful sampling was done starting from this initial

group, and also using data from infrastructure evaluation and by local community leader

recommendation. The target population was people living in deprived circumstances. Only

households with children under 18 years old were included in the study. Interviews were held

with the assistance of a translator external to the valley and were audio recorded.

IDIs were also held with five community leaders working in community-based organisations,

nongovernmental organisations, and one school. The interviews explored perceptions of

deprivation and of poverty, living conditions, education, access to health care, diet, labour,

access to information, exposure to violence within and outside the home, health problems of

household members, child illness and death, orphans, community support systems, and beliefs

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about health promotion and illness aetiologies. Recurring topics introduced by the children

were explored with adult participants using an iterative process. Interviews were held with the

assistance of a translator as necessary, and were audio recorded.

Five focus group discussions were held separately with men and women in the different

settlements. Topics explored were similar to those in the IDIs, and participants were

encouraged to share stories and experiences with the group. The FGDs were moderated by two

community members. A pilot FGD was held with women in a local community-based

organisation, and was included in the data analysis. The discussions were audio and video

recorded.

Transect walks and drives through the study area were done to assess local infrastructure,

including roads, water and sanitation supply, housing, access to electricity, schools and health

facilities, barriers in access to education and health care, cost of food in the settlements and in

nearby towns, and access to a community meeting place. The data from the walks and drives

was recorded in field notes, photographs, and charts documenting food pricing and availability.

Review of English-language articles in the Rivier Nuus was also done, with particular attention

paid to articles addressing poverty, deprivation, child health, and child wellness. The data from

the walks, drives, and newspaper review served to externally validate of the data – the findings

were compared with the findings of the IDIs and FGDs in order to check for consistency and

accuracy.

Video and audio recordings of FGDs and IDIs were transcribed and translated into English and

analysed using framework analysis.(10, 11) This included in-depth study of the entire raw

dataset and subsequent careful analysis for patterns, themes and correlations. A thematic

framework was identified and the data was coded systematically. Key themes were identified

based on the frequency of which they were raised and using the operational definitions of

deprivation used in this study. These themes are illustrated in this report by verbatim quotes

from participants. Direct quotes are used in order to provide an understanding of the

perceptions and experiences of the participants as expressed in their own words.

In June 2013, two interviews and one focus group discussion was held with local health

workers. The delay in this aspect of data collection was due to late receipt of operational

approval from the Western Cape Department of Health for the inclusion of health workers in

the study. During this same period, the findings of the study were presented to each of the

communities by means of three open community meetings and one meeting with invited

participants. The invitation-only meeting was held at the office of the Boschendal Treasury

Trust for Trustees and community members invited by Charles Quint and David Carolissen. This

meeting was done to clarify the context of this research, to share the methods, to present the

findings, and to explore ideas for response. The open meetings were held in order to share the

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findings with the community at large, in keeping with a participatory and rights-based approach

to research. These sessions also served to verify the accuracy of the findings from the viewpoint

of the communities. There was overwhelming agreement from meeting participants that the

findings and interpretation are accurate.

4.2 Trustworthiness of the study data

In order to maximise the trustworthiness of the data, the researcher engaged with the

community prior to data collection and reviewed and adjusted the research protocol based on

feedback from participants and community leaders. Throughout data collection, clarification of

participant responses was sought and the context for emerging themes was verified by them.

The research was approached using the principles of ethical mindfulness and reflexivity. As

such, self-reflection on the identity and role of the researcher and all other actors, the purpose

and goals of the research, and the ways this could potentially positive and negative impact the

community was explored with the research team, donors and participants throughout the

research process.(12, 13) The research was carried about by a qualified paediatrician who is

trained and experienced in sociological and qualitative research methods for the study of

health, with the supervision and guidance of faculty from the London School of Hygiene and

Tropical Medicine and Stellenbosch University.

4.3 Ethical Considerations

Prior to data collection, ethics approval was obtained from the London School of Hygiene and

Tropical Medicine and Stellenbosch University. Informed consent was obtained from adult

participants and the caregivers of children, and child assent was obtained from children.

