Predictors of Support Service Interest and Participation by Families of Children with Spina Bifida

Nurses who work with families of children with spina bifida know that parents need psychosocial support, but may not know whom to target with limited support service resources. The purpose of this study was to identify predictors of both support service interest and participation. The caretakers of 60 children with spina bifida (myelomeningocele), 1 to 17 years of age, attending an interdisciplinary outpatient spina bifida clinic, were interviewed. Potential predictors of service interest and participation included socioeconomic status (SES), social support, parent demographics, and severity of the child's impairment. Service interest was measured using a survey that quantified the amount of interest in supportive and recreational services. Families were then categorized as participants versus nonparticipants based on whether they actually requested and utilized available support services. Parents whose children had more medical problems reported higher interest in both recreational and supportive parent‐to‐parent services. Although earlier research suggests that SES and distance from home affect stress and should be related to interest in support services, the correlational results of this study suggested no relationship between these variables and support service interest or participation. Closer examination indicated that there might be a nonlinear relationship, such that middle SES families were more interested than either upper or lower SES families, and were more likely to participate in available programs.     

Knowledge and use of community services among family caregivers of Alzheimer's disease patients

The number of people with dementia residing within the community is steadily increasing. Community services can alleviate the burdens experienced by families, but are used infrequently by families of dementia patients. Caregivers (N = 93) of dementia patients were surveyed regarding their knowledge and use of community services. The most frequently used services were family support groups and home health aides. Overall, service use was low despite high levels of perceived availability of services. Older and less educated caregivers had higher levels of uncertainty about service availability. Depressed caregivers were less likely to know about service availability. Implications for practice and research are presented.     

A survey of music therapy methods and their role in the treatment of early elementary school children with ADHD

Attention-Deficit Hyperactivity Disorder (ADHD) has recently been receiving more frequent attention in professional circles and in the press, and some sources would assert that its occurrence in the general population is consistently growing. Because music therapists often work with preschool and school-age children, it is likely that they will increasingly be treating children with a diagnosis of ADHD. However, there is little in the music therapy literature about music therapy treatment for ADHD. The purpose of this survey was to ascertain what music therapy methods are being used for children with an ADHD diagnosis, how effective this treatment is perceived to be, and the role that music therapy treatment plays in relation to other forms of treatment. Results of the survey indicated that music therapists often utilize a number of music therapy methods in the treatment of children with ADHD. They often address multiple types of goals, and treatment outcome is generally perceived to be favorable. Referrals for music therapy services are received from a number of different sources, although parents and teachers were indicated to be the most frequent referral sources. Most children with ADHD receiving music therapy services also receive other forms of treatment, with an overwhelming majority receiving medication. The implications of these results are discussed, and areas for continuing research into the use of music therapy with ADHD are identified.     

Children's accounts of attention-deficit/hyperactivity disorder

As a postmodern illness, attention-deficit/hyperactivity disorder (ADHD) is embedded in controversy, reflective of the cultural times in which we live. Within this debate, 2 perspectives, ADHD as myth and ADHD as behavioral disorder, are most frequently voiced. This article describes these 2 differing perspectives and reports qualitative data from 39 children and adolescents with a diagnosis of ADHD regarding their perceptions, meanings,and experiences of living with this disorder. None of the participants in this study denied that they had difficulties and many of the difficulties they described corresponded to DSM-IV-R criteria and the scientific literature. Given these discoveries, the continual debate about the authenticity of ADHD only further victimizes families who are in desperate need of services.     

Occupational therapy service use among people aging with multiple sclerosis

OBJECTIVE: We examined the use of occupational therapy services in a sample of people aging with multiple sclerosis (MS). METHOD: A total of 1,282 people with MS, ages 45 to 90, participated in telephone interviews to identify unmet health-related service needs. Occupational therapy was 1 of 22 services examined. Proportional odds models were used to examine factors associated with how recently services were used. RESULTS: Four hundred eighty-four participants (38.2%) had used occupational therapy services at some point since their diagnosis; 211 had used these services in the year before the interview. Recent users identified occupational therapy services as important to health and well-being. Satisfaction with services was high. Greater activity limitations and living in an urban or suburban area were associated with more recent use of occupational therapy services. CONCLUSION: The results raise questions about what constitutes appropriate levels of occupational therapy service use and how to ensure that these levels are achieved.     

