Tuesday, May 17, 2016

Bibliotherapy in South Africa

Bibliotherapy in a Library Setting: Reaching out to Vulnerable Youth

Natalia Tukhareli
Independent Researcher, MLIS, PhD
ntukhare@gmail.com

Abstract

Bibliotherapy, as a part of expressive therapy, involves the systematic use of books to help people cope with mental, physical, emotional, or social problems. It has been widely recognized as an approach that holds great promise in helping librarians to better address emotional, behavioural and social concerns of various groups of people. The benefits of bibliotherapeutic services such as reading groups, expanded readers’ advisory, books-on-prescription and information-on-prescription services as well as various outreach programs are well documented in the library literature. On the other hand, health professionals who work in cooperation with educators and librarians share medical records on the healing and consoling power of books.
The paper will explore the role of bibliotherapy in a library setting and identify particular bibliotherapeutic schemes to be used when serving people affected by HIV/AIDS. The paper will provide an overview of the library project developed to address educational and recreational needs of the African people living with HIV/AIDS. The project was successfully implemented at the Nkosi’s Haven Library in Johannesburg, South Africa in 2010. Although the project targeted all the residents of Nkosi’s Haven, the paper will focus mostly on the part of the program developed for children and young adults. The paper will identify psychological and social factors that affect the targeted group of children within the African environment. Particularly, it will highlight a negative effect that stigmatization around the disease has on the lives of the HIV-infected individuals and their families. Within this context, bibliotherapy is seen as an effective way of reaching out and breaking the isolation of people, especially children living with HIV/AIDS. The paper will describe specific activities strategically chosen for the bibliotherapy sessions to provide a channel through which the participants of the program could analyze their behaviours or situations and address their concerns. It will also provide a list of books selected for the targeted group of children and young adults. The paper will highlight the great potential of bibliotherapy in addressing the needs of vulnerable people and thus justify the importance of implementing bibliotherapy within the library setting.

Keywords

bibliotherapy; children’s library; HIV/AIDS; collection development; library programs

Introduction

The goal of this project was to identify library materials and bibliotherapeutic techniques to serve the needs of a particular group of African children, young adults and adults, living in Nkosi's Haven in Johannesburg, South Africa. Nkosi's Haven is a recognized NGO offering holistic care and support for destitute HIV/AIDS infected mothers, their children and resulting AIDS orphans. During her stay and work at Nkosi's Haven in the spring and summer of 2010, the author set up a library for the residents of the shelter, developed and purchased a quality collection of books and reference materials relevant to the needs of the residents, and conducted a variety of educational and recreational programs for children and adults, including an innovative bibliotherapy program on HIV/AIDS.
The user group profile was described based on a thorough analysis of developmental, psychological and social factors affecting this group within the South African environment. The analysis revealed complex and varied problems faced by African children living with HIV/AIDS. Particularly, it identified a strong stigma associated with the HIV infection, which in most cases led to reduced social interaction or isolation of people living with HIV/AIDS, lack of knowledge about the disease and a distorted perspective on the culture to which they belonged. These findings provided the context for collection development and the design of bibliotherapeutic schemes to serve the targeted group of children and young adults.
Based on the user group profile, educational and recreational needs were identified and addressed in the Nkosi's Haven Library through its collection and programming. The bibliotherapy program designed for the targeted group of children and young adults aimed to reach out and break the isolation of people living with HIV/AIDS, educate them about the disease, increase their self-awareness and enhance their coping skills. Although the project targeted all the residents of Nkosi's Haven, the paper will focus mostly on the part of the program developed for children and young adults.

