Opportunities for participation, inclusion and recreation in school-aged children with disability influences parent occupations and family quality of life: A mixed-methods study

Introduction Parents of children with disabilities experience long-term loss of occupations and increased caregiving responsibilities, which affect their individual and family quality of life. There is limited knowledge about the factors that influence the family quality of life of families when their child with disability is at school. This study examined the relationships between family quality of life, disability-related supports provided and parental occupations, and identified factors influencing family quality of life. Method A mixed-methods approach was utilised using the Beach Center Family Quality of Life Survey, a demographic questionnaire ( n = 50) and 12 qualitative interviews. Descriptive analyses and Spearman’s Rho correlations were conducted. Both sets of data were analysed and triangulated. Findings Participants reported high satisfaction with their family quality of life, with strong associations between parental occupations and family quality of life. Four qualitative themes highlighted that their family quality of life was hard, challenging and fluctuating; however, there were positives about having a child with disability, and receiving services and supports (formal and informal) for their child with disability helped family quality of life. In spite of this, caregiving was long-term and impacted their everyday occupations, challenging their family quality of life. Conclusion This study concludes that even though parents of a school-aged child with disability are happy to adopt the caregiver role and appreciate the positives of having a child with disability, lack of support within the mainstream schooling system and prolonged caregiving has a detrimental impact on the parents’ occupations, their health and wellbeing, and consequently on their family quality of life. Inadequate opportunities for recreation and lack of resources to manage persistent behaviours of concern highlight unequal participation opportunities for school-aged children with disabilities.

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Predictors of change over time in subjective daytime sleepiness among older adult recipients of long-term services and supports

International Psychogeriatrics ◽

10.1017/s1041610220000782 ◽

2020 ◽

Vol 32 (7) ◽

pp. 849-861

Author(s):

Darina V. Petrovsky ◽

Karen B. Hirschman ◽

Miranda Varrasse McPhillips ◽

Justine S. Sefcik ◽

Alexandra L. Hanlon ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Older Adults ◽

Depressive Symptoms ◽

Daytime Sleepiness ◽

Daily Living ◽

Services And Supports ◽

Over Time

ABSTRACTObjectives:Daytime sleepiness is associated with multiple negative outcomes in older adults receiving long-term services and supports (LTSS) including reduced cognitive performance, need for greater assistance with activities of daily living and decreased social engagement. The purpose of this study was to identify predictors of change in subjective daytime sleepiness among older adults during their first 2 years of receiving LTSS.Design and Setting:Secondary analysis of data from a prospective longitudinal study of older adults who received LTSS in their homes, assisted living communities or nursing homes interviewed at baseline and every 3 months for 24 months.Participants:470 older adults (60 years and older) newly enrolled in LTSS (mean = 81, SD = 8.7; range 60–98; 71% women).Measurements:Subjective daytime sleepiness was assessed every 3 months through 2 years using the Epworth Sleepiness Scale. Multiple validated measures were used to capture health-related quality of life characteristics of enrollees and their environment, including symptom status (Symptom Bother Scale), cognition (Mini Mental Status Exam), physical function (Basic Activities of Daily Living), physical and mental general health, quality of life (Dementia Quality of Life, D-QoL), depressive symptoms (Geriatric Depression Scale) and social support (Medical Outcomes Survey-Social Support).Results:Longitudinal mixed effects modeling was used to examine the relationship between independent variables and continuous measure of daytime sleepiness. Increased feelings of belonging, subscale of the D-QoL (effect size = −0.006, 95% CI: −0.013 to −0.0001, p = 0.045) and higher number of depressive symptoms (effect size = −0.002, 95% CI: −0.004 to −0.001, p = 0.001) at baseline were associated with slower rates of increase in daytime sleepiness over time.Conclusions:Comprehensive baseline and longitudinal screening for changes in daytime sleepiness along with depression and perceived quality of life should be used to inform interventions aimed at reducing daytime sleepiness among older adults receiving LTSS.

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Factors Associated With Changes in Perceived Quality of Life Among Elderly Recipients of Long-Term Services and Supports

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2015.07.019 ◽

2016 ◽

Vol 17 (1) ◽

pp. 44-52 ◽

Cited By ~ 23

Author(s):

Mary D. Naylor ◽

Karen B. Hirschman ◽

Alexandra L. Hanlon ◽

Katherine M. Abbott ◽

Kathryn H. Bowles ◽

...

Keyword(s):

Quality Of Life ◽

Perceived Quality ◽

Factors Associated ◽

Perceived Quality Of Life ◽

Elderly Recipients ◽

Services And Supports

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Health-related Quality of Life: Expanding a Conceptual Framework to Include Older Adults Who Receive Long-term Services and Supports

The Gerontologist ◽

10.1093/geront/gns093 ◽

2012 ◽

Vol 53 (2) ◽

pp. 205-210 ◽

Cited By ~ 33

Author(s):

C. Zubritsky ◽

K. M. Abbott ◽

K. B. Hirschman ◽

K. H. Bowles ◽

J. B. Foust ◽

...