Just Getting on with it: Exploring the Service Needs of Mothers Who Care for Young Children with Severe/Profound and Life‐Threatening Intellectual Disability

Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life‐limiting conditions. Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements. Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as ‘haphazard’ and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy. Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home‐based respite, which would offer them short breaks to rest or engage in part‐time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.     

Older Mothers Who Do Not Use Day Programs for Their Daughters and Sons with Mental Retardation

We have previously reported those mothers of offspring with mental retardation that do not use available day services differ in many important ways from mothers of offspring who use these services (Smith et al., 1994). The present study extends our earlier work by examining whether or not significant differences exist between two distinct subgroups among the mothers of offspring who are not presently using day services: those who never used day services (n = 37) and those who withdrew from use (n = 22). Findings suggest that the oldest mothers who never used day services for their offspring probably gave birth to their child when only institutional care was readily available. On the other hand, perceptions of the service system caused mothers in the group who withdrew their offspring to have increased sensitivity to inadequacy of programs and to feel greater need for additional services. Practices and policies to recruit these hard-to-reach families as clients are essential     

Assessment and Characteristics of Older Adults with Intellectual Disabilities Who are not Accessing Specialist Intellectual Disability Services

Background Individuals with intellectual disabilities (I.D.) who are not accessing any specialist services are a vulnerable group, especially with advancing age. In Ireland, the National Intellectual Disability Database (N.I.D.D.) records the current and future service needs of people with intellectual disabilities, as well as those individuals who are not in receipt of services. Methods This two‐part study firstly used the N.I.D.D. to look at the number and characteristics of those older individuals outside services. Following this, a questionnaire was developed to examine the contact and assessment procedures practised with people who are listed on the N.I.D.D. as not requiring any specialist service. Results Analysis of the database showed that 7.5% of people on the N.I.D.D. with moderate, severe or profound I.D., over the age of thirty and living at home with family were awaiting, or were not in receipt of specialist services. For these people not accessing any services, the questionnaire responses highlighted poor assessment practices including significant periods of time passing between contacts with the individual and limited contact regarding service planning. Conclusions Specialist services need to be more pro‐active in engaging vulnerable older individuals in services. A standardised approach needs to be developed in the assessment and monitoring of individuals and families refusing services.     

School nurses' perceptions of family-centered services: commitment and challenges.

Family-centered service is a service delivery model that recognizes the central role of families, builds on their strengths, and seeks to fully involve them in all aspects of their child's health, learning, and development. Family-centered service has been associated with positive outcomes in health and education and has been viewed as best practice. This study examined school nurses' perceptions of their work practices with families and the implementation of family-centered services in the school health setting. An established instrument, the Measure of Processes of Care for Service Providers, was used to survey a convenience sample of school nurses practicing in California. Quantitative and qualitative results indicated that school nurses value family-centered service and use the core elements regularly in their work with families. Qualitative data further illustrated school nurses' solid commitment to families even in the face of challenges such as high student-nurse ratios, lack of time, and limited support. Suggestions for overcoming these barriers include development of parent centers, employment of school social workers/case managers, and advocating for changes in legislation to support the hiring of more school nurses.     

Young children with respiratory problems and assistive technology needs: a nursing care perspective

An examination was conducted of the technology needs of 33 children with respiratory problems ages 0-5 years as part of a larger survey of persons with disabilities. Unmet technology needs were reported for these children in all areas of life functioning. Children's needs for assistive technology exceeded their usage of equipment and devices in two thirds of the identified areas of functioning. Technology needs were critical particularly in the areas of taking care of the home; using a telephone; using a computer; talking with others; and use of specialized cars, vans, and buses. It was reported for most children that evaluations preceded the provision of assistive technology, and that families were satisfied with technology services received. More than three fourths of the families reported not having had the opportunity to purchase technology on a credit plan, with two thirds of the families showing that such an option would have been helpful to them. Also, more than one half of the children could not try their technology before it was purchased. A need for more information about assistive technology and services was reported for more than one half of these children. Lack of transportation services were reported for most children, with families of almost two thirds of the children indicating travel exceeding 50 miles to receive technology and services. Implications for nurses involved in comprehensive service delivery to these children are discussed.     

