Unmet service needs of families of young children with chronic illnesses and disabilities

Data about health and educational services were collected from 187 families with young children (under two years) who have chronic illnesses and disabilities. The purpose was to assess parents' satisfaction with services their families received and to identify families' unmet service needs as well as the reasons for these unmet needs. Although families' ratings of the adequacy of services are relatively high, 28% of the families report unmet service needs. The unmet needs most often reported are occupational, physical, or speech therapy; respite care/child care; and special education. Lack of funding is the most commonly given reason for unmet needs. Children with multiple impairments are at highest risk for unmet needs. Only 22% of unmet needs reported at the initial interview have been met by the time of the six-month follow-up. Increased coordination and monitoring of services across service sectors are indicated. Her research interests include the effects of disability on family identity and families' responses to minority stress. She received her Ph.D. from the University of Minnesota. She gratefully acknowledges Shelley Blazis and Nadav Casuto for statistical consulting. Her research interests focus on the impact of chronic illness and disability on families. She received her Ph.D. from the University of Minnesota. Her research interests include families and health and chronic illness and disability in children. She received her Ph.D. in Family Social Science at the University of Minnesota. His areas of interest include neurodevelopmental outcomes of low birth weight infants and training in developmental pediatrics. He was graduated from the University of Minnesota Medical School. His areas of interest include adolescents with chronic illness and disabilities, adolescent sexual decision making, and international adolescent health care issues. He was graduated from Howard University College of Medicine was awarded his earned doctorate in Health Policy from the University of Minnesota. Preparation of this article was supported by the National Institute on Disability and Rehabilitation Research Grant #H133890012.     

Self-reported health problems,health care utilisation and unmet health care needs of elderly men and women in an urban municipality and a rural area of Bhaktapur District of Nepal

The study aimed to identify the felt common health problems, utilisation of health services and unmet needs of urban and rural elderly people of Bhaktapur district, Nepal. It was a cross sectional population study of people aged 60 years or more where 204 respondents were interviewed in 2009. The common felt problems were pain and swelling of joints (65.7%), indigestion (63.7%), excessive tiredness (38.2%) and hypertension (35.8%). Pain and swelling of joints (72.5%) and back pain (40.4%) were higher in rural elderly population whereas indigestion (67.6%) and hypertension (37.85%) were higher in urban population. Pain and swelling of joints (66.7%) and indigestion (69.6%) were higher in males, and hypertension (50.0%), back pain (38.2%) and chronic bronchitis/asthma (39.2%) were higher in females. The unmet needs varied between different health problems. In general women had more unmet needs than men, where 80 unmet needs were identified for the 102 men compared with 105 for the 102 women, and these unmet needs increased dramatically with age. This approach yields new insights into the health care needs of the elderly and will be helpful to health care planners.     

Inequities in health outcomes and access to health care in South Africa: a comparison between persons with and without disabilities

Health is a fundamental human right and if health care is to be universal and equitable it should not be less accessible to some sectors of society than to others. The objective of this study was to compare health outcomes and access to health care between persons living with disabilities and their non-disabled counterparts. The research was based on secondary data analysis of wave 1 of the National Income Dynamic Survey. Results from the study indicated that people with disabilities reported a higher incidence of communicable and non-communicable diseases, lower access to medical insurance and greater use of public health care than their non-disabled counterparts. In conclusion, the findings highlight the inequities in health outcomes and access to health services for people with disabilities and emphasise the need for disability-friendly health care policies that reduce barriers to accessing health care.     

Former system youth with mental health needs: Routes to adult mental health care, insight, emotions, and mistrust

Objective

Public health concern surrounding the mental health needs of former system youth is escalating. We know very little about mental health service utilization on the other side of the developmental transition to adulthood. The purpose of this study was to explore the mental health service use experiences among former system youth with childhood histories which included mental disorder, use of publicly-funded mental health services, and use of additional public systems of care.

Methods

In-depth face-to-face interviews were conducted with 60 participants currently struggling with mental health difficulties regarding their service use experiences over the transition. Participants were recruited from one Midwestern state. Multi-phase analysis was conducted utilizing immersion/crystallization, constant comparison and concept matrices.

Results

Few participants received continuous mental health care across the transition, with the majority experiencing interruptions or discontinuation of care. Important facilitators of service use emerged, such as physicians, former caseworkers and family. Health clinics and parenting programs emerged as potential entrée points for reconnecting disengaged young adults to mental health services. Insight, mistrust, and emotions emerged as novel factors associated with service utilization among young adults.

Conclusions

Mental health service utilization remains a complicated phenomenon over the developmental transition to adulthood. Future research is needed that closely examines the associations between insight, emotion, mistrust and service use among young adults.     