Consent and assent were obtained in the language of the participants prior to data collection,

and included home visits to the caregivers of child participants. The Western Cape Provincial

Department of Health approved data collection from local health workers.

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5. Results: Views and experience of poverty (Table 1)

Children and adults had differing experiences and thoughts about poverty. Children focused on

the practical and physical experience of living in deprived circumstances. Adults spoke about

the underlying causes of poverty and how this manifested in deprivation. In particular, adults

described as a lack of security and a lack of agency. In this report, agency refers to the ability of

a person to control his or her life situation and to choose the degree and manner of his or her

social participation.

5.1 Children’s experience of poverty: Physical aspects of poverty and neglect

Children focused on the immediate physical and emotional aspects of poverty. They made

drawings of sad, hungry children with torn clothes and without shoes, and kids living in broken

down houses and shacks. Poor children were described as unloved and unwanted by their

families, even shunned by the community (Table 1, quote 1.1). Children told stories of being

scolded at homes where they begged for food. Older children spoke about frustrations with a

lack of guidance from parents who had lost hope, or who didn’t believe in the kids’ ability to

follow their dreams (Table 1, quote 1.2).

5.2 Adult experience of poverty: Lack of security and agency

Adults spoke of poverty in terms of lack of a secure situation. The two major recurring issues

were a lack of stable, long-term employment and an insecure housing situation. Participants

described buying food on credit and taking loans from family members, neighbours, and loan

sharks in order to pay their debts and utility bills (Table 1, quotes 1.3-4.) Participants described

being forced to maintain a short-term outlook, dependent on others for help and unable to

improve their circumstances or plan for the future. There was a common linking theme of

feeling trapped in conditions that compromise dignity (Table 1, quote 1.4). Adults described

poor children in the valley as those seen wandering in the streets, inadequately clothed and

without shoes, not in school, and hungry. Although the sampling for in-depth interviews was

progressively focused on poorer households, participants did not refer to their own children in

these terms, but focused on other children.

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6. Results: Child Health Problems (Table 2)

The main child health problems in the valley identified were tuberculosis, malnutrition

(undernutrition), asthma, seasonal respiratory tract infections and diarrhoea, HIV, rashes,

teenage pregnancy and depression (Table 2, quote 2.1). Children spoke about sadness and

exclusion, suggesting that children suffer from depression and lack of support to meet their

needs. (Table 2, quote 2.2). Parents and health workers alike referred to seasonal illnesses such

as the flu, respiratory and diarrhoeal illnesses. Environmental exposure, particularly cold, was

thought to contribute. Tuberculosis was identified by adults and health workers as a major

problem for all groups, and was noted to be more common in poorer households.

Health workers cited chronic undernutrition as the most important child health issue and the

top priority for intervention. Poor nutrition was linked to neglect, which in turn was linked to a

poor diet. (Table 2, quote 2.3). Inadequate diet was linked to poor growth and development,

recurrent infections, and tuberculosis. Severe acute undernutrition was noted to be

uncommon, but a few recent cases had been identified at local clinics.

7. Results: Social Predictors of child health (Table 3)

7.1 Neglect

The main social predictor of child health identified was neglect in the form of both physical and

emotional neglect (Table 1, quotes 1.1- 2, Table 2, quotes 2.2-3, Table 3, quote 3.1). In

particular, neglect due to substance abuse was identified as a common problem in the area

affecting child health and wellness. Participants linked child hunger, inadequate nutrition and

clothing, poor school attendance and environmental exposure to social predictors of all child

health problems

7.2 Cycle of poor parenting skills, breakdown in family relationships, and substance abuse

Neglect, in turn, was closely linked to substance abuse, poor parenting skills, and a breakdown

in family relationships. Young people discussed a lack of guidance and support for their dreams,

and suggested that kids turned to high risk behaviours because of disillusionment and lack of

support from parents and caregivers (Table 3, quote 3.1). This, in turn, was linked with poor

health, teen pregnancy, and limited opportunities for the future. Family living arrangements

with parents in houses and older children in backyard shacks were felt to be illustrative of the

communication barrier between parents and children – the separate living reflected a

breakdown in communication and a growing emotional distance between generations. At the

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same time, these housing arrangements were also thought to demonstrate the difficulties that

young people face in securing their own future.

