Gillian Lewando Hundt

Meeting the Needs of Parents Around the Time of Diagnosis of Disability Among Their Children: Evaluation of a Novel Program for Information, Support, and Liaison by Key Workers

Objective. Key worker programs for families of children with disabilities, to promote information provision, emotional support, and liaisons among different agencies, have long been advocated but not extensively implemented. We report the impact on the experiences of parents and the practices of health care professionals of a novel, hospital-based, key worker service (Community Link Team [CLT]), implemented in the pediatric ophthalmology department of Great Ormond Street Hospital (London, United Kingdom). Design, Setting, and Participants. The CLT included 2 members, 1 of whom was present during the first outpatient assessment by the consultant ophthalmologist of any child newly diagnosed as visually impaired (corrected acuity of 6/18 or worse in the better eye) and accompanied the family during other assessments performed during that visit. A dedicated room was used by the CLT members to spend time with each family after completion of the clinical assessments. The CLT members reiterated and/or clarified clinical information already provided, specifically advised the families about visual stimulation programs and the benefits and purpose of visual impairment certification, and provided information about educational and social services. The same CLT member met the family at subsequent visits to the department and acted as the first point of contact for parents. Parents of children newly diagnosed with visual impairment and/or ophthalmic disorders at Great Ormond Street Hospital participated in a 2-stage study to assess their needs, their views about the processes of care, and their overall satisfaction. The study included a questionnaire survey with 2 standard instruments, ie, the Measure of Processes of Care, specifically developed and used to assess parents’ views of the degree to which health services for a range of childhood disorders are family-centered, and the short form of the Client Satisfaction Questionnaire, used to assess overall parental satisfaction or dissatisfaction with services in the preceding year, as in other studies of parental satisfaction with pediatric services. This was followed by in-depth individual interviews with a subsample of parents who returned completed questionnaires. The views of families with experience with the new service (CLT) were compared with those without. The experiences of health care professionals before and after implementation of the service were elicited through group interviews and were compared. We recognized that any differences would be attributable to both the direct effects of the CLT, ie, actual services provided by the team, and indirect effects, ie, broader changes in approaches or practices within the department resulting from shifting roles and responsibilities regarding specific elements of management. Therefore, both the specific tasks/activities undertaken by the CLT and broader changes in practices within the department were identified. Results. Seventy-nine families from the pre-CLT group and 68 from the post-CLT group (68% and 65% of those invited, respectively) participated in the questionnaire survey, of which 29 and 19 (71% and 79% of those invited), respectively, took part in interviews. The 2 groups were comparable with respect to sociodemographic and clinical characteristics. Parents and health care professionals agreed that the CLT provided important information and facilitated access to specific services, while providing both emotional and social support and facilitating meetings with other families with children with similar conditions. A number of key generic components of the service were identified. First, provision, within the outpatient setting, of a dedicated “quiet room” and office space for key workers was an essential physical requirement. Second, early identification of the key workers as the parents’ point of contact was essential; this was achieved in this case by the CLT members attending the first consultation, combined with their detailed debriefing of families at the end of the outpatient visit. Third, the adoption of certain tasks by the key workers, including some previously undertaken by ophthalmologists, helped to define the liaison role of the program. These tasks included discussing the process and benefits of visual impairment certification, contacting the advisory teacher for the visually impaired, and providing written reports to educational and social services; analogous tasks would exist for other disabilities. Conclusions. Research on the needs of families of visually impaired children has been limited but indicates that, as with other childhood disabilities, the greatest needs during the critical period around diagnosis are for information, especially about educational and social services, and emotional support from professionals, informal and formal social networks, and support groups. Although not widely implemented or studied, key worker programs for families of visually impaired children, particularly in the context of multidisciplinary visual impairment teams, have been advocated, on the basis of their potential to facilitate coordination of health, educational, and social services. The model of such provision evaluated in this study reflects the fact that it was established as an outpatient service in a tertiary referral center for pediatric ophthalmology in the United Kingdom, with the specific structure and specialized roles for health care professionals that this requires. Different models might be more suitable in other settings in the United Kingdom or elsewhere. However, the important general lessons learned should guide implementation of such services for families of children with other disabilities. The recently launched National Service Framework for Children provides a new context and standards for meeting the needs of disabled children and their families in the United Kingdom and may also guide initiatives elsewhere. The findings of this study support implementation of programs for information provision, support, and liaison by key workers in all specialized centers for the assessment and diagnosis of children with serious visual problems. Implementation of similar services for families with children with other disabilities is likely to be equally valuable.

