ACCORDING to the World Health Organisation (WHO) definition, quality of life is defined as an individual’s perception of their position in life in the context of their culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.
Measuring the quality of life for a person with a disability is viewed as a complexparadigm and evolving thus, generic based quality of life measures are preferred.
There is no gold standard for quality-of-life dimensions and these may vary based on context and preferences. Research indicates the need to consider both health and broader quality of life dimensions.
Various interventions are being provided with the aim of improving the quality of life for people with disabilities, therefore the effectiveness of the interventions should be measured to reflect the change in the quality of life.
Interventions have ranged from livelihoods, capacity building and empowerment programmes, provision of assistive devices, promoting access to services by people with disabilities, including the involvement of people with disabilities in disaster preparedness.
While the interventions and services provided have not been adequate, people with disabilities have adapted to live within the limitations and adjusted their expectations.
The Convention on the Rights of Persons with Disabilities (CRPD) recognises that people with disabilities interface with various barriers, which limit their full and equal participation on an equal basis as others, affecting their quality of life.
However, it is important to understand the quality-of-life dimensions to be measured and these include control, independence, self-care, physical mobility, participation, social relations, dignity, mental health and well-being.
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Physical mobility has been highlighted as an important element because a person with a disability desires to move around without difficulty and making decisions on how they spend their time promotes their independence. Their participation in society on an equal basis as others will ensure their voice and choice is heard. Various tools have been developed and used to measure the quality of life for people with disabilities.
However, the elements of measurement have depended on the views and interests of those that are measuring. In such cases some measurements of quality of life have aligned to the medical model and focusing on the health condition and functional level, while on the other hand measurement has aligned to the social model of disability in view of how a person with a disability interacts with the environment.
Way forward
Assessing the quality-of-life dimensions will enable people with disabilities to exercise their voice and choice on the support and services they receive.
Involving people with disabilities in defining their choices and providing their perspectives will accurately reflect the quality-of-life dimensions that contribute to the broader economic outcome.
Hence effort should be made to take reasonable steps to overcome communication barriers that people with disabilities may face in the consultations.
Quality of life measures should be accessible to people with disabilities and take into account the different impairments in order to assess the effectiveness of interventions for people with disabilities.
It has been noted that poor participation in society, discrimination and stigma contribute towards poor quality of life for people with disabilities.
Society should avert ableism and promote positive experiences for people with disabilities to enhance their potential and participation in development.
People with disabilities should not be seen as less than others. While support has been provided in the spirit of progressive realisation and yet falling short of the commitments, deliberate steps should be taken in order to achieve full realisation.
Allocation of resources and provision for reasonable accommodation determines the quality-of-life outcome.
The collection of disability disaggregated data is key in informing quality of life outcomes. This is in light of the fact that disability is heterogeneous and the experiences of a girl, boy, men and women with disabilities will vary. The use of the Washington Group Short Set of Questions (WGSSQ), mainly used on census and surveys, is focused on disability and functioning rather than quality of life as it is aligned to the WHO, International Classification on Functioning, Disability and Health.
It is important to understand intersectionality and how people with disabilities lived experiences are impacted and intersecting with other identities.
Incorporating both objective and subjective measures of quality of life beyond health-related indicators is imperative.The person with a disability is supported by a family, quality of life assessments should be holistic and take into consideration the support system in order to get an in-depth understanding.
However, in such assessments, the voice of the person with a disability should not be overshadowed and avoid over reliance on the caregiver.
Promoting disability research will enable greater acceptance of disability and quality of life dimensions that will inform relevant programme design and decision-making.
Programmes should provide for assistive technology, which includes, products, resources, strategies, practices and services that promote the functionality of people with disabilities.
Functionality will enhance, autonomy, independence, social inclusion and quality of life. It is known that the need for assistive devices is huge and a person with a disability can accept a device even without a proper assessment.
In order to promote the Do No Harm principle and respect the rights of people with disabilities, assessments should be conducted before providing an assistive device and the person with a disability should be consulted when making provisions for reasonable accommodation.
The provision of an appropriate assistive device is considered a human right. The CRPD advocates for effective measures to ensure personal mobility and independence to the greatest extent possible.
WHO launched the Global Report on Health and Equity for Persons with Disabilities (2022) to highlight the health inequity that people with disabilities experience, which affects their functionality, leading to poor health outcomes and premature death.
Integrating disability in health services will achieve an equitable primary health system and universal health coverage. The adoption of the World Health General Assembly Resolution on Strengthening Rehabilitation (2023) in health systems is a huge milestone and the commitment to the implementation of the resolution will promote physical and mental well-being for people with disabilities.
Quality of life is an important outcome for assessing the impact of disability policies and interventions.
The commitment and determination by the government of Zimbabwe to achieve an inclusive society is greater as outlined in the National Disability Policy, which is aligned to the CRPD.
However, monitoring the implementation of the CRPD and national policies should take into consideration quality of life indicators for people with disabilities.
Tigere is a development practitioner and writes in her personal capacity. These weekly New Horizon articles, published in the Zimbabwe Independent, are coordinated by Lovemore Kadenge, an independent consultant, managing consultant of Zawale Consultants (Pvt) Ltd, past president of the Zimbabwe Economics Society and past president of the Chartered Governance & Accountancy Institute in Zimbabwe (CGI Zimbabwe). — [email protected] or mobile: +263 772 382 852
