Access to health and therapy services for families of children with disabilities in China

Abstract

Purpose: China has more than five million children with disabilities. According to national statistics, most of them (63%) do not receive the health and therapy services they need, which threatens their lives, wellbeing and opportunities in adult life. Method: The article applies mixed methods (secondary data analysis and case study interviews) to analyse the efforts of families of children with disabilities to obtain health and therapy services to understand why most children do not receive the support they need. Results: The findings are that reasons include poor information, shortage of services and affordability. While these reasons are common across China, the local context, such as resources and social policy implementation, affect the degree to which families obtain the support they need. Conclusions: These circumstances will not change until local communities and government policies at all levels prioritise policy implementation to fulfil the rights of children with disabilities in China.

• Implications for Rehabilitation

• Most children with disabilities in China do not receive the health and therapy support they need.

• Access to support is hampered by poor information, shortage of services and affordability, which are accentuated by local resources and local policy implementation.

• Central and provincial government resource allocation and local government policy commitment to implementation are critical to children receiving the support they need in their local communities.

     

Use of health services by insurance status among children with asthma

OBJECTIVES: It is well known that asthmatic children receiving Medicaid use the emergency department (ED) more frequently than otherwise-insured asthmatic children. However, the extent to which this difference is attributable to provider characteristics, medication use, access to primary care, and symptomatology is poorly understood. These factors were explored as independent predictors of health care utilization. METHODS: Baseline data from a prospective cohort study of childhood asthma severity were used. Subjects were recruited from seven New England hospitals. Home interviews collected data on monthly symptoms, health care visits, insurance status, as well as sociodemographics and asthma-related risk factors (n = 804). Characteristics of providers' practices, board certifications, and asthma specialty were obtained from Folio's Medical Dictionaries for Connecticut and Massachusetts. RESULTS: After adjusting for frequency of asthma-related primary care visits, primary provider practice type, use of asthma specialist, age, gender, medication use, and symptomatology, Medicaid children still used the ED more frequently for asthma services than privately insured children (RR, 1.7; 95% CI, 1.1, 2.5). In general, race/ethnicity did not modify the relationship between insurance status and health care use, except that black children receiving Medicaid were 90% (95% CI, 0.0, 0.7) less likely to have had > or = 3 routine primary care visits for asthma in the previous year than black privately insured children. White children receiving Medicaid were 2.5 (95% CI, 1.0, 6.9) times more likely to use the ED for asthma than privately insured white children. CONCLUSIONS: The results suggest that enabling, structural, and need factors do not necessarily explain observed differences in pediatric asthma health care use by insurance status. Future investigation must explore other explanatory factors such as maternal attitudes and beliefs and patient-provider communication.     

A joint health and social services initiative for children with disabilities

The children's disability team in Cambridge provides an integrated health and social care service for children with complex learning and physical disabilities and their families. The team uses a multidisciplinary and multi-agency teamwork approach to care provision. The effectiveness of the team was evaluated using a cooperative review of its functions, in which all the 'subjects' were active participants in defining and delivering the evaluation. This was combined with individual questionnaires regarding the team's perceived strengths and weaknesses. Particular implications for training and supervision emerged from the findings. This article discusses the ways in which the team has successfully refined its practice of collaborative working in a developmental way between 1992-1998.     

Minor illness in children: parents' views and use of health services

Consultation rates in young children are high, and parents and carers of young children have reported feeling disempowered and anxious when their children display common symptoms. Parents have stated that more information would help them manage these symptoms appropriately. This focus group study explored how parents and carers of young children feel when their child displays common symptoms, what information they need to assist them in appropriate management, and to determine if they would value an educational intervention on the management of common symptoms. Findings showed that many parents sought help from families and friends following negative experiences of seeking advice from health professionals and many were wary of the information presented in health information leaflets produced by pharmaceutical companies. Parents and carers who took part in this study stated that they would value an educational intervention that would help them to appropriately manage common symptoms. They wanted to receive the information through interactive group sessions, led by a health visitor, with the inclusion of simple and non-product biased "take home" materials.     

Consideration of out-of-home placement among Israeli Jewish and Arab parents of children with disabilities

This article is based on a secondary analysis of a random sample of 512 Israeli parents of children with disabilities (ages 3-17) regarding their consideration of out-of-home placement. Major findings showed that Arab parents reported greater levels of personal and family burden compared to Jewish parents. Despite that fact, Arab parents rarely considered out-of-home placement. In addition, parents whose children utilized more services reported a greater burden of care than those who utilized fewer services. Findings are discussed with respect to future research and policy implications.     