The rise of injecting drug use in east Africa: a case study from Kenya

Studies on injecting drug use in East Africa are reviewed. The existingstudies document the spread of heroin injection in Kenya and Tanzania, both countries where HIV rates are high. No data from Uganda on injecting drug use was found by the authors. A case study of the growth of heroin injection in a Kenyan coastal town is presented. The need for needle-exchange programmes and other prevention services is discussed.

Understanding and managing hypertension in an African sub-district: a multidisciplinary approach.

Aims: To use a multidisciplinary approach to describe the prevalence, lay beliefs, health impact, and treatment of hypertension in the Agincourt sub-district. Methods: A multidisciplinary team used a range of methods including a cross-sectional random sample survey of vascular risk factors in adults aged 35 years and older, and rapid ethnographic assessment. People who had suffered a stroke were identified by a screening questionnaire followed by a detailed history and examination by a clinician to confirm the likely diagnosis of stroke. Workshops were held for nurses working in the local clinics and an audit of blood pressure measuring devices was carried out. Results: Some 43% of the population 35 and over had hypertension. There was no relationship with gender but a strong positive relationship with age. Illnesses were classified by the population as being either African, with personal or social causes, or White/Western, with physical causes. The causes of hypertension were stated to be both physical and social. Main sources of treatment were the clinics and hospitals but people also sought help from churches and traditional healers. Some 84% of stroke survivors had evidence of hypertension. Few people received treatment for hypertension, although good levels of control were achieved in some. Barriers to providing effective treatment included unreliable drug supply and unreliable equipment to measure blood pressure. Conclusions: Hypertension is a major problem among older people in Agincourt. There is potential for effective secondary prevention. The potential for primary prevention is less clear. Further information on diet is required.

Factors affecting staff morale on inpatient mental health wards in England: a qualitative investigation

BackgroundGood morale among staff on inpatient psychiatric wards is an important requirement for the maintenance of strong therapeutic alliances and positive patient experiences, and for the successful implementation of initiatives to improve care. More understanding is needed of mechanisms underlying good and poor morale.MethodWe conducted individual and group interviews with staff of a full range of disciplines and levels of seniority on seven NHS in-patient wards of varying types in England.ResultsInpatient staff feel sustained in their potentially stressful roles by mutual loyalty and trust within cohesive ward teams. Clear roles, supportive ward managers and well designed organisational procedures and structures maintain good morale. Perceived threats to good morale include staffing levels that are insufficient for staff to feel safe and able to spend time with patients, the high risk of violence, and lack of voice in the wider organisation.ConclusionsIncreasing employee voice, designing jobs so as to maximise autonomy within clear and well-structured operational protocols, promoting greater staff-patient contact and improving responses to violence may contribute more to inpatient staff morale than formal support mechanisms.

Use of applied theatre in health research dissemination and data validation: a pilot study from South Africa

This article reports on a pilot study of the use of applied theatre in the dissemination of health research findings and validation of data. The study took place in South Africa, as part of the Southern Africa Stroke Prevention Initiative (SASPI) and was based at the University/Medical Research Council Rural Public Health and Health Transitions Research Unit (also known as the Agincourt Unit). The aim of SASPI was to investigate the prevalence of stroke and understand the social context of stroke. It was decided to use an applied theatre approach for validating the data and disseminating findings from the anthropological component of the study. The pilot study found that applied theatre worked better in smaller community groups. It allowed data validation and it elicited ideas for future interventions resulting from the health research findings. Evaluation methods of the impact of applied theatre as a vehicle for the dissemination and communication of research findings require further development.

Advocating multi-disciplinarity in studying complex emergencies: the limitations of a psychological approach to understanding how young people cope with prolonged conflict in Gaza.

The paper looks at the limitations and strengths of using the A-cope questionnaire for measuring strategies for coping with prolonged conflict by Palestinian young people in Gaza. The scale was administered to young people between the ages of 8 and 17. The results show some gender differences in coping strategies. However, some items on the subscales are not relevant for Muslim societies or societies in situations of prolonged conflict. The authors suggest that combining an anthropological contextual perspective and qualitative data with psychological instruments is an effective way of addressing the limitations of using a single quantitative method of assessment in non-Western complex social and cultural settings.