Use and distribution of rehabilitation services: a register linkage study in one hospital district area in Finland

This study focuses on a large set of rehabilitation services used between 2004 and 2005 in one hospital district area in Finland. The rehabilitation system consists of several subsystems. This complex system is suggested to produce arbitrary rehabilitation services. Despite the criticisms against the system during decades, no attempts have been made to study the performance of the system as a whole. Register data from several subsystems were linked to study the use and characteristics of rehabilitation services and users. Data consisted of 10 153 persons. We analysed differences in rehabilitation service use between age and sex groups and municipalities. Totally, 5.4% of the population used rehabilitation services in the studied 2 years. Medical rehabilitation was the most common type, users' mean age was 52.6 years, and 52.2% were women. Remarkable differences were detected between municipalities in usage rates in all rehabilitation types. The size of the population in home municipality had a varying relation to utilization in different rehabilitation types. We found differences in the service use within age groups, sex or home municipality. This study cannot rule out the possibility that these differences indicated inequitable distribution of services or whether they are explained by different needs.     

Valuing Insect Pollination Services with Cost of Replacement

Value estimates of ecosystem goods and services are useful to justify the allocation of resources towards conservation, but inconclusive estimates risk unsustainable resource allocations. Here we present replacement costs as a more accurate value estimate of insect pollination as an ecosystem service, although this method could also be applied to other services. The importance of insect pollination to agriculture is unequivocal. However, whether this service is largely provided by wild pollinators (genuine ecosystem service) or managed pollinators (commercial service), and which of these requires immediate action amidst reports of pollinator decline, remains contested. If crop pollination is used to argue for biodiversity conservation, clear distinction should be made between values of managed- and wild pollination services. Current methods either under-estimate or over-estimate the pollination service value, and make use of criticised general insect and managed pollinator dependence factors. We apply the theoretical concept of ascribing a value to a service by calculating the cost to replace it, as a novel way of valuing wild and managed pollination services. Adjusted insect and managed pollinator dependence factors were used to estimate the cost of replacing insect- and managed pollination services for the Western Cape deciduous fruit industry of South Africa. Using pollen dusting and hand pollination as suitable replacements, we value pollination services significantly higher than current market prices for commercial pollination, although lower than traditional proportional estimates. The complexity associated with inclusive value estimation of pollination services required several defendable assumptions, but made estimates more inclusive than previous attempts. Consequently this study provides the basis for continued improvement in context specific pollination service value estimates.     

Characteristics of people living with HIV who use community-based services in Ontario, Canada: implications for service providers.

Community-based AIDS service organizations (CBAOs) direct services to multiple-needs people living with HIV/AIDS who are less likely to use mainstream health promotion services. As people live longer with HIV, the potential to enhance quality of life increases, yet little is known about who uses CBAOs or how this use affects other health and social services. This study of people living with AIDS in Ontario, Canada (n = 297) examined the demographic and health-related characteristics of people with AIDS who do and do not use CBAOs and their patterns of mainstream service utilization. It found that users of CBAOs were significantly less healthy, less able to sustain normal activities, and more often depressed. They reported physical disabilities significantly more often. Their quality of life was also lower along certain dimensions. They were significantly poorer and more reliant on government income supports. They consumed significantly more nonhospital health and social services and had significantly higher out-of-pocket costs. These results suggest CBAOs are being accessed appropriately by those most vulnerable. In an effort to strengthen CBAO capacity to recognize and address depression and physical health problems prevalent among their clients, links to other mainstream health promotion and social services is recommended.     

Processes of Mental Health Service Use by Adolescents with Depression

PURPOSE: To begin development of a substantive theory of the processes of mental health service use by adolescents who are depressed and by their families. DESIGN: Grounded theory. METHODS: Open-ended interviews were conducted with 52 young adults who were depressed as adolescents, four of their parents, and eight professionals who work with adolescents who are depressed. The constant comparison method was used to analyze the data. FINDINGS: Adolescents who are depressed and their families perceived several "treatment pitfalls" associated with formal mental health services: (a) "They'll (mental health clinicians) think I'm crazy," (b) "They'll tell my business," and (c) "They won't have a clue." The adolescents and their families interacted with the mental health care providers by engaging in the psychosocial process of "venturing through the system," that is, proceeding despite possible dangers and risks by steering clear, holding back, and letting it take hold. CONCLUSIONS: Mental health service use by adolescents with depression involved complex and fluid interactional processes among the depressed adolescents, their parents or caretakers, and mental health care providers. Strategies are needed to avoid creating the pitfalls that concern adolescents and their families.     

