Defining children's rights to work and care in Sub-Saharan Africa: tensions and challenges in policy and practice

This chapter explores the spatialities of children's rights through a focus on how children's paid and unpaid work in Sub-Saharan Africa intersects with wider debates about child labor, child domestic work and young caregiving. Several tensions surround the universalist and individualistic nature of the rights discourse in the context of Sub-Saharan Africa and policymakers, practitioners, children and community members have emphasized children's responsibilities to their families and communities, as well as their rights. The limitations of ILO definitions of child labor and child domestic work and UNCRC concerns about 'hazardous' and 'harmful' work are highlighted through examining the situation of children providing unpaid domestic and care support to family members in the private space of their own or a relative's home. Differing perspectives towards young caregiving have been adopted to date by policymakers and practitioners in East Africa, ranging from a child labor/ child protection/ abolitionist approach, to a 'young carers'/ child-centered rights perspective. These differing perspectives influence the level and nature of support and resources that children involved in care work may be able to access. A contextual, multi-sectorial approach to young caregiving is needed that seeks to understand children's, family members' and community members' perceptions of what constitutes inappropriate caring responsibilities within particular cultural contexts and how these should best be alleviated.

Using the Technology Acceptance Model to explore community dwelling older adults’ perceptions of a 3D interior design application to facilitate pre-discharge home adaptations

Background In the UK occupational therapy pre-discharge home visits are routinely carried out as a means of facilitating safe transfer from the hospital to home. Whilst they are an integral part of practice, there is little evidence to demonstrate they have a positive outcome on the discharge process. Current issues for patients are around the speed of home visits and the lack of shared decision making in the process, resulting in less than 50 % of the specialist equipment installed actually being used by patients on follow-up. To improve practice there is an urgent need to examine other ways of conducting home visits to facilitate safe discharge. We believe that Computerised 3D Interior Design Applications (CIDAs) could be a means to support more efficient, effective and collaborative practice. A previous study explored practitioners perceptions of using CIDAs; however it is important to ascertain older adult’s views about the usability of technology and to compare findings. This study explores the perceptions of community dwelling older adults with regards to adopting and using CIDAs as an assistive tool for the home adaptations process. Methods Ten community dwelling older adults participated in individual interactive task-focused usability sessions with a customised CIDA, utilising the think-aloud protocol and individual semi-structured interviews. Template analysis was used to carry out both deductive and inductive analysis of the think-aloud and interview data. Initially, a deductive stance was adopted, using the three pre-determined high-level themes of the technology acceptance model (TAM): Perceived Usefulness (PU), Perceived Ease of Use (PEOU), Actual Use (AU). Inductive template analysis was then carried out on the data within these themes, from which a number of sub-thmes emerged. Results Regarding PU, participants believed CIDAs served as a useful visual tool and saw clear potential to facilitate shared understanding and partnership in care delivery. For PEOU, participants were able to create 3D home environments however a number of usability issues must still be addressed. The AU theme revealed the most likely usage scenario would be collaborative involving both patient and practitioner, as many participants did not feel confident or see sufficient value in using the application autonomously. Conclusions This research found that older adults perceived that CIDAs were likely to serve as a valuable tool which facilitates and enhances levels of patient/practitioner collaboration and empowerment. Older adults also suggested a redesign of the interface so that less sophisticated dexterity and motor functions are required. However, older adults were not confident, or did not see sufficient value in using the application autonomously. Future research is needed to further customise the CIDA software, in line with the outcomes of this study, and to explore the potential of collaborative application patient/practitioner-based deployment.

Care, disability and HIV in Africa: diverging or interconnected concepts and practices?

Recent research and policy have recognised the central role of unpaid care-givers (often women and girls) in the global South. Disability rights perspectives, however, challenge the language of ‘care’ and ‘dependence’. Drawing on qualitative research with women living with HIV and children caring for them in Tanzania, and on learning from the National Community of Women Living with HIV and AIDS in Uganda (NACWOLA), this paper explores the divergences and interconnections between the concepts and practices of care, disability and HIV in the context of East Africa. Despite the development of interdependent caring relations, both care-givers and people living with HIV in Tanzania experience ‘diminished autonomy’. The participation of people living with HIV, including disabled people, in home-based care and in peer support groups, however, can enhance ‘relational autonomy’ for both care-givers and care-recipients. We reflect on opportunities and challenges for mutual learning and cross-movement advocacy by disabled people, people living with HIV and care-givers.

