Stakeholders’ perceptions of rehabilitation services for individuals living with disability: a survey study

There are over one billion people with disabilities in the world, of whom between 110-190 million experience very significant difficulties. This corresponds to about 15 % of the world’s population [1]. The prevalence of disability is growing due to population ageing and the global increase in chronic health conditions. Patterns of disability in a particular country are influenced by trends in health conditions and trends in environmental and other factors –such as road traffic crashes, natural disasters, conflict, diet and substance abuse [1].

Globally, people living with disability have poorer health, lower education achievements, less economic involvement and higher rates of poverty than people without disabilities [1]. These poor socioeconomic outcomes are largely due to the widespread barriers faced by people living with disabilities in accessing health, education, employment and information related services [2, 3]. Disability is complex and the interventions required to overcome the consequences of disability are multiple, systemic, and vary depending on context [4].

Rehabilitation is defined as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments” [4]. A lack of access to rehabilitation services increases the probability of disease or injury; delayed discharge; limited activities; and causes health deterioration in all aspects and a decline in the quality of life [1]. Rehabilitation is cross sectoral and may be carried out by health professionals who coordinate and collaborate with educational, employment, and financial specialists among others [1]. The provision of short and long term rehabilitation may take place in a range of settings (e.g., acute care hospitals, specialized rehabilitation wards, the community, work, or home) [5].

Rehabilitation services may be inadequate, [6‐10] and there are many barriers to accessing the available services [4]. Developing policies and health systems interventions targeting the determinants of these inequalities requires urgent policy attention at national and international levels. To support the implementation of the rehabilitation aspects of the Convention on the Rights of Persons with Disabilities (CRPD), WHO was tasked with developing health services guidelines for rehabilitation services. The guidelines’ recommendations will provide guidance to stakeholders on how to improve rehabilitation services in less resourced settings in line with the recommendations in the WHO/ World Bank World report on disability [4].

WHO guidelines follow the (GRADE) methodology [11, 12]. GRADE offers a transparent and structured process for developing evidence-based guideline guidelines [13]. In addition, the methodology takes into consideration the values stakeholders assign to the outcomes of interest and their perceptions of the feasibility and acceptability of the services being recommended [14].

We conducted a survey study to assess stakeholders’ perceived feasibility and acceptability of a number rehabilitation services and the values they attach to rehabilitation outcomes.

In summary, we conducted an international survey of stakeholders’ perceptions of rehabilitation services for individuals living with disability. The majority of respondents was from the developed countries and perceived ‘increasing access’ and ‘optimizing utilization’ as most critical amongst rehabilitation outcomes. ‘Fewer hospital admissions’, ‘decreased burden of care’, ‘increasing longevity’ and ‘socio-economic status’ were the services rated as least critical. Most stakeholders perceived ‘community based rehabilitation’ and ‘home based rehabilitation’ as interventions that are both definitely feasible and acceptable. The results showed variability in the perception of feasibility and acceptability in relation to ‘integrated and decentralized rehabilitation services’. The majority of stakeholders found ‘task shifting’ to be neither feasible nor acceptable.

The study has a number of limitations. As the study sample consisted mostly of health professionals, the generalizability of our findings to people living with disability, carers of those people and policymakers may be limited. Indeed, these different subgroups are likely to have different perspectives, but the relatively limited numbers of participants did not allow a meaningful subgroup analysis. Similarly, the fact that 65 % of respondents were from developed countries may limit the generalizability to developing countries.

We were unable to quantify the number of invitations sent (and thus calculate the sample size or response rate) as our only contact was with the contact persons of organizations. Although a standardized tool was not available, we developed this survey questionnaire based on a stakeholder survey developed for another WHO guideline on ‘transformative up scaling of health professional education’ [15]. The lack of a formal process to ensure the validity and reliability of the questionnaire does represent a limitation of this study.

Despite these limitations, the wide array of views and perspectives of stakeholders measured by this study adds value to the process of guideline development. This is particularly relevant when considering that stakeholders’ perspectives are generally assessed through the input of a limited number of panelists participating in the guideline process [16]. This study contributes to the currently scarce empirical evidence on the perceptions of stakeholders relating to feasibility and acceptability of different rehabilitation services and the values assigned to the service outcomes for people living with disability. Indeed, while we identified a number of studies assessing the acceptability and feasibility of clinical rehabilitation interventions [17], we did not identify any for health services interventions.

A primary feature of any policy design process is the assurance of involving members who have a stake or vested interest in the outcome of that policy and are the intended users who can most directly benefit from it, as well as others who have a direct or indirect interest in its implementation. Engaging stakeholders in such process enhances intended users’ understanding and acceptance of the utility of designed policies. Stakeholders are much more likely to buy into and support if they are involved in the process from the beginning. The importance of Engaging stakeholders (mainly DPOs) in decision making process related to disability policies has been confirmed by the guiding principles of the UN convention on rights of persons with disabilities that was adopted in 2008 and have been ratified by 154 . Interpreting such principles into feasible methods requires further research to validate scales for measurement of the constructs of values, feasibility and acceptability, including the one we used in this study. Also, there is a need to identify and evaluate processes to integrate findings of stakeholder surveys in the decision making process of guideline development.

Our international survey found a wide variability in the perceptions of stakeholders’ of the feasibility and acceptability of rehabilitation services for individuals living with disability, and in their perceptions of the outcomes relevant to those services. Generally, the majority of participants perceived ‘community based rehabilitation’ and ‘home based rehabilitation’ to be feasible and acceptable. Similarly, the majority of participants perceived ‘increasing access’ and ‘optimizing utilization’ as the most critical amongst rehabilitation outcomes.