Hear my voice: Lived experiences of older people and people with disabilities in Tanzania

Sightsavers 23rd February 2016

Marion Steff & Margo Greenwood

The consortium

Location

1st Phase: Bangladesh (pilot/ 2012-2015)

2nd Phase: Tanzania (2015-2016)

Purpose

To gather the voices of persons with disabilities and older people, and provide qualitative input to inform Agenda 2030 and the Sustainable Development Goals.

Research information

• Peer researchers: 26 (16 community, 10 NGO)

• Two districts: Kibaha and Nachingwea

• Stories: 106 (approx. 76 from people with disabilities and older people, 30 from local NGOs)

Methodology

Community-based participatory research (CBPR). It involves:

– Committing to sharing power and resources– Working towards beneficial outcomes for all participants – Equitably involving community members, organisational representatives and researchers– Sharing expertise, decision-making and ownership– Bringing unique strengths from all

Aim of CBPR

To increase knowledge and understanding of a given phenomenon and integrate the knowledge

gained with interventions, policy and social change to improve the health and quality of life of

community members.

Ethical principles of CBPR

• Mutual respect• Personal integrity• Equality and inclusion• Democratic participation• Active learning• Making a difference• Collective action

Data collection

• 26 peer researchers trained to undertake interviews (16 community and 10 NGO)

Challenge: including people with all types of disabilities

• Peer researchers undertook and recorded the 106 interviews (community 76, NGO 30)

Challenge: keeping conversations free yet relevant

Data analysisLevel of coding

Explanation

Open coding The process of breaking down, examining, comparing and conceptualising data.

  

Axial coding Making connections between categories

Selective coding

Selecting the core theme by systematically comparing it to other categories. A core category is

the central issue or category into which all other categories are integrated

G

How did participants experience old age and/or disability?

Your turn! Get to know our participants

Our peer researchers were asked:1. What is the story telling us?2. What is important?3. Why is this important?

Read out one or two phrases that stand out to you and explain what struck you.

Eight identified priorities

• Access to education• Health services• NGO issues• Poverty, income & dependence• Witchcraft & albinism mistreatment • Family difficulties & marriage breakup• Sexual violence & gender issues • Poor treatment from family & taking advantage of people with disabilities

Passages from stories (1/3)

“(…) I have problems related to health services. If I become sick, my relatives do not take me to the hospital. I usually go alone but I have been experiencing a lot of difficulties because I don’t know how to express myself because health care providers do not understand sign language.” Person with a hearing disability, 32, Kibaha district

Passages from stories (2/3)

“When I was in primary school, I would tell the teacher that I could not see. I would ask him to read for me. But the teacher would tell me that if I don’t see, why do you come to school then?” Person with visual impairment, 25, Kibaha district (Tanzania)

Passages from stories (3/3)

Talking about witchcraft and albinism: “The way I see it, politic is the source of killing of people with albinism. The reason for my argument is that whenever there is an election, the killing of people with albinism increases. This year, the community raised its voice and it stopped for a while.” Participant from a NGO, Dar es Salaam

Local recommendations

The peer researchers enable to: • Take a lead in providing sexual education to respective

communities;• Educate and empower families of older people and

people with disabilities to provide better support;• Raise awareness among village leaders and attend

villages meeting; • Engage with the government to implement the National

Disability Policy of 2004.

National recommendations

The Tanzanian government should: • Work with traditional healers and seek for the causes of

people with albinism’ killings; • Provide counselling for parents of children with

disabilities; • Legislate the national policy on ageing so that there is a

binding legal framework under the new Ministry of Health, Social Development, Gender, Older People and Children.

Global recommendations (1/2)

• Ratify, implement & monitor the UN Convention on the Rights of Persons with Disabilities (UNCRPD);

• Support the elaboration of a UN Convention on the Rights of Older People (UNCROP).

• Improve disability and older-person data gathering and analysis mechanisms (SDGs)

• Disaggregate data by age, gender, location, ethnicity and disability (SDGs targets & indicators)

Global recommendations (2/2)

• Promote the full and equal participation of older people and persons with disabilities in policy making at all levels.

• Raise awareness about the experiences of people with disabilities and older people to reduce stigma and discrimination.

• Ensure SDGs-compliant development to provide public services that are inclusive to people with disabilities and older people

Reflections /our own learning

• Strong partnership between research and policy teams

• Partnering with research institute based in Tanzania

• Importance of using qualitative methodology• Approach is costly and time consuming• ‘Messiness’ linked to the methodology• How to involve participants in the analysis while

keeping the analysis rigorous.

Peer researchers team

Thank you! Questions? Web page: www.sightsavers.org/voices

Contact details: msteff@sightsavers.org mgreenwood@sightsavers.org

Twitter: @mllemarionamtl @MargoGreenwood @Sightsavers_Pol