Parental perceptions and experience of rehabilitation services for children with cerebral palsy in poorly-resourced areas

Background No data exist about caregivers’ beliefs surrounding a diagnosis of cerebral palsy (CP), its causes and how this influences caregivers’ perceptions of therapy in poorly-resourced South African settings. Neither is there any information about how rehabilitation therapy influences the life of the child or the caregiver. The appropriateness, the outcomes and the effectiveness of therapy for children with CP in a South African setting have not been studied. Numerous tools and scales for measuring outcomes of rehabilitation relating to both the child and the caregiver are available internationally but none have been validated for use in South Africa. Caregiver-related outcomes were the focus of this study and included maternal well-being and mental health, personal quality of life, availability of support and interaction with the child. These are factors known to potentially be influenced through contact with rehabilitation services. Aims The aims of this study were firstly to ascertain whether caregiver-related outcome measures developed in high-income settings were appropriate for a poorly-resourced South African setting; and secondly, to describe parental perceptions and experiences of rehabilitation therapy received in public service hospitals in disadvantaged areas. Methodology The study was undertaken in two phases. Phase One was a quantitative cross-sectional, analytical study and addressed the first aim. Five scales were identified from the literature as being suitable for measuring the caregiver-related outcomes of interest in this study: the Caregiver-Child Scale, the Family Support Scale, the Personal Quality of Life Scale, the Mental Health Subscale of the Medical Outcomes Study (MOS) Short-form 20 Health Survey, and the Measure of Processes of Care (MPOC) Scale. The first four scales measure aspects of maternal well-being and interaction with the child whilst the MPOC assesses caregivers’ reported experiences of family-centred behaviours of rehabilitation service providers. These scales were modified and adapted to make them relevant to a South African setting through a process that included focus groups with caregivers and experienced therapists. After the modified scales had been translated into six local languages and then back-translated into English, the translators, researcher and interviewers met to discuss discrepancies between the two versions (the original modified English version and the back-translation) and to reach consensus on the final translation. The scales were further refined during a pilot study where two trained interviewers administered the modified scales to 24 caregivers of children attending public service hospitals for therapy. Items in the scales which were confusing for caregivers or which they found difficult to understand were clarified. In addition, where necessary, concrete examples were given of the type of behaviour or action being asked about in the scale. Following the pilot study, two trained interviewers administered the modified scales to a convenience sample of caregivers attending rehabilitation therapy in public service hospitals in Gauteng and Limpopo. The reliability and validity of each scale was assessed using multi-trait scaling and factor analysis. Phase Two employed qualitative methodology to address the second aim of the study. A purposive sample of 24 information-rich caregivers attending therapy in public service hospitals in Gauteng and Limpopo participated in one of five focus groups. The discussions were conducted in local languages. Taped recordings were transcribed and translated into English before being analysed using a grounded theory approach. Results Two hundred and sixty three caregivers from 31 hospitals in Gauteng and Limpopo provinces were interviewed during the first phase of the study. The mean age of their children was 3.3 years (± 2.6).Two-thirds of the children (66%) had severe limitations in motor function and few (15%) could communicate verbally. Only one of the five scales, the Mental Health Subscale, proved to be both reliable and valid in South African settings. A second scale - the MPOC - was potentially useful if reduced to an eight item scale (from the original 20 items). The Family Support Scale was reliable but not valid whilst the Caregiver-Child and Personal Quality of Life Scales were neither reliable nor valid. The process of administering the scales combined with the qualitative data helped to explain why the scales did not perform as well as expected in a South African setting. Reasons for these findings included the caregivers’ inexperience in completing these kinds of questionnaires; their difficulty with the concept of grading their responses which meant that Likert-type scales were difficult for them to complete; and thirdly language and cross-cultural applicability. This was because the scales were developed for very different cultural groups. It was not the questions or scale items that were the problem; it was rather finding the language and words that caregivers themselves would use to express the underlying concepts. The study found that caregivers living in disadvantaged South African settings live very differently from their counterparts in well-resourced areas. They lived in poverty; were beset by financial concerns; often abandoned and rejected by their partners; and endured gossip and ignorant attitudes from their neighbours and the community. The burden of daily care-giving was high as most of the children were severely disabled. This was compounded by concern about the child’s health and the future. Despite this, the study found that they were happy, healthy and generally well satisfied with their lives. Support from informal support structures such as relatives and close family members, together with formal support structures, was an important dimension in helping caregivers cope. Qualitative data from the focus groups yielded information regarding caregivers’ beliefs surrounding the perceived cause of the child’s disability. These ranged from traditional and cultural beliefs to medical explanations, and to frank confusion between the two. This was accompanied by misconceptions about therapy and the outcome thereof. Parental perceptions and experiences of rehabilitation were positive although many caregivers initially expected therapy to provide a cure. Respectful and caring attitudes, “hands on” therapy, practical help and assistance with assistive devices and school placements were aspects of service most valued by caregivers. The study helped define the components of an “ideal” therapy service in disadvantaged South African settings. They would include the availability of parent support groups; greater involvement of fathers, close family members and traditional healers in the rehabilitation process as well as the implementation of innovative strategies to ensure clearer communication and understanding between therapists and caregivers operating in a cross-cultural setting. Elements of care not traditionally perceived as part of therapy such as promoting supportive networks and taking on advocacy role for children with disabilities may offer additional advantages. Conclusion The study confirms the view that scales developed in high-income settings are not necessarily immediately applicable to less well-resourced settings and often require extensive modifications to ensure reliability and validity. Whilst the Mental Health Scale is a reliable and valid tool for caregivers attending public service hospitals in South Africa, other scales, such as the MPOC, a popular scale in North American and Europe, require substantial modification for a South African setting. In addition to highlighting the challenges involved in finding suitable outcome measures of therapy intervention for this population, this study has objectively documented the lives and experiences of caregivers of children with CP in South Africa for the first time together with their experiences and perceptions of rehabilitation therapy. Using this information, the components of an “ideal” rehabilitation service in a disadvantaged South African setting have been identified and described. This may facilitate the establishment of a more effective and appropriate therapy service for caregivers and children with CP living in poor areas