Adult participants discussed difficulty communicating with their children and concerns about

delinquency, drug use and its effects on physical and mental health and future opportunities

(Table 3, quote 3.2). Health workers described situations where young people left their children

in the care of grandparents who were unable to care adequately for the young children, leading

to poor health outcomes in those children. They also described grandparents taking over the

care of young children, disabling the young parents from assuming responsibility. This was felt

to further erode parent-child communication, and to have harmful effects on the health of the

young children (Table 3, quote 3.3).

7.3 Barriers to education

In spite of the presence of three public primary schools and an Afrikaans-medium secondary

school in the valley, barriers in access to education were significant. Barriers included the cost

of school clothes and shoes and a lack of support for education at home. An underlying barrier

to education was shame – children who had limited access to food were described as less likely

to go to school regularly, in spite of the fact that free school meals were provided (Table 3,

quote 3.4). Poor children were noted to be more likely to be held back in school, and to drop

out. Of the interview participants, only one household participant had completed secondary

education.

7.4 Social exclusion and lack of agency

The communities in the valley are small and have historically closely-knit sub-communities.

Participants living in the most marginalised and deprived circumstances described feeling

excluded from the rest of the valley (Table 3, quote 3.5). In Lanquedoc, the development of the

housing scheme was described as having a disruptive effect on both the previously existing

community in Lanquedoc as well as the small farming communities which were relocated to the

village. The scheme was called a “dumping site” for people working for AngloAmerican on

surrounding farms. The old farm communities found themselves amongst new neighbours,

unemployed, and with few opportunities for work. Some resettled farm workers were

described as having been poorly treated by their past employers. The dispersion of social

networks combined with cultural differences, language differences, and traumatic past

Ayesha Kadir 16

experiences was thought to have led to social disconnectedness, poverty and crime.

Furthermore, while there are several longstanding community-run support programmes

(Appendix 2), participants had variable knowledge about these initiatives. Most participants

cited family as their main source of support. Neighbours helped with food and small cash loans,

and local shops allowed families to buy on credit (Table 1, quotes 1.3-4.). This led to debt and

dependence on others to meet basic needs. Participants expressed a feeling of being unable to

change their situation. This lack of agency was the common thread linking the experience of

poverty, the role of neglect, and subsequent child health outcomes.

8. Results: Current programmes (Appendix 2)

The four villages and two informal settlements are served by a large number of community

programmes, most of which were developed by community members based on local

observations and assessments for need. These programmes are sustained by the investment

and dedication of community members. In spite of this excellent work, participants had variable

familiarity with ongoing programmes. Most household participants identified family as the main

source of support, with limited reliance on external programmes or people. Soup kitchens were

the most widely identified community support programmes in Kylemore and Lanquedoc. Please

refer to Appendix 2 for a non-exhaustive list of current community programmes and resources.

While these programmes were seen as an important source of physical and moral support for

struggling members of the community, some participants voiced a concern that existing

support programmes may potentially undermine parental responsibility, and thus perpetuate

the cycle of lack of agency, poor child health, and poverty.

9. Challenges and limitations of the study

There were a number of logistical challenges for this project that led to delays in data

collection, analysis, and reporting. A delay in access to appropriate, reliable transport for use in

poor areas led to a delay in data collection. The researcher was attacked by a dog whilst trying

to avoid political and wealth associations.

Maintaining high quality and culturally sensitive interpretation, transcription and translation

was also challenging. There were long delays in obtaining transcripts. In order to begin data

analysis straight away, the researcher developed a data summary tool and used this to guide

further data collection. In order to assess the quality of Afrikaans transcription and translation,

transcriptionists were given a sample of files completed by different transcriptionists. The

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researcher also developed a degree of Afrikaans comprehension and assisted in quality review

of all files. The final quality of Afrikaans transcription and translation was high. Due to limited

availability and high cost of Xhosa transcription and translation, the Xhosa transcript quality is

likely limited.