Collaboration between mental health and employment services to support employment of individuals with mental disorders

Purpose: The aim of this study was to investigate the extent of the interdisciplinary collaboration between mental health (MHS) professionals and social security professionals (SSI), their perceptions of this interdisciplinary collaboration and whether these perceptions differed between professionals of the two organizations. Method: We obtained data from mental health professionals and social security professionals in the context of a national agreement between MHS and SSI to improve the collaboration between MHS professionals and SSI professionals in the support of individuals with mental disorders to improve work outcome of these individuals. Results: Mental health professionals as well as SSI professionals reported a moderate level of interdisciplinary collaboration, which does not seem to be affected by demographic variables, such as age, gender, profession and region. When professionals collaborated in a structural way they were more positive regarding their interdisciplinary collaboration with professionals of the other organization than professionals that collaborated in an ad hoc manner. Conclusions: Interdisciplinary collaboration was perceived as moderate by collaborating mental health professionals and social security professionals. In order to improve the collaboration between MHS and SSI on a local microlevel, organizations need to facilitate more structural collaboration between the professionals.

• Implications for Rehabilitation

• Collaborating mental health professionals and social security professionals perceived their interdisciplinary collaboration as moderate.

• In order to improve the collaboration between mental health services (MHS) and vocational rehabilitation services on a local microlevel, organizations need to facilitate more structural collaboration between the professionals.

• Integrated services with the participation of MHS as well as vocational rehabilitation services, e.g. to share client information and to refer clients to each other, need to be developed.

• A national agreement between MHS and vocational rehabilitation services is a good starting point to improve collaboration between both the sectors.

     

Developing resilient children and families when parents have mental illness: a family-focused approach

There is substantial evidence supporting the need for effective intervention for children and families living with parental mental illness. However, translation of this knowledge into mental health workforce practice remains variable, with a range of clinical practices and models of care evident. Nurses, who constitute the majority of the mental health workforce, are in prime positions to support children and families and provide preventative measures, identify those at risk, and intervene early. In this paper, we provide a framework for practice for nurses working with consumer parents. We contend that traditional models of nursing practice concentrating on the consumer are insufficient in meeting the needs of children and families living with parental mental illness. A focus on families needs to be core business for mental health nurses. A family-focused approach can be used to prevent problems for children and their families, and identify their strengths as well as vulnerabilities. Family-focused care is a useful framework from which to support families and address the challenges that might arise from parental mental illness, and to build individual and family resilience.     

精神发育迟滞儿童家属心理健康状况调查

目的 探讨精神发育迟滞儿童家属的心理健康状况,为制定有效的心理干预措施提供依据.方法 将56例精神发育迟滞儿童的父母设为研究组,抽取同期50名健康儿童的父母设为对照组,采用症状自评量表对两组进行测评分析.结果 研究组症状自评量表评分,除恐怖因子分与对照组差异无显著性外,其他因子分均显著高于对照组(P＜0.05);研究组母亲症状自评量表躯体化、抑郁、焦虑、恐怖因子分显著高于父亲(P＜0.05),强迫、敌对、偏执因子分显著低于父亲(P＜0.05或0.01).结论 精神发育迟滞儿童对其家属的心理健康有负性影响,对家属积极地开展有针对性的心理干预,有助于缓解压力,改善心理健康状况.     

Beyond the disability: recognizing mental health issues among persons with intellectual and developmental disabilities

Current societal changes mean increased possibilities for individuals with I/DD to participate in work, family, and community life. However, as individuals with I/DD have at least the same prevalence of mental health disorders as the general population and possibly an increased susceptibility to some mental health disorders, their ability to participate in work, housing, and social opportunities is hampered. It is important to improve nursing education about the specific issues of mental health care of individuals with I/DD. An important area for nursing research and education are improved clinical and practice guidelines. Research on medications and other therapies in mental health care of individuals with I/DD is limited and has methodological limitations. Nursing education and training are holistic, and nursing has the potential of positive impact on practice, education, and research that will improve the mental health care of individuals with I/DD.     

Utilization of mental health services among rural elderly

Rural elders are an undeserved and vulnerable population with compromised access to health and human services leading to premature institutionalization. Even though elders living in rural areas have psychiatric illnesses that would prompt them to use mental health services, their use of these services remains low. This study developed predictive models of psychiatric hospitalization, use of mental health services, and use of crisis intervention by rural elders participating in an outreach case-management program. A combination of demographic, health status, and organizational variables were used in stepwise multiple regression. Being married and having supplemental insurance in addition to Medicare predicted 23% of the variance for utilization of psychiatric hospitalization. Only one variable, Medicaid, predicted 14% of the variance for use of mental health services. Type of caregiver, marital status, household composition, and Medicaid insurance accounted for 23% of the variance in utilization of crisis intervention by rural elders. Overall, the two variables that most likely predicted use of psychiatric mental health services were marital status and type of insurance.     

