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STRiDE Kenya Theory of change

THE KENYAN STRiDE THEORY OF CHANGE WORKSHOP REPORT

Christine W. Musyimi1, David M. Ndetei1,2, Elizabeth M. Mutunga3, Margie Schneider4, Simon Njuguna5, Nasri Omar5, Erica Breuer4

1 Africa Mental Health Foundation, Kenya

2University of Nairobi, Kenya

3Alzheimer’s & Dementia Organization Kenya

4University of Cape Town, South Africa

5Ministry of Health, Kenya

 

 

 

 

 

 

 

 

 

 

Cite this publication as:

Musyimi CW, Ndetei DM, Kasimu MM, Schneider M, Njuguna S, Omar N, Breuer E (2018). The Kenyan STRiDE Theory of Change workshop report. Nairobi. Kenya.

SUMMARY

This report describes the Kenyan theory of Change (ToC) workshop held in Nairobi, Kenya within the Strengthening responses to dementia in developing countries (STRiDE) project, implemented in seven developing countries.  The goal of the ToC was to bring various stakeholders from the national government, researchers, clinicians, relevant NGOs, people with dementia and carers to develop impactful research and training agenda for planning Kenyan STRiDE project activities. The theme of the workshop was “STRiDE Kenya 2018-2021”. The ToC map was developed during the two-day workshop by first outlining individual, caregiver, community and health personnel, and policy level challenges within small-group discussions and through a panel discussion involving people with dementia and caregivers on the first day. The finalized ToC map included interventions required to achieve the agreed impact – “Improved dementia prevention, care, treatment and support systems so that people with dementia, carers and family have the highest possible wellbeing and functional ability,” and assumptions that needed to be considered during planning . The advisory team was also discussed among the STRiDE team members and was agreed to comprise of a representative from the Kenya Board of Mental health, gerontologist, community Health Strategy representative, clinical psychologist, neurologist and a caregiver. Final arrangements and contacting the suggested members will be made after consultation with the STRiDE management team.The key country-specificquestions which emerged from the ToC discussions included;

  1. How will STRiDE create awareness, reduce stigma on dementia, increase visibility and voice of people living with dementia?
  2. What are the STRiDE work packages that will inform operationalization of the Kenya dementia action plan
  3. How will STRiDE ensure sustained collaboration among all the stakeholders involved in the ToC?
  4. Which outcomes (outlined in the ToC map) will be achieved through the STRiDE objectives?

During the discussions, the participants felt that there was a need to train health care workers and caregivers on dementia care and create awareness on dementia to reduce stigma. The Ministry of Health’s representatives emphasized that the goal of STRiDE Kenya could help achieve some of the components of the Kenya Dementia Action plan.

1.     THE SITE AND FACILITATORS

A Theory of Change (ToC) workshop was conducted in Kenya on 7th and 8th June, 2018 at the Hillpark Hotel in Nairobi (see the map below) and was facilitated by the Early Career Researcher (ECR) for STRiDE in Kenya – Dr. Christine Musyimi, supported by the Senior Researcher from Africa Mental health Foundation (AMHF) – Prof. David Ndetei, the CEO and founder of Alzheimer’s & Dementia Organization Kenya (ADOK)–Ms Elizabeth Mutunga, the STRiDE Management Team (SMT) liaison contact for Kenya – Prof. Margie Schneider, Director of Mental Health – Dr. Simon Njuguna and a representative from the Kenya Board of Mental health – Dr. Nasri Omar. Hillpark Hotel is located conveniently located in Upperhill, Nairobi (15km from Jomo Kenyatta International Airport).  The hotel’s conference room was sound-proof and big enough with 6 spaciously arranged round tables that could comfortably accommodate six participants per table. The environment was quiet, peaceful and with 24-hour security with external back up.

Figure 1: Location of Nairobi city

Nairobi (see map ) is the capital and largest city of Kenya with a population of almost four Million and hosts people from multiple ethnic groups spread across the 47 Counties.