Kvinnors upplevelse av planerad hemförlossning i Skandinavien : Women´s experience of planned home birth in the Scandinavian countries

Background: In Sweden and Norway planned home birth is not included in the health care system. In Denmark women with expected low risk birth have the right to choose home birth. Registrations of home births in the Nordic countries are not completed and women’s experiences of planned home birth in Scandinavian context are not earlier described.Objective: The aim of this study was to describe women’s experiences of planned home birth in the Scandinavian countries.Design: Inductive content analysis. Fifty-three Scandinavian women who have experienced planned home birth have replied an open question in a questionnaire. Findings: In the analysis five categories and twelve subcategories emerged. The categories were, to feel secure, experiences of support, being in control, harmony and insecurity. The women felt secure and calm in their own homes. They felt being in control, secure, support and trust in the midwife, relatives and the own body. What worried the women most in presence of the delivery was that the midwife should not be present. Keywords: Home birth, experiences, women.

Pregnant Adolescents in Vietnam : Social context and health care needs

Background: The number of childbearing adolescents in Vietnam is relatively low but they are more prone to experience adverse outcome than adult women. Reports of increasing rates of abortion and prevalence of STIs including HIV among youth indicate a need to improve services and counselling for these groups. Midwives are key persons in the promotion of young people’s sexual and reproductive health in Vietnam. Aim: The overall aim of this thesis is to describe the prevalence and outcome of adolescent pregnancies in Vietnam (I), to explore the social context and health care seeking behavior of pregnant adolescents (II), as well as to explore the perspectives of health care providers and midwifery students regarding adolescent sexuality and reproductive health service needs (III, IV). Methods: The studies were conducted from 2002 to 2005, combining qualitative and quantitative research methods. A population based prospective survey was used to estimate rates and outcomes of adolescent pregnancies (I). Pregnant and newly delivered adolescents’ experiences of childbearing and their encounters with health care providers were studied using qualitative interviews (II). Health care providers’ perspective on adolescent sexual and reproductive health (ASRH) and views on how to improve the quality of abortion care was explored in focus group discussions (FGD). The values and attitudes of midwifery students about ASRH were investigated using questionnaires and interviews (IV). Descriptive statistics was used to analyse quantitative data (I, IV) and content analysis were applied for qualitative data (II, III, and IV). Findings: Adolescent birth rate was similar to previously reported in Vietnam but lower when compared to other Asian countries. The incidence of stillborn among adolescents was higher than for women in higher reproductive ages. The proportion of preterm deliveries was 20 % of all births, higher than previous findings from Vietnam. About 2 % of the deliveries were home deliveries, more common among women with low education, belonging to ethnic minority and/or living in mountainous areas (I). Ambivalence facing motherhood, pride and happiness but also worries and lack of self-confidence emerged as themes from the interviews; and experience of ‘being in the hands of others’ in a positive, caring sense but also in a sense of subordination in relation to husband, family and health care providers (II). Health care providers at abortion clinics and midwifery students generally disapproved of pre-marital sex, but had a pragmatic view on the need for contraceptive services and counselling to reduce the burden of unwanted pregnancies and abortions for young women. Providers and midwifery students expressed a need for training on ASRH issues (III, IV). Conclusion: Cultural norms and gender inequity make pregnant adolescent women in Vietnam vulnerable to sexual and reproductive health risks. Health care providers experience ethical dilemmas while counselling unmarried adolescents who come for abortion and this has a negative impact on the quality of care. Integrated ASRH in education and training programmes for health care providers, including midwives, as well as continued in-service training on these issues are suggested to improve reproductive health care services in Vietnam.

Acceptability of home-assessment post medical abortion and medical abortion in a low-resource setting in Rajasthan, India : Secondary outcome analysis of a non-inferiority randomized controlled trial