About Bibliotherapy

For the purpose of this paper, we define bibliotherapy as the practice of using books to help people cope with their mental, physical, developmental or social problems. Together with other similar practices, such as art therapy, dance therapy, music therapy, and play therapy, bibliotherapy emphasizes the idea of the healing, consoling power of art through its various forms. Today, almost one hundred years since the term bibliotherapy was first introduced to therapists, bibliotherapy has been effectively implemented by a wide range of professionals, including librarians, teachers and social workers.
Recent studies on bibliotherapy show that it could be successfully implemented to help diverse groups of people cope with stress, anxiety, isolation, grief and bereavement, domestic abuse, problems related to physical and mental health, or man-made and natural disasters. Bibliotherapy is used with people of all ages in a wide variety of clinical, educational and community settings. The large body of available literature reports on the application of bibliotherapy within a wide range of areas - from conducting bibliotherapeutic sessions with special needs students (Kurtts and Gavigan 23-31) to helping library patrons survive terrorist attacks and natural disasters (Reid and Van Hemert 40-45, Rycik 145-153), to providing self-help books to patrons with mental and physical problems (Brewster 13-16, Turner 56-61). The latter, for example, has become the most common form of bibliotherapy in the UK: a recent survey suggests that "over half of English library authorities are operating some form of bibliotherapy intervention, based on the books-on-prescription model" (qtd. in Morrison par. 11).
The psychological basis of bibliotherapy is related to the psychology of reading and the "book-reader" interaction. In bibliotherapy, the value of literature depends strictly on its capacity to encourage a therapeutic response from the participants. The individual's feeling-response is more important than an intellectual grasp of the work's meaning. When analyzing the bibliotherapeutic process, the researchers often stress the importance of identification as part of an active dialogue between the reader and the character in a book: the reader identifies with some real or fictional character in the book and becomes aware of the parallels between his life and the one in the book (Cornett and Cornett 18). As Herbert and Kent note, bibliotherapy provides a channel for learning "how to solve some of the problems upon reflecting how the characters in the book solved their problem" (Herbert and Kent 169).
Another common view articulated in the literature is that one of the main goals of bibliotherapy is universalization - "recognition that you are not the only one who feels a certain way" (Brewster 14). Bibliotherapy can help an individual to understand that he or she is not the first or the only one to face a specific problem or challenge. Other important goals of bibliotherapy include: relieving emotional or mental pressure; developing an individual's self-concept; communicating new values and attitudes with regard to the problem; as well as providing clients with alternative solutions to the problem.

Background to the Problem

According to UNAIDS Report on the Global AIDS Epidemic 2010, Sub-Saharan Africa remains the region most heavily affected by HIV. More than 14.8 million children in Sub-Saharan Africa were estimated to have lost one or both parents to AIDS in 2009 (UNAIDS 11). The research studies addressing the situation with AIDS in Africa identify the major factors that contribute to the spread of the epidemic in this region. The common view expressed in the literature is that poverty, income inequality, gender inequality, cultural reality and the strong stigma surrounding the disease are the main reasons why Africa bears the major burden of the epidemic (Cohen 1, Richter and Desmond 1026, Bunn et al. 206). Stigma associated with HIV infection can unfavourably impact the lives and behaviour of people living with HIV/AIDS. The HIV-positive individuals and their family members often experience "prejudice, discrimination, stereotyping, and exclusion" (qtd. in Bunn et al. 198).
Feldman et al. examined how the stigma of AIDS often results in negative attitudes and a lack of empathy toward persons with AIDS among Zambian high school students. The study showed that while most students expressed compassion for persons living with AIDS, many believed that people living with AIDS should be locked up permanently or even killed. During focus groups and individual interviews, some students were quite candid about how they felt about persons with AIDS: "Since there is not yet cure for AIDS, people with AIDS should be killed to reduce the spread of AIDS, or to stop the spread of AIDS" (Feldman et al. 131).
Stigmatization can affect not only the lives of HIV-infected individuals, but also their families and friends. Mason's study shows that in children experiencing stigma by association with their HIV-positive mothers, stigma is exemplified by reduced social interaction or isolation and feeling of shame. In addition, stigma by association is a predictor of adverse outcomes, for example depression, loneliness, externalizing behaviour and low self-esteem. The following statements made by African American adolescents during the interviews illustrate the findings of the study:
I feel worse about myself because my mom has HIV; Because my mom has HIV, I feel apart and isolated from the rest of the world; Friends would drop me if they knew my mom has HIV; People would think I am a bad person if they knew my mom has HIV; Most people think that a person with HIV is disgusting. (Mason et al. 67)
Another major psychological factor we need to take into account when approaching this group of children is that they might face death in a family and go through bereavement. HIV/AIDS is a multigenerational family disease: death and losses occur across generations. Many of these children and families must cope with multiple deaths and losses, and thus have little time either to prepare for death or to mourn past losses. Thus, bereavement is a major psychological stressor in their lives (Boyd-Franklin, Steiner and Boland 6). Developmental grief comprises a full spectrum of emotions, such as fear and anxiety, anger, shame and guilt, and depression (Di Ciacco 93). Also, with AIDS mourners, grief is made more difficult by some other factors with which they must also cope. Their issues are frequently compounded by poverty and various levels of family dysfunction and stigma (Silverman 78).
Research has also shown that HIV-infected children might experience severe psychological or emotional problems due to a lack of adults emotionally available to these children. It has been widely recognized that a young child needs a warm, intimate, consistent and predictable relationship with a mother to grow up psychologically healthy. Clinical observations revealed that trauma, neglect, parental loss and separation increase the risk of insecurity as an adult. Without a consistent and predictable caregiver, isolation-rearing can result in disorganized social behaviour (Di Ciacco 51).
Finally, when working with this particular population of children, we need to take into consideration the impact of chronic illness on the developmental tasks of childhood. Garrison and McQuiston note that chronically ill children face the same developmental tasks and challenges as healthy children. However, mastery of these tasks and successful coping with the typical stresses of childhood are complicated by the ongoing presence of a disease that can significantly alter the child's physical and mental functioning, as well as his or her interactions with the environment (Garrison and McQuiston, 25).
To summarize, the AIDS epidemic has made an unparalleled attack on the lives and well-being of children in Africa. HIV/AIDS affects children on many levels - economically, socially and psychologically. Children's vulnerability is a product of a number of factors, such as poverty, multiple deaths and losses in a family, various levels of family dysfunction, lack of education about HIV/AIDS and the strong stigma surrounding the disease. Stigmatization puts enormous psychological strain on children living with HIV/AIDS. It often prevents children from articulating their concerns and fears as well as triggering a full spectrum of negative emotions, such as anxiety, anger, shame and guilt, depression and despair, loneliness, fear of social isolation and fear of death. As a result of the stigmatization of the disease, many HIV-infected children and their families live in a "conspiracy of silence" (qtd. in Boyd-Franklin, Steiner and Boland 5).