Computer-mediated support group use among parents of children with cancer--an exploratory study

This study describes aspects of computer group use as a vehicle for self-help by parents of children with cancer. Using an electronic mail system, data were gathered from 73 parents who had participated in online support groups. Most participants were Caucasian, well educated, and reported annual incomes of more than $50,000. The perceived benefits of the computer group involvement were getting information, sharing experiences, receiving general support, venting feelings, gaining accessibility, and using writing. The disadvantages included "noise," negative emotions, large volume of mail, and lack of physical contact and proximity. The findings indicate that computer group use is more common in parents with relatively high socioeconomic status. There are certain advantages and disadvantages of computer group use that need to be recognized and addressed by health professionals and users.     

Parent-to-parent support: a critical component of health care services for families.

Families of children with chronic medical conditions or disabilities face many unique difficulties. It is often necessary for them to assimilate technical medical information and participate in important decisions regarding their children's care before they have had time to adjust to their children's condition. Health care providers are not always available to help parents learn how to function in their dramatically changed roles. To adjust to their new parenting roles and work through feelings of confusion, denial, anxiety, guilt, anger, and depression, parents of children with special health care needs need opportunities to fully vent feelings, and to experience the grieving processes in their own way and at their own pace, in a nonthreatening, nonjudgmental environment. An informal support network is a powerful tool for accomplishing these tasks, for teaching day-to-day coping skills, and for supporting the establishment of new value systems that incorporate families' unique needs. The literature on family support documents ways in which parents of children with special health care needs are particularly qualified to help each other. This article briefly describes the philosophy of parent-to-parent support, its unique contributions in the health care setting, and the ways that health care providers can assist in creating an environment in which parents and professionals can work together more effectively.     

健康教育对儿童少年精神病患儿父母心理健康状况的影响

目的探讨健康教育对儿童少年精神病患儿父母心理健康状况的影响。方法将96例儿童少年精神科住院患儿的父母,在接受常规健康教育的基础上,施以团体的父母健康教育,观察6周。于健康教育前后采用症状自评量表评定其心理健康状况,并与国内常模进行对比分析。结果人组患儿父母健康教育前症状自评量表总分及躯体化、强迫症状、抑郁、焦虑、恐怖、偏执、精神病性因子分均显著高于国内常模（P〈0．05或0．01）;健康教育后症状自评量表总分及强迫症状、抑郁、焦虑、恐怖、偏执、精神病性因子分均较健康教育前有显著性下降（P〈0．05或0．01）;且总分及各因子分与国内常模比较均无显著性差异（P〉0．05）。结论健康教育能有效提高儿童少年精神科住院患儿父母的心理健康水平。     

Parent-to-parent counseling - a gateway for developing positive mental health for the parents of children that have cerebral palsy with multiple disabilities

Parent-to-parent counseling involves the interaction of two groups of parents, senior and junior, whose children suffer from cerebral palsy with multiple disabilities. The main theme of the interaction is the experience accumulated concerning the progress of the treatment of their child, the understanding of parental responsibility, the scope of rehabilitation, and the change of attitude towards their disabled children during the treatment, management and rehabilitation process, under the supervision of a psychologist or rehabilitation psychologist. The aim of the study is an attempt to minimize the gap between caregivers and the affected child through an exchange of knowledge and experience within the therapeutic group interactions. The parents who have been attending the outpatient department at the National Institute for the Orthopaedically Handicapped for a couple of months take a leading role in this interaction program and newcomers benefit through empathetically realizing the therapeutic aspects, and, simultaneously, releasing their internal tensions and anxiety regarding the rehabilitation of their disabled children. The study has been conducted on 50 Bengali speaking parents, who have attended the parent-to-parent interaction program. They were all from rural, urban and city areas within a 150-km radius of the place of study in Kolkata, West Bengal, situated in the eastern part of India. They were all from lower-income group (60%) and middle-income group (40%) families. Their mean educational qualification was XII standard. All the cases were selected from the mild to moderate range of child disability. All the participants indicated the effectiveness of these therapeutic interaction programs, with an average of 80% of parents favoring this program and acknowledging it as most effective.     

Staff responses to self-harm by children and young people in mental health inpatient settings: Experiences and views of children and young people,parents and staff

This study aimed to understand the views of children and young people (CYP), parents and staff on how staff should respond to incidents of self-harm carried out by CYP in mental health inpatient settings. Semi-structured interviews were conducted with CYP (n = 6), parents (n = 5) and mental health professionals (n = 6) with experience of this issue. Data were analysed using reflexive thematic analysis. Two superordinate themes were identified: (1) The threshold for intervening; and (2) Interpersonal attributes of staff. There was general agreement among participants about the interpersonal skills that staff should possess to work safely and effectively with this population. There was disagreement between staff and parent participants about the appropriate threshold for using restrictive interventions to manage incidents of self-harm for this group. Our findings suggest that further work is needed to develop effective approaches for addressing self-harm in this population which are considered acceptable to all key stakeholders. The results of this study could be used to inform future intervention development.