Background: Studies evaluating acceptability of simplified follow-up after medical abortion have focused on high-resource or urban settings where telephones, road connections, and modes of transport are available and where women have formal education. Objective: To investigate women's acceptability of home-assessment of abortion and whether acceptability of medical abortion differs by in-clinic or home-assessment of abortion outcome in a low-resource setting in India. Design: Secondary outcome of a randomised, controlled, non-inferiority trial. Setting Outpatient primary health care clinics in rural and urban Rajasthan, India. Population: Women were eligible if they sought abortion with a gestation up to 9 weeks, lived within defined study area and agreed to follow-up. Women were ineligible if they had known contraindications to medical abortion, haemoglobin < 85mg/l and were below 18 years. Methods: Abortion outcome assessment through routine clinic follow-up by a doctor was compared with home-assessment using a low-sensitivity pregnancy test and a pictorial instruction sheet. A computerized random number generator generated the randomisation sequence (1: 1) in blocks of six. Research assistants randomly allocated eligible women who opted for medical abortion (mifepristone and misoprostol), using opaque sealed envelopes. Blinding during outcome assessment was not possible. Main outcome measures: Women's acceptability of home-assessment was measured as future preference of follow-up. Overall satisfaction, expectations, and comparison with previous abortion experiences were compared between study groups. Results: 731 women were randomized to the clinic follow-up group (n = 353) or home-assessment group (n = 378). 623 (85%) women were successfully followed up, of those 597 (96%) were satisfied and 592 (95%) found the abortion better or as expected, with no difference between study groups. The majority, 355 (57%) women, preferred home-assessment in the event of a future abortion. Significantly more women, 284 (82%), in the home-assessment group preferred home-assessment in the future, as compared with 188 (70%) of women in the clinic follow-up group, who preferred clinic follow-up in the future (p < 0.001). Conclusion: Home-assessment is highly acceptable among women in low-resource, and rural, settings. The choice to follow-up an early medical abortion according to women's preference should be offered to foster women's reproductive autonomy.

Life situations and the care burden for stroke pa­tients and their informal caregivers in a prospective cohort study

Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ‡65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Usual clinical practice for early supported discharge after stroke with continued rehabilitation at home : an observational comparative study

Introduction: Based on randomised controlled trials, evidence exists that early supported discharge (ESD) from the hospital with continued rehabilitation at home has beneficial effects after stroke; however, the effects of ESD service in regular clinical practice have not been investigated. The purpose of the current study was to compare ESD service with conventional rehabilitation in terms of patient outcomes, caregiver burden at 3 and 12 months and the use and costs of healthcare during the first year after stroke. Material and methods: This study was a subgroup analysis of a longitudinal observational study of patients who received care in the stroke unit at Karolinska University Hospital in Sweden. Patients who met the inclusion criteria for ESD in previous experimental studies were included. The patients were referred to available rehabilitation services at discharge, and comparisons between those who received ESD service (the ESD group, n = 40) and those who received conventional rehabilitation (the NoESD group, n = 110) were performed with regard to independence in activities of daily living (ADL), the frequency of social activities, life satisfaction, and caregiver burden and the use and costs of healthcare during the first year after stroke. Results: At 3 and 12 months, no differences were observed with regard to patient outcomes; however, ESD was associated with a lower caregiver burden (p = 0.01) at 12 months. The initial length of stay (LOS) at the hospital was 8 days for the ESD group and 15 days for the NoESD group (p = 0.02). The median number of outpatient rehabilitation contacts was 20.5 for the ESD group (81% constituting ESD service) and 3 for the NoESD group (p<0.001). There was no difference between the groups with regard to overall healthcare costs. Conclusions: ESD service in usual clinical practice renders similar health benefits as conventional rehabilitation but a different pattern of resource use and with released capacity in acute stroke care.

Cuidados paliativos e ser-para-morte: reflexões sobre um atendimento psicológico

Death is a theme that fascinates, though at the same time, frightens and uneasy the human being, despite the finitude being present at our daily lives. In each historical time, death has been represented in a peculiar way, from familiar death (at Middle Ages), to interdicted death (at contemporary times). Through this path it‟s possible to recognize several attitudes and stages front of death and the process of dying as possibilities of coping and the understanding of these occurrences. In other hand, the palliative care proposal came as a humanized attention, front of the human finitude, recognizing death as a part of the vital cycle. The Brazilian reality, in this context, still faces a lot of political, economic and social barriers that makes difficult the consolidation of palliative care at the death process in the Brazilian Health Care policies. Currently, according to the Brazilian Palliative Care Association, Brazil presents an average of 40 services with this proposal. Such data portray our inexpressive condition in relation to these cares when considering the territorial extension and population of our country. Considering this scenario is relevant think about death and the process of dying at contemporary times, at a health context in which palliative care, when trying to humanize the process of dying, bring to light the issue of human finitude and the beingtowards- death, as thought by the philosopher Martin Heidegger. According to him, the human being (Dasein) is constituted as a being-towards-death, once death is its most own potentiality-for-bein and its last possibility to be lived. In view of the ideas presented, the proposed study appears as a qualitative research of existential-phenomenological inspiration and aims to understand the experience of being-toward-death from the psychological care to a person out of possibilities of cure living on palliative cares. The psychological care happened at the patient‟s home, understanding the clinical process of being-with-the-other from the written reports of the psychology/researcher, by the accompanying sessions, configured as an experience report. These reports are focused on the experiences lived by the patient, as well as apprehended by the psychologist at the intersubjectivity relation and its own experience with Dasein and, therefore, being-toward-death. The reports were hermeneutically interpreted, from the senses that emerged in this process, considering the notion of being-toward-death proposed by Heidegger. Furthermore, it was important to dialogue with other authors that approached the studied theme. It is perceived, through brief and meaningful reflections about the clinical treatments started, that the experience of illness with no possibilities of cure makes the Dasein revises feelings and experiences that were marked at the temporality and historicity of existence. It is a stage of life in which the cultural dimension and the common sense of finitude, often gains ground in the human condition, taken in its ordinary sense, unlike the way it has been thought from an ontological and existential perspective of death. Thus, there are singulars and revealing paths in the palliative care scenery as possible ways for authenticity of being-toward-death

