BACKGROUND: Cancer is primarily a disease of older adults with sixty percent of all incidences occurring in individuals 65 years and over. Coping with cancer may entail additional challenges for older adults due to co-morbidities, declining mobility, reduced social networks and ageism. To date, the majority of research examining supportive care needs has focused on younger women with breast cancer. Little attention has been paid to older adults’ experience with cancer, particularly with respect to psychosocial support. PURPOSE: The aims of the present studies were twofold: (1) to learn more about peer support services in Ontario, specifically: the type and location of available programs; extent of utilization by older adults; and factors that might facilitate or inhibit use by older adults; and (2) to gain a better understanding of the experiences and challenges facing older adults living with cancer, strategies and resources used to meet these challenges, unmet support related needs, as well as awareness of support services, principally peer support. METHODS: First, peer support services in Ontario were identified through an environmental scan. Subsequently, interviews were conducted with 24 key contacts from a purposeful sample (based on type and geographic location) of 30 of these groups. Next, surveys were administered to participants (n=220) and facilitators (n=39) from these groups to establish a profile of current peer support users and deliverers, and examine the extent to which older adults (age ≥ 65) utilized these services. Finally, a preliminary, in-depth, qualitative exploration from the perspective of older adults living with cancer was conducted through a focus group (n=6) and interviews with 20 older adults. RESULTS: The environmental scan yielded a total of 177 peer support cancer programs across Ontario; predominately group-based (93%). Most were located in urban centers. Few programs targeted colon cancer. In the 30 groups examined, breast and prostate cancer were the most common focus (60%). Group facilitators were primarily female (75%) and most had personally experienced cancer (77%). The male facilitators were older (p <.05) and most likely to lead the prostate groups. None of the programs systematically collected client information. Clients ranged in age from 25 to 91 years (mean = 64 ± 10.7). Many were long-term cancer survivors (average five years post diagnosis). Overall, less than half the clients were aged 65 or older. Clients over age 65 were predominately men (86%; p <.001) with prostate cancer. Almost 70% of program directors and over 90% of facilitators were unaware most individuals with cancer are over the age of 65. Interview participants were recruited primarily through the Canadian Cancer Society (CCS). Not surprisingly, 46% had participated in peer support. Older adults identified several challenges with respect to physical functioning, sexuality, emotional distress, and obtaining information. Participants utilized a variety of resources to meet informational and emotional challenges including, the Internet and the support of family and friends. Accessing routine follow-up care after the transition from ‘patient’ to ‘survivor’ was a significant unmet need. CONCLUSIONS: The findings support the premise that cancer peer support services may be under-utilized by older adults, particularly older women. The reasons for these findings remain unclear although ageism may be a factor. Due to the reliance on a convenience sample, qualitative findings that older adults were generally able to meet their supportive care needs cannot be generalized to all older adults living with cancer. Large organizations such as the CCS need to begin systematically collecting demographic and other information on clientele to enhance program planning and delivery. Further research studies on older adults living with cancer are needed to examine their supportive care needs.

