Parental participation in the habilitation process--evaluation from a user perspective

AIM: To develop a national instrument for evaluation of parental participation: (1) to obtain a functional measure of quality from a user perspective; (2) as part of quality development in child habilitation services departments; (3) to create common grounds for the evaluation of important aspects of the habilitation process based on the opinions of users and care professionals; (4) to enable evaluation of individual service departments from a more general viewpoint and to highlight areas for improvement; and (5) to enable comparisons of individual service departments in the future against those of others via benchmarking. METHOD: The Measurement of Processes of Care (MPOC) was deemed to be the method that corresponded most closely with these formulated aims. A shortened version, MPOC 20, had already been produced and was awaiting publication. This shortened version measures the same important aspects of habilitation as the original MPOC. It also has a new scale, with verbal clarification for each step. This makes it more user friendly, as the results are easier to interpret. MPOC 20 was modified to become MPOC 28. This questionnaire was sent out in 11 of 26 counties in Sweden. The target group for the questionnaires was families with children up to 18 years of age who had been in contact with a habilitation services department for at least 1 year. The sample group comprised 4013 randomly selected families. A total of 3391 (84.5%) returned the questionnaire, and 2458 (61%) had responded to the questions. RESULTS: Twelve particular questions that can be regarded as fundamental to the habilitation processes emerged from the questionnaire in the regression analysis. These are measures of good quality in the habilitation process as perceived by the parents and are important in their overall satisfaction with habilitation services. Apart from the specific information category, these questions represented all the factors, i.e. enabling/partnership, general information, co-ordinated/comprehensive care and respectful/supportive care. CONCLUSION: MPOC 28 can be useful as an analytical tool for comparisons over time and for measuring changes in the way in which parents rank the various question areas linked to their overall level of satisfaction with the habilitation services in general.     

Co‐production of community mental health services: Organising the interplay between public services and civil society in Denmark

Co‐production involves knowledge and skills based on both lived experiences of citizens and professionally training of staff. In Europe, co‐production is viewed as an essential tool for meeting the demographic, political and economic challenges of welfare states. However, co‐production is facing challenges because public services and civil society are rooted in two very different logics. These challenges are typically encountered by provider organisations and their staff who must convert policies and strategies into practice. Denmark is a welfare state with a strong public services sector and a relatively low involvement of volunteers. The aim of this study was to investigate how provider organisations and their staff navigate between the two logics. The present analysis is a critical case study of two municipalities selected from seven participating municipalities, for their maximum diversity. The study setting was the Community Families programme, which aim to support the social network of mental health users by offering regular contact with selected private families/individuals. The task of the municipalities was to initiate and support Community Families. The analysis built on qualitative data generated at the organisational level in the seven participating municipalities. Within the two “case study” municipalities, qualitative interviews were conducted with front‐line co‐ordinators (six) and line managers (two). The interviews were recorded, transcribed verbatim and coded using the software program NVivo. The results confirm the central role played by staff and identify a close interplay between public services and civil society logics as essential for the organisation of co‐production. Corresponding objectives, activities and collaborative relations of provider organisations are keys for facilitating the co‐productive practice of individual staff. Organised in this way, co‐production can succeed even in a mental health setting associated with social stigma and in a welfare state dominated by public services.     

Youth with disabilities' perspectives of the environment and participation: a qualitative meta-synthesis

