Type of Home Care-Informal Versus At Least Some Formal-Matters for Recipients' Perceived Control.

BACKGROUND AND OBJECTIVES: Perceived control is an important psychological resource for middle-aged and older adults. Aging in place may help foster feelings of control, yet many community-dwelling older adults must rely on others-whether family, friends, or professionals-for physical assistance. This study investigated how receiving home care from different sources was associated with two facets of perceived control (mastery and perceived constraints) among adults with varying levels of physical disability. RESEARCH DESIGN AND METHODS: Data were drawn from the 2012 and 2014 waves of the Health and Retirement Study. Community-dwelling adults aged 50 years and older receiving help for at least one activity of daily living (ADL) impairment (N = 884) reported their relationship to each respective caregiver (formal professional and/or informal family or friend), level of ADL impairment, and ratings of perceived control. Ordinary least squares regression was used to examine the association between type of support and perceived control, as well as the moderating effect of physical disability on that relationship. RESULTS: Compared to receipt of informal support alone, receiving a combination of formal and informal support was related to perceptions of greater control over one's life, but only in terms of mastery. The level of one's ADL impairment did not have a moderating effect on the relationship between support type and perceived control. DISCUSSION AND IMPLICATIONS: Findings suggested that the type of instrumental support adults receive in their home has implications for specific facets of perceived control. These findings can help inform home care program development.

Promoting Sustainability in Housing with Services: Insights From the Right Care, Right Place, Right Time Program.

Despite the widely-acknowledged potential of housing with services for improving the lives of low-income older adults, ensuring their financial sustainability has been challenging. This study aimed to address this issue, drawing on 31 key informant interviews and three focus groups with payers, housing providers, and community partners involved in the Boston-area Right Care, Right Place, Right Time Program, which enrolled about 400 older adults. Transcripts were qualitatively analyzed using thematic coding. Participants agreed on the program's value, but there was little consensus on mechanisms for securing ongoing funding. The broadly distributed responsibility for individuals in housing sites, which involves health insurers, hospitals, and community service providers, provides little incentive for investment by these entities. Findings suggest that governmental mechanisms, probably at the federal level, are needed to channel funding toward these supportive services. Without such reliable funding sources, replication of supportive housing models for low-income older people will prove difficult.

Women with cerebral palsy: A qualitative study about their experiences with sexual and reproductive health education and services.

PURPOSE: To explore the recalled experiences of women with CP regarding sexual health education and services they received. METHODS: Semi-structured interviews and focus groups were conducted at four academic tertiary hospitals with 33 adult women with CP. Templates were used to ask about four key content domains: appointment planning (including planning for a gynecologic exam), accessibility of services, experiences with providers, and recommendations for improvement. Sessions were transcribed verbatim and analyzed to generate a coding dictionary. Blinded coding was carried out for each transcript, with duplicate coding used to confirm identified themes. Iterative analysis was used to identify and consolidate coding and key themes. RESULTS: Similar barriers were discussed at the four sites, including lack of accessible exam tables, hospital staff unfamiliar with physical disabilities, and assumptions that women with CP are not sexually active. Many described the sexual education they received as brief, omitted, or mistimed. Self-advocacy was crucial, and recommended strategies ranged from pre-gynecologic exam medication to visit checklists. CONCLUSION: Reproductive health education for young women with CP is frequently inadequate. Medical professionals lack relevant knowledge and awareness; medical facilities lack necessary infrastructure. Recommendations for improvements are made.

Taking a Break: Daily Respite Effects of Adult Day Services as Objective and Subjective Time Away From Caregiving.

BACKGROUND AND OBJECTIVES: Adult day services (ADS) can provide emotional and physical relief for caregivers of persons with dementia. While prior studies conceptualized ADS use at the aggregate level as a dichotomous construct, little is known about objective and subjective respite as distinct constructs. This study investigated how objective and subjective breaks from caregiving were associated with caregivers' daily emotional well-being. RESEARCH DESIGN AND METHODS: Family caregivers (N = 173) whose relatives were using ADS at least twice a week participated in daily interviews over 8 consecutive days (day N = 1,359). Participants provided information on daily respite hours and daily affect. They also reported perceived frequency of breaks from caregiving responsibilities and primary and secondary caregiving stressors (i.e., overload and work conflict). Multilevel models were used to examine the research questions. RESULTS: On average, caregivers reported 7.12 respite hours on ADS days and 1.74 respite hours on non-ADS days. Having more objective respite was associated with higher positive affect, whereas more subjective respite was associated with lower negative affect, after controlling for ADS use and other covariates. Further, caregivers with greater work conflict experienced more benefits to their positive affect as a result of objective respite. DISCUSSION AND IMPLICATIONS: Objective and subjective respite are unique aspects of caregiving that may have varying impact on caregivers. Respite may be especially beneficial for caregivers experiencing conflict between work and caregiving.

Puberty and menarche in young females with cerebral palsy and intellectual disability: a qualitative study of caregivers' experiences.

AIM: To explore experiences of parents of young females with cerebral palsy (CP) and intellectual disability at the onset of puberty. METHOD: This was a phenomenological qualitative study. We conducted phone interviews of parents of young females with CP and intellectual disability who had been seen in the CP center at a freestanding children's hospital within the prior 2 years. Inclusion criteria were English-speaking parents of young females who had combined diagnoses of CP and intellectual disability. Interviews were coded and analyzed by the research team facilitated by Dedoose software. RESULTS: Nine interviews were conducted with parents of daughters aged 14 to 24 years. All daughters used wheelchairs for mobility and augmentative technology for communication. Despite homogeneity in functional ability, there was marked variation in parental perception of the significance of puberty for their daughters. Families often learned about reproductive health from informal social networks. Although families acknowledged the need for sexual abuse screening, there was little consensus about how to do it, and most denied that their own daughter could ever be abused. INTERPRETATION: Parents of young females with CP and intellectual disability have diverse reproductive health beliefs that health care providers must explore in order to provide appropriate recommendations for management of puberty. WHAT THIS PAPER ADDS: Parents of young females with cerebral palsy (CP) and intellectual disability have diverse reproductive health beliefs. Approaches to menstrual management in this population must be individualized. Families discounted the likelihood of abuse, despite acknowledging their daughters' risk.