In this article, I discuss the results of interviews conducted with family members of children and adults with intellectual disabilities in Dar es Salaam, Tanzania. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family needs, hopes, and dreams for the future. The data gathered through the interviews were a part of a wider exploratory study that gathered insight from individuals with disabilities (including intellectual, physical, and sensory disabilities), families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

Family is an important aspect in the lives of people with disabilities because the perceptions of disability, as well as the roles assigned to individuals with a disability, are greatly informed by the family structure and the person’s place within the family (Rao 2006). Family comes to play an even more important role in countries without extensive professional services. Turnbull and Turnbull (2001) assert that when individuals with an intellectual disability are unable to make the decisions in their lives without assistance, that assistance should come from trusted allies – those people who are deeply committed and have genuine emotional relationships with the person. For this study, I defined a family member to be any person who is affiliated with the person with a disability by consanguinity, affinity, or coresidence.

Disability is a cultural creation: disability status depends less on the nature or degree of a person’s impairment and more on societal standards for normative bodies, minds, behaviours, and roles (Armstrong and Fitzgerald 1996; Ingstad & Whyte 1995). Although the definition of intellectual disability in a specific Tanzanian cultural context requires further research and investigation, for the purposes of this exploratory study, I used a commonly-accepted definition of intellectual disability: someone whose intellectual function and adaptive behaviour (everyday social and practical skills) differ significantly from what is normative in his or her society (AAIDD 2011).

Finally, this study attempted to identify family strengths as well as needs. Although researchers have begun to study family needs in Tanzania (Mbwilo, Smide & Aarts 2010), there has not yet been an extensive exploration of family strengths. Even though there are limited data on family strengths in a Tanzania-specific context, researchers such as those who developed the Family Strengths Model (Stinnett & DeFrain 1985) have identified family strengths which have proven to be more or less universally applicable worldwide. In this article, I define family strengths as ‘the set of relationships and processes that support and protect families and family members, especially during times of adversity and change [and that] help to maintain family cohesion while also supporting the development and well-being of individual family members’ (Moore, Chalk, Scarpa, & Vandivere 2002, p. 1). Internationally-relevant examples of family strengths include commitment, appreciation and affection, positive communication, time together, spiritual wellbeing, and the ability to cope with stress and crisis (DeFrain 1999).

Support can often be provided to families in order to build or enhance their strengths. In the context of this study, support is ‘resources and strategies that aim to promote the development, education, interests, and personal well-being of a person’ (Luckasson 1992:151). Family support encompasses the individualised determination of each family's needs, strengths, and preferences as the basis for accessing resources (i.e., emotional, informational, financial, and instrumental) to enhance family quality of life.

Until recently, research on caregiving of children and adults with intellectual disabilities tended to highlight the ‘burden’ of caregiving for parents (Hassall, Rose, & McDonald 2005; Kenny & McGilloway 2007; Salovita, Italinna, & Leinonen 2003). Researchers have identified family conflict, exhaustion, guilt, financial strain, and constricted social lives as negative outcomes of caregiving (Pearlin, Mullin, Semple, & Skaff 1990; Gona, Mung’ala-Odera, Newton, & Hartley 2010) and have identified support, respite care, and future planning as key areas of family concern (Dillenburger &McKerr 2010). Numerous studies have chronicled the stress and burnout associated with caring for a person with intellectual disability, with carers often presenting lower morale and greater levels of depression than the general population (Blacher, Neece, & Paczkowski 2005; Blacher & McIntyre 2006). In spite of the increased levels of stress shown in parents of children with these disabilities, many parents and families of such children are well-adapted and appear resilient in the face of challenges (Gerstein et al. 2009)

In recent years, researchers have shown that, in addition to the challenges, there can be many positive and rewarding aspects of providing care for family members with intellectual disabilities, such as an increased sense of psychological wellbeing (Hong & Seltzer 1995). Moreover, when trying to understand the circumstances or meaning behind having a child with a disability, researchers report that many parents take comfort in their spirituality, which helps them view their child as a blessing or a test of their faith, rather than as a burden (Blacher, Neece, & Paczkowski 2005). Many discussions of caring for people with intellectual disabilities combine ideas of both the ‘burden’ or stress entailed as well as its positive aspects. For example, although Kelly and McGilloway (2007) found evidence of caregiver strain, they also found that most participants were satisfied with their lives, used positive coping strategies, and had realistic expectations for their children and their future. In addition to studying the effects on families (both positive and negative) of caring for a disabled family member, research has also explored certain family traits that may affect the outcome of a their experiences. For example, in a study of hope as a psychological resilience factor in parents of children with disabilities, Lloyd & Hastings (2009) found that hope predicted increased positive wellbeing of families and decreased their psychological distress. Having outlined the nature of this study and discussed caregiving in general, I will now turn to a discussion of disability in Tanzania.