Problem Statement

A thorough analysis of the social, developmental, psychological and emotional effects that HIV/AIDS has on African children helped to create a comprehensive profile of the targeted group of children. The user group of Nkosi's Haven Library could be described as a group of children and adolescents between 3 and 19 years of age, both HIV-positive and HIV-free. All children have at least one family member living with HIV; some have been orphaned because of HIV/AIDS. The disease might impede cognitive development of these children, particularly the development of literacy skills. Children might experience severe psychological and emotional problems, such as depression, anxiety, loneliness and low self-esteem. In addition, children may face multiple deaths in their families and go through bereavement. Due to the "secrecy" surrounding HIV/AIDS, children might not have access to relevant information on HIV/AIDS. Also, they might be stigmatized by their peers outside Nkosi's Haven and be rejected by extended family members or larger communities. Stigma and bias around the disease may negatively affect the way children conceptualize the disease. Moreover, stigmatization might cause low self-awareness in children and thus distort their perception of the cultural domain to which they belong.
Based on the user group profile, the following educational and recreational needs were identified and addressed in the Nkosi's Haven Library through its collection and programming:
  • Children need to be educated about HIV/AIDS through materials appropriate to their age and developmental level.
  • Children need to be educated about their culture to define their place in the world and to develop self-awareness and a sense of belonging.
  • Children need to be given a safe place, a "shelter" where they have a chance to expand their world through creative interaction with books and their peers.
Given the fact that home and school environments in Africa often do not encourage young children's active participation in making meaning of HIV/AIDS, a library can become a "safe place" where children might feel free to talk about the disease and ask questions. Within this context, bibliotherapy is seen to be an effective way of addressing educational and recreational needs of African children living with HIV/AIDS. Strategically chosen stories can provide a channel through which children can discuss their behaviours and get insights into their own situations. Books can help children see universality in difficulties that they are experiencing ("I am not alone," "AIDS is not an African disease"). By stimulating a sense of a shared fate with others, bibliotherapy can help a child overcome loneliness, isolation and despair.

Objectives

The objectives were identified based on common cognitive and affective changes that clients experience through bibliotherapy. It was anticipated that at the end of the program, the participants would:
  • increase their awareness about HIV/AIDS (understand what HIV and AIDS mean and how the HIV virus affects the immune system; identify ways in which HIV is transmitted; and learn how to protect themselves from contracting HIV);
  • gain comfort in thinking and talking about HIV/AIDS;
  • reduce the intensity of their emotional and psychological pressure;
  • become aware of the "universality" of problems and challenges they are going through;
  • obtain insight into their own situations;
  • feel less isolated and gain an increased network of emotional support;
  • respond to people with HIV/AIDS in a caring and compassionate manner;
  • enhance essential coping skills, positive thinking, and appreciation for life.

