Empowerment is an increasingly popular goal, considered core to a transformative agenda for children with disabilities and their families. However, it can still be a poorly understood concept in practice.
This article is an empirical analysis of the ‘empowerment journeys’ of caregivers participating in a community-based training programme in Ghana.
In-depth interviews were conducted with 18 caregivers at three time points over 14 months. Thematic analysis was conducted on the full data set, with three representative case studies selected for more detailed analysis to illustrate the dynamism of time and context in shaping the empowerment journey.
Our findings illuminate the complexity and non-linearity of the caregiver empowerment journey. There were important gains in individual dimensions of power and the nascent emergence of collective power, through improved knowledge and valuable peer support from group membership. However, further gains were impeded by their limited influence over wider economic and sociopolitical structural issues that perpetuated their experiences of poverty, stigma and the gendered nature of caregiving. The support group facilitator often played a valuable brokering role to help traverse individual agency and structural issues.
A richer and more nuanced understanding of caregiver empowerment in the community and family context can inform the wider discourse on disability. Guidelines on working with people with disabilities, and the role of empowerment, should not neglect the pivotal role of caregivers. There are important lessons to be learnt if we want to improve family-centred interventions and transform the lives of children with disabilities.
Whilst definitions of empowerment are diverse, it is generally agreed that it is a process, or outcome, that is multidimensional and seeks to shift prevailing power dynamics, which can be at the level of people, communities or organisations (Luttrell et al. 2007).
Empowerment as both a process and outcome for families of children with disabilities is seen as increasingly relevant. The pivotal role that families play in improving health outcomes for women, children and adolescents is outlined in the Global Strategy on Women’s, Children’s and Adolescents’ Health (World Health Organization (WHO)
Empowerment is foundational to disability-inclusive development and community-based rehabilitation (CBR). It is one of the five pillars of the World Health Organization CBR matrix alongside the health, education, livelihood and social sectors. Empowerment is also a cross-cutting theme, and the guidance promotes the ‘importance of empowering people with disabilities, their family members and communities … to ensure that everybody is able to access their rights and entitlements’ (WHO, UNESCO, ILO & IDDC). Empowerment is also a core element of the International Classification of Functioning, Disability and Health (ICF), a biopsychosocial model of disability, where disability is conceptualised as the product of an interaction between bodily function and personal and environmental factors. Personal factors include elements of individual empowerment, such as self-esteem and resilience, and equally an environment that facilitates empowerment is essential (Shakespeare & Watson
Much of the early conceptualisation of empowerment stems from the work of educationalist Paolo Freire; his work was essentially about the fight for social justice through social transformation, driven by power acquired through acquiring knowledge and resulting in the
Expanding on the work of Chambers, in the dialogue on gender and development, emphasis was given to the value of different dimensions of power, notably the personal and inner dimensions of power, as well as the need to examine the underlying structural drivers of oppression (Moser
A parallel theory development was taking place in psychology in the 1980s on psychological empowerment (PE), focus on the individual and encompassing perceptions of personal control, a proactive approach to life and a critical understanding of the sociopolitical environment (Perkins & Zimmerman
At the same time, within the disability movement, the social model of disability placed an emphasis on removal of the structural barriers in society, in order to empower people with disabilities to overcome their experiences of oppression (Shakespeare
An additional important conceptualisation of power, found in Gaventa’s power cube (Gaventa
A persistent debate that runs through all these theoretical discussions on power and empowerment relates to individual agency versus a structuralist approach to change. The structuralist perspective proposes that empowerment approaches should be primarily aimed at dismantling social, economic and institutional barriers to have greater influence over change, and the human agency perspective places a greater emphasis on individuals’ capability to act rationally and autonomously (Baber
Since this theoretical development, ‘empowerment’ has become a ubiquitous term and an increasingly popular buzzword (Cornwall
Given the importance of empowerment in the CBR guidelines, it is also surprising that there is a dearth of literature on defining, understanding and measuring empowerment within programmes with people with disabilities in low-income settings (Rule
Given this critique around the operationalisation of empowerment, and limited research on caregiver empowerment in the lives of children with disabilities in low- and middle-income settings, where arguably there is more dependency on families to provide most of the care, this article sought to examine the experience of empowerment of caregivers who engaged in a 1-year training programme in Ghana.