In spite of the somewhat depressing statistics about the inclusion of people with disabilities in such community areas as schools and the workplace, Tanzania has an impressive history of including people with disabilities in national policy documents. Indeed, the government of Tanzania has affirmed the rights of people with disabilities since it passed the Disabled Persons Employment Act in 1982. Disability groups under the umbrella of Shivyawata, the Disabled Persons’ Organizations Federation, have often served as a positive catalyst and key advocates and advisors in the Tanzanian disability policy process. Although the Tanzanian government stands out as an example in Africa for public commitment to people with disabilities via policy, much of the Tanzanian policy concerning rights and services for people with disabilities, such as the 2004 National Policy on Disability, have been problematic because it has typically lacked specific accountability measures that would ensure that national promises are actually carried out in practice (Aldersey & Turnbull 2011).

Recently, Tanzania has taken a great step in the direction of increased accountability measures with the passing of the Disability Act of 2010 (United Republic of Tanzania 2010). As it relates to family, this act does not explicitly highlight the importance of providing support for the family. Explicit references to family made in this Act are in Article 16 and 17, which affirm the collective obligation of relatives to provide social support to their family members with disabilities and enables a person with a disability to utilise legal mechanisms to require monthly financial payments from relatives to the individual with a disability if they do not provide support voluntarily. Although provisions to support the entire family are absent in this Act, the Act does make provisions for healthcare, social support, accessibility, rehabilitation, education and vocational training, communication, employment or work protection, and promotion of basic rights for individuals with disabilities. These provisions are supplemented with such accountability measures that a 3% quota of persons with disabilities be employed in companies of 20 employees or more, the allotment of budget to a National Fund for Disabilities, and the creation of a National Disability Advisory Council. The new Disability Act of 2010 holds great promise for improving the inclusion and quality of life of people with disabilities in Tanzania, if it is implemented as promised.

Interviews lasted between 30 minutes and an hour and 30 minutes. Interview questions focussed upon general family characteristics and goals for the future; how the family came to understand that their member had an intellectual disability, and what, if any, difficulties they have faced, lessons they have learned, or needs they have that are unmet. These questions are presented in the full interview protocol (Box 1). Initially, although the interview protocol included specific questions addressing strengths (e.g. ‘What do you think your family does particularly well?’ ‘What could I learn from your family that I could use to help other families in my country?’), families did not explicitly identify their strengths, thus I modified the protocol to reflect what is described above, and decided that I would have to utilise a grounded-theory approach in a discussion of my findings to identify family strengths from general, life-history-type stories.

Upon leaving the field, I read and reread interview and observation notes twice before identifying tentative themes. I then grouped responses together under tentative themes for further analysis and identification of sub-themes. I was primarily interested in family interview question responses; however, I used my observations to supplement the data provided in interview responses. Once themes and sub-themes were near finalised, I then coded my interviews and observations using a scheme of numbers and letters to designate the major categories and sub-categories in the data. I coded hard copies of all computer files of data using coloured pens to mark the margins with the appropriate numbers and letters. In between the coding of data and the writing of this paper, I made analytical memos which greatly assisted me in preparing to write a first draft, increasing the fluidity and depth of my writing, and enabling me to see how categories are connected in a larger, overall process (Charmaz & Mitchell 2001).

FIGURE 1: Results: Three themes of Dar es Salaam family experiences with intellectual disabilities.

The theme of acceptance was also apparent when I asked respondents what they would tell parents who had just found out that their child had a disability similar to that of their own family member’s disability. For example, one aunt responded that she would tell the family that ‘it [the disability] is God’s plan, God’s wish,’ thus indicating that it was important to accept the child as they are. A mother in a different family responded, ‘First of all, it is acceptance. Acceptance comes with knowledge.’ She went on to express that many of the people who are around at the birth (e.g., doctors, midwives) are not trained in how to counsel families when a child is born with a disability. She suggested that adequate counselling would provide parents with knowledge about the disability, which would then assist in fostering their acceptance of their child and their disability.