Patients' experiences of peritoneal dialysis at home: a phenomenological approach

O objetivo deste estudo foi compreender a experiência da diálise peritoneal domiciliar, a partir da narrativa dos pacientes. A abordagem do estudo inspirou-se na fenomenologia hermenêutica de Paul Ricoeur. Foram entrevistados 19 pacientes na unidade de hemodiálise de um hospital público brasileiro, de março a setembro de 2009. As entrevistas foram orientadas pela questão: descreva sua experiência na diálise peritoneal. Os resultados desvelaram a percepção dos participantes sobre o significado da doença em suas vidas e as drásticas transformações pessoais sofridas nesse processo. Sentimentos de angústia e dor física foram acompanhados por importantes limitações pessoais e sociais, impostas pelo tratamento. Eles esperam por um futuro incerto, reconhecendo sua dependência da ajuda dos familiares e dos profissionais da saúde. Os resultados desvelam as dificuldades e a falta de perspectivas vividas pelos pacientes em diálise, demonstrando o papel crucial que cabe aos profissionais que os acompanham. Ajudá-los a desenvolver o autocuidado e maximizar sua qualidade de vida é prioridade na assistência a esses pacientes.

Recalled and recorded bowel habits confirm early onset and high frequency of constipation in day-care nursery children

CONTEXTO: Mães relatam início precoce de constipação em crianças atendidas em clínicas de gastroenterologia. OBJETIVOS: Estudar o hábito intestinal em crianças de baixa idade na comunidade, para avaliar se início precoce da constipação é confirmado neste contexto e se há concordância entre o hábito intestinal relatado e o registrado prospectivamente. MÉTODOS: Obtiveram-se dados sobre evacuações de 57 crianças com idade 6.0-40.7 meses, mediante relato materno (questionário sobre características fecais predominantes) e, a seguir, foram registradas 1.934 evacuações em casa e na creche. O hábito intestinal foi classificado como adequado, constipação, diarréia funcional, outro hábito intestinal, conforme frequência evacuatória e proporção das características fecais (macias, duras e/ou que escorrem). Usaram-se dois critérios para classificar o hábito intestinal registrado, devido indefinição no ponto de corte para fezes duras na identificação de constipação em crianças: critério predominante e critério adulto, respectivamente com >50% e >25% de evacuações com consistência alterada. Usou-se estatística não-paramétrica e, para concordância entre hábito intestinal relatado e registrado, o índice Kappa. RESULTADOS: Constipação ocorreu em 17.5%, 10.5%, 19.3% das crianças, respectivamente pelo relato e pelo registro segundo critérios predominante e adulto. Constipação foi o hábito intestinal mais frequentemente relatado, versus 12.3% outro hábito intestinal. Só uma criança se classificou como tendo diarréia funcional (pelo critério adulto). Concordância entre o hábito intestinal relatado e o registrado foi razoável (fair) para constipação, pelos critérios predominante e adulto (K=0.28 e 0.24, respectivamente), mas apenas leve (slight) para os demais hábito intestinal (K <0.16). Entretanto, dados individuais indicaram melhor relação entre relato de constipação com o critério adulto do que com o critério predominante. CONCLUSÕES: Confirmou-se que constipação é frequente e de início precoce. Concordância razoável entre o hábito intestinal relatado e o registrado segundo os dois critérios indica que o relato materno é razoavelmente confiável para detectar constipação.