This article draws on data from a large pre- and post-intervention study to evaluate the impact of a caregiver training programme called Getting to Know Cerebral Palsy (LSHTM & Hambisela
Caregivers also received a monthly home visit from a group facilitator and a community session to raise awareness about the programme. The groups were run by a pair of facilitators who were therapists, normally a local physiotherapist assistant combined with a primary healthcare worker such as a special needs teacher, nutritionist or a CBR worker.
The impact of the programme on well-being has been published (Zuurmond et al.
Caregivers were identified through the community-based screening programme for cerebral palsy and through the hospital records of children diagnosed with cerebral palsy in the last 6 months. For the in-depth qualitative study, 18 families were then purposively selected from four sites, to ensure a geographical spread, different socio-economic status and a mix of children according to gender, age and severity of cerebral palsy. Eleven families were initially selected, and following the death of three children, a further five families were selected in the second round of interviews and two more at end line. Participant selection details are illustrated in
Details of sampling process.
A total of 37 in-depth interviews were conducted with 18 primary caregivers across three time points: 2 months before the start of the training programme; around 6 months into the training; and within 1 month of completion of the programme. Semi-structured interview guides were used, and all interviews were conducted in the home. The guides initially explored issues of what the child was able to do, what their understanding was of the condition, and who provided support within the family and questions about the caregiver well-being. Mid-term questions probed engagement with the programme and changes experienced. Topics also emerged through a process of iterative data collection and analysis in which areas of further investigation were developed in light of emerging ideas and concerns expressed in the interviews. Supplementary shorter interviews were conducted with selected secondary caregivers at the time of the household interviews, in order to capture additional perspectives on the caregiving experience within the household, and detailed field notes were kept. The interviews were conducted either by a local Ghanaian or by an international researcher (female Ghanaian, G.N.; white British female, M.Z.). Interviews were conducted in four local languages with translation into English as required. All interviews were audio recorded, translated into English and then transcribed.
Two key stages of the analysis were conducted: a thematic analysis across all data from the 18 families at baseline, mid-term and end line and then a biographical case study analysis, which collated all the data from each family into a case study and detailed the change over time for each of the 18 families. The data included transcripts, as well as field notes and project monitoring forms, in order to provide a more holistic overview of their lives, in line with the guidance for longitudinal analysis (Creswell
For purposes of better illustrating the change over time, we are presenting three case studies. The case studies were selected to be representative of the larger sample (see
We used the conceptual framework of Rowland’s model of power (Luttrell et al. 2007), as detailed in Table 1, to explore power across four different domains. We also applied the socio-ecological model (Bronfenbrenner
Ethics approval was obtained from the Noguchi Memorial Institute for Medical Research, University of Ghana, and from the London School of Hygiene and Tropical Medicine (reference number: 8905; 25 March 2015), United Kingdom. Informed written consent was obtained from all participating caregivers, with a signature or thumbprint. All children identified with malnutrition were referred for follow-up, and the CBM child protection policy was adhered to. The case studies have all been provided with pseudonyms in this article.
Seventeen of the 18 participants were women: 14 mothers, 3 grandmothers and 1 male cousin. The overall level of caregiver education was low, with eight never having attended school and only three having attended high school or tertiary education. A socio-economic index illustrated that most families were extremely poor, and fathers were completely absent, lived separately or worked away from home, commonly with infrequent visits.
In summary, from the thematic analysis, the key emerging themes across the data from all 18 families were (1) acquisition of
We organise our results by firstly presenting a case study and then linking the case study to the wider thematic analysis conducted on data from across all 18 families.
Jacinta, a single unmarried mother with two children, lived with her own mother in rural Upper East Ghana.
One of her sons, Maxwell, was 2.5 years old, had severe cerebral palsy and was severely underweight and stunted when we first met him. The grandmother had elephantiasis and had limited mobility. They were subsistence farmers, with some small additional income from hat weaving. The mother was unmarried, and the father of the children visited once over the 14-month period, bringing soap as a contribution to the household.
When we first met Jacinta, before she joined the support group, she did not raise her eyes from the ground. It was her mother who provided detail about how difficult their situation was, the particularly high levels of stigma experienced because of traditional views about the child and how isolated they felt. When we met Jacinta 6 months after attending the group, she laughed and chatted openly about the programme and talked of new skills acquired to improve the care for her son. She had felt confident enough to explain her son’s condition to neighbours:
‘Before, they [
Jacinta reflected on feeling valued as a ‘human’, having status conferred by the value of her group membership and meeting other mothers who shared the same situation, thus building her social capital, and also through feeling valued and worthy enough to be visited at home by a facilitator. Jacinta’s case illustrated the development of the
‘At first my mum and I used to weep. I thought I was the only one with this problem but when I saw my colleague women with similar problems, I realised that I wasn’t the only one with this problem.
