The development and evaluation of content validity of the Zambia Spina Bifida Functional Measure: Preliminary studies.

BACKGROUND: Very little is known on outcome measures for children with spina bifida (SB) in Zambia. If rehabilitation professionals managing children with SB in Zambia and other parts of sub-Saharan Africa are to instigate measuring outcomes routinely, a tool has to be made available. The main objective of this study was to develop an appropriate and culturally sensitive instrument for evaluating the impact of the interventions on children with SB in Zambia. METHODS: A mixed design method was used for the study. Domains were identified retrospectively and confirmation was done through a systematic review study. Items were generated through semi-structured interviews and focus group discussions. Qualitative data were downloaded, translated into English, transcribed verbatim and presented. These were then placed into categories of the main domains of care deductively through the process of manifest content analysis. Descriptive statistics, alpha coefficient and index of content validity were calculated using SPSS. RESULTS: Self-care, mobility and social function were identified as main domains, while participation and communication were sub-domains. A total of 100 statements were generated and 78 items were selected deductively. An alpha coefficient of 0.98 was computed and experts judged the items. CONCLUSIONS: The new functional measure with an acceptable level of content validity titled Zambia Spina Bifida Functional Measure (ZSBFM) was developed. It was designed to evaluate effectiveness of interventions given to children with SB from the age of 6 months to 5 years. Psychometric properties of reliability and construct validity were tested and are reported in another study.

"It Is an Eye-Opener That There Is a Relationship between Rehabilitation and HIV": Perspectives of Physiotherapists and Occupational Therapists in Kenya and Zambia on the Role of Rehabilitation with Adults and Children Living with HIV.

Purpose: To present the perspectives of rehabilitation providers-physiotherapists and occupational therapists-in Kenya and Zambia on the role of rehabilitation in the care of adults and children living with HIV. Methods: This qualitative, interpretivist study was part of a broader project to adapt a Canadian e-module on HIV-related disability for rehabilitation providers in Sub-Saharan Africa (SSA). Focus groups, demographic questionnaires, and knowledge-attitude-belief surveys were conducted with rehabilitation providers in Kenya and Zambia. Focus group data were analyzed inductively using an iterative content analysis. Results: Sixty-three rehabilitation providers (52 physiotherapists, 11 occupational therapists) participated in 10 focus groups in Nyanza Province, Kenya, and Lusaka, Zambia. The participants described the role of rehabilitation in HIV care in terms of missed opportunities related to (1) HIV disclosure; (2) inter-professional and inter-sectoral collaboration; (3) community-based rehabilitation; (4) training for rehabilitation providers; (5) pediatric rehabilitation; and (6) the connections among disability, HIV, and poverty. Conclusions: The results point to the need for HIV policy and practice leaders to develop new models of care that recognize the crucial role of rehabilitation in the long-term management of HIV to address the shifting needs of the 25 million people living longer with HIV in SSA.

Objectif : présenter le point de vue qu'ont au Kenya et en Zambie les fournisseurs de services de réadaptation ­ physiothérapeutes et ergothérapeutes ­ sur le rôle que joue la réadaptation dans les soins aux adultes et aux enfants vivant avec le virus de l'immunodéficience humaine (VIH). Méthodes : cette étude qualitative et interprétative faisait partie d'un projet plus large visant à adapter, pour les besoins des fournisseurs de services de réadaptation de l'Afrique subsaharienne, un module d'apprentissage électronique canadien sur l'incapacité liée au VIH. Nous avons recueilli des données auprès de fournisseurs au Kenya et en Zambie au moyen de groupes de consultation, de questionnaires démographiques et d'enquêtes portant sur les savoirs, les attitudes et les croyances. Les données provenant des groupes de consultation ont été analysées à l'aide d'une méthode itérative et de manière inductive. Résultats : au total, 63 fournisseurs de services de réadaptation (52 physiothérapeutes, 11 ergothérapeutes) ont participé à 10 groupes de consultation dans la province de Nyanza au Kenya et dans la ville de Lusaka en Zambie. Les participants ont décrit le rôle que joue la réadaptation dans les soins aux personnes vivant avec le VIH en termes d'occasions manquées liées à : (1) la divulgation de la séropositivité ; (2) la collaboration interprofessionnelle et intersectorielle ; (3) les projets de réadaptation à l'échelle communautaire ; (4) la formation des fournisseurs de services de réadaptation ; (5) la réadaptation pédiatrique ; et (6) les liens entre incapacité, VIH et pauvreté. Conclusion : les résultats soulignent la nécessité pour les dirigeants en matière de politiques et de pratiques relatives au VIH de reconnaître le rôle essentiel que joue la réadaptation dans la prise en charge à long terme qui s'impose pour les 25 millions de personnes qui vivent maintenant plus longtemps avec le VIH en Afrique subsaharienne.

Access to health care for children with neural tube defects: Experiences of mothers in Zambia.

INTRODUCTION: In Zambia, all children born with neural tube defects requiring surgery need to be referred to a tertiary level hospital in Lusaka, the capital city, where the specialists are based. The aim of this study was to explore the experiences of mothers accessing health care who had recently given birth to a child with a neural tube defect. METHODS AND ANALYSIS: In-depth interviews were conducted with a purposively selected sample of 20 mothers at the tertiary level hospital. The interviews were audiotaped, transcribed verbatim and translated. Content analysis was used to identify codes, which were later collapsed into categories and themes. FINDINGS: Five themes emerged: access to health care, access to transport, access to information, concerns about family and support needs. DISCUSSION: Barriers to access to health care included geographical barriers and barriers linked to availability. Geographical barriers were related to distance between home and the health centre, and referral between health facilities. Barriers to availability included the lack of specialist health workers at various levels, and insufficient hospital vehicles to transport mothers and children to the tertiary level hospital. The main barrier to affordability was the cost of transport, which was alleviated by either family or government support. Acceptability of the health services was affected by a lack of information, incorrect advice, the attitude of health workers and the beliefs of the family. CONCLUSION: Access to health care by mothers of children with neural tube defects in Zambia is affected by geographical accessibility, availability, affordability and acceptability. The supply-side barriers and demand-side barriers require different interventions to address them. This suggests that health policy is needed which ensures access to surgery and follow-up care.

Challenges experienced by mothers caring for children with cerebral palsy in Zambia.

BACKGROUND: Mothers caring for children with disability experience a number of challenges. AIM: The aim of the study was to explore the challenges that mothers who cared for children with cerebral palsy (CP) living in Zambia experienced. METHODS: During a qualitative study the experiences of 16 conveniently sampled mothers of children with CP, from the Ndola district in Zambia, were explored by means of interviews. The responses were thematically analysed. All the necessary ethical considerations were upheld. RESULTS: Mothers experienced social isolation and marital problems, as well as negative attitudes from family, friends, community members and health care professionals. The physical environment created access challenges because of a lack of sidewalks, ramps, functioning lifts and small indoor spaces. CONCLUSION: Mothers of children with CP feel socially isolated owing to a lack of support from family, community members, and health care providers. This social isolation was exacerbated by attitudes of others towards the mothers; it was felt that mothers were responsible for their children's condition. Mothers also experienced marital problems as a result of having a child with CP.