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Conceptual Framework ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Services And Supports

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Satisfaction With Outdoor Activities Over Time Among Long-Term Services and Supports Recipients

Innovation in Aging ◽

10.1093/geroni/igaa057.614 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 189-190

Author(s):

Justine Sefcik ◽

Karen Hirschman ◽

Darina Petrovsky ◽

Liming Huang ◽

Nancy Hodgson ◽

...

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Assisted Living ◽

Term Care ◽

Chronic Health ◽

Outdoor Activities ◽

Services And Supports ◽

Over Time

Abstract Approximately 85% of older adults have at least one chronic health condition. The onset of chronic health conditions and mobility issues can constrain activities, including outdoor recreation. There is limited knowledge of older adults receiving long-term services and supports (LTSS) and their satisfaction with outdoor activities over time after enrolling in services. This study examined predictors of change in ratings of satisfaction with outdoor activities. A secondary analysis was conducted of data involving structured interviews with older adults (N=470) over the first two years of receiving LTSS (Health-Related Quality of Life: Elders in Long-Term Care; R01AG025524). Participants lived in assisted living communities, nursing homes, or their home. A single item on satisfaction with outdoor activities (assessed using a 5-point Likert scale: not at all to extremely satisfied) was the primary outcome. Mixed effects linear regression modeling using a backward elimination process was used for building a final multivariable model. In the final model, older age (p<0.001) and higher overall quality of life ratings (p<0.001) at baseline were associated with slower rates of increase in outdoor satisfaction over time. Higher education level (p=0.035) at baseline was associated with a faster rate of increase in outdoor satisfaction over time. Additionally, those who moved into an assisted living community (p=0.024) or nursing home (p=0.016) at baseline were associated with faster rates of increase in outdoor satisfaction over time compared to those in the home. Knowledge of factors influencing satisfaction with outdoor activities can assist interdisciplinary teams implement interventions for individual or organizational changes.

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Management of Persons with Hemophilia A with Inhibitors After Emicizumab Approval

Blood ◽

10.1182/blood-2018-99-116176 ◽

2018 ◽

Vol 132 (Supplement 1) ◽

pp. 5020-5020

Author(s):

Anisha Patel ◽

Karina Raimundo ◽

Corey Stepule ◽

Jennifer Whiteley ◽

Richard H Ko

Keyword(s):

Quality Of Life ◽

Disease Management ◽

Surgical Management ◽

Hemophilia A ◽

Qualitative Interviews ◽

Years Of Experience ◽

The Us

Abstract Introduction: Emicizumab, a bispecific antibody to factors IXa/X, was approved by the Food and Drug Administration in 2017 for prophylactic treatment of persons with hemophilia A (PwHA) with inhibitors. Compared with other treatments for PwHA, emicizumab has a novel mechanism of action. It is the first hemophilia A (HA) treatment administered subcutaneously and has a much longer half-life than previous treatments; hence, disease management with emicizumab can be different. This study aimed to evaluate how physicians manage HA in patients treated with emicizumab. Methods: This qualitative analysis is the first phase of a planned mixed-methods approach study and comprised 1-hour, blinded telephone interviews with 5 hematologists in all 4 geographic regions of the US. Physicians were included if they met the following criteria: 1) MD or DO degree; 2) board-certified hematologist; 3) practice in the US; 4) ≥2 years of experience post-residency; and 5) currently treat PwHA. To evaluate experience with emicizumab, physicians were also required to have treated a minimum number of patients receiving emicizumab (5 for physicians in hemophilia treatment centers [HTCs] and 3 for physicians in non-HTCs). A total of 5 qualitative interviews were conducted in May and June 2018 to understand the physicians' perspectives on treating PwHA with emicizumab. Interview topics included general management of PwHA, inhibitor screening and testing, management of PwHA with inhibitors, and physicians' experiences treating patients with emicizumab. We report common themes that descriptively emerged from the qualitative interviews, which will inform survey development for the quantitative phase of the study. Results: Of the 5 physicians, 3 were adult hematologists and 4 physicians reported seeing patients in an HTC. All physicians reported having at least 10 years of experience in practice post-residency. Regarding management of PwHA, physicians indicated disease severity, inhibitor status and annual bleed rate as critical factors in guiding treatment decision making. Patients who develop inhibitors require more medical engagement and frequent monitoring. Physicians reported that, from their experience, emicizumab results in a reduction in bleeds, leading to fewer office visits and less monitoring in PwHA with inhibitors. In addition, physicians reported that the need for disease management, even among patients with a phenotype with more bleeding, is lower as a result of emicizumab treatment due to decreased bleed rate and a reduction in need for additional treatments. Physicians reported that emicizumab's subcutaneous, once-weekly dosing leads to improved patients' quality of life and confidence in performing activities without bleeds. Acute bleed management with emicizumab was reported to be slightly different than before, given the boxed warning around concomitant treatment with activated prothrombin complex concentrate; however, the physicians indicated that they still recommend to treat bleeds as soon as one is suspected. Physicians articulated that some questions remain, including the role of immune therapy induction (ITI), use in low-titer inhibitors, and surgical management in patients treated with emicizumab. Physicians reported that there have been no significant access challenges and none of their patients have discontinued therapy; however, long-term monitoring and safety data are needed. Conclusions: This qualitative study suggests that management of PwHA with inhibitors receiving emicizumab is evolving. The interviewed physicians reported that their patients receiving emicizumab experience fewer bleeds and have an improved quality of life. However, questions regarding the role of ITI, surgical management, and long-term safety of emicizumab remain. Future research will provide additional insights into the current management of PwHA with inhibitors treated with emicizumab among US physicians. Disclosures Patel: Genentech Inc: Employment. Raimundo:Genentech Inc: Employment, Other: Ownership interests PLC. Stepule:MedPanel, Inc.: Employment. Whiteley:Genentech, Inc.: Employment, Other: Ownership interests none PLC. Ko:Genentech Inc: Employment; F. Hoffmann-La Roche Ltd: Other: Ownership interests non-PLC.