I feel that we are also human beings and that is why people have come to visit us. Their coming makes me happy.’ (Jacinta, code 9916)
In terms of
This case study illustrates a prominent change across all caregivers, that is, improvement in their
Beatrice was a confident and articulate young mother when we first met her. She had two children and lived on her own in the outskirts of Accra, renting one small room. Her son, David, was 4 years old and was diagnosed with severe cerebral palsy. Beatrice was a seamstress by trade, but because of full-time caregiving for her son, she was not working when we first met her, and this was a source of financial problems. Her husband left them shortly after her son’s birth, blaming Beatrice for ‘bringing disability into the family’, and the last time he had visited was more than 3 years ago. He provided no support.
When we met Beatrice a second time at 6 months, there was growth of her
When we met Beatrice for the third time, after 14 months, the
‘There are days that I struggle to get something to eat and I sleep on an empty stomach. It is not just once. And I don’t want to be a burden on the people I live in the house with … the little I have I give to the children.’ (Beatrice, code 5558)
This case study illustrates the very common impact of poverty on caregivers’ agency across the sample, with the exception of the only two mothers who were in regular paid employment. Poverty was exacerbated when a mother lived unsupported by the child’s father or his family, as was the case for almost all parents in our sample. Even where mothers were living in extended families, a common theme was exclusion and a lack of power over economic resources within the household, which limited their power to take simple actions, such as buying more nutritious food for their child or taking their child for necessary health checks. As the local CBR manager reflected, for many of the families, ‘empowerment starts with the stomach’.
The ‘brokering’ role of the facilitator in helping caregivers navigate their way was a recurring theme across all families, such as the facilitator helping to renew a health insurance card, to negotiate the administration of access to the Disability Common Fund, to help organise equipment repairs or to facilitate access to health or education services. Although the caregivers had acquired knowledge and confidence, social and political processes were still sometimes overly complex to navigate, or caregivers were not afforded a space to exercise their power. This was illustrated by one mother who finally had the confidence to go to the government office to register her daughter for the Disability Common Fund, only to be turned away.
Carol was educated to the secondary level and was one of only two mothers in the sample to have a professional job with a regular income; she was an administrator in the government health service. She was the only mother who had a husband living at home and who did not work away, and she had two daughters and a son. Her son, James, was a very bubbly smiling boy of 4 years old, with moderate cerebral palsy. Her son was turned away from the local government school because of his disability, but she chose a private school for him and drove him to school on her motorbike.
The first time we met her, before she started the programme, she described her fight to get a diagnosis for her son. After visiting various doctors over a 2-year period, she finally used her work network to approach the Regional Health Director to demand a diagnosis. This demonstrated high levels of self-confidence from the outset, actively seeking information and support. As the main breadwinner in the family, she had power over economic resources, and this facilitated her decision to send her son to private school and to obtain extra healthcare for him. Her case study mirrored the one other mother who was also in paid employment.
When we met Carol at 6 months, this
‘We are more like a family now; we share, we do everything together. When one is having problems, we look how to solve it, and when there is always a problem. I am always helping Fred [
However, at 12 months, she tearfully explained that her husband was imprisoned, and she was struggling to hold down her full-time job whilst caring for all three children. She was also 6 months pregnant. Whilst she was happy that her son was making progress, and importantly was almost able to stand, she had recently come to realise that James had substantial visual impairment. This was a shock to her, that she was coming to terms with, and she was tearful and concerned that he might need to enrol in a school for the blind. She was looking for support and guidance from the group facilitator to help her navigate the educational and treatment choices for her son.
This case study illustrates the complexity of the empowerment journey, and mirrors the complexity of all the caregiver lives in this study, with the fluidity of changing support needs over time. In Carol’s case, it was her husband’s imprisonment, and the changing care needs of her son, that impacted on her empowerment journey. For other mothers, it was shocks such as being forced to leave rented accommodation because of the stigma associated with their child’s condition, a husband moving out to look for a second wife or the loss of work because of their caregiving duties.
The article explores the journey of caregiver empowerment and the factors that shape this process for caregivers of children with disabilities. This offers a critique of the narrow understanding of what it means to ‘empower a family’ when the focus remains limited to the individual. Our analysis indicates the pertinent influence of broader relational and structural conditions in impeding the impact of an empowerment programme on the lives of caregivers and their children.