Other parents identified the stigma that was shown through the language used by people in the community, such as the use of the derogatory term talia for a person with an intellectual disability. Whereas some families showed anger at community members who called their children names, other families reported that the community has also been a source of support for their members with disabilities: ‘Many people in the neighbourhood accept him. They are very supportive. They have called him names and such, but they have been very supportive to him. They talk with him, and they assist him in crossing the street.’ Another mother told me, ‘some people are accepting of Aziza, and others are not. Those who are accepting do not give us anything, but they talk to her; they have relationships with her. Those who are not accepting, they do not beat her, but they speak bad words to her.’

Stigma was also shown through discussions of abandonment, both of parents who abandoned children because of their disabilities and of fathers who abandoned their wife and family because of the birth of a child with a disability. A large number of families shared anecdotes about other mothers with children with disabilities that they knew who had been abandoned by their husbands because of the child with a disability. Although my sample provides an overwhelming contradiction to stories of family (especially father) abandonment due to the stigma of having a child with a disability in Dar es Salaam, my respondents insisted that this practice was commonplace. In my sample, I only had two families who directly demonstrated instances of abandonment due to disability. In the first instance, the child with an intellectual disability lived with his grandparents who were the primary caregivers because, they said, the mother ‘dumped’ the child with them because of his disability. The father of the child (the grandparents’ son) comes to visit his son nearly every day. Another respondent, a single mother, recounted her husband’s abandonment:

‘I was once married. […] I had two daughters when he left us. Mary was two years old when she got cerebral malaria. When she got this, my husband got superstitious, and he abandoned me. Due to the stigma of disability, my husband abandoned me completely. I have support only from my parents to take care of my children. I have small income-generating activities (selling clothes, ice-cream, and juice at the marketplace) but even this does not support my family.’

Although families told me anecdotes of women left alone and destitute when their husbands abandoned them because of the stigma of having a child with a disability, wealthier families told me of stigma experienced in a different way. Some of the wealthier families mentioned that they were accused of witchcraft because of their child’s intellectual disability. Specifically, they are accused of sacrificing their child’s intellectual capacity or creating a child with an intellectual disability to gain riches in life. One mother identified a term, dondocha, which she said meant that a child started like any typical child, and then the parents take away the ‘normal’ traits of their child and use the child’s spirit to get rich. ‘Often, even if I work hard and earn and have things to show for it, people say “it is because she has that child” and not because I have worked for it.’

What if we die?
Many primary caregivers voiced worry about what life will look like for their member with a disability in their absence. As one mother shared, ‘For parents of children with intellectual disabilities, you don’t know the future. My son is 32. He is living with me, and he is not married like his sister. We don’t know how his life will be. We don’t know.’ A small portion of respondents also mentioned worries that extended family and relatives may take advantage of their children with disabilities, especially if parents were planning to leave their children with an inheritance (e.g., putting the house in their name):

‘My son needs food, clothing, shelter. I am running a small restaurant, but what if we die? His future is uncertain without us parents. We don’t know if his relatives will support him in the way that we are doing. He would have the house, but who knows what people would do to him. They might kill him.’

Interestingly, none of the persons I interviewed expressed the possibility of siblings as potential future caregivers following the death of the parents; however, had I probed this possibility more explicitly, perhaps parents would have also voiced the option of having siblings take over the caregiving responsibilities.

As the following narratives indicate, when asked about their dreams for their future, a number of different families expressed the goal of employment:

‘My son is nonverbal, so I worry about this. If he could be independent, if he could wake up and go do some work, that would be enough for me.’
* * *
‘I see her able to work in a domestic environment, cleaning, cooking, etc. She helps me wash clothes and iron. She also looks after the other children.’ [Note, the daughter of this mother told me that her employment dream was to be a fashion model.]
* * *
‘My son, he can do physical work. He is very strong so as long as it is not dangerous (nothing sharp, no electrical wires) like stacking boxes or something, he could work, and the employer might not even know that he has a disability.’

Finally, similar to the quotes above, as one father said of his son: ‘We would like for him to be a professional, have his own life, his own family.’ In addition to mentioning the importance of becoming employed, respondents also expressed that marriage of the family member with a disability was a dream for the future. A number of families mentioned marriage both to ensure that family member’s fulfilment of what is considered a ‘normal’ life in society, and, in some instances, to ensure that the member with a disability will have others to care for him or her.

Similarly, one father of a son with disabilities expressed his desire for his son to marry so that he might live a normal and dignified life, typical of any other person in Tanzania. ‘I would like for him to get married. He is fond of girls and he understands what marriage is. I would like for him to find a wife so that he can live with respect and dignity.’ Marriage seemed like a desired life goal for most families with members at or reaching adulthood.