The importance of knowing the home conditions of patients receiving long-term oxygen therapy

Purpose: Long-term oxygen therapy (LTOT) is one of the main treatments for patients with chronic obstructive pulmonary disease. Patients receiving LTOT may have less than optimal home conditions and this may interfere with treatment. The objective of this study was, through home visits, to identify the characteristics of patients receiving LTOT and to develop knowledge regarding the home environments of these patients.Methods: Ninety-seven patients with a mean age of 69 plus or minus 10.5 years were evaluated. This study was a cross-sectional descriptive analysis. Data were collected during an initial home visit, using a questionnaire standardized for the study. The results were analyzed retrospectively.Results: Seventy-five percent of the patients had chronic obstructive pulmonary disease, and 11% were active smokers. The patients' mean pulse oximetry values were 85.9% plus or minus 4.7% on room air and 92% plus or minus 3.9% on the prescribed flow of oxygen. Most of the patients did not use the treatment as prescribed and most used a humidifier. The extension hose had a mean length of 5 plus or minus 3.9 m (range, 1.5-16 m). In the year prior to the visit, 26% of the patients received emergency medical care because of respiratory problems. Few patients reported engaging in leisure activities.Conclusion: The home visit allowed us to identify problems and interventions that could improve the way LTOT is used. The most common interventions related to smoking cessation, concentrator maintenance and cleaning, use of a humidifier, and adjustments of the length of the connector hose. Therefore, the home visit is a very important tool in providing comprehensive care to patients receiving LTOT, especially those who show lack of adequate progress and those who show uncertainty about the treatment method.

Care arrangements for people with dementia in developing countries

Background: Rapid demographic ageing will soon lead to large increases in the numbers of persons with dementia in developing countries. This study is the first comprehensive assessment of care arrangements for people with dementia in those regions. Methods: A descriptive and comparative study of dementia care; caregiver characteristics, the nature of care provided, and the practical, psychological (Zarit Burden Interview, General Health Questionnaire) and economic impact upon the caregiver in 24 centres in India, China and South East Asia, Latin America and the Caribbean and Africa. Results: We interviewed 706 persons with dementia, and their caregivers. Most caregivers were women, living with the person with dementia in extended family households. One-quarter to one-half of households included a child. Larger households were associated with lower caregiver strain, where the caregiver was co-resident. However, despite the traditional apparatus of family care, levels of caregiver strain were at least as high as in the developed world. Many had cutback on work to care and faced the additional expense of paid carers and health services. Families from the poorest countries were particularly likely to have used expensive private medical services, and to be spending more than 10% of the per capita GNP on health care. Conclusions: Older people in developing countries are indivisible from their younger family members. The high levels of family strain identified in this study feed into the cycle of disadvantage and should thus be a concern for policymakers in the developing world. Copyright © 2004 John Wiley & Sons, Ltd.

Edentulous patients' knowledge of dental hygiene and care of prostheses

Objective: The aim of this study was to analyse denture users' oral care habits with regard to the use of their prostheses. Background: Rehabilitative treatment is only successful when patients are motivated and aware of correct prosthesis use and hygiene. Materials and methods: Questionnaires were distributed to 150 complete denture users at the Federal University of Bahia School of Dentistry, the Esmeralda Natividade Health Center, the Bahian Science Development Foundation and a Salvador nursing home. The questionnaire included information on gender, age, length of prosthesis use, cleaning methods and materials, etc. The data were analysed using EpiInfo version 6 software. The chi-squared test was used for statistical analysis, with a significance level of 5%. Results: Questionnaire results showed that 78% of the subjects, with an average age of 67.3 years, had used the same complete denture for over 5 years. 64% slept with their prostheses and 44% removed them from the mouth only for cleaning. None of the patients interviewed knew anything about brushes designed specifically for complete dentures. 37.3% had a restricted diet and 44% believed that a complete denture would last for more than 10 years. Conclusion: Within the limitations of this study, it was concluded that the edentulous patients surveyed had limited awareness of prosthetic hygiene and long-term oral care despite extended periods of denture use. © 2008 The Authors.

Nurse-patient communication while performing home dialysis: The patients' perceptions

This study aimed at describing patients' perception of their communication with nurses when performing home dialysis. Data were collected from interviews guided by the question: What is communication like, between you and nurses, during home dialysis treatment? Results show participants' perception of treatment during home peritoneal dialysis [Continuous ambulatory peritoneal dialysis (CAPD)]; relationship with nurses and family and the effects of treatment on one's existence. Patients can be self-caring and they learn to value the autonomy in their own care. However, some are unable to assume the responsibility for self-care. It was discovered that the connotation of inspection that some participants attributed to the nurse's visits, led to an alienation from the education process in the CAPD education. Findings suggest that effective communication and the development of the relationship of a working partnership with patients is crucial. Improvement in the nurses' communication, aiming at adapting it to the characteristics, limitations and specific needs of each patient, is significant for achieving better outcomes. © 2010 European Dialysis and Transplant Nurses Association/European Renal Care Association.