Methodology

The methodology involved an extensive literature review as well as one-on-one and group interviews with the participants of the program. The conceptual framework of the project was based on a thorough analysis of both the theoretical and practical aspects of bibliotherapy, such as types of bibliotherapy, goals and objectives, methodology, the psychological bases of bibliotherapy, book selection, evaluation, as well as challenges and concerns about bibliotherapy. A comprehensive review and analysis of the literature on developmental, psychological and social factors affecting African people living with HIV/AIDS helped to describe a user group profile as well as provided context for collection development and the design of bibliotherapeutic schemes to serve the user group. The analysis of a variety of bibliotherapy practices and case studies in the UK and North America helped to identify the ways bibliotherapy could be used to help the targeted group of children cope with life.
Overall, 82 people - 59 children and young adults (age 6-19) both HIV-positive and HIV-free and 23 adults (age 20-58) all HIV-positive participated in the Bibliotherapy Program on HIV/AIDS. The program was designed in a 3-month cycle and delivered through weekly sessions. Each group session was 45 minutes for children and young adults and 1.5 hours for adult participants. The evaluation activities were conducted at the end of the program cycle. A thorough analysis of the data collected through the following activities provided clear evaluative information about the effectiveness of the program.
  • Oral quizzes were conducted for each age group at the end of the program to ensure that the young participants successfully acquired essential information about HIV/AIDS.
  • One-on-one interviews with the adult participants were conducted at the end of the program to evaluate changes experienced by the participants to ensure that program objectives were achieved.
For the list of questions used during oral quizzes and interviews, see Appendix 1.
The following criteria were used to select appropriate bibliographic materials used during the bibliotherapy sessions:
  • accuracy and currency of the information on HIV/AIDS;
  • relevance of the content (reading and discussing the book provides insight into the problem to be solved);
  • appropriateness of the information to the children's developmental level;
  • a high level of sensitivity in approaching terminal illness and death;
  • literary value;
  • illustrations creating a good visual image;
  • accuracy of cultural details and interpretations.
For the list of books selected for the bibliotherapy sessions, see Appendix 2.

Program Sessions and Activities

The bibliotherapy sessions addressed the following issues:
  • HIV/AIDS: terminology; facts and myths about HIV transmission and prevention.
  • Death and Loss: death as a natural part of the life cycle - universal, inevitable and irreversible.
  • Positive thinking and appreciation for life.
  • African cultural norms and values: to broaden children's perspective on their ethnic roots and traditions, enhance their appreciation of African culture and develop self-awareness.
It should be noted that for African children affected by HIV/AIDS, the development of self-awareness becomes of special importance since their perspective on African culture is often significantly distorted by the negative cultural connotations attached to HIV/AIDS. The study of the ways in which seven- and eight-year-old children in South Africa understand HIV/AIDS revealed stereotyped attitudes towards HIV infected people. Collectively the children associated HIV infection with black people. When asked about the disease, a common response was: "Some blacks are getting it" (Bhana 313).
The above mentioned topics were explored through individual and group read-aloud sessions, group storytelling sessions and one-on-one conversations with the participants of the program. The group sessions for young children lasted 45 minutes and were conducted in a small group setting (4-5 children of the same sex and age group).
Due to the well recognized therapeutic value of the read-aloud group sessions, they constituted the main component of the program. The benefits of these types of sessions are well documented in the literature on bibliotherapy. As Jane Davis states, "the read-aloud model facilitates the creation of a series of powerful interplays: between the written text and the aural experience; between hearing the text from outside and processing it within; between one's own experience and that of the author and characters; between the privacy of personal consciousness and the public experience of group discussion" (Davis 715). It should be mentioned that the read-aloud sessions designed for the bibliotherapy program on HIV/AIDS included a strong educational component since one of the primary goals of the program was to increase the HIV awareness of the participants in the program. The facilitator would explain the HIV/AIDS terminology and teach the HIV/AIDS related issues while reading a particular children's book on HIV/AIDS.
The storytelling sessions were considered particularly important for a targeted group of people since they honour the oral tradition which coexists with the reading culture within the African context. Sarah Webb, who studied library services in Rwanda and worked on a few local library projects there, emphasized the central role of storytelling in education and library service in Africa (Webb 28-30).
Table 1: A Step-by-Step Description of the Program Activities
Program Session
Sequence of Activities
Read-Aloud Sessions
  1. Warm-up activity: the facilitator introduces a topic for a session.
  2. Read-aloud activity: the facilitator reads the selection aloud clearly.
  3. Guided group discussion: the facilitator initiates and furthers a discussion allowing each member to contribute ideas and feelings about the literature. The participants are encouraged to ask questions and share their stories relevant to issues and situations discussed.
  4. Writing activity (for adult participants only): the participants are asked to fill out the participant reflection forms. The forms include open questions related to the topics covered during the session.
  5. Follow-up activity: participants' reflections and comments.
Storytelling Sessions
  1. The facilitator tells or reads a story selected from a collection of African folktales (with particular emphasis on the "orphan tales").
  2. The participants identify and discuss the moral of the story through a guided group discussion.
  3. The participants retell the stories as a group or individually.
The "Wall of Happiness" Sessions
  1. During one-on-one conversations with the facilitator, the participants are asked to identify a few things that make them feel happy.
  2. The facilitator displays all the individual answers on colourful posters (with participants' permission).