Two mothers told me that other families with children with disabilities have come to rely on them, as seasoned parents seen as having valuable experience, for sources of information and support:

‘Because people know me, now they are coming to my house to ask for my advice and help with their children’
* * *
‘Parents who come for advice are few. Many just give up. But those who do come are interested in free medication. Education. But most parents just give up. There was a neighbour who was hiding his child in the house. He saw Mary and came and asked if she went to school and where. Then he started to send his child to school.’

The data indicated that families had a number of responsibilities in terms of support for people with intellectual disabilities. First, parents had a responsibility to care for their child with disabilities. Next, the extended family often provided support but with less of the ‘responsibility’ to provide support. Finally, seasoned family members were also sometimes responsible for supporting other parents in fulfilling their role in providing for their children with disabilities. In addition to family responsibility to support the quality of life of people with disabilities, some families believed that the wider Tanzanian society and even the international community had obligations to provide support.

‘The world over, civilisation is taking care of disabled people. If people with disabilities are eating from trash like dogs and cats, that’s not civilisation. We must organise our support for people with disabilities in Tanzania.… We can learn from other countries and other examples, so that maybe we won’t make the same mistakes that they have.’

The last sentence of this father’s quote hints at the next sub-theme of responsibility: the international community. A number of families identified various forms of support provided by the international community that were important in their lives. These included the free healthcare provided in the Comprehensive Community Based Rehabilitation Tanzania (CCBRT) disability hospital, and various income-generation and microfinance support programmes from international NGOs. Families spoke about these supports as if the international community had a responsibility to provide them and the families had a right to access them. For example, when talking about her son’s inclusion, one parent stated: ‘Government, NGOs, CBOs, should make sure that people with disabilities have the opportunity to participate in all aspects of life-daily activities and economics as well. They [people with disabilities] can do it; they just need the opportunity for participation.’

Finally, as the above quote indicates, a number of families asserted that the government had a great responsibility for providing for people with disabilities and their families.

‘There is a lack of government support. [TAMH exists] because outside organisations are assisting us, but there is no government allotment of funds. We depend on begging for donors. For me, that is key because you can’t have an organisation without [funding].’

Another parent argued that the government has an unfulfilled responsibility to provide disability prevention and parent education once an intellectual disability is identified. A great number of arguments were levelled that insisted the government was not fulfilling its civic responsibility:

‘When you listen to some government officials, they speak as if it is the responsibility of NGOs and civil society to care for these groups, when this is not the case. It is too big for them. We also need government support.’ ( Father of child with ID)
* * *
‘Life in general, here in Africa, especially for families … families of people with disabilities in your country, in Canada, in America, they typically get support from the government. But here we get no support. Here in Tanzania, it is your own problem.’ (Mother of adult with ID)

Other families felt deceived that the government had promised them various forms of support but that they had so far been unable to access them:

‘My son, he takes medication morning and night for epilepsy. I spend 35 to 40 US dollars a month on his medication. I pay for it all. I have no support from the government. It says in the government policy that they should support us, but up to now, I have not seen any of this support. It says in the policy that they are supposed to do this, but I have not seen them do this.’
* * *
‘The local government, they said they would help, and that was six years ago and they have still not helped us. There has been no support from the government and we go and return and go and return to the municipal government office without any result.’

Although a number of parents reported that the government does not provide promised supports (e.g., free health care/medication for individuals with disabilities), conversations with other families and healthcare providers indicated that the government did indeed provide its promised support. As one mother told me, ‘At Temeke hospital, they are giving me service freely. The government pays for it.’ As this discrepancy demonstrates, the problem may not be that the government is not providing its promised support; it may be that families just did not know how to access this support.

As previously mentioned, because respondents were a part of a self-advocacy organisation, many of them are inclined toward social movements and social action. It is likely that the above-described sense of being let down by the state plays a role in engendering social action. For example, the Tanzanian Association for the Mentally Handicapped (TAMH) is part of a wider umbrella organisation of various DPOs that engages in significant national lobbying and advocacy efforts for the rights of persons with disabilities. Moreover, through their active involvement in the TAMH, a number of parents interviewed had been directly involved in the consultation process for the creation of the new 2010 Disabilities Act.

For all home visits, a representative of TAMH accompanied me and facilitated introductions with the families. This study comprises data obtained from interviews with a total of 12 different family units with 12 individuals with disabilities (8 males, 4 females; ages 4–32). The interviews were arranged with individual caregivers or guardians of the person with the disability; these caregivers were the primary target of and responded to all interview questions. Because in one family, a primary-caregiving couple (two individuals) participated in answering all questions together, this study’s sample size is 13 individuals from 12 households: 3 fathers, 8 mothers, and 1 grandparent couple.