Meta-syntheses can enhance our knowledge regarding the impact of the environment on the participation of youth with disabilities and generate theoretical frameworks to inform policy and best practices. The purpose of this study was to describe school-aged youth with disabilities' perspectives regarding the impact of the environment and modifications on their participation. A meta-synthesis systematically integrates qualitative evidence from multiple studies. Six databases were searched and 1287 citations reviewed for inclusion by two independent raters; 15 qualitative articles were selected for inclusion. Two independent reviewers evaluated the quality of each study and coded the results section. Patterns between codes within and across articles were examined using a constant comparative approach. Environments may be more or less inclusive for youth with disabilities depending upon others' understanding of individual abilities and needs, youth involvement in decisions about accommodations, and quality of services and policies. Youth implemented strategies to negotiate environmental barriers and appraised the quality of their participation based on the extent to which they engaged alongside peers. This meta-synthesis generated a framework illustrating the relationship between the environment, modifications and participation, and provided a conceptualization of participation grounded in the lived experiences of youth with disabilities. Findings reveal gaps in current knowledge and highlight the importance of involving youth with disabilities in decision making.     

Crossing the organisational divide: family support services

The 1989 Children Act has consolidated and in some cases considerably extended the duties and responsibilities of social services departments. A major departure from earlier approaches is a central and explicit focus on the need for family support work, which is now to be undertaken within a broader framework than in the 1963 and 1980 legislation. In addition to the emphasis on providing services for children in their own families, there are new requirements for local authorities to work in partnership with voluntary agencies and other key statutory organisations, particularly health authorities and trusts. The 1989 Act needs to be reviewed in the context of parallel legislation, especially the NHS and Community Care Act (1990) which puts new emphasis on the process of planning, through the mandatory requirement for community care plans. Children's services plans are comparable although without mandatory requirement. A picture is slowly emerging of the extent to which social services departments, and health authorities and trusts are collaborating to plan and provide services. This paper outlines the new legislative framework; reviews the evidence available from the national study of the implementation of Section 17 of the Children Act (the ‘children in need’ clauses) on social services and health planning activities; reviews the SSI (1994) survey on children's service plans, providing a case example of policy and practice in one local authority; and assesses the progress made so far.     

Matching short break services for children with learning disabilities to family needs and preferences

Short breaks or respite care is a much-valued service by families and the demand for it is likely to exceed supply. It is all the more imperative that the services provided are matched to the needs and preferences of families. A census was undertaken within one Health and Social Services Board in Northern Ireland of families who received short break services for their child with disabilities during a 12-month period. Information was also collected on pertinent child and family characteristics. This enabled profiles to be drawn up of the recipients of six types of short-term breaks: (1) hospital-based overnight care; (2) overnight stays in a residential home; (3) domiciliary service in the family home; (4) breaks provided in another family home; (5) residential holidays; and (6) breaks provided through leisure schemes organized after-school or during holidays. A second study entailed interviews with families who were resident in one area served by a Health and Social Service Trust regarding their usage and preferences for each type of service noted above. This too identified variations in parental preferences and usage. This information gathered should assist commissioners in developing cost-beneficial short break services although further research is needed to validate the possible predictors for each service.     

Implications of a model of stress and coping for services to families of young disabled children

Summary Much recent research on families bringing up a disabled child has explored their coping strategies to deal with stress. The major findings are reviewed, and possible implications for the structure and content of service delivery suggested. The paper emphasizes the importance of social support networks, including the relationship between the mother and father, and of quality services in enhancing parental adaptation.     

Involving disabled and chronically ill children and young people in health service development

AIM: To investigate the extent and nature of involvement of physically disabled or chronically ill children and young people in local health service development. METHODS: A postal survey of all health authorities (n = 99) and NHS Trusts (n = 410) in England. RESULTS: Seventy-six per cent of health authorities and 59% of Trusts responded. Twenty-seven initiatives involving chronically ill or disabled children and young people in consultation regarding service development were identified. Over half of these were carried out in partnership between health services and other agencies, usually local authorities and/or voluntary organizations. A variety of methods was used for consultation, including child-friendly methods such as drawing, drama and making a video. Seventeen initiatives reported that children's involvement had resulted in service changes, but only 11 went beyond consultation to involve children and young people in decision making about service development. Only a third of the organizations had someone with designated responsibility for children's involvement. DISCUSSION: The involvement of this group of children and young people in service development in the NHS is at an early stage. The failure of policy documents on user involvement to identify children and young people as a group for whom methods of consultation need to be developed, and the lack of people with designated responsibility for developing children's involvement may be a reason for slow progress in this area. The initiatives identified show that such involvement is possible and can have a positive impact on services.     