Our current LTC system is burdensome to state and federal governments, to family members, and to individuals’ pocket books; it is not expected to endure the weight of the baby boom generation. Total national spending for long-term care in 2005 was $207 billion and is only expected to rise. This study examined the LTC planning behavior of individuals of baby boom birth years (1946 to 1964), focusing on the influence of individuals’ views about whose responsibility is the provision of LTC on planning behavior. Specifically, the study has three aims: to 1) to describe the LTC planning behavior among baby boom aged adults; 2) examine baby-boom aged adults’ views on whose responsibility is the planning/provision/cost of LTC (location of responsibility); and 3) examine the influence of potential predictors of individuals’ LTC planning with specific focus on the influence of location of responsibility (LOR). Data was collected between May and August of 2009 using a mixed modes self-administered 80-item original survey via the internet and regular mail (study sample = 1,066; 1,166 responding; response rate 58%). The study population consists of benefit-eligible Black, Hispanic/Latino, and Non-Hispanic White faculty/staff born in or between the years of 1946 and 1964 from a large southwestern university. This study found overall low levels of LTC planning; however, with regard to LTCI purchase, the participation rate is good relative to the national coverage rate. The study informs us that baby-boom aged individuals as a whole believe themselves (individuals) to have a high level of responsibility for their own potential LTC needs, but also that responsibility lies with the government, employers, and adult children as well. Consistent with hypotheses, LTC awareness/avoidance predicted a higher level of extent of planning (gathering, deciding, and concretizing); worthwhileness and self-efficacy predicted LTCI purchase; and awareness, subjective norm, worthwhileness, and self-efficacy predicted LTC specific savings. Additionally, individual responsibility (negatively), female (positively), income (positively), experience (self and other; positively), LTC knowledge (positively), and Hispanic (negatively) all predicted extent of planning. Employer responsibility (positively), faculty (negatively), marital status (married; negatively), Black (positively), and medical diagnoses all predicted LTCI purchase. And, employer responsibility (positively), government responsibility (negatively), income (positively), experience-other (positively), and knowledge (positively) all predicted LTC-specific savings. Implications for practitioners, employers, program planners, and policy-makers are presented. / text

Families of children with special health care needs (CSHCN) and disabilities who lived in rural communities faced a variety of economic, social, and environmental challenges. Bronfenbrenner (1979, 2005) in his Bioecological Theory of Human Development offered an insightful lens for understanding the nested environments in which these families interact. This model was used as the overarching framework for this dissertation. The three manuscripts contained in this dissertation have included analyses of the involvement and participation of families of CSHCN and disabilities in the creation of a medical home located in a rural southwestern border community. These studies were critical for the medical home professionals - family involvement was at the core of the medical home philosophy. The overarching purpose of this dissertation was to set the foundation for successful family participation and feedback in the medical home. Within the first manuscript, I used the Medical Home Family Index to discover families’ (a) perceptions of interactions with medical professionals and (b) ratings of the quality of care within the medical home. Families of CSHCN (N = 92) completed the Medical Home Family Index and descriptive statistics as well as Chi-Square analyses were completed. Significant associations between families’ home languages and the amount of time the CSHCN had been receiving services at the medical home and the families’ responses were found. No associations between the children’s ages and the families’ responses were found. Recommendations for medical home professionals to complete the partner index, the Medical Home Index, were included. The purpose of the second manuscript was to examine the support needs of families of CSHCN and disabilities. Relationships between the severity of the children’s special health care needs and disabilities and the potential services they required were explored. For this study, a small sample (N = 25) of families of CSHCN completed the Family Needs section of the Center for Medical Home Improvement Family Survey, an in-depth, five-part survey designed to have families report on the services and supports that their CSHCN actually received. Families of CSHCN identified the need for therapies to be provided within the community. Findings from this study supported the creation of a pilot program in which parents were active participants in an intensive summer program designed to address the language and communication needs of their children. The purposes of the third manuscript were to (a) conduct research in two settings - a rural medical home and the families’ natural environments, (b) identify families’ perceptions of a targeted summer language intervention program, and (c) determine what changes in young children’s communication skills could be measured when parents were active members in a targeted summer language intervention program. For the third study, fourteen children with language delays and their families participated. Children were assessed using the Battelle Developmental Inventory-2nd Edition or the Preschool Language Scale-4th Edition. Intervention was conducted within a pediatric medical home and families continued the intervention at home. For both test results, the treatment had a significant effect. All families indicated a strong desire to continue the program and families who were most concerned with their children’s language were most satisfied with the program. This pilot program model was an example of ways that interventions could be extended successfully beyond traditional settings.

No description available.

No description available.