Outcomes

The participant outcome analysis based on the data collected throughout the evaluation shows that:
  • Approximately 92% of young participants (54 out of 59) demonstrated
    • increased knowledge about HIV/AIDS and related issues
    • an understanding of the universalities of the difficulties they are experiencing.
  • Approximately 78% of young participants (46 out of 59) acknowledged
    • a decreased level of fear about HIV/AIDS
    • an increase in their comfort level in thinking and talking about HIV/AIDS.
  • Approximately 91% of adult participants (21 out of 23) reported
    • a decreased level of isolation and mental and psychological pressure
    • improved self-esteem and orientation to reality
    • enhanced positive thinking and attitudes
    • strengthened coping skills.
  • Approximately 43% of adult participants (10 out of 23) developed an action plan to make a positive change in their current situations.
The interview data collected through the "Wall of Happiness" sessions revealed that approximately 38% of children (18 out of 48) mentioned books, reading and the library as something that makes them feel happy. Listed below are some of the responses that children made in relation to the following question: "Could you please tell me about a few things that make you feel happy?"
I feel happy when I: play with my friends; learn how to read; spend time with my family (Odelle, 8); think of my mom who was beautiful; speak with Rumbi; read books (Bonolo, 13); play with my friends; come to the library; borrow a book in the library; draw with a chalk outside (Christine, 6); read books in the library; listen to a story; see animals in the Zoo; see birds flying in the sky; when my father takes me home (Syiabonga, 6); play with my friends; eat cornflakes; come to the library; go to the church; when somebody reads a book to me (Sibongile, 8); read books; play with my mom; play drum (Junior, 6); go to the park; go to see my brother; come to the library; eat cakes, jelly and custard; when I am with my mom (Philisile, 11); come to the library; play with my friends; go to my cousin; go to the movies with my mom (Jester, 8); read books; draw pictures; play with little babies; when my mom hugs me (Sphiwe, 9); play nicely with my friends; read and do puzzles in the library; follow my mom when she walks (Innocent, 6).

Findings

The Nkosi's Haven Library project has proved that the future of children's libraries in African countries as well as in all developing countries lies in our attempt to design a "space" and a "place" that will aim at an adequate satisfaction of fundamental human needs. It has demonstrated that a library, with its collection, services and programs, could become a safe environment where the needs of love and belonging, self-esteem and self-actualization, education and aesthetics could be met.
The project justified the importance of the implementation of creative bibliotherapy within the library setting. It proved that bibliotherapy has great potential in addressing the needs of vulnerable groups of people, especially children. Bibliotherapy can help children cope with their own physical, psychological and social problems, and become more compassionate to other people's problems. By recognizing similarities between themselves and book characters, a child can understand that he or she is not the first or only one to face a specific problem or challenge. By reinforcing a "child-book" connection, bibliotherapy reveals the power of a book to a young reader: a book might be a friend, a companion or just a safe place, a "shelter."

Conclusion

I have always believed in the consoling power of books and the reading process itself. During the three months that I spent at Nkosi's Haven, I had a chance to see this power in action. Books helped these kids escape. Books helped expand their world, which was especially beneficial because in most cases the children at Nkosi's Haven were trapped in their physical and emotional problems. Although I realize that books cannot protect the children of Nkosi 's Haven from the reality where, in the majority of cases, there is "no escape to a happy ending," I believe that they can help children build the coping skills they need to survive in this harsh reality.
Although this project targeted the HIV/AIDS community in South Africa, its outcomes could find a primary application within the Canadian context and be used to help Canadian children and adults living with or affected by HIV cope with their lives. Moreover, the bibliotherapy program could be successfully implemented to serve the needs of other groups of library patrons within the Canadian community - from Aboriginal people in Northern communities, to immigrants and refugees who often cope with emotional problems when adapting to a new environment, to children living through tragic events as a result of both man-made and natural disasters (e.g. children from Haitian or Japanese communities in Canada who were affected by devastating earthquakes).
Overall, I truly believe that bibliotherapy can help strengthen relationships between public libraries and their communities. By developing and providing bibliotherapy services targeting vulnerable children and adults, public libraries will reinforce their commitment to the community they serve. This seems especially important in today's unpredictable reality when people of all ages, and especially children, need help when coping with emotional issues caused by lack of security.