DeFrain (1999:11) describes the elusive concept of ‘spiritual wellbeing’ as ‘connection to each other and connection to that which is sacred to us in life’. Spiritual wellbeing can be manifested in religious terms, harmony, or ethics. Perhaps most notably, the strength of spiritual wellbeing was shown when families discussed acceptance of their member with a disability. Acceptance was sometimes spoken of in religious terms (e.g., ‘It is God’s will’) but was also spoken of in terms of love and connection to the family member with a disability. One may also identify spiritual wellbeing in those whose responses attributed responsibility of supporting an individual to the society as a whole. This sort of attribution of general societal responsibility to care for those in greatest need demonstrates a strong sense of ethics and of the interconnectedness of the community.

The strength of commitment is demonstrated in a variety of ways in interview responses. When families are committed, they do not let outside influences (e.g., work, or other priorities) take away from family interactions. Families with the strength of commitment view their life together as a family to be of utmost importance. Commitment was most salient in interview responses in the ‘whose responsibility?’ theme. First, respondents viewed themselves as responsible for keeping the family together and for caring for their family member. Fathers with whom I spoke provided examples of fathers who certainly had not abandoned their family as a result of having a child with a disability, even though a number of respondents reported that father abandonment is common for children with disabilities in Tanzania. Next, respondents’ identification of and advocacy for support needs hinted at commitment in a more subtle (but not less important) way. All of the families with whom I spoke were so committed to their family and their member with an intellectual disability that they went out of their way to become advocates for their family’s needs (e.g., first evidenced through their involvement in the parent advocacy organisation, TAMH). Some of the families had shown their commitment by being involved in and having a voice at national disability policy drafting efforts; one mother demonstrated her commitment by continuously going to the municipal government office in an attempt to gain support for her family member with a disability. Thus, I conjecture that the family strength of commitment is not only manifested in vocal assertions of the importance of family but also in the specific actions of self-advocacy that members undertake in order to meet the unique needs of their family.

In addition to understanding family strengths, it is also important to note that the issues of stigma, feelings of hopelessness, and lack of formal support that were presented in these interviews could be linked to the literature on caregiving burnout or stress. As mentioned in the introduction to this article, research on parental stress has noted that providing care for a family member with an intellectual disability often requires additional physical, emotional, social and financial resources and that it is necessary to coordinate the family member’s unique needs while balancing competing family needs (Murphy, Caplin, & Young 2006; Silver, Westbrook, & Stein 1998). Caregiving, then, has been seen to contribute to parental stress and to lower caregivers’ sense of psychological wellbeing (Cramm & Nieboer 2011). But, knowledge of the ways in which families experience stress (in this case through stigma, feelings of hopelessness, and lack of support) can inform the utilisation of family strengths to create appropriate support. For example, it has been found that formal and informal support can act as a buffer, with parents reporting lower stress, anxiety and depression when they perceived greater support (Blacher, Neece, & Paczkowski 2005). Having discussed some of the potential strengths that may be identified from family discussions of their experiences with intellectual disability, and additional stressors, I will now identify some potential implications of these strengths on future interventions and identify areas for future research.

Next, practitioners might try to build upon the strength of commitment shown by many of the strong family advocates in Dar es Salaam, such as those who participated in this study. Family advocates have the potential to serve as important resources for families of children with similar disabilities, such as the two mothers in this study who described already doing this on an informal basis by providing advice on such issues as education and healthcare to other families with children with disabilities in the neighbourhood. In capitalising upon the strength of commitment, seasoned family advocates may be able to provide information to new families to help them identify and access available resources. For example, although some parents were accessing free government healthcare and medication, others had heard of this support but had been unable to figure out how to access it. A more formalised system that facilitated the sharing of expertise of committed family advocates may help to alleviate problems due to lack of information. Research has shown that families in Africa have an important role to play through advocacy, education on human rights, empowerment, and development of policies about intellectual disability (Ngatunga 2004), and I suggest that families who demonstrate this strength of commitment will be able to lead the way.

Across interview responses, I was unable to identify any systematic differences in responses based upon gender (of respondent or individual with a disability) or on socioeconomic status of the family; however, it is possible that these differences exist and my sample size was simply too small to enable this identification of systematic differences. Future study may seek out specific examples of differences in gender or socioeconomic status and the implications this has for the disability experience or disability advocacy efforts in Tanzania. Future research may also examine the developmental considerations of a family’s experience: Does the age of the child impact the family experience? What are the changing health, educational, and social needs of a family as a child develops? What is the role of families in each life stage or during transitions between life stages?