From social exclusion to social inclusion : theory and practice over two continents

The article concerns research in the normative social science and is aimed at making a contentious argument that the conceptual frameworks which underpinned much of the literature and research on social exclusion are rooted in European and Anglo Saxon traditions. As such they ignore the contributions made by people of Africa, Asia and Latin America. The discourse regarding social exclusion and social inclusion could therefore not be only with a Western perspective, but should note that the reality of global exclusion is felt most in the developing world. A second challenge is the marked absence of any discussion on power imbedded in social relations and the disruption of bonds between individuals and society. The third challenge to the discourse is the tepid acknowledgement of racism, sexism and other forms of socially constructed exclusions. The fourth challenge relates to the role of the state. It is argued that the discourse should be adapted to country specific situations and contacts to have policy relevance. The European/Western model should be rearticulated with a more developmental focus that puts global inequalities up front and centre and draws from the global South. The future of the social inclusion debate will depend on the ability to develop a global social inclusion drawing on the intellectual capacities of both the global North and the global South

The Bobath Clinical Reasoning Framework: A systems science approach to the complexity of neurodevelopmental conditions, including cerebral palsy

The current recommended developmental Bobath practice within the Bobath Clinical Reasoning Framework (BCRF) can be conceptualized using the lens of systems science, thereby providing a holistic perspective on the interrelatedness and interconnectedness of the variables associated with childhood-onset disability. The BCRF is defined as an in-depth clinical reasoning framework that can be applied to help understand the relationships between the domains of the International Classification of Functioning, Disability and Health, how those domains can be influenced, and how they impact each other. The BCRF is a transdisciplinary observational system and practical reasoning approach that results in an intervention plan. This provides a holistic understanding of the complexity of situations associated with disorders such as cerebral palsy (CP) and the basis for the lifelong management and habilitation of people living with neurological disorders. The clinical reasoning used by the BCRF draws on the important contextual factors of the individual and their social environment, primarily the family unit. It is rooted in an understanding of the interrelationships between typical and atypical development, pathophysiology (sensorimotor, cognitive, behavioural), and neuroscience, and the impact of these body structure and function constructs on activity and participation. The systems science model integral to the BCRF is a useful way forward in understanding and responding to the complexity of CP, the overarching goal being to optimize the lived experience of any individual in any context