Acknowledgements

The author wishes to acknowledge Susan Getchell and Daisy Oliver for their valuable contribution to the library project at Nkosi's Haven, as well as Gail Johnson, a Founding Director of Nkosi's Haven, for her help with the implementation of the library programs.

Works Cited

Bhana, Deevia. "Childhood Sexuality and Rights in the Context of HIV/AIDS." Culture, Health and Sexuality 9.3 (2007): 309-324. Print.
Boyd-Franklin, Nancy, Gloria Steiner, and Mary G. Boland, eds. Children, Families, and HIV/AIDS: Psychological and Therapeutic Issues. New York and London: The Guilford Press, 1995. Print.
Brewster, Liz. "Reader Development and Mental Wellbeing: the Accidental Bibliotherapist." Australian Public Libraries and Information Services 22.1 (2009): 13-16. Print.
Bunn, Janice Y., et al. "Measurement of Stigma in People with HIV: a Reexamination of the HIV Stigma Scale." AIDS Education and Prevention 19.3 (2007): 198-208. Print.
Cohen, Desmond. "Poverty and HIV/AIDS in Sub-Saharan Africa." United Nations Development Programme Web (1998): 1-5. Web. Feb. 2010.
Cornett, Claudia E., and Charles F. Cornett. Bibliotherapy: The Right Book at the Right Time. Bloomington: Phi Delta Kappa Educational Foundation, 1980. Print.
Davis, Jane. "The Art of Medicine: Enjoying and Enduring: Groups Reading Aloud for Wellbeing." The Lancet 373.9665 (2009): 714-715. Web. Mar. 2011.
Di Ciacco, Janis. A. The Colors of Grief: Understanding a Child's Journey through Loss from Birth to Adulthood. London and Philadelphia: Jessica Kingsley Publishers, 2008. Print.
Feldman, Douglas A., et al. "Attitudes toward HIV/AIDS among Zambian High School Students." AIDS, Culture, and Africa. Ed. Douglas A. Feldman. Gainesville: University Press of Florida, 2008. 123-145. Print.
Garrison, William T., and Susan McQuiston. Chronic Illness During Childhood and Adolescence: Psychological Aspects. London: Sage Publication, 1989.
Hebert, Thomas P., and Richard Kent. "Nurturing Social and Emotional Development in Gifted Teenagers through Young Adult Literature." Roeper Review 22.3 (2000): 167-172. Print.
Kurtts, Stephanie A., and Karen W. Gavigan. "Understanding (Dis)abilities through Children's Literature." Education Libraries: Childrens Resources 31.1 (2008): 23-31. Print.
Mason, Sally, et al. "Developing a Measure of Stigma by Association with African American Adolescents Whose Mothers Have HIV." Research on Social Work Practice 20.1 (2010): 65-73. Print.
Morrison, Blake. "The Reading Cure." The Guardian 5 Jan. 2008. Web. 29 Mar. 2011.
Reid, Martha, and Shannon Van Hemert. "Shelter form the Storm: Resources to Help Children and Young Adults Cope with Grief and Trauma." School Library Journal 46.1 (2000): 40-45. Print.
Richter, Linda M., and Chris Desmond. "Targeting AIDS Orphans and Child-Headed Households? A Perspective from National Surveys in South Africa, 1995-2005." AIDS Care 20.9 (2008): 1019-1028. Print.
Rycik, Mary T. "9/11 to the Iraq War: Using Books to Help Children Understand Troubled Times." Childhood Education 82.3 (2006): 145-153. Print.
Silverman, Phyllis R. Never Too Young to Know: Death in Children's Lives. New York: Oxford University Press, 2000. Print.
Steiner, Gloria L., Nancy Boyd-Franklin, and Mary G. Boland. "Introduction: Rationale and Overview of the Book." Children, Families and HIV/AIDS: Psychological and Therapeutic Issues. Eds. Nancy Boyd-Franklin, Gloria L. Steiner, and Mary G. Boland. New York, London: The Guilford Press, 1995. Print.
Turner, June. "Bibliotherapy for Health and Wellbeing: An Effective Investment." Australian Public Libraries and Information Services 21.2 (2008): 56-61. Print.
"UNAIDS Report on the Global AIDS Epidemic 2010: HIV and AIDS Estimates and Data, 2009 and 2001." UNAIDS Web (2010): 1-32. Web. 29 Mar. 2011.
Webb, Sarah. "Creating a Reading Culture: One Librarian's Mission in Rwanda." Children and Libraries 3.3 (2005): 29-30. Print.