Additionally, future research that attempts to further probe specific family strengths and create interventions based upon these strengths will be important. For example, in this study, most of the families experienced stigma in various forms. It would be useful to adopt a family strengths approach to understand how parents are presently utilising their strengths to navigate this stigma or to initiate supports which aid families to draw from their unique strengths to navigate or even eliminate the stigma that they encounter in society.

Lastly, and perhaps most importantly, the voice of people with intellectual disabilities themselves is too often absent from literature on intellectual disability. One area of utmost importance in future research will be to increase involvement of people with intellectual disabilities themselves in intellectual disability research in Tanzania. This study, which focused upon family response to ID as opposed to individual response to ID, cannot be exempt from critiques of representation and voice, and I acknowledge that future studies must strive to provide a voice to people with intellectual disabilities and to incorporate their viewpoints to describe how they understand their own disability and to identify and build upon their personal strengths.

Aldersey, H.M. & Turnbull, H.R., 2011, ‘The United Republic of Tanzania’s national policy on disability: A policy analysis’, Journal of Disability Policy Studies 22(3):162–171.

Armstrong, M.J. & Fitzgerald, M.H., 1996, ‘Culture and disability studies: An anthropological perspective’, Rehabilitation Education 10:247–304.

Blacher, J. & McIntyre, L.L., 2006, ‘Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact’, Journal of Intellectual Disability Research 50(3):184–198, viewed 24 June 2012 from http://dx.doi.org/10.1111/j.1365-2788.2005.00768.x, PMid:16430730

Blacher, J., Neece, C.L. & Paczkowski, E., 2005, Families and intellectual disability, Current Opinion in Psychiatry 18:507–513, viewed 24 June 2012 from http://dx.doi.org/10.1097/01.yco.0000179488.92885.e8, PMid:16639109

Cervinkova, H., 1996, ‘Disability and the other in cultural anthropology’, Human Mosaic 30(1–2):56–63.

Charmaz, K. & Mitchell, R.G., 2001, ‘Grounded theory in ethnography’, in P. Atkinson, A. Coffey, S. Delamont & J. Lofland, (eds.), Handbook of ethnograpy, Sage, London, viewed 5 March 2012 from http://dx.doi.org/10.4135/9781848608337.n11

Charmaz, K., 2006, Constructing grounded theory: A practical guide through qualitative analysis, Sage, London.

Chou, Y.C., Lin, L.C., Chang, A.L. & Schalock, R.L., 2007, ‘The quality of life of family caregivers of adults with intellectual disabilities in Taiwan’, Journal of Applied Research in Intellectual Disabilities 20:200–210, viewed 24 June 2012 from http://dx.doi.org/10.1111/j.1468-3148.2006.00318.x

Cramm, J.M. & Nieboer, A.P., 2011, ‘Psychological wellbeing of caregivers of children with intellectual disabilities: Using parental stress as a mediating factor’, Journal of Intellectual Disabilities 15:101–113, viewed 25 June 2012 from http://dx.doi.org/10.1177/1744629511410922, PMid:21750213

DeFrain, J., 1999, ‘Strong families’, Family Matters 53:6–13.

Denzin, N.K. & Lincoln, Y.S., 2008, Introduction: The discipline and practice of qualitative research, in Denzin, N.K. & Lincoln, Y.S. (eds.), Collecting and interpreting qualitative materials, Sage, Los Angeles.

Dillenburger, K. & McKerr, L., 2010, ‘How long are we able to go on? Issues faced by older family caregivers of adults with disabilities’, British Journal of Learning Disabilities 39:29–38.

Gerstein, E.D., Crnic, K.A., Blacher, J. & Baker, B.L., 2009, ‘Resilience and the course of daily parenting stress in families of young children with intellectual disabilities’, Journal of Intellectual Disability Research 53(12):981–997, viewed 6 March 2012 from http://dx.doi.org/10.1111/j.1365-2788.2009.01220.x, PMid:19874449, PMCid:2796238

Goffman, E., 1963, Stigma: Notes on the management of spoiled identity, New York, Simon and Schuster.