A total of 1,018 charts of people who died from August 1, 2008 through July 31, 2009 were reviewed to describe and examine current end-of-life care needs and care practices provided in two acute care hospitals. The mean age of those who died was 72.5, the majority of decedents were elderly (73.8%), a slight majority were male (53.0%), a slight majority were not married (53.0%), and most were urbanites (79.5%). The most common primary diagnosis was cancer (36.2%). More than half of deaths were expected (54.6%). Only 40.3% of those who had an expected death had a palliative care referral. Of all decedents, 13.8% had CPR performed, and a total of 13.9% of people died without having a DNR order. A written will was provided in 30.8% of cases. Most had technologies in use at the time of death (97.3%). Of those who died with pain, most received analgesia (98.6%).

Background/Aim: During the past two decades, major advances in maternal-fetal medicine, neonatology, and the development of regionalized perinatal care have resulted in dramatic increases in survival rates, by more than 60%, of extremely immature (EI) infants born at less than 26 completed weeks of gestation, creating a new infant population. Studies of school-age outcomes in children with an extremely low birth weight of &lt; 1000 g, born in the1980s, indicated that these children had a substantially high prevalence of low-severity neuropsychological deficits, behavioral problems, and difficulties at school. Information on school-age outcomes of extremely preterm children born in the 1990s is sparse, and mainly restricted to the neurobehavioral and developmental outcome. The aim of this research was to investigate the comprehensive neurological, developmental, functional, and mental health status and health care needs of children born at 23-25 weeks of gestation in the 1990s, allowing a total view of the child in the context of the family, his peers, school, and the health care system. The ultimate aim was to obtain a clearer understanding of the functional capacities of these vulnerable children and the possibilities of ameliorative interventions, as a basis for planning and provision of services for this growing population. Methods: We studied 11-year-old children born from 1990 through 1992 before 26 completed weeks of gestation in all of Sweden. All had been evaluated at a corrected age of 36 months. Of 89 eligible children, 86 (97%) were studied at a mean age of 11 years. An equal number of children born at term served as controls. The following methods were used: 1) well validated, mailed questionnaires filled out by the parents, class teachers and the children themselves; 2) structured interviews were conducted with a parent or a primary caregiver; 3) review of pediatric case records and records from other specialist health care services; and 4) anthropometric measurements (length, weight, head circumference and body mass index) from birth to 11 years of age. The following domains were explored: current health status, growth attainment, mental health assessment, emotional well-being, adaptive functioning and social competencies, school performance, executive functions, and learning and language skills. Relations of socioeconomic background and of environmental and perinatal risk factors to the long-term outcome were evaluated. Results: EI children compared with the controls had significantly higher rates of specific diagnoses or disabilities including neurosensory impairment (15% vs 2%, respectively), asthma (20% vs 6%), poor motor skills (26% vs 3%), poor visual perception (21% vs 4%), poor learning skills (27% vs 3%),poor adaptive functioning (42% vs 9%), and poor academic performance (49% vs 7%). As a consequence of these disabilities, significantly more EI children than controls had chronic conditions, which included functional limitations (64% vs 11%), compensatory dependency needs (59% vs 25%), and services above those routinely required by children in general (67% vs 22%). Regarding growth attainment, EI children had significantly lower values for all three growth parameters (length, weight and head circumference) than the controls at 11 years. They showed a sharp decline in weight and height z scores up to 3 months’ corrected age, followed by good catch-up growth in both weight and height up to 11 years. EI children did not exhibit catch-up growth in head circumference after the first 6 months of life. Preterm birth and parental height were significant predictors of 11-year height, and group status (prematurity) correlated strongly with head circumference. Our results also suggest that the EI children had a significantly greater risk for poorer mental health and poorer emotional well-being than the control participants, including internalizing (anxiety/depression, withdrawn behavior and somatic complaints), and attention, social, and thought problems. No differences in externalizing problems were found between the EI cohort and controls. Multivariable analyses disclosed a number of significant predictors of behavioral adjustment: group status (EI vs control), family function, social risk, male gender, and presence of a chronic medical condition. Concerning school performance, more than half (59%) of our EI cohort were experiencing school difficulties and 15%, compared with 5% of the control children were attending special schools or having full-time special education. Despite fewer adaptive skills in the EI cohort these children were not different from the controls in respect to being happy and being positively adjusted in their day-to-day life. Compared with controls, EI children had a significantly increased risk for executive dysfunctions in most of the areas assessed (Attention control and Attention switching, Hypoactivity, Planning/organizing, and Working memory). EI children were also at increased risk for deficient skills in language tasks (comprehension, communication, and expression) and in the four standard measures of learning skills (reading/writing, math, general learning, and coping in learning). However, only a relatively small number of EI children exhibited severe impairments in executive or non-executive skills. Multivariate analyses revealed that prematurity, executive dysfunction and male gender were associated with poor learning skills. Conclusions and implications: Children born extremely immature have significantly greater health problems and special health care needs that require ongoing services through the school years. However, it is notable that very few children have severe impairments that curtail major activities of daily living. The overall results of this study are reassuring. Despite having an increased risk for mental health problems, executive dysfunctions and school difficulties, 85% of the EI children were in the mainstream schools and a majority were not having major adjustment difficulties. In terms of growth, most of our EI children showed good catch-up in late childhood and were within 2SD of their mean midparental height at 11 years of age. Although biological immaturity is associated with an increased risk for a substantial number of behavioral/emotional problems, improvement of the modifiable environmental factors will benefit the outcome in EI children. We also believe that knowledge of the course of development of psychopathological conditions from early childhood to adolescence and beyond is crucial for identifying the need for intervention and prevention strategies. Thus when there is evidence to suggest neuropsychological and behavioral or emotional problems, early identification and preventive measures might help families to manage these from an early stage. Our findings further suggest that current preterm follow-up programs might benefit from the addition of psychological and family services to traditional neurodevelopmental assessments, especially in the neonatal period and first years of life.