上海金山工业区残疾人“1+1+1”家庭医生签约服务效果评价

目的 了解上海市金山工业区家庭医生的康复服务能力情况以及“1+1+1”家庭医生签约服务后残疾人机体功能改善、满意度、医疗费用支出情况,为后续精细化干预提供支持。 方法 通过自拟问卷于2016年8－10月和2017年8－10月调查金山工业区14名家庭医生基本情况及掌握康复服务技能种类等以及733名残疾人的基本人口学信息、残疾特征信息和机体功能改善情况、满意度情况和医疗支出情况等。 结果 14名家庭医生年龄集中在20~50岁,均具有多种康复服务技能,能为残疾人提供个性化的“1+1+1”签约服务。733名残疾人男女性人数比为1.08:1,肢体残疾人数最多,为334人(45.57%),残疾等级中四级残疾人数最多,共342人(46.66%)。“1+1+1” 家庭医生签约上门服务人数和康复治疗人数较家庭医生制团队服务分别增加130人和312人。接受“1+1+1”家庭医生签约服务后,186名(25.38%)残疾人机体功能改善,47名(6.41%)残疾人机体功能恢复。签约残疾人满意度有一定提升,满意和非常满意人数总和由签约前的585人(79.81%)升至签约后的714人(97.41%)。签约残疾人医疗费用则呈现下降趋势,同比下降22.82%。 结论 “1+1+1”家庭医生签约服务能够提升残疾人对康复服务的满意度,改善残疾人机体功能,降低残疾人医疗支出。     

'Providing more scaffolding': parenting a child with developmental co-ordination disorder, a hidden disability

Background Few studies exist reporting the experiences of parents of children with developmental co-ordination disorder (DCD) a common disorder with a prevalence of 1.8-6%. DCD is characterized by poor motor co-ordination, not caused by a general medical condition, but significantly affecting daily living. This study explores the experiences of parents living with a child with DCD in obtaining a diagnosis; the impact of the diagnosis on parenting and the effect on parents as individuals. Methods Semi-structured interviews with a purposive sample of 15 parents of children with DCD data were recorded and then transcribed. Data were analysed using a coding framework and themes identified similar to Attride-Stirling (2001, Qualitative Research, 1, 385-405). Findings DCD was an all-encompassing condition that dominated all aspects of family life and was a 'hidden disability'. Parents were frustrated by the poor knowledge and expertise of health and education professionals working with children with DCD and the lack of good quality accessible information and support services. Parents became by default the 'expert' on DCD for schools and other services; they were advocates for DCD and their own children. They provided additional support for longer to their child with DCD and had concerns for their future. Parenting a child with DCD was frustrating, exhausting, guilt-ridden as well as rewarding. There was little available time to provide for the needs of other family members. Conclusion A better-trained, knowledgeable workforce would redress the balance for families with DCD by providing better information, support and advocacy freeing parents to parent their families.     

Assessing services, supports and costs for young families under stress

BACKGROUND: Despite the attention paid to family support services in legislation and guidance, there is still relatively little evidence on which to base the development of effective services, and even less on the costs and cost-effectiveness of different models of support. METHODS: The study designed and examined the practical feasibility of a methodology for collecting service use data and other information on families. Unit costs of services were calculated and data were collected in interviews with 177 young families under stress in Northern Ireland and South-East England. Service use patterns and costs were analysed. RESULTS: Comparisons showed that families made greater use than the general population of many services. There were marked variations within the sample in the patterns of service use and costs, to some extent reflecting differences in the needs of the young families. DISCUSSION: The methods developed for collecting service use data, calculating unit costs and estimating costs for families were feasible.     