The nature of the donors’ work with the BSDI placed the researcher in a politically charged

position. The research itself remained fully independent, and was developed and carried out in

partnership with the community in a fully transparent fashion and under the supervision of the

London School of Hygiene and Tropical Medicine and Stellenbosch University. Open,

meaningful collaboration with community leaders, members and participants helped to foster

trust and enabled this study to achieve its aims. Community partners were actively engaged

and supportive of the study, facilitated introductions, provided logistical support, and organised

the feedback sessions.

The study methods focused on families with children who were living in deprived

circumstances. As such, the study findings cannot be generalised to the surrounding areas.

Furthermore, as can be seen by the community programmes and assets, the valley is home to a

unique mix of historical, cultural and financial assets, which set the population quite apart from

nearby communities.

There are a few factors which make the findings prone to bias. The methods used to sample

children were by convenience. This makes the findings prone to selection bias of the school

staff – the staff may have chosen specific children to participate because of certain

characteristics which make those children different from the general population of children in

the school. In order to minimise this bias, the school staff were provided with the operational

definitions of deprivation used in the study and asked to structure their selection using these

definitions as a guide. Focus group participation in Lanquedoc was limited, thus leading to a

bias in favour of findings from Kylemore. The participants from the random sample of

households provided recommendations for other interview participants, and thus helpined the

researcher to access deprived families while minimising any inadvertent or intentional bias on

behalf of the researcher and community partners. The demographics of the in-depth interview

participants reflected successful access to increasingly marginalised families. The findings were

internally validated during feedback sessions and externally validated by comparing data of

different types (interviews, focus group discussions, infrastructure evaluation, and

documentary analysis). The internal and external validation provides very strong support for

the accuracy and relevance of the findings and their interpretation.

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10. Discussion

This report presents the views of people living in the Dwars River Valley about poverty in the

valley and its effect on child health and wellness. Many but not all of the participants are

deprived according to the operational definitions used for this study (see Appendices 1-2). It is

important to note that, when asked about how they viewed themselves, most of the household

participants considered themselves to be poor, citing housing and employment as the main

defining factors.

The social issues raised by children and expanded upon by adults are, from a biomedical

perspective, likely to have a number of serious effects on child health, growth and

development. These, in turn, will affect the opportunities and life potential of the children.

They will also affect the long term mental and physical health of each affected child. A number

of biomedical theories about the role of stress and childhood adversity on later childhood and

adult health have arisen during the past few decades. Much of this research has been focused

on studying how childhood circumstances influence adult health. Particular attention has been

made on the effects of child abuse and neglect on both health and social outcomes. In more

recent years, research has focused on how social factors affect the neurologic and emotional

development of the growing child (4, 14-16). While this has implications for later adult wellness

and productivity, it also has very strong implications for child wellness and risk behaviours such

as those described by the child and adult participants of this study. Substance abuse is a well

known risk factor for child maltreatment, and substance abuse rehabilitation programmes have

been shown to improve both parental attachment to the child as well as child growth and

development(17-21).

Neglect of children and lack of agency amongst adults are the critical findings of this study.

These topics warrant further exploration with the communities to uncover why they are

occurring and what sorts of interventions should be considered to alleviate them. Parenting

skills, a breakdown in family communication, and substance abuse were causal factors that

were commonly cited by household participants and community leaders alike. Community

inclusion in this small and close-knit valley is also likely to play a protective role for substance

abuse, family stability, parenting skills, neglect, and ultimately, child health. Conversely, the

exclusion described by people living in marginalised circumstances will likely exacerbate the

sense of loss of control, substance abuse, and child neglect. These in turn will lead to worse

child health, poor school attendance, and limited opportunities for children to create a better

future for themselves.

The findings demonstrate the value and depth of insight that children have to offer to research.

The important insight of children will also be helpful to guide development and expansion of

contextually appropriate community programmes. Children raised the issues of neglect, child

Ayesha Kadir 19

depression and social exclusion. By doing so, they created a platform for open discussion of this

sensitive topic with adults. The main finding – that neglect is the major predictor of child health

in the valley – was an unexpected by the research team. The incorporation of children’s views

and the realignment of adult focus to reflect the needs and views of children was instrumental

in bringing about the findings of this study. This approach is quite different from the more

common process of considering the responsibilities of adults towards children in the context of

other priorities. The fact that the communities agreed with findings is further evidence for the

value children’s input and priorities in research. This is particularly important for intervention

research, or research designed to inform policy and programme development.