Practice development for midwifery education: An innovative way forward

Within workplaces there can be several different cultures operating, and it is widely recognised that this occurs in health services. Midwifery and maternity care has, and continues to face many challenges as services continually change and develop to meet the needs of women and their families. To help meet these challenges a practice development initiative was undertaken within a large maternity service in Australia to improve the learning and workplace culture. This service consisted of four separate units providing care for women and their families in the antenatal, birthing, postnatal and neonatal periods. The coming together of these four units as a service began with the creation of a shared values statement which was adopted by all midwifery staff. To obtain evidence of the current workplace, observations of practice, the review of women's stories, and audits of clinical data were undertaken. Nine midwives were trained and supported to facilitate critical discussions of the data. These critical discussions, reflections and analysis of the data, led to the identification of four domains or key areas the staff prioritised for change. This led to practice development groups being formed within the maternity service, who developed collaborative and creative ways of thinking about the issues or problems identified. This paper highlights how the processes of practice development were implemented to improve one of these domains "the learning and workplace culture", especially in relation to educational information and resources for women, their families and staff. The journey began over three years ago and continues to evolve.     

Providing a seamless service for children with life-limiting illness: experiences and recommendations of professional staff at the Diana Princess of Wales Children's Community Service

The Diana Children's Community Teams (DCCTs), a new nurse-led service funded by the Department of Health, were established to provide care in the community as an alternative to hospital for children with life-threatening/life-limiting illnesses and their families. This paper presents selected findings highlighting the professionals' experiences which formed part of the evaluation of the Diana, Princess of Wales Children's Community Service in Leicester, Leicestershire and Rutland. The Diana Service in Leicestershire attempts to encompass both parental empowerment and interagency collaboration. By working in partnership with the children and their families, the team provides an integrated and multiprofessional community-based service. This paper particularly concentrates on the perceptions and recommendations from the Diana team itself. Three independently managed Community Nursing Services existed in Leicestershire prior to the Diana teams; a Paediatric Macmillan Service, a Children's Community Nursing Service and a Respite Service. The Leicestershire DCCT integrated the three nursing services into a single team. This team has moved away from a traditional uniprofessional service structure by encompassing a wider team of multiprofessionals, including a cultural link worker, an occupational therapist, a physiotherapist, a play specialist and a team of trained counsellors, working in partnership to provide a quality service for families. * The evaluation, which used a longitudinal multimethod process analysis based on an action research framework, suggests that children with complex and life-limiting illnesses and their families benefit greatly from an effective seamless service. This paper recommends a framework of care that may be relevant to other teams of children's community services across the country. This service has been judged by the impact it has had on the families who use it and the professionals employed within it.     

Formal service utilization by the frail elderly at home during the last 6 months of life

Abstract The purpose of this study was to examine how the use of medical/social services by elderly persons changes over time as they approach death. This research was conducted at a public visiting nursing office in Tokyo. Nursing records of all elderly persons, those who died at home or died within 1 week of hospital admission between April 1993 and June 1997 were reviewed. The percent of patients using each type of medical or social service was calculated for three time periods before death: more than 6 months, 1–6 months and within 1 month. This retrospective examination clearly demonstrates a shift in specific service usage by elderly persons during the months prior to death. As terminal illness becomes more advanced, the use of medical services increases more remarkably than the use of social services. The increase in nurse visits is far greater than that of home aid visits. Visiting nurses should demonstrate their skills of care appropriate to the changeable conditions of the elderly and their families in the terminal stage.     

Propensity score matching: an illustrative analysis of dose response

BACKGROUND: Health services researchers are often interested in the effect of a treatment or a service in situations in which randomization is difficult or impossible. One useful alternative involves propensity score methods, a means for matching members of different groups based on a range of characteristics. Under certain assumptions, comparisons of the matched groups reveal the impact of the treatment of interest. OBJECTIVES: This article reviews propensity score methods and illustrates their use in an analysis of dose response, the relationship between the volume of services received, and treatment outcomes. In mental health policy, this question is central to key issues such as parity. RESEARCH DESIGN: Data for the illustrative analysis are taken from a well-known study of children's mental health services. This analysis estimates the impact of outpatient therapy based on comparisons of individuals receiving different treatment doses. Those comparisons are adjusted for preexisting observed differences among the groups using propensity score methods. SUBJECTS: The study includes 301 participants aged 5 to 18 years treated at the study sites. MEASURES: The analyses are based on family characteristics and the mental health status of children and adolescents reported in interviews with parents as well as administrative data on service use. RESULTS: Analyses using propensity score matching suggest that added services improve treatment outcomes, especially child functioning. However, at least for the services and outcomes considered, the marginal benefits to high levels of treatment are limited. CONCLUSIONS: These analyses illustrate the potential value of propensity score methods to health services researchers.     

Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.