 

2.     AIMS

The goal of the workshop was to bring various stakeholders from national government, researchers, clinicians, relevant NGOs, people with dementia and carers to develop impactful research and training agenda for planning Kenyan STRiDE project activities. The theme of the workshop was “STRiDE Kenya 2018-2021”.The Kenyan ToC specific objectives included to;

  1. Develop a logical Kenyan STRiDE Theory of Change map including the impact, outcomes and interventions or project activities for STRiDE during and after the four-year project period.

  2. Outline the assumptions for the Kenyan STRiDE programme

KENYAN STRiDE LAUNCH

The two-day workshop began on the first day with opening remarks from the Kenyan STRiDE Senior Researcher – Prof. David Ndetei and all participants signing a consent form to allow AMHF to take photos for purposes of dissemination of findings by STRiDE partners and possible inclusion in reports and presentations. Prof. Ndetei welcomed the participants and encouraged them to think more about how to make a difference in the lives of the people with dementia and their carers. He later invited the Director of Mental health – Dr. Simon Njuguna to launch the Kenyan STRiDE project. Just before launching STRiDE Kenya, Dr. Njuguna gave a brief presentation about our (Kenyans) responsibility to address dementia through the Kenya Mental health Policy and the Ministry of Health’s draft dementia action plan (2017-2025), which highlighted the importance of giving priority to older persons in terms of prioritization of leadership on Public health agenda on Dementia, integrated dementia plan, implementation framework and promotion of universal health coverage for people living with dementia. This was followed by the official launch of STRiDE Kenya 2018-2021 (figure 2 below).

Figure 2: The official launch of STRiDE Kenya 2018-2021

   STRiDE OVERVIEW AND PANEL DISCUSSION

After the official launch of STRiDE Kenya, Prof. Margie Schneider (SMT liaison contact for Kenya) provided an overview of the STRiDE project by outlining the role of local stakeholders and the role of UK partners in understanding local knowledge and building capacity beyond the partner academic institutions in the countries. This was followed by a panel discussion (figure 3) that involved four caregivers and one person with dementia on the challenges facing caregivers (dementia context) moderated by Elizabeth Mutunga – CEO and Founder ADOK. The objective of the discussion was to provide participants across a range of professionals with the local context realities that families and caregivers go through when taking care of a person with dementia. Some of the challenges voiced out ranged from stigma on dementia due to lack of community awareness and myths and misconceptions (e.g. bewitchment) about dementia resulting into social exclusion, misdiagnosis and mismanagement of people with dementia, lack of specialists to deal with dementia, unaffordable medications resulting into relapse after stopping their treatment, financial constraints due to increased cost of unpaid care and diapers, and caregiver difficulties such as magnitude of the care and the burden of dealing with grief after losing a loved one.

One caregiver stated;

“I have felt rejected at some point in life because my mother was aggressive. I have been taking care of her since the age of 12 years and even though I do not blame anyone, I miss out on social life. I always have to be where she is so that she does not walk away”

Another caregiver mentioned that “It was a lengthy process to get diagnosis and the appropriate treatment. I have visited four different doctors and the diagnosis was only made after the fourth doctor.”  

A caregiver who had to resign to take care of her husband and still had young children similarly said;

“My husband used to be violent and aggressive and I did not understand what was happening to him until we received the appropriate information and diagnosis”

Participants suggested that it was crucial to have dementia friendly health care institutions in Kenya and to create awareness on dementia all the way from the reception desk in health care settings to community settings to reduce stigma. They also suggested the need to identify a cure for dementia, train people to deal with dementia and increase financial and emotional support for carers. They were hopeful that STRiDE will achieve some of their expectations if not all.