Gona, J.K., Mung’ala-Odera, V. & Newton, C.R., Hartley, S, 2010, ‘Caring for children with disabilities in Kilifi Kenya: What is the carer’s experience?’ Child: Care, Health, and Development 37(2):175–183, viewed 5 March 2012 from http://dx.doi.org/10.1111/j.1365-2214.2010.01124.x, PMid:20645990, PMCid:3072473

Hassall, R., Rose, J. & McDonald, J., 2005, ‘Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support’, Journal of Intellectual Disability Research 49:405–418, viewed 25 June 2012 from http://dx.doi.org/10.1111/j.1365-2788.2005.00673.x, PMid:15882391

Hill, C. & Rose, J., 2009, ‘Parenting stress in mothers of adults with an intellectual disability: Parental cognitions in relation to child characteristics and family support’, Journal of Intellectual Disability Research 53(12):969–980, viewed 25 June 2012 from http://dx.doi.org/10.1111/j.1365-2788.2009.01207.x, PMid:19737345

Holzer, B., Vreede, A. & Weigt, G., 1999, Disability in different cultures: Reflections on local concepts, Bielefeld, Bonn.

Hong, J. & Seltzer, M.M., 1995, ‘The psychological consequences of multiple roles: The non-normative case’, Journal of Health and Social Behaviour 36:386–398, viewed 25 June 2012 from http://dx.doi.org/10.2307/2137327, PMid:8719056

ILO, 2009, ‘Inclusion of people with disabilities in the United Republic of Tanzania’, viewed 3 May 2012 from http://www.ilo.org/wcmsp5/groups/public/@ed_emp/@ifp_skills/documents/publication/wcms_111461.pdf

IMF, 2009, Tanzania, World economic outlook database, viewed 3 May 2012 from http://www.imf.org/external/pubs/ft/weo/2009/02/weodata/weorept.aspx?sy=2006&ey=2009&scsm=1&ssd=1&sort=country&ds=.&br=1&c=738&s=NGDPD%2CNGDPDPC%2CPPPGDP%2CPPPPC%2CLP&grp=0&a=&pr.x=59&pr.y=10

Ingstad, B. & Whyte, S.R., 1995, Disability and culture, University of California Press, Berkeley, CA.

Kenny, K. & McGilloway, S., 2007, ‘Caring for children with learning disabilities: An exploratory study of parental strain and coping’, British Journal of Learning Disabilities 35:221–228, viewed 25 June 2012 from http://dx.doi.org/10.1111/j.1468-3156.2007.00445.x

Kiweka, J., 2010, ‘Employment of persons with disabilities in Dar es Salaam Tanzania: An assessment of the proportion of persons with disabilities in the workplace 2010’. CCBRT, Radar Development, Disability Aid Abroad.

Kisanji, J., 1995, ‘Attitudes and beliefs about disability in Tanzania’, in B. O’Toole & R. McConkey, (eds.), Innovations in developing countries for people with disabilities, Lisieux Hall, Chorley.

Lloyd, T.J. & Hastings, R., 2009, ‘Hope as a psychological resilience factor in mothers and fathers of children with intellectual disabilities’, Journal of Intellectual Disability Research 52(12):957–968, viewed 25 June 2012 http://dx.doi.org/10.1111/j.1365-2788.2009.01206.x, PMid:19744261

Luckasson, R., 1992, Mental retardation, definition, classification, and systems of supports, 9th edn., American Association on Mental Retardation, Washington.

Macionis, J.J., 2011, Sociology, 7th Canadian edn., Pearson, Toronto.

Manion, M.L. & Bersani, H.A., 1987, ‘Mental retardation as a Western sociological construct: A cross-cultural analysis’, Disability, Handicap, & Society 2(3):231–245.

Mbwilo, G.S.K., Smide, B. & Aarts, C., 2010, ‘Family perceptions in caring for children and adolescents with mental disabilities: A qualitative study from Tanzania’, Tanzania Journal of Health Research 12(2):1–12, viewed 5 February 2012 from http://dx.doi.org/10.4314/thrb.v12i2.56400

McConkey, R., 2005, ‘Fair shares? Supporting families caring for adult persons with intellectual disabilities’, Journal of Intellectual Disability Research 49:600–612, viewed 24 June 2012 from http://dx.doi.org/10.1111/j.1365-2788.2005.00697.x, PMid:16011553

Moore, K.A., Chalk, R., Scarpa, J. & Vandivere, S., 2002, ‘Family strengths: Often overlooked but real’, Child Trends Research Brief, August 2002.