Appendix 1: Questionnaires

HIV/AIDS Quiz Questions

Age group: 6-10

  1. What is a virus?
  2. How does the HIV virus differ from other viruses (for example, flu virus)?
  3. HIV, AIDS... What is the difference?
  4. How do children get the HIV virus in their blood?
  5. Can moms and dads also have HIV and AIDS?
  6. Can animals have HIV or AIDS?
  7. Can one get AIDS from mosquitoes?
  8. Must one always be very careful with blood?
  9. Can one get better if one has AIDS?
  10. Is it alright for everyone to know if you are sick with AIDS?
  11. Can one play normally with someone who has AIDS? Is it safe to hug them, hold their hands and eat with them?
  12. Do you think of HIV/AIDS as an African disease? Do people from other parts of the world get HIV/AIDS?

Age group: 11-19

  1. What are HIV and AIDS? Is it one disease or two different diseases?
  2. What is an immune system? What is immune deficiency?
  3. Why does the HIV virus weaken the immune system?
  4. What are "white blood cells" and how do they fight viruses?
  5. When will HIV cause people to get AIDS?
  6. What happens to a person when he or she gets HIV?
  7. How does a person know if he or she has HIV?
  8. How can people get HIV/AIDS?
  9. What do "heterosexual" and "homosexual" mean?
  10. Is HIV only a homosexual (gay) disease?
  11. What is a condom? How does a condom protect you from getting HIV?
  12. Is there a cure for HIV/AIDS?
  13. How long do people who have HIV or AIDS live?
  14. Do you think that what you have learned about HIV/AIDS made you less afraid of the disease?
  15. Do you feel more comfortable now when you think or talk about HIV/AIDS?

Interview Questions for Adults (Age 20-58):

  1. Could you please tell me if you have learned anything new about HIV/AIDS during our sessions?
  2. What is your opinion about the disease? Has it changed over the past three months? If "Yes", please tell me how and why?
  3. Do you think that our sessions helped you to decrease your fears and concerns about living with HIV/AIDS?
  4. How do you feel about yourself as a part of the community you live in?
  5. Did our sessions help you improve your self-confidence?
  6. Did our sessions and particularly group discussions help you feel less lonely, less isolated?
  7. Did our session on death and bereavement help you deal with the recent death at Nkosi's Village?
  8. Did our sessions help you develop a more positive attitude towards your current situation?
  9. Have you developed any new strategies of coping with stress over the past three months?
  10. Do you feel more comfortable now sharing your concerns and problems with other people? Will you consider disclosing your HIV status to your children if you have not done it yet?
  11. Could you think of any ways how you can improve your current situation (go back to school, find a job, reconcile with your family)?

Appendix 2: A list of books selected for children and young adults


Books on HIV/AIDS

Arnold, Linda. My Mommy Has AIDS. Blue Bell, PA: Dream Publishing,1998.
Atkins, Jeannine. A Name on the Quilt: A Story of Remembrance. New York: Aladdin Books, 2003.
Beake, Lesley, and Karin Littlewood. Home Now. Watertown, MA: Charlesbridge Publishing, 2007.
Bush, Jenna. Ana's Story: A Journey of Hope. New York: HarperCollins, 2007.
Earl, Alexander. My Dad Has HIV. Minneapolis, MN: Fairview Press, 2005.
Ellis, Deborah. Our Stories, Our Songs: African Children Talk about AIDS. Markham, ON: Fitzhenry and Whiteside, 2005.
Ellis, Deborah. The Heaven Shop. Markham, ON: Fitzhenry and Whiteside, 2004.
Hopes, Wishes and Dreams: A Book of Art and Writing by Children Living with HIV/AIDS in their Family. Toronto: The Teresa Group Publications, 2005.
Merrifield, Margaret. Come Sit by Me. Markham, ON: Fitzhenry and Whiteside,1998.
Mhlophe, Gcina. Ithemba Means Hope. Cape Town: Shuter & Shooter, 2006.
Michael, Jan. City Boy. New York: Clarion Books, 2009.
Oosthuizen, Sarah. Nosipho Comes to Stay. Somerset West, South Africa: Nation Rising Publishing, 2007.
Reeder-Bey, Valerie and Annisha M. Wilburn. My Grandma Has AIDS: Annisha's Story. San Diego, CA: Agouron Pharmaceuticals, Inc., 1999.
Schuster, Liz. Lolita and Maria Ask "What is AIDS?" Queenstown, Guyana: The Guyana Book Foundation, 2001.
Stratton, Allan. Chanda's Secrets. Vancouver, BC: Annick Press, 2004.
Tasker, Mary. Jimmy and the Eggs Virus. Newark, NJ: National Paediatric HIV Resource Centre, 1988.
The Group of Five. Bye-Bye Secrets: A Book About Children Living With HIV or AIDS in their Family. Toronto: The Teresa Group Publications, 2002.
Verniero, Joan C. You Can Call Me Willy: A Story for Children about AIDS. Washington, DC: American Psychological Association, 1994.
Vink, Hyltje. Brenda Has a Dragon in her Blood. Durbanville, Cape Town: Garamond Publishers, 2009.
Wiener, Lori S., et al. Be a Friend: Children Who Live With HIV Speak. Park Ridge: Albert Whitman & Company, 1996.