Another important aspect of this study was the focus on identifying adults living in marginalised

and deprived circumstances and seeking their views about child health and poverty. Most

research on poverty to date is done using quantitative methods for predefined categories and

descriptors of poverty (14, 22-24). Such research does not take into account the ideas and

views of people who are poor about how to define and describe poverty. While community

leaders, health workers and politicians can give informed opinions about this subject, the

expertise of people living in deprived circumstances cannot be overstated. The only means to

understand the realities, perspectives and priorities of poor and marginalised populations is to

partner with them at all stages of the research and programme development processes. For

individuals and groups wishing to develop intervention based on the outcomes of research such

as this study, the identification of target priorities and the methods of intervention should be

developed in partnership with the target population, and ideally led by these groups, in order

that programmes may be truly beneficial, will avoid harmful consequences, and have good

beneficiary uptake.

This study was challenging in numerous ways. As an outsider to South Africa, the researcher

was not familiar with the subtle nuances of local racial, cultural and political norms. Guidance

from community members and leaders was helpful in navigating these issues. The main

challenges were related to funding and a limited availability of Xhosa translators and

transcriptionists. This latter challenge is a finding in itself, as it points to a skills gap amongst

Xhosa-speaking populations, and implies barriers in access to education and the opportunities

that education can provide. After a trial with a lay Afrikaans translator, data collection was

carried out with the assistance of a professional Afrikaans translator and a lay Xhosa translator.

Transcription was done by lay Afrikaans transcriptionists and a mix of lay and professional

Xhosa transcriptionists. The Afrikaans work was checked by a linguist for accuracy, and

confirmed by the primary researcher, who became proficient in written Afrikaans

comprehension during the course of the study. Xhosa transcription and translation accuracy

was not verified, and the quality of this work is likely lower than the Afrikaans language files.

Ayesha Kadir 20

Another challenge related to trust and access to the genuine views of impoverished and

marginalised populations in the valley. The researcher had limited access to transport during

the first half of the study, and had to rely on the use of loaned vehicles and a bicycle. One of

these vehicles was a luxury car, which is highly inappropriate for use while visiting with

impoverished families and asking about their life struggles. Another vehicle was loaned from a

local farmer, and its use carried with it political associations. The nature and degree of

disclosure by participants is likely to be affected by these factors. The variable use of cars,

including the use of an unassuming rental car for the latter half of data collection, together with

the growing familiarity of community members with the researcher as an independent worker,

may have had a mitigating effect on this influence.

11. Conclusion

Poverty in the Dwars River Valley is manifested by multifactorial social factors, including

substance abuse, poor parenting skills and a breakdown in family relationships. These factors

are associated with child neglect and a number of other child health problems. Social exclusion

plays an important role in child health as well as the experience of poverty by adult community

members. Underlying all of these issues was a lack of agency, seen by a loss of hope and the

sense amongst adult participants that they were unable to improve their circumstances. A

number of community programmes are currently in place to alleviate suffering. In the context

of this pre-existing momentum, the community is well-positioned to prioritise and intervene on

the findings of this study to improve child health and wellbeing.

Ayesha Kadir 21

12. Recommendations

1. The main issues affecting child health and wellness identified were lack of agency and

child neglect. These should be the target of further research and interventions.

2. Before developing new programmes or making structural changes to current

programmes, a deeper understanding of why people feel that they cannot control their

lives or future should be sought.

Discussions should be held to consider how local geography, employment, local

politics, cultural and racial factors, and social support structures influence the ability

of community members to improve their lives.

These discussions should be particularly focused on engaging and including people

living in the most difficult circumstances.

Reaching marginalised people will require outreach with a participatory approach.

This population is, by virtue of their lack of agency, unlikely to join any existing or

new community activities.

3. Neglect is a compelling issue that should be addressed. This can be done in many

different ways.

Since this study was undertaken, community members in Kylemore have begun

exploring ways to improve parenting skills and to support neglected children.