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SATISFACTION WITH OUTDOOR ACTIVITIES AMONG LONG-TERM SERVICES AND SUPPORTS RECIPIENTS

Innovation in Aging ◽

10.1093/geroni/igz038.1571 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S420-S421

Author(s):

Justine S Sefcik ◽

Karen Hirschman ◽

Darina V Petrovsky ◽

Nancy Hodgson ◽

Mary Naylor

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Health Related Quality ◽

Outdoor Activity ◽

Outdoor Activities ◽

Related Quality ◽

Health Related ◽

Services And Supports

Abstract Being outdoors in nature has been associated with improved mental and physical health. There are no known studies exploring older adults’ satisfaction with outdoor activities at the start of long-term services and supports (LTSS; in nursing homes, assisted living, or at home). We examined characteristics of older adults receiving LTSS and factors associated with outdoor activities satisfaction. A secondary analysis was conducted of baseline data involving structured interviews with older adults new to LTSS (Health-Related Quality of Life: Elders in Long-Term Care; R01AG025524-05). Primary outcome was a single item on the satisfaction with outdoor activities (not at all satisfied to extremely satisfied). We conducted multivariable linear regression models controlling for the influence of the characteristics important to health-related quality of life (LTSS setting, gender, age, number of comorbidities, and sensory impairment [vision/hearing].) Among 356 people, the majority (59%) were satisfied with their outdoor activities. Of 339 participants with complete data, more depressive symptoms (higher Geriatric Depression Score; p<.001) and higher cognitive functioning (higher MMSE score; p=.038) were associated with lower ratings of satisfaction with outdoor activities. Higher self-rated physical health (p=.038) and more independence with activities of daily living (p=.017) were associated with greater satisfaction with outdoor activities. Due to the cross-sectional nature of this study it is difficult to determine causality; however, outdoor activity is important to people receiving LTSS. Interdisciplinary teams can work with older adults receiving LTSS to assess interest level with outdoor activities and create a person-centered plan to increase outdoor activity and satisfaction levels.

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Factors Associated With Perceived Worsened Physical Health Among Older Adults Who Are Newly Enrolled Long-term Services and Supports Recipients

INQUIRY The Journal of Health Care Organization Provision and Financing ◽

10.1177/0046958019900835 ◽

2020 ◽

Vol 57 ◽

pp. 004695801990083

Author(s):

Jasmine L. Travers ◽

Karen B. Hirschman ◽

Alexandra L. Hanlon ◽

Liming Huang ◽

Mary D. Naylor

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Physical Health ◽

Assisted Living ◽

Limited Information ◽

Health Care Need ◽

Related Quality ◽

Services And Supports

Limited information exists on the perceived health of older adults new to receiving long-term services and supports (LTSS) compared with the year prior, posing challenges to the anticipation of health care need and optimization of wellness efforts for this growing population. In response, we sought to identify differences in perceived worsened physical health across three LTSS types (nursing home, assisted living, and home and community-based services) along with health-related quality of life (HRQoL) characteristics associated with older adults’ ratings of perceived worsened physical health at the start of receiving LTSS. Enrolled LTSS recipients completed a single interview assessing their HRQoL. Bivariate and multivariable logistic regression analyses were performed to determine associations in LTSS types and HRQoL characteristics with perceived worsened physical health among older adults (≥60 years old) since 1 year prior to study enrollment. Among the 467 LTSS recipients, perceived physical health was rated as worse than the previous year by 36%. Bivariate analyses revealed no differences in perceived worsened physical health across LTSS types. In adjusted analyses, religiousness/spirituality and better mental and general health perception had a decreased odds of being associated with perceived worsened physical health ( P < .05). Participants with major changes in their health in the past 6 months were more likely to report perceived worsened physical health ( P < .001). Findings provide information that may be used to target efforts to enhance perceived physical health and improve quality of life among LTSS enrollees.

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