Figure 3: Panel discussion on the experiences of people with dementia and caregivers

    DEMENTIA CONTEXT AND THEORY OF CHANGE APPROACH

Following the panel discussion, Elizabeth provided a brief overview of dementia in Kenya stating that dementia awareness has not yet been achieved, while Dr. Victoria Mutiso (a clinical psychologist, researcher and a Theory of Change facilitator in Kenya) introduced participants to the theory of Change approach by outlining the basic elements which included outcomes, indicators, rationale, interventions, assumptions and how the ToC approach can be used for planning, monitoring project activities and accountability.

   DEVELOPING THE ToC MAP

 CHALLENGES

The process of developing the change pathways through the ToC map then began by identification of challenges facing people with dementia and their carers, through small group discussions (5-6 individuals per group) (figure 4) facilitated by Dr. Christine Musyimi (Kenyan STRiDE ECR). Each round table included a mix of personnel from the government, NGO representatives, researchers/clinicians and at least one caregiver in order to allow for diverse opinions. Participants used sticky notes and markers to identify the challenges which were collectively summarized as follows;

Individual challenges

  1. Physical (security and safety; and functional – self-care and comorbidities) and psychological (denial frustration and hopelessness) challenges
  2. Social isolation (being neglected by friends, families and society – loss of social networks)
  3. Self-stigma
  4. Physical and emotional abuse of people with dementia

Caregiver challenges

  1. Financial burden to the family – expensive drugs and food; and inability to get paid employment due to the caregiver role and unpaid fulltime care
  2. Family conflict related to caregiver role
  3. Reduced social interaction and assumption of parenting at an early age – for young caregivers
  4. Long-term guilt and grief
  5. Burn-out

Community and health personnel challenges

  1. Socio-cultural beliefs – cultural inhibitions, variance, myths etc
  2. Lack of knowledge, awareness and advocacy leading to misdiagnosis, late diagnosis and poor treatment
  3. Health personnel stigma and attitude towards people with dementia

Policy level challenges

  1. Lack of policies and frameworks
  2. Economic burden on the government
  3. Insufficient integration of mental health services into primary health care
  4. Insufficient data on dementia

Figure 4:
Small group work discussions on the ToC components

AGREE ON IMPACT

In order to deal with the challenges, a realistically achievable and comprehensible impact adapted from the one stated in the overall STRiDE project was agreed upon after other small group discussions. Components such as rehabilitation, preventive and curative treatment were discussed as salient aspects in the Kenya STRiDE goal. Finally during a plenary session, the groups agreed that these could collectively be covered within the word “treatment” which is part of the goal. The goal was finally stated as “Improved dementia prevention, care, treatment and support systems so that people with dementia, carers and family have the highest possible wellbeing and functional ability.”

  CONTEXTUALIZED OUTCOMES

The process continued where the participants outlined what needs to be in place to achieve the impact in their groups. The different groups listed locally contextualized outcomes which were discussed in a plenary session and displayed in same colour sticky notes to differentiate them from the challenges during final sorting. The first day of the workshop then ended with closing remarks from the senior researcher.

Later in the day, the STRiDE Kenya team met to organize and group the challenges and outcomes developed by the groups. The team then developed the ToC map and the facilitator drew it while distinguishing the long-term and short term outcomes to be achieved by the STRiDE project using the “accountability ceiling” – dashed vertical line as illustrated below;

Figure 5: Draft ToC illustrating accountability ceiling for impact levels

This diagram was expanded, printed and shared with the team members the following day (day 2 of the workshop).  Further discussions to check if each outcome led logically to the next outcome were made and the direction of arrows discussed within each group. The participants came to a consensus that nearly all outcomes were linked to each other and required bidirectional arrows. The outcomes were also reworded, re-arranged, combined, added and the accountability ceiling moved around during the discussions as the participants gathered more knowledge about the limits of the STRiDE project. The new outcome added was “visibility and voice of people living with dementia”.