Books on Loss and Bereavement

Buscaglia, Leo. The Fall of Freddie the Leaf: A Story of Life For All Ages. Thorofare, NJ: Slack Publishing, 1982.
LeMieux, Michele. Stormy Night. Toronto: Kids Can Press, 1999.
Mills, Joyce. C. Gentle Willow: A Story for Children about Dying. Washington, DC: American Psychological Association, 2004.
Mills, Joyce. C. Little Tree: A Story for Children with Serious Medical Problems. Washington, DC: Magination Press, 2003.
Olsen, Sylvia, and Ron Martin. Which Way Should I Go? Winlaw, BC: Sono Nis Press, 2008.
Varley, Susan. Badger's Parting Gifts. New York: HarperCollins, 1992.

African Folktales

Badoe, Adwoa. The Pot of Wisdom: Anansi Stories. Toronto, ON: Groundwood Books, 2008.
Bryan, Ashley. Ashley Bryan's African Tales, Uh-Huh. New York: Atheneum Books, 1998.
Bryan, Ashley. Beat the Story Drum, Pum-Pum. New York: Atheneum Books, 1997.
Bryan, Ashley.  The Night Has Ears: African Proverbs. New York: Atheneum Books, 1999.
Bynum, Eboni and Ronald Jackson. Jamari's Drum. Toronto, ON: Groundwood Books, 2004.
Cleeve Dot. The Feather. London: Tamarind Books, 2003.
Diakite, Baba Wague. A Gift from Childhood: Memories of an African Boyhood. Toronto, ON: Groundwood Books, 2007
Diakite, Baba Wague. Mee-An and the Magic Serpent. Toronto, ON: Groundwood Books, 2007.
Diakite, Baba Wague. The Hatseller and the Monkeys. New York: Scholastic Inc., 2009.
Diakite, Baba Wague. The Hunterman and the Crocodile: A West African Folktale. New York: Scholastic Inc., 1997.
Diakite, Baba Wague. The Magic Gourd. New York: Scholastic Inc., 2003.
Fati and the Honey Tree. Winnipeg, MB: OSU Children's Library Fund, 2002.
Fati and the Old Man. Winnipeg, MB: OSU Children's Library Fund, 2004.
Fati and the Green Snake. Winnipeg, MB: OSU Children's Library Fund, 2005.
Kilaka, John. Amazing Tree. New York: North-South Books, 2009.
Lippert, Margaret H. and Won-Ldy Paye. Mrs. Chicken and the Hungry Crocodile. New York: Henry Holt and Company, Inc., 2003.
Lottridge, Celia B. The Name of the Tree. Toronto, ON: Groundwood Books, 2002.
Mandela, Nelson. Madiba Magic: Nelson Mandela's Favourite Stories for Children. Cape Town, South Africa: Tafelberg Publishers, 2002.
Morpurgo, Michael. The Butterfly Lion. New York: HarperCollins, 1996.
Onyefulu, Ifeoma. The Girl Who Married a Ghost: and Other Tales from Nigeria. London: Frances Lincoln Children's Books, 2010.
Tadjo, Veronique, ed. Talking Drums: A Selection of Poems from Africa South of the Sahara. NY: Bloomsbury, 2004.
Wulfsohn, Gisele. Bongani's Day. London: Frances Lincoln Children's Books, 2005.