Social Care Resources Research Articles

Caregivers' Sense of Coherence: Implications on Direct and Indirect Costs of Dementia Care.

Dementia care is associated with physical, emotional, and monetary impact on the informal carers providing unpaid care. Differences in the personal characteristics of caregivers may help explain the variations in the costs of dementia care. The aim of this study was to analyze the effect of caregivers' sense of coherence (SOC) on direct and indirect costs in dementia care. A cross-sectional study was conducted in community dwelling caregivers of patients with Alzheimer's disease. Data of healthcare services were obtained from clinical registries, and information was collected from caregivers regarding their use of social care resources and time spent caregiving. The transformation of all costs into Euros was made assigning a fixed cost of 10.29 € /h and 16.24 € /h for assisting in instrumental and basic activities of daily living, respectively. Caregivers' SOC was assessed using the Orientation to Life Questionnaire (OLQ-13). Adjusted regression models were developed, with different types of costs as dependent variables. A sample of 147 caregivers was recruited. The mean OLQ-13 score was 73.3 points (SD = 11.6). The regression models showed a small association between caregivers' SOC and direct costs, mainly linked to the use of social care resources (r2 = 0.429; β= -15.6 € /month), and a greater association between SOC and indirect costs (r2 = 0.562; β= -222.3 € /month). Increasing caregivers' SOC could reduce dementia care costs by decreasing the use of social care resources and caregiving time.

Long-term work outcomes and the efficacy of multidisciplinary rehabilitation programs on labor force participation in cancer patients - a protocol for a longitudinal prospective cohort study.

Background. Many cancer survivors experience late effects of cancer treatment and therefore struggle to return to work. Norway provides rehabilitation programs to increase labor force participation for cancer survivors after treatment. However, the extent to which such programs affect labor force participation has not been appropriately assessed. This study aims to investigate i) labor force participation, sick leave and disability rates among cancer survivors up to 10 years after being diagnosed with cancer and identify comorbidities contributing to long-term sick leave or disability pensioning; ii) how type of cancer, treatment modalities, employment sectors and financial- and sociodemographic factors may influence labor force participation; iii) how participation in rehabilitation programs among cancer survivor affect the longterm labor force participation, the number of rehospitalizations and incidence of comorbidities.Design and methods. Information from four medical, welfare and occupational registries in Norway will be linked to information from 163,279 cancer cases (15.68 years old) registered in the Norwegian Cancer Registry from 2004 to 2016. The registries provide detailed information on disease characteristics, comorbidities, medical and surgical treatments, occupation, national insurance benefits and demographics over a 10-year period following a diagnosis of cancer.Expected impact of the study for Public Health. The study will provide important information on how treatment, rehabilitation and sociodemographic factors influence labor force participation among cancer survivors. Greater understanding of work-related risk factors and