Children with disabilities and chronic conditions and longer-term parental health

This paper uses panel data from the Statistics Canada National Longitudinal Survey of Children and Youth (1994–2000) to study the implications of parenting a child with a disability or chronic condition for subjective assessments of parental health. We find mother's health to be negatively affected, particularly if the disability is longer-term. Within families, the wife's health deteriorates relative to her husband's when they are parenting a child with a disability. These results are consistent with Akerlof and Kranton's [Akerlof, G., Kranton, R., 2000. Economics and identity. The Quarterly Journal of Economics 105(3), 715–753] arguments that ‘identity’ is an important determinant of both behaviour and well-being. For parents of children with disabilities, the behaviour associated with a traditional ‘good mother’ identity (e.g., care-giving) appears to have more adverse health consequences than the behaviour associated with a ‘good father’ identity (e.g., breadwinning).     

Barriers preventing high-quality nursing care of people with disabilities within acute care settings: a thematic literature review

This literature review was conducted to identify obstacles in the provision of quality nursing care to people with disabilities within acute care settings. Research in 2006 by the Disability Rights Commission found that people with disabilities have healthcare needs that are not being adequately met with the quality of care expected or anticipated. Obstacles to the provision of high-quality nursing care are a matter of concern to nursing clinicians, educators and researchers involved with establishing and maintaining professional standards of care for nursing practice. Therefore, this review has identified three major themes illustrating barriers to provision of high-quality nursing care in the acute care setting to people with disabilities. Themes identified were: professional competence, professional attitudes and organisational management. Nurses have an obligation to take into account the concerns and needs of individual clients with a disability.     

The Thorny Dilemma of Gatekeeping versus Inclusion for Students with Disabilities

ABSTRACT

Students with disabilities continue to face difficult obstacles in education. Many times, efforts to assist students are inconsistent, directed by faculty with little knowledge of disability issues, or are reactive efforts to overcome specific problems. The social work faculty at Valdosta State University decided to develop a comprehensive and ongoing program to address disability issues proactively and in a broad sense. Developing the program from intensive literature review, feedback from alumni and students, and assistance from administration has resulted in many successes and an admission that any efforts to develop such a program must be continually reviewed and revised.     

Beyond friendship: the nature and meaning of close personal relationships as perceived by people with learning disabilities

Many people with learning disabilities aspire to having friends and to forming close relationships. Often the latter are discouraged, but for those who enter into such a relationship little is known about the meaning and value it brings to their lives. The aim of this study was to gain an insight into the close relationships of eight couples with learning disabilities using a combination of dyadic and one-to-one interviews. Data collection and analysis was informed and guided by the core principles of grounded theory. Five significant types of benefits were identified from having close personal relationships, namely: comradeship, a sense of contentment, availability of mutual support, coping with the ups and downs of relationships, and a continuing commitment. Service providers could do more to facilitate the formation of close meaningful relationships, and strategies for doing this need to be identified and evaluated.     

The use of photovoice with people with intellectual disabilities: reflections,challenges and opportunities

Photovoice is part of the growing use of participatory research approaches with people with intellectual disabilities. In this paper we explore the process, opportunities and challenges associated with the use of photovoice with people with intellectual disabilities, illustrated through a research project entitled ‘This Is Me’. Photovoice requires researchers to share power and control in the research process and to tolerate uncertainty. Large investments in time and money are also required. These challenges, however, are outweighed by the benefits of the use of photovoice with people with intellectual disabilities. Photovoice creates a space where people with intellectual disabilities can meaningfully participate and exert control in the research process, and as such is an empowering experience. As a participatory research approach, photovoice is accessible and offers the opportunity for people with intellectual disabilities to develop new skills, confidence and experience inclusiveness in their own terms.     

Sexual abuse in adulthood: Ongoing risks for people with learning disabilities

This paper reports findings of a 3-year research programme into the sexual abuse of adults with learning disabilities conducted at the University of Kent. Inconsistent reporting to and by services can be seen in the results, including lack of agreed practice around consent to sexual activities between service users. Abuse is also perpetrated by staff, volunteers, family members and other known and trusted adults. Thus both definition and detection are important competencies for services to develop. Abuse reported was predominantly perpetrated by men on both women and men with learning disabilities, and the gender issues raised by tackling sexual abuse in unequal staff teams, with their male style of management and a female workforce, are considered. Outcomes of the reporting process are considered and services for adults are urged to take a more proactive stance.     

Exploring the specific needs of an understudied group: Children with intellectual disability in residential child care

Children and adolescents who live in out of home care in the child protection system are considered to be vulnerable to manifesting mental health disorders as well as other types of difficulties. This risk is greater in the case of children who display any type of disability. The aim of this study is to profile the state of health and well-being of a group of children presenting intellectual disability who live in residential care in a Spanish autonomous community and to compare these results with their non-disabled peers.     

Workers with disabilities and the challenges of emotional labour

This paper explores the implications of emotional labour for workers with disabilities, drawing on qualitative data from interviews with 59 respondents who had disabilities and who worked in service sector occupations. The analysis illustrates that employer demands for emotional labour may prove difficult for workers with a range of disabilities, including psychiatric diagnoses, learning difficulties and physical impairments. Analysis also points to the ways in which the non‐accommodating nature of many workplaces often forces workers with disabilities to engage in ‘extra’ emotion work in the interests of fitting in and concealing/ downplaying their impairments.     