Instead, we offer a more nuanced understanding of that journey as caregivers engage with a community-based participatory training programme in Ghana. We found the metaphor of a journey useful, as proposed by Cornwall (
In our study, it was evident that the individual
The findings also illustrate, within the family ecosystem, that the
In terms of
We would argue that important changes occurred in caregiver feelings of self-worth and self-esteem that were essential stepping stones on their journey, but extreme poverty still limited their self-potential, when the main concern for some was putting food on the table. In the context of poverty, life is precarious for any family, but this research illustrates the augmented vulnerabilities brought about by having a child with a disability and how this shapes the possibilities for empowerment.
Therefore, drawing together these different experiences, our study shows that if we want to take a more transformative approach to maternal and child health for children with disabilities, it requires approaches that permeate the outer circles of the child and caregiver ecosystem. This is about a closer alignment with empowerment theory, which was always about looking at different dimensions and levels of empowerment and never only about the individual, even if that is more difficult for us to evaluate. There can be a tendency in the framing of family-focussed disability programmes, ours included, to lean more on the psychological framing of empowerment, about fostering change in the individual caregiver, but this study shows that it is about relationships, networks and structural issues.
Although not a focus of the initial programme, on completion of the study, the caregivers engaged collectively on a local advocacy activity through the local community radio to raise awareness about their issues. Other studies have similarly shown the power of collective agency for change by caregivers of children with disabilities (Elphick et al.
If we return to theories of empowerment, we would argue that it is also valuable to look at who can play a key role in the reorientation of power within the ecosystem layers. In our study, the group facilitator played a crucial role in brokering power over local social and political processes and thereby facilitating easier steps for caregiver empowerment. Local community health or education professionals are part of the invisible and hidden power structures (Gaventa
At the same time, we also recognise the possible tension with creating dependency on a facilitator, and this is similarly explored in a critique of disability care in Africa (Morvan et al.
Finally, our study also calls for an improved understanding that the empowerment process is not always a linear one, especially when lives are so fragile. And given this fragility, and the long-term support needs for children with developmental disabilities, the empowerment journey is never likely to be a quick process; caregivers will have different support needs at different times. This is summed up in a discussion on women’s empowerment: ‘when we find the path we wish to tread, first walk in front of us; then, when we are stronger, walk beside us; and finally, when we are truly strong, walk behind us’ (Batliwala
Future research would benefit from observations of the support group and of the home visit and understanding more about the role of the group facilitator. It would also benefit from revisiting the families after a longer time period in order to understand how some changes have evolved and are sustained. The families in the study were in areas supported by the local partner, the Presbyterian Church of Ghana, which typically works in areas of greater deprivation, and many of our families were the ultra-poor, where poverty was likely to play a greater role and where there were very low levels of caregiver education. Ultimately, this training is intended to improve outcomes for children with disabilities, and as such, children should also be taken on an empowerment journey. In this study, the majority of the children were under 5 years, but in any future study with older children the issues of children’s empowerment should be explored.
New global maternal and child health strategies call for a more transformative approach, with women and children as agents of change. Empowerment is also core to the WHO CBR guidelines. Despite much work over the years on empowerment as a theoretical construct, research on how this works in practice for families of children with disabilities in low-resource settings is limited. We illustrate some important gains in caregiver empowerment as caregivers engaged with a participatory training programme in Ghana, in particular in terms of improvements in
The authors thank Marjolein Baltussen and Jedidia Abanga for their support throughout the project. Thank you to Martine Collumbien for her discussion on empowerment early on in planning this article. The authors would also like to thank the members of the Ghana and international advisory board members, including Maxwell Akandem, Norgrove Penny, Eben Badoe, Mel Adams, David O’Banion, Sandra Carsamer, Melissa Gladstone and Cally Tann.
The authors have declared that no competing interests exist.
M.Z. was the project leader, responsible for the research design; she conducted the interviews and was the lead on analysis and writing of manuscript. J.S. and T.S. supervised the research and contributed to the editing of the manuscript. G.G.N. conducted the interviews, supported the analysis and contributed to the editing of the manuscript. S.B. supervised the research, contributed to the interview guides and overall design and edited the manuscript.
Funding was provided by CBM International.
Consent was provided by the families in 2015 for data to be shared within the research team only. This data sharing policy has now been changed at the London School of Hygiene and Tropical Medicine for all future projects.
The views and opinions expressed in this article are those of the authors.