A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers' experiences?

BACKGROUND: Caring for a child with complex communication needs associated with a developmental condition frequently adds stress to the caregiver. Furthermore, professional assistance is scarce in low-income rural settings. For such children speech is frequently unachievable. Augmentative and alternative communication provides options for supplementing or replacing speech with other techniques. The current study aimed to examine the experiences of caregivers in Kenya before and after a home-based intervention using augmentative and alternative communication techniques with children with complex communication needs. METHODS: Caregivers were interviewed pre- and post-intervention. The interviews were digitally recorded, transcribed and translated into English. Content analysis was applied through the stages of text familiarization and topic organization. Emergent themes and their sub-themes were identified and labelled. Connections between themes were established and interpretations made. The procedure was completed by a second researcher independently. Conflicting ideas were jointly discussed until consensus was achieved. RESULTS: Four themes emerged from the data: communication process; struggle; normality; and supernatural power. Before intervention, the caregivers acknowledged their expertise in communications with the child, while also revealing their sense of isolation, burden and pain. Normality was present as a source of comparison and also an aspirational goal. Post-intervention more positive language was used to describe the child. There was an 'opening up' of communication that recognized the child's strengths and some social support systems were re-established. The power of the supernatural was recognized before and after intervention. CONCLUSION: Caring of a child with complex communication needs presents many challenges. A home-based intervention using augmentative and alternative communication techniques appears to have been a catalyst for some positive transformations in the caregivers' experiences, although it is not possible to attribute this change to any one aspect. The potentials of the home-based intervention would benefit from further investigation on a larger scale.

Caring for children with physical disability in Kenya: potential links between caregiving and carers' physical health.

BACKGROUND: The health of a carer is a key factor which can affect the well-being of the child with disabilities for whom they care. In low-income countries, many carers of children with disabilities contend with poverty, limited public services and lack assistive devices. In these situations caregiving may require more physical work than in high-income countries and so carry greater risk of physical injury or health problems. There is some evidence that poverty and limited access to health care and equipment may affect the physical health of those who care for children with disabilities. This study seeks to understand this relationship more clearly. METHODS: A mixed methods study design was used to identify the potential physical health effects of caring for a child with moderate-severe motor impairments in Kilifi, Kenya. Qualitative data from in-depth interviews were thematically analysed and triangulated with data collected during structured physiotherapy assessment. RESULTS: Carers commonly reported chronic spinal pain of moderate to severe intensity, which affected essential activities. However, carers differed in how they perceived their physical health to be affected by caregiving, also reporting positive benefits or denying detrimental effects. Carers focussed on support in two key areas; the provision of simple equipment and support for their children to physically access and attend school. CONCLUSIONS: Carers of children with moderate-severe motor impairments live with their own physical health challenges. While routine assessments lead to diagnosis of simple musculoskeletal pain syndromes, the overall health status and situation of carers may be more complex. As a consequence, the role of rehabilitation therapists may need to be expanded to effectively evaluate and support carers' health needs. The provision of equipment to improve their child's mobility, respite care or transport to enable school attendance is likely to be helpful to carers and children alike.

Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: a community-based study.

The effects of epilepsy on children and their families, factors influencing the treatment and education gap and socio-cultural beliefs about epilepsy in children in rural sub-Saharan Africa are not clearly defined. We conducted a qualitative study, with 38 in-depth interviews and 2 focus group discussions with carers of children with epilepsy (CWE) in Tanzania. Discrimination, isolation and lack of hope were identified as major issues. Poor school attendance was attributed to learning difficulties, behavior problems, ongoing seizures and restricted school access. The treatment gap was related to misdiagnosis, preferential use of traditional treatment and cost of biomedical treatment. The hopes expressed for the future centered on access to treatment and education. Improved access to diagnosis, cost-effective treatment, sensitization of the community on epilepsy, collaborative care provision with traditional and faith healers and improved access to specialist schooling could improve the quality of life and future of CWE in this region.

Caring for children with disabilities in Kilifi, Kenya: what is the carer's experience?