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal-able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.     

The population revolution: from population policies to reproductive health and women's rights politics

This article utilizes an oral history resource to document the transformation of population policies into women's focused practices and the perception that guided the major actors of this local revolution. The Population Control movement has been a powerful political and health movement that developed family planning to reduce population growth during the Cold War era. It relied upon philanthropic commitment before successfully becoming an official US policy from Nixon to Reagan. The anti-abortion controversies and political conservatism then diminished considerably the global acceptance of population policies. The revolution in population policies demanded a patient effort to conquer strategic positions and to develop new policies. Women program officers played a central role, along with prominent political figures. Most of the transformation occurred at the Cairo conference in 1994, where moderate population experts and feminists came to a compromise. This study finally focuses on the repercussions of the new reproductive health agenda in the population field.     

Income characteristics and the use of microfinance services: evidence from economically active persons with disabilities

The purpose of this empirical research from Uganda is to provide initial insight into the ‘black box’ of understanding the economic behaviour of persons with disabilities and about their use of microfinance services. First, we analyse the income levels of persons with disabilities in relation to their sources of income. Second, we study the income sources and income levels for different types of disabilities. Finally, we analyse how income level and income source relate to the use of microfinance services for persons with disabilities. We present evidence that farmers with disabilities and persons with visual impairments have lower income levels than other persons with disabilities. We then document that those with the lowest income levels have the least access to microfinance services, in particular services from formal institutions. Moreover, respondents involved in farming and manufacturing have less access to formal microfinance services than those involved in retail/wholesale or service activities.     

The invisible minority: under-representation of people with disabilities in prime-time TV dramas in Japan

This study analysed the depiction of people with disabilities in Japanese TV dramas. Using preview issues of TV Guide, we content-analysed serial dramas and drama series aired during prime time on five commercial broadcasting networks between January 1993 and December 2002. The results showed that only 1.7 per cent of the characters examined were disabled, indicating that disabled persons were under-represented on TV. The study also found that most of the disabled persons depicted were young; there were almost no elderly people with disabilities. Analysis also revealed that Japanese TV dramas focused on certain disabilities. The implications of these findings are also discussed from the perspective of cultivation theory and the drench hypothesis.     

The accommodation and support needs of people with a mental illness: A process and framework for action

Abstract

This paper reports the results of a consumer-focused assessment of the accommodation and support needs of people with a mental illness living in a regional city. The study utilises a 'pathway to stability' approach to assess the phase-contingent accommodation and support needs of mental health consumers through interviews and focus groups with consumers, carers and service providers. The study identifies five broad phases of the life course impacted by mental illness—beginnings, long-term needs become clearer, instability as needs evolve, finding stability and ongoing. Five key issues—information, self-competence, comorbidity, coordination and flexibility were expanded upon in focus groups. Principles for planning future service delivery are identified. The implications of the findings and research methodology for social work practice and research are discussed.     

Social inclusion through employment: the marketisation of employment support for people with learning disabilities in the United Kingdom

Employment for people with learning difficulties is considered key to their social inclusion. This contradicts the perceived un-employability of people with learning difficulties that has been part of their social identities throughout their history hitherto. The national rate of employment for people with learning difficulties remains extremely low and has barely changed in the 20?years between 1990 and 2010. This paper investigates links between learning disabilities and employment, drawing on interview-based research. It analyses the quality of experience of the minority in employment to consider whether employment can serve the inclusive purpose expected of it.     

The mental health of young people aging out of care and entering adulthood: Exploring the evidence from England and France

This paper explores the research evidence from England and France on the mental health of young people aging out of care and into adulthood. It represents the first comparative review based on the evidence from these two countries. Set in the legal, policy and service framework for both countries, it reviews evidence on the mental health of young people in the general population, young people living in care, young people aging out of care, and young adults. It shows: the high levels of psychological adversity of young people entering care; the high rates of mental health problems of young people in care compared with the general population of young people; the increased risk of mental and physical problems at the time of aging out of care, and the general improvement in longer-term outcomes for young adults, although some continue to have serious mental health problems. In conclusion, it suggests that interventions across the life course of young people are needed.     

Staff characteristics and the exclusion of persons with disabilities: evidence from the microfinance industry in Uganda

This study uses survey data from the microfinance industry in Uganda to investigate whether there are differences among industry staff members in beliefs and views regarding persons with disabilities. For several of the questions, various staff sub-groups respond significantly differently. A recurring result is that staff members who have a relative with disabilities often express views that differ from the views of other staff members. Moreover, we find significant differences related to the age of the staff members. For instance, younger staff members are more positive and optimistic regarding the potential to reach more clients with disabilities. The employment position of the individual staff member also appears to be relevant: credit officers are relatively more likely (than other staff types) to indicate that discrimination could be a problem in the microfinance industry. Interestingly, we do not observe any differences in views and beliefs that are related to staff member gender.