Constraints and facilitators to participation in physical activity in teenagers with Developmental Co‐ordination Disorder: an exploratory interview study

Background Despite their movement difficulties, youngsters with Developmental Co‐ordination Disorder (DCD) generally have sufficient capability for physical activity. However, they tend to be less physically active and less physically fit than their well co‐ordinated age peers. The aim of this study was to use qualitative research methods to understand which factors constrain and facilitate participation in physical activity in teenagers with DCD, in order to help inform future health promotion programmes. Method Semi‐structured interviews were conducted with eight teenagers with DCD (aged 13–15) and their parents. The interviews focused on how much physical activity was typically undertaken by the child and the perceived constraints and facilitators to being physically active. Interviews were transcribed and subjected to categorical‐content analysis. Results Half of the children and all but one of the parents reported that the children did little physical activity. Although most children disliked competitive team games, they reported many physical activities that they did enjoy and they reported wanting to be more physically active. Perceived internal constraints to participation included poor motor skill, lack of motivation and reports of fatiguing easily. Perceived external constraints included difficulty travelling to activities, negative comments from peers and teachers' lack of understanding of DCD. Conclusions Reports of low levels of physical activity support previous literature and are a cause for concern for this group. The teenagers expressed the desire to be more active, yet the interviews revealed both personal and environmental constraints to engagement in physical activity. It is clear that these factors interact in a dynamic way and that teachers, schools and communities play an important role in creating a motivational environment for youngsters with DCD to engage in physical activity and learn to maintain an active lifestyle as they move into adulthood.     

Ethnicity and adolescent mothers’ benefit from participation in home‐visitation services

Abstract: Early home visitation has been reported as one promising method of supporting adolescent mothers who are at risk for poor child and family outcomes. This study compared benefits of visitation for Hispanic and White non‐Hispanic adolescent mothers receiving home visits during their firstborn child's first year. Although positive benefits were identified for both groups of mothers, Hispanic mothers showed greater benefit. Explanations for these differential outcomes and related implications for practice are explored.     

School and family participation in a longitudinal study of tobacco use: some methodological notes

School-based recruitment of youth for a research purpose is problematic, as one has to deal with multiple ethical and practical constraints. This study reports on predictors of schools' and families' participation in a longitudinal study of tobacco use among 11-year-old children. School size, but not tobacco policy, was linked to participation. High parental education and average social status in the residence area were associated with parental consent. Given the social background, prevalence of parental tobacco use was close to the expected. Compliance of responsible adults in youth research cannot be predicted on the basis of simple behavioural models.     

Evaluating community participation: A comparison of participatory approaches in the planning and implementation of new primary health‐care services in northern Australia

Community participation is increasingly seen as a prerequisite for more acceptable and sustainable health services. It is difficult to evaluate the extent of participation in health planning and implementation of services, and there are limited tools available to assist in evaluating such processes. Our paper reports on community participation as part of the implementation of 2 primary health programs in regional north Queensland, Australia. We define community participation as collective involvement of people, including consultation, from a community of place or interest in aspects of health service development. We pragmatically evaluate and compare the extent of participation by using a framework developed by Rifkin and colleagues in 1988 and subsequently refined. Data collected from the implementation of each program were analyzed and ranked on a spidergram against 5 process indicators: needs assessment, leadership, resource mobilization, management, and organization. Community participation was found to vary across the programs but was most extensive in both programs in identifying need and potential solutions. Both programs demonstrated high levels of integration of the implementation of health programs with preexisting community structures. Involving local communities in genuine opportunities in managing the programs and mobilizing resources was more challenging. Key differences emerged in the people involved in the programs, the settings and frameworks used to facilitate implementation. We conclude that Rifkin's process indicators are a useful starting point for assessing community participation, particularly for health planners who are required to include participatory approaches when planning and implementing services. We suggest areas that require further consideration.