Infant feeding practices in a high HIV prevalence rural district of KwaZulu-Natal, South Africa

Aim: To describe infant feeding practices at birth and at 14 weeks post-partum in the Ugu-North Health District, KwaZulu-Natal, South Africa.Methods: A prospective, cohort study design was used. Mothers who delivered over a one-month period were interviewed at birth and14 weeks later. Results: Initially, 168 mothers were interviewed within 24 hours of delivery, of whom 117 (70%) were contactable at 14 weeks post-partum. The vast majority (96%) initiated breast-feeding at birth. At birth, less than one-third (55/168 [32.7%]) of mothers declared an intention to both breast and formula (mix) feed in the next 14 weeks, but by the 14th week post-partum over three-quarters (89/117 [76.1%]) actually practised mixed feeding. At 14 weeks, the prevalence of exclusive breast-feeding was 18%: 52% of infants were offered water and 73% solids. The majority (20/23 [87%]) of HIV infected mothers chose to breastfeed their infants at birth. Nevertheless, they were significantly more likely to formula feed their infants compared to HIV negative mothers (3/23 [13.0%] vs 2/145 [1.4%], OR 10.73, 95% CI 1.34 – 99.16, p = 0.02). By 14 weeks, only 11% of HIV positive mothers were still exclusively breast-feeding, while almost two-thirds (12/19 [63%]) practised mixed feeding. This change was mainly ascribed to their need to return to school (40%) or to work (20%). Conclusions: Most infants were fed inappropriately by 14 weeks of age. The failure to maintain exclusive breast-feeding, despite high initiation rates, is of greatest concern. Routine prevention of mother-to-child transmission of HIV services was ineffective in influencing mothers to follow any feeding regimen exclusively

Reflective portfolios support learning, personal growth and competency achievement in postgraduate public health education

Background. Portfolios are increasingly used across a range of disciplines in health professional education to support reflective practice and to help assess students’ academic and professional development. However, their value in postgraduate education is uncertain.Objectives. To identify the role of portfolios in the development and assessment of professional competencies in postgraduate maternal and child public health education.Methods. A qualitative retrospective review of 35 student portfolios was conducted. Thematic content analysis of portfolios was done, identifying emerging themes and analysing patterns.Results. Two major themes were explored – the benefit of the portfolio to the student and to faculty. For students, portfolios promoted reflective abilities and critical thinking and assisted them in planning learning needs. For faculty, the portfolios assisted in monitoring students’ growth over time, identified learning gaps, helped to establish if expected learning outcomes were being attained and provided feedback on students’ application of academic learning to professional practice. Portfolios also offered students an opportunity to provide critical feedback on curricula content and course pedagogic activities.Conclusion. Portfolios are an under-utilised assessment and self-development tool in postgraduate training. They allow students to self-assess their attainment of personal learning needs, professional growth and competency achievement and provide faculty with useful feedback on curriculum content, educational activities and competency attainment

Investigating the business value of information management

Research on the effect of information management on organizational performance is an important issue. The primary problem of the business value of information is embedded in the following reasoning: information management creates business value indirectly but creates business costs directly, making the evaluation and measurement of information management and the benefits thereof difficult for organizations. In this study an empirical survey was conducted in ten large South African organizations to establish practices and norms in managing the business value of information management, information management investment and benefits evaluation. The most common criteria considered to be important were the ability to adapt and support business changes and the stability and quality of information management services to the user community

Canada’s Foreign Policy : the imperative for change under a new liberal government

Abstract: Canada’s foreign policy is in tatters, its global image is tarnished, and the incoming Trudeau government will need to work miracles to repair the country’s damaged reputation