Appendix 3 gives a list of indicators that might be useful to monitor neglect and

other social determinants of health found by this study.

o School attendance, clothing, nutrition are a few basic indicators.

o Children told stories of being alone, excluded and even shunned. This refers

to both neglect within the home and neglect by the community at large.

The isolation described by children is likely to lead to lack of agency, school dropout,

substance abuse, poor health, criminal activity and a cycle of poverty and poor

health.

Ayesha Kadir 22

4. All further research and any intervention should take the following into consideration:

Planning and implementation should involve children and young people in an active

role from the outset.

Priority areas for intervention should be identified in collaboration with children and

people living in marginalised circumstances.

o This method will help to ensure that the programmes address issues that are

prioritised by these groups.

o Focusing on the priorities of beneficiary groups will improve the uptake and

ultimate success of the programmes.

o This approach will empower the more deprived members of the community to

be an active force for change.

Empowerment of both children and adults should be a main goal of any sustainable

development intervention. This will inspire creative thinking and energy within the

communities to uplift themselves and each other, independent of outside help and

input.

Ayesha Kadir 23

Table 1. Views and experience of poverty

1.1 An untidy house. A child with dirty clothes. The child is neglected by his parents. They don’t want the child. It’s the houses. Everything is upside down in that house. Child, Male

1.2 That tells me nothing…people they, they really aren’t for their children. They don’t…they simply throw their children away. Child, Female

1.3 Poverty means hardship. Hardship, it’s a different thing, because there’s, there isn’t any food, there is nothing, we try everything we are capable of. The money that we get at the end of the month also just goes for water and tax and the debt that we’ve made at the shops throughout the month, so that we have food that we can eat and that we can stay alive. Sometimes like now, there is no food, we were without food for almost three days and every week my father and my children are asking me for a piece of bread and sometimes I am so sad, because there is nothing that I can do. Now we can’t go and ask at the shop anymore, because we are behind and we still owe them money, but they understand, that’s why we don’t take food and stuff on the account anymore. Adult, Female

1.4 Yho! Poverty is that we do not have money. Since we do not have money, we live from my husband’s grant. When his money runs out, it becomes a problem. So I must go and borrow from other people. So when I get the children’s grant, I must repay my debts. Because I borrow hundred hundred from different people. You find that I am buying groceries with R200. Only the R200 is left so I buy food with that R200 electricity as well in the same money. That is the poverty we have in this home... I am very poor... If I worked I wouldn’t see myself as poor... So I don’t work, I had to leave work because of my health. If I worked, I wouldn’t be poor. Adult, Female

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Table 2. Child health problems

2.1 But then you also really have to look at these people’s circumstances. Because most of those places are wet and the peoples’ houses’ foundations are level with the road. So the water just streams in. And they need, with the roofing it is such poor quality it bends. They say they lie, when the wind blows then those roofs are open and they can see the stars. So it really comes into the houses. The basic structure which the municipality has given the people is weak… And it is from that that people get sick. There is not enough food, people are defenceless, it is all those things which accelerate TB; TB is really becoming a problem in Kylemore. Adult, Female

2.2 Someone who is poor, he does not have his family; he’s just, he’s alone. Someone, who’s like, who’s like in a, how can I say, he like struggles to fit into the world. And no one wants to help him. Child, Male

2.3 The main health problem is... they don’t have proper nutrition. That is the biggest problem I’ve seen. You see children that isn’t fed properly. And they just get chucked sweets and whatever... What I see is a big percentage has poor growth and poor development. There is a percentage that is really, you can see the stunting in their development. Health worker

Ayesha Kadir 25

Table 3. Social Predictors of child health 3.1 You don’t have self-pride. Yes, the youngsters that don’t have self-pride because of

these things happening in our community. They, they be come in to the house. Oh, father is drunk. Oh, mother is drunk. Little sister is walking around dirty. They, they don’t care! So then he thinks why do I need to care about them? They don’t care about me, so why do I need to care about myself? So all those things coming into play. So you, there’s why you get young prostitutes, early as ten, upwards. Drug abuse in, in young boys. Well it is like a nail in a coffin. Adult, Male