 INTERVENTIONS

The participants, led by the facilitator then considered what interventions needed to be mapped to the outcomes pathway and outlined them in the various groups as follows;

Table 1: Interventions linked to outcomes

No. OUTCOME INTERVENTIONS
1.       Individuals and families of persons with dementia do not experience stigma from the community and health workers (i) Creating public awareness in the community – (chief barazas, women groups, youth groups, social halls, local radio stations, outreach activities, road shows); healthcare workers – (IEC materials, CMEs); policymakers and other stakeholders – (sensitization workshops, social media, print and electronic media).
(ii)  Form support groups, psycho-education using Information, Education and Communication (IEC) materials
2.       People living with dementia and their families have access to early diagnosis, treatment,  long-term care, palliative care and advanced care planning (i) Advocacy at all levels and creating awareness to people with dementia, their family, carers, public, health care providers (HCP) and policy makers
(ii) Training healthcare workers (HCWs) and care givers on diagnostic tools
(iii) Increase access to diagnosis and affordable & appropriate medications
(iv) Develop protocols/guidelines on advanced care planning (ACP), Long Term Care and Palliative Care
3.     There is active collaboration between formal and informal health care workers and between different relevant sectors e.g. government and NGOs. (i) Provide adequate support systems across all sectors
(ii) Recognize and build capacity for community and faith Based Organizations and Self-Help groups
(iii) Good governance and policy implementation
(iv)Lobbying and advocacy
(v) Awareness creation
(vi) Encourage dialogue sessions in the different sectors
4.     Individuals, families, communities, health service providers and policy makers are aware of dementia, its prognosis and care options

 

 (i) Sensitize the media e.g. social, digital and print media
(ii) Train health care workers on dementia diagnosis and treatment
(iii)Engage religious institutions, politicians, ambassadors and dementia “friends” to increase community engagement
(iv)Observe dementia awareness day “1st September” and walks
(v)Develop key messages for the public e.g. IEC materials or billboard
(vi)Sensitize the youth in the communities, schools and colleges
5.     There is local research evidence available to inform the operationalization of the Kenya dementia action plan (i) Generate evidence through situational analysis
(ii)Advocacy
(iii) Dissemination of evidence-based research findings
(iv)Implementing Dementia Plan activities
6.       There is a Kenyan national dementia plan that includes care and support  for people with dementia, their carers and families (i)  Stakeholder engagement on the discussion of the draft Kenyan national dementia plan (KNDP)

(ii) Inclusion of local evidence and recommendations from the stakeholders to the KNDP

(iii)  Dissemination of the draft Kenyan national dementia plan
7.     People living with dementiaare included in policy discussions about dementia care.

 

 (i)Build coalitions for advocacy
(ii) Develop good information packages
(iii) Support carers and people with dementia to share their views and include them in policy discussions
(iv) Awareness creation in communities and through the media
8.     Systems are in place to ensure that  persons with dementia are able to access care and that they and their families are not exposed to financial hardship (i) Increase access to necessities for instance using safety net programs (cash and in-kind transfers targeting poor and vulnerable households)
(ii) Health system strengthening by training health care workers on dementia care
(iii) Support communities and carers with socio-economic programmes
9.     Policy makers are able are able to implement and monitor dementia policies (i)Appropriate allocation of resources
(ii)Identification of appropriate interventions for dementia care
(iii)Identification of interested and committed parties to deal with dementia care
10. Integrated research and regular monitoring of dementia data to improve existing health information systems (i) Involve and ensure government buy-in and support
(ii) Provide data collection tools to ensure quality data  for the attainment of STRiDE and health sector goals
(iii) Review data collected and monitor indicators for impact

  ASSUMPTIONS

Once all the participants came to a consensus about the final change pathway, discussions about whether there were any major assumptions that needed to be considered during planning and if there were barriers that may prevent an outcome in the causal pathway from being achieved followed. The major assumptions included;