Women's health custom made: building on the 40 days postpartum for Arab women.

The 40-day postpartum period is characterised in the Middle East and elsewhere by an observance of seclusion, congratulatory visiting, the reciprocal exchange of gifts and money, and a special diet. Based on primary data from in-depth interviews among the Negev Bedouin in Israel, health enhancing practices are reviewed. The data are a subset from a larger study carried out in this setting. Often postnatal checkups, family planning counselling, and immunization services may not be routinely available or used. It is argued that these health services could be provided at the end of the 40-day period for mother and child, as in a pilot study in Tunisia some years ago. Health service provision would thus build on the health enhancing practices of the 40-day period.The 40-day postpartum period is characterised in the Middle East and elsewhere by an observance of seclusion, congratulatory visiting, the reciprocal exchange of gifts and money, and a special diet. Based on primary data from in-depth interviews among the Negev Bedouin in Israel, health enhancing practices are reviewed. The data are a subset from a larger study carried out in this setting. Often postnatal checkups, family planning counselling, and immunization services may not be routinely available or used. It is argued that these health services could be provided at the end of the 40-day period for mother and child, as in a pilot study in Tunisia some years ago. Health service provision would thus build on the health enhancing practices of the 40-day period.

Issues of Gender, Reflexivity and Positionality in the Field of Disability: Researching Visual Impairment in an Arab Society

This article examines how the social and cultural context influence the way in which field research methods are utilized. Research methods need to be modified to meet the sensibilities and sensitivities of particular social groups and settings. Through a reflexive analysis of a research study on the lives of visually impaired young people and adults in Bahrain, this article discusses how gender, religion and culture need to be taken account of. It also discusses how the research process needed to take account of the participants’ disabilities. It examines the issues of research access, informed consent, researcher’s dress, confidentiality, research location, and time. It highlights how the gender of the researcher was constraining in some gender segregated educational settings in a Muslim society. The article engages with the researcher’s positionality through reflexive discussion.

The provision of accessible, acceptable health care in rural remote areas and the right to health : Bedouin in the North East region of Jordan

Provision of accessible acceptable health care in remote rural areas poses a challenge to health care providers. This case study of formal and informal health care provision for Bedouin in North East Jordan is based on interviews conducted in 2007-2008 involving clinic providers, policymakers and Bedouin as part of an EC funded study from 2006 to 2010. The paper explores to what extent the right to health as set out in UN General Comment 14 (on Article 12 and 12.2 of the International Covenant on Social Economic and Cultural Rights on the right to health) can provide a framework for considering the availability, accessibility and acceptability of current provision in a rural setting in Jordan. Health care is provided in the public sector by the Ministry of Health and the Royal Medical Services to a dispersed population living in encampments and villages over a large rural area. There are issues of accessibility in terms of distance, and of acceptability in relation to the lack of local and female staff, lack of cultural competencies and poor communication. We found that these providers of health care have a developing partnership that could potentially address the challenge of provision to this rural area. The policymakers have an overview that is in line with applying the concept of health care justice for a more equitable distribution of resources and adjustment of differential access and availability. The health providers are less aware of the right to accessible acceptable health care in their day to day provision whilst the Bedouin population are quite aware of this. This case study of Bedouin in North East Jordan has particular relevance to the needs of populations - both pastoralists and non pastoralists living in remote and rural areas.

An examination of social work interventions for use with displaced Iraqi households in Jordan

The purpose of this paper is to identify and examine how models of social work intervention are being used with displaced Iraqi households in Jordan. The review of the situation of displaced Iraqis in Jordan identifies the size, characteristics and experiences of this group, Jordanian government policies towards them, and the role of IGOs and NGOs dealing with them. The literature review of social work interventions with refugees internationally identifies a range of psycho-social and community-based intervention models that are contextual, some of which include spiritual dimensions. The paper reviews social work interventions in use with Iraqi households in Jordan and concludes that these need to be focused at the individual, household and community levels using an inter-professional, holistic approach that includes spiritual dimensions, and that coordination between agencies is essential.