Murphy, N.A., Caplin, B. & Young, P.C., 2006, ‘The health of caregivers for children with disabilities: Caregiver perspectives’, Child: Care, Health and Development 33(2):180–187, viewed 25 June 2012 from http://dx.doi.org/10.1111/j.1365-2214.2006.00644.x, PMid:17291322

National Bureau of Statistics, 2011, Dar es Salaam Population, viewed 2 March 2012 from http://www.nbs.go.tz/

Ngatunga, A., 2004, ‘Parents and community members can improve the condition of children with mental disability’, Community-Based Rehabilitation Africa Network, Kampala.

Njenga, F., 2009, ‘Perspectives of intellectual disability in Africa: Epidemiology and policy services for children and adults’, Current Opinion in Psychiatry 22:457–461, viewed 30 December 2011 from http://dx.doi.org/10.1097/YCO.0b013e32832e63a1, PMid:19561504

Patton, M.Q., 2002, Qualitative research and evaluation methods. Sage, London.

Pearlin, L.I., Mullan, J.T., Semple, S.J. & Skaff, M.M., 1990, ‘Caregiving and the stress process: an overview of concepts and their measures’, Gerontologist 30:583–591. http://dx.doi.org/10.1093/geront/30.5.583, PMid:2276631

Rao, S., 2006, ‘Parameters of normality and cultural constructions’, Disability and Society 21(2):159–178, viewed 20 December 2011 from http://dx.doi.org/10.1080/09687590500498127

Rothbaum, F., Weisz, J.R. & Snyder, S.S., 1982, ‘Changing the world and changing the self: A two-process model of perceived control’, Journal of Personality and Social Psychology 43(1):5–37, viewed 25 June 2012 from http://dx.doi.org/10.1037/0022-3514.42.1.5

Ruyobya, I.J. & Schneider, M., 2009, The Tanzanian Survey on Disability: Methodology and overview of results, viewed 8 August 2011, from http://www.statssa.gov.za/isi2009/ScientificProgramme/IPMS/1129.pdf

Saloviita, T., Italinna, M. & Leinonen, E., 2003, ‘Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A double ABCX model’, Journal of Intellectual Disability Research 47:300–312, viewed 25 June 2012 from http://dx.doi.org/10.1046/j.1365-2788.2003.00492.x, PMid:127871

Silver, E.J., Westbrook, L.E. & Stein, R.E., 1998, ‘Relationship of parental psychological distress to consequences of chronic health conditions in children’, Journal of Pediatric Psychology 23:5–15, viewed 24 June 2012 from http://dx.doi.org/10.1093/jpepsy/23.1.5, PMid:9564123

Sitta, M.S., 2007, ‘Towards universal primary education: The experience of Tanzania. UN Chronicle. United Nations Publications’, High Beam Research, viewed 30 December 2011 from http://www.highbeam.com/doc/1G1-178232585.html

Stinnett, N. & DeFrain, J., 1985, Secrets of strong families, Little Brown, Boston.

Summers, J.A., Behr, S.K. & Turnbull, A.P., 1989, ‘Positive adaptation and coping strengths of families that have children with disabilities’, in G.H.S. Singer & L.K. Irvin (eds.), Support for caregiving families: Enabling positive adaptation to disability, p. 27–40, Paul H. Brookes, Baltimore.

Taylor, S.E., Lichtman, R.R. and Wood, J.V., (1984) ‘Attributions, beliefs about control, and adjustment to breast cancer, Journal of Personality and Social Psychology 46(3):489–502, viewed 24 June 2012 from http://dx.doi.org/10.1037/0022-3514.46.3.489, PMid:6707865

Turnbull, A.P. & Turnbull, H.R., 2001, Families, professionals and exceptionally: collaborating for empowerment, 4th edn., Prentice Hall, Upper Saddle River NJ.

United Nations, 2006, Convention on the rights of persons with disabilities, viewed 8 November 2011 from http://www.un.org/disabilities/default.asp?id=150

United Nations Development Programme, 2009, ‘Human development report 2009, Tanzania (United Republic of), the human development index, going beyond income’, Human Development Reports, viewed 3 March 2012 from http://hdrstats.undp.org/en/countries/country_fact_sheets/cty_fs_TZA.html

United Republic of Tanzania, 2010, Persons with Disabilities. No. 9 of 2010, Enacted by the Parliament of Tanzania, May 20, 2010.

Warren, C.A.B. & Karner, T.X., 2010, Discovering qualitative methods: Field research, interviews, and analysis, 2nd edn., Oxford University Press, New York.

World Bank, 2010, Tanzania, viewed 3 December 2011, from http://data.worldbank.org/country/tanzania