BACKGROUND: Carers of children with disabilities have repeatedly highlighted their feelings of discrimination, stigma and exclusion in many domains of their lives. There is little research from Africa addressing these issues. This study investigated the challenges encountered by these carers and the mechanisms of coping with these challenges while caring for children with disabilities in a poor rural setting in Kenya. METHODS: Thirty-five in-depth interviews were conducted with 20 carers, 10 community members and 5 primary school teachers. Ten unstructured observations were also conducted in home environments to observe mechanisms used in meeting the needs of the children with disabilities. All interviews were tape-recorded, transcribed and translated from the local dialect. Note-taking was performed during all the observations. Data were stored in NVivo software for easy retrieval and management. RESULTS: The arrival of a disabled child severely impairs the expectations of carers. Hospital staff underestimate carers' emotional distress and need for information. Fear for the future, stress, rumour-mongering and poverty are encountered by carers. As they grapple with lost expectations, carers develop positive adaptations in the form of learning new skills, looking for external support and in some cases searching for cure for the problem. For their emotional stability, carers apply spiritual interventions and sharing of experiences. CONCLUSION: Despite the challenges faced by the carers, values and priorities in adaptation to the challenges caused by the child's disability were applied. It is recommended that these experiences are considered as they may influence programmes that address the needs of children with disabilities.

Brain blood flow in the nitroglycerin (GTN) model of migraine: measurement using positron emission tomography and transcranial Doppler.

Nitroglycerin has been widely used as a model of experimental migraine. Studies combining measurement of flow velocity using transcranial Doppler (TCD) concurrently with measures of cerebral blood flow (CBF) are uncommon. We report the results of a study combining TCD and positron emission tomography (PET). Healthy volunteers with no personal or family history of migraine underwent measurement of CBF using H215O PET, and velocity using TCD. Measurements were done at baseline, and following i.v. nitroglycerin at 0.125, 0.25 and 0.5 micro g/kg per min. Subcutaneous sumatriptan (6 mg) was injected, with CBF and velocity measured 15, 30, and 60 min later. Nitroglycerin was terminated and measurements obtained 30 min later. Six male and six female subjects were studied. Nitroglycerin increased global CBF while flow velocities decreased. Sumatriptan did not have a significant effect on these values. Regions of increased flow included the anterior cingulate, while regions of decreased flow included the occipital cortex. Our data suggest that nitroglycerin induces regional changes in CBF that are similar to changes reported in spontaneous migraine, but produces distinctly different effects on global CBF and velocity.

Brain damage after neonatal tetanus in a rural Kenyan hospital.

OBJECTIVE: Neonatal tetanus (NNT) is an important cause of mortality in resource poor countries, particularly sub-Saharan Africa. There are no reports of the long-term outcome of children who survive NNT in African hospitals. DESIGN: In a retrospective study of children discharged from Kilifi District Hospital (KDH), Kenya with NNT, each child was linked with a comparative child (CC) in the community matched for age, sex and locality. PARTICIPANTS: A total of 123 patients were admitted with NNT between 1992 and 1996, of whom 68% died. Twenty-three (59%) of the 39 survivors were traced in the community, 10 had moved away, six had died. OUTCOME MEASURES: NNT survivors underwent a neurological and developmental examination and a questionnaire was administered to the parents about the behaviour of the child. A verbal autopsy was used to determine the cause of death in children who had died after discharge. RESULTS: The head circumference of NNT survivors was significantly smaller than that of CC (P=0.037); eight children had microcephaly compared with one CC (P=0.011). NNT survivors had more problems with hand-eye co-ordination tasks (P=0.035), a lower summated developmental score (P=0.023) and more mild neurological abnormalities (P=0.008) than CC. Parents of NNT survivors reported more behavioural problems (P=0.02) than parents of CC. CONCLUSIONS: Children who survive NNT have evidence of brain damage that manifests as microcephaly, mild neurological abnormalities, developmental impairment - particularly fine motor difficulties - and behaviour problems.

Radioimmunodetection of colorectal carcinoma with 111In-labelled monoclonal antibody IVP ZCE 025 (a tissue culture-produced anti-CEA MAb).

The aims of this prospective, nonrandomized phase I/II study were to evaluate (1) the safety and (2) the detection rate of tissue culture-derived, 111In-labelled anti-CEA monoclonal antibody IVP ZCE 025 in patients with primary, metastatic and occult colorectal carcinomas. 111In-IVP ZCE 025 imaging correctly identified 31 of 37 primary colorectal carcinomas, 10 of 19 hot liver metastases, 11 of 16 distant metastases and seven of seven local tumour recurrences. Previously unsuspected tumours were detected by IVP ZCE 025 imaging in 11 of 34 patients. The scans were also true negative in four patients. The overall performance characteristics of IVP ZCE 025 at monoclonal antibody doses of 1.0-5.0 mg were comparable to those obtained with 40.0 mg ascites-produced ZCE 025. No clinical or biochemical adverse reactions were encountered in the 61 patients entered into this study.