  1. There will be sufficient human resources and funding to conduct STRiDE activities
  2. There will be  ongoing collaboration for stakeholders, political will and active public participation
  3. Trained providers and researchers will implement lessons learnt during STRiDE
  4. The media, public and government are interested and committed, and carers and people with dementia are willing to share their experiences

The ToC was then agreed through a consensus and shared with the participants and the STRiDE ToC work package leads (Erica Breuer and Professor Marguerite Schneider). There were no key issues raised among the participants. However, the work package leads provided some very insightful comments on how to reframe the listed outcomes and their placement in the ToC pathway in order to show the direction of the relationship between the outcomes through a cyclical process. The revised ToC map was redrawn as follows;

Figure 6: Final ToC map

NEXT STEPS

After these discussions, participants agreed that implementation of the STRiDE project required collaborative efforts which had already began with the ToC workshop and such efforts should not be slowed down during the subsequent phases of the project. Prof. David Ndetei and Dr. Simon Njuguna thanked all participants especially the STRiDE team (figure 6 – involving the senior researcher, policy makers (e.g. director of mental health and representative at the Kenya board of mental health and a medical gerontologist), STRiDE management team representative for Kenya, early career researcher and ADOK representative) and closed the meeting.

Figure 7: STRiDE Kenya team ready to hit the ground running – from left Prof David Ndetei (senior Researcher – Kenya), Dr. Nasri Omar (Representative-Kenya Board of Mental health – Ministry of Health (MoH)), Prof. Margie Schneider (STRiDE management team representative for Kenya), Dr. Simon Njuguna (Director of Mental Health-MoH), Dr. Christine Musyimi (Early Career Researcher – Kenya), Elizabeth Mutunga (CEO and Founder – Alzheimers and Dementia Organisation, Kenya), Dr. Muthoni Gichu (The only medical gerontologist in Kenya – Ministry of Health)

CONCLUSION

The ToC was a success with a good mix and representation from various stakeholders. The final ToC map and the list of stakeholders are attached. Some important points were noted during the process;

  1. Participants narrowed down the Kenyan STRiDE Toc since they felt that the overall STRiDE project ToC impact was too broad and probably not doable. It was also too long and confusing and participants came to a consensus on “Improved dementia prevention, care, treatment and support systems so that people with dementia, carers and family have highest possible wellbeing and functional ability.”
  2. Efforts to use the appropriate term to refer to a person with dementia improved on the second day after brief presentation using the Australia Alzheimer’s guidelines.
  3. Only one participant excluding the Kenya STRiDE team and the ToC trainer – Dr. Mutiso had heard and participated in a ToC workshop. The term was new to the rest of the participants. However, they felt it was an interactive session at the end of the second day and were happy to work together. There were already requests the following week about sending the finalized ToC map.
  4. The WHO representative for Kenya and the World Development bank representative could not attend the workshop due to prior commitments.
  5. The advisory team was discussed among the STRiDE team members to involve;
    • Representative-Kenya Board of Mental health
    • Gerontologis
    • Caregiver
    • Neurologist
    • Community Health Strategy representative
    • Clinical psychologist

Final arrangements and contacting the suggested members will be made after consultation with the STRiDE management team.

  1. The key country-specific questions which emerged from the ToC discussions included;
    • How will STRiDE create awareness, reduce stigma on dementia, increase visibility and voice of people living with dementia?
    • What are the STRiDE work packages that will inform operationalization of the Kenya dementia action plan
    • How will STRiDE ensure sustained collaboration among all the stakeholders involved in the ToC?
    • Which outcomes (outlined in the ToC map) will be achieved through the STRiDE objectives?
  2.  Even though the Kenyan ToC workshop did not entirely focus on the training needs, the participants felt that there was a need to train health care workers and caregivers on dementia care and create awareness on dementia to reduce stigma. The Ministry of Health representatives emphasized that the goal of STRiDE Kenya could help achieve some of the components of the Kenya Dementia Action plan.