This study has explored the culture of nursing home life as experienced by elderly nursing home residents in Taiwan in order to understand, describe and interpret their care needs. In December 2006, the elderly represented 10% of the total population of Taiwan, and this proportion is predicted to increase steadily. In turn, this increase suggested that Taiwan would see ever greater numbers of elderly people with chronic illnesses and physical and mental disabilities. To care for these people, nursing homes have expanded rapidly throughout Taiwan. However, the quality of care provided in these nursing homes has become an urgent matter of concern. Though meeting the residents' care needs is essential for the provision of the best quality care, a review of the available literature shows that the care needs of the elderly residents within the nursing home context are poorly understood, both in Taiwan and internationally. To address this gap in present understanding, a focused ethnographic approach, using participant observation, in-depth interviews and a review of documents, was undertaken between July 2005 and February 2006. The key participants were sixteen elderly residents who were 65 years old and over, had no cognitive impairment and had lived in the nursing home selected for the present study for at least six months. Eight nurses, six nursing assistants, one private nursing assistant, one orderly, one physician's assistant and four family members were also interviewed, with questions put to them being based on the data generated from the observation and in-depth interviews with the elderly residents. All interviews were recorded on a digital recorder and transcribed verbatim. Following this, the data gathered from the in-depth interviews, the participant observation and the review of documents was sorted and indexed using the qualitative software program, NVivo7. A five-step analytic process, based on concepts discussed in previous literature, was used to trace the emerging themes. Nine major care needs were identified by the elderly residents. These included basic functional care needs, emotional support care needs, economic care needs, psychological care needs, environmental care needs, social support care needs, professional care needs, religious care needs and preparation for death care needs. Three themes of nursing home culture were generated; these were collective life, care rituals and embedded beliefs. The findings of the study indicate that the structure and culture of the nursing home contribute to several care needs remaining unmet. In addition, the results reveal that it is necessary to satisfy economic care needs before other care needs can be resolved. These findings fill an important gap in nursing knowledge regarding the delivery of better quality care in nursing homes. They also provide relevant information to nursing practice, nursing education and Taiwanese long-term care policy-making, and provide a sound basis for future residential care research.

Thesis (M.S.)--University of Michigan, 1976.

Thesis (M.S.)--University of Michigan, 1976.