3.2 …A child living in a tin-house and there are one or two or three or four children. At the end of the day the place feels totally over-crowded for the child. He can’t do his schoolwork, he can’t… and at the end of the day he drifts toward the road and then he is exposed and gets pushed into groups…and then he becomes involved with the wrong elements and the wrong people. Like I said the other day, the four children that worry me are the children that sit there and smoke cannabis and that stuff at their houses; and those children become withdrawn... They smoke cannabis, no one worries about them…They are busy becoming criminals and what is worse is that the school doesn’t care. Adult, Male

3.3 I was disappointed. Because the grandmother actually needed care herself. But grandmother must...look after great-grandchild. Granny holds the great-grandchild by the arm. Granny lies on the bed. And the great-grandchild holds granny’s arm. She can’t even pick up the child. The child, the baby cries. Adult, Female

3.4 One of the children said to my friend that he can’t go to school, because there is no bread... Most cases, as I said, it’s that there is no food….When it rains, then I see the kids walking outside without shoes on their feet, noses running and they look so dirty, then I will always think that these children's colds will never end. Adult, Female

3.5 Poverty, poverty, if I say it how I understand it, then I think poverty is like our cases. Poverty, here is just no help. We vote every five years, but there is just no help, really. Here is no help. The other thing is that here is no interest from other people, unless it is somebody that we know. And for people that don’t know us it will look like, because we stay in a bush. Then it feels to us as if we don’t exist. Adult, Female

Ayesha Kadir 26

Appendix 1. Operational definitions of deprivation (25)

Category Description

Food Variety of food, frequency and duration of hunger, presence of malnutrition by participant report

Safe drinking water Access to potable water for drinking, cooking and washing, including description of the nature of access and barriers

Sanitation facilities Access to sanitation facilities, nature of access and barriers

Health Access to health care including distance to facility, opening times/availability of health care providers, ability to access health care in emergencies, barriers to care, and the cost of accessing and obtaining care

Shelter Type of dwelling and stability of the structure, protection from the physical environment, permanence of structure, protection from crime, frequency of relocation/security of ability to reside in the shelter

Education Access to school and other educational facilities, nature of barriers to access, cost

Information Kinds of information accessible and means to access information, including word of mouth, radio, television, newspaper, books, library. Includes description of limitations in access, irregularities and barriers.

Basic social services Limited access to health and education facilities, distance from facility, barriers to access

Social and community capital

Ability to rely on family, friends and/or community support systems when in need for any reason. Includes a sense of belonging to a group or community vs. a sense of exclusion

Appendix 2: Community resources (Nonexhaustive)

Food: Shops: Tuck shops in villages that also give food on credit, markets and shops in Stellenbosch and Paarl

Programmes: soup kitchens, school meals, muffin programme (Imbali). Soup kitchens run 4-5 days/week during winter months. Informal community support from neighbours and other individuals

Shelter: Family support, housing associations (Lanquedoc and Kylemore) Water: Piped water from municipal lines serve all villages.

Public standpipes provide water for people living in the Giff and Meerlust, <15 minute walk from shelters Sanitation: Sewerage in formal settlements, serves all formal housing structures and some shacks and bungalows

No facilities in informal settlements Electricity: Variable supply, most households used prepaid electricity Transport Public minibuses to Paarl, Stellenbosch, Lanquedoc, Pniel, and Kylemore. Buses run daily at irregular times Education Pniel: Pniel Primary School: Afrikaans-medium primary school; Nondzame Primary School: Xhosa/English-medium primary school

Kylemore: PC Petersen Primary School: Afrikaans-medium primary school; Kylemore High School: Afrikaans-medium secondary school Lanquedoc: served by Pniel and Nondzame Primary Schools. Some children attend Simondium Primary School. Xhosa/English speaking students must travel to Groondal (Franschoek) for secondary school Kylemore crèche (Imbali) - subsidized Private crèches

Information Pniel library, Schools, Riviernuus, radio, television, other local newspapers (many read The Sun). HTV at Kylemore Clinic, Health counseling at clinics

Health Public: Kylemore Clinic, Drakenstein Clinic, Mobile clinic, home-based carers, and hospice volunteers.