Colorectal carcinoma metastases: detection with In-111-labeled monoclonal antibody CCR 086.

A phase I/II clinical trial with indium-111-labeled antimucin murine monoclonal antibody (MoAb) CCR 086 was conducted. Seventeen patients with histologically proved colorectal carcinoma and known metastatic disease underwent external scintigraphy after administration of 5.5 mCi (203.5 MBq) of In-111 CCR 086 at doses of 5 and 20 mg. Of 25 known lesions, 17 were detected (sensitivity, 68%). The smallest detected lesion in the lung was 1 cm and in the liver was 1.5 cm. The serum half-life of In-111-labeled CCR 086 MoAb was approximately 64 hours. The formation of human antimouse antibody (HAMA) was detected in the serum of four of five patients who received 20 mg of MoAb. No HAMAs were detected in four patients receiving 5 mg of MoAb. No side effects were encountered. Because of effective detection of liver and lung metastases with lower doses (5-20 mg) of CCR 086 conjugated with In-111, further investigations are warranted to assess clinical and therapeutic potentials of CCR 086 in the management of colorectal cancer.

Uptake of myocardial imaging agents by rejecting and nonrejecting cardiac transplants. A comparative clinical study of thallium-201, technetium-99m, and gallium-67.

To study the scintigraphic detectability of cardiac rejection, we performed 135 planar myocardial scans ([99mTc]pyrophosphate, 85; 201Tl, 36; 67Ga, 14) together with endomyocardial biopsies in ten patients for a (mean) 17-mo postoperative period. Specificity of each agent exceeded 89%. Technetium-99m pyrophosphate showed results that significantly correlated with the severity of rejection (p = 0.03), as shown by biopsy, but neither 201Tl nor 67Ga did so (p = 0.63 and 0.81, respectively). Technetium-99m pyrophosphate showed better diagnostic accuracy (85%) than 201Tl (69%) and 67Ga (64%). Technetium-99m pyrophosphate also showed higher negative predictive value (91%) than thallium (76%) and gallium (69%). Thus, a normal 99mTc pyrophosphate scan was usually associated with absence of cardiac rejection. However, all three agents showed unacceptably poor sensitivity (0% to 30%) and thus were not useful as a screening test for cardiac rejection, even when the same agent was used serially in imaging a given patient.

Uptake of myocardial imaging agents by rejected hearts.

Technetium 99 m pyrophosphate, Gallium 67 and Thallium 201 uptakes were measured in heterotopically transplanted rat hearts. Five days after transplantation, Technetium 99 m pyrophosphate, and Gallium 67 uptakes were significantly higher in allogeneic grafts than in syngeneic grafts. At an early stage of rejection (three days after transplantation), only Technetium 99 m pyrophosphate uptake in the left ventricle of allogeneic grafts showed a significant difference (p less than 0.04). At five days, Thallium 201 uptake was significantly lower in allo- than syngeneic grafts. There was a positive correlation between radionuclide uptake and histologic degree of rejection for Technetium 99 m pyrophosphate and Gallium 67 while Thallium 201 uptake correlated negatively. Analysis of variance revealed that hearts with no or minimal rejection had statistically different uptakes than hearts with mild to moderate rejection. These results suggest that uptake of imaging agents might be useful in the diagnosis of rejection of the transplanted heart.

Effect of vitamin D3 on imaging of experimental myocardial infarcts with technetium-99m pyrophosphate: further studies of the role of calcium.

We previously found that a pulse dose of vitamin D3 increased [99mTc]PPi uptake by rat myocardial necrosis. Vitamin D3 raised serum and lesion [Ca] but not, we now report, lesion [Fe]. We now also report that D3 increased [99Tc]PPi uptake by myocardial infarcts (L) in dogs from 0.345 +/- 0.007% administered (kg) dose/g in controls to 0.703 +/- 0.089 in treated (p less than 0.025). Vitamin D3 decreased uptake by dog bone (B) as measured in rib and sternum, increasing L/B from 1.10 +/- 0.23 to 2.30 +/- 0.52 (p = 0.06) X (L) was positively, (p less than 0.005) and uptake by sternum was negatively (p less than 0.05) correlated with serum [Ca] and [P], respectively. Scintigrams graded by a "blinded" observer, showed 4+, 4+, and 3+ infarcts, respectively, in three D3-treated dogs, and 2+, 2+, and 1+, respectively, in three untreated. One untreated and one treated dog were negative; the latter showed the least response to D3 in serum [Ca] and [99mTc] in tissue samples. Vitamin D3 can increase L/B in dogs, enhancing scintigraphic images.