Private: GP surgery in Kylemore Hospital: Stellenbosch and Paarl. Ambulance service throughout Sport programme – Mike Fraser

Ayesha Kadir 28

Safety Police based at Groot Drakenstein, regular patrol, women’s shelter programme for domestic violence

Lanquedoc and Kylemore have police forums and neighbourhood watch programmes which communicate and work together Kylemore safehouse Police outreach programme to children Meeting halls: Kylemore: community centre, church halls Lanquedoc: St. Gile’s Church hall, limited access for Xhosa-speaking people Pneil: Church Employment Irregular casual labour on nearby farms and for municipal work Casual (“char”) work in houses in the valley and nearby towns Gardening and house repair work in the valley and nearby towns Meerlust: mainly earn money selling wood and casual labour on farms Other community programmes and organisations Women’s groups: Kylemore (Women’s supporters, Tannie Siena) and Lanquedoc (Mother’s Union) Churches: Kylemore, Lanquedoc, and Pniel, most work is independent of each other Council: Community Development Workers Boschendal Treasury Trust Boschendal Sustainable Development Initiative Banhoek security NGO/CBO Women’s groups – Kylemore (Women’s supporters) and Lanquedoc (Mother’s Union)

Imbali Social work- Mrs Coetzee, falls under Paarl Eye on the Child ACVV “Give Me A Chance” – Winery charity CORC Kindersorg

Agency/Participation: Riviernuus – place for community members to voice interests, concerns, and ideas, reach is dependent on literacy

Call in radio programme in Paarl (Siena)

Appendix 3: Social indicators of child health in the Dwars River Valley

Indicator Definition

Neglect Child hygiene, going barefoot, inadequate/torn clothing, begging for food, poor school attendance

Social support Children who feel unloved or unwanted

Presence of person/people/programmes from whom head of household receives help and advice

Presence of person/people/programmes from whom children in household receive help and advice

Presence of person/people who provide encouragement and emotional support for head of household

Presence of person/people who provide encouragement and emotional support for children in household

Social participation Attendance at local and valley-wide social functions

Participation in community meetings – housing, development, etc

Attendance at church

Family stability Living arrangements of family members o which family members comprise the household, o in which structures on the housing plot do they live

Caregiver relationship to child (mother, father, grandmother, etc)

Number of children in household

Orphan status of children in household

Housing Type of housing structure: permanent vs temporary

Number of people living in the structure

Number of rooms

Number of structures on the housing plot

Employment Occupation of household members

Number household members with secure employment

Number household members with casual employment

Number unemployed household members

Number of children in the household who are working

Risk behaviours Alcohol, marijuana, methamphetamine and/or tobacco use amongst: children, caregivers, parents, household members

Children and teens having unprotected sex

Child prostitution

Education Parental education

Child school attendance

Barriers in access (language, distance, cost, family support)

Autonomy Proxy indicators: employment, housing, social participation, social support, and education

*Community input is necessary to refine the operational definitions for further use. **Table adapted from Kadir, A. “Qualitative Exploration of the Social Determinants of Child Health in the Dwars River Valley, South Africa”. Thesis: London School of Hygiene and Tropical Medicine, London, 30 September2013.

Ayesha Kadir 30

Appendix 4: Selected Child drawings

Primary school student, age 5

Artist’s description of the drawing: The sun, a flower, and a girl who is

angry because she is poor.

Ayesha Kadir 31

High school student, age 14

Artist’s description of the drawing: “Someone who is poor, he does not have his family; he’s just, he’s alone... Someone, who’s like, who’s like in a, how can I say, he like struggles to fit into the world. And no one wants to help him.”

Ayesha Kadir 32

High school student, age 14-15

Artist’s description of the drawing: “This is a girl. She stays with her mother and…but her mother has a guy but…a boyfriend. But those two sell tik and they have more small children but the children also don’t go to school. The children run around barefoot and play in the water and so on. And come…go to people’s houses and go and take people’s things. They…and they are very hungry. They ask people when they go to the shops then they take chops from the shops or something, then they run out. They just take the stuff. They don’t pay for it.”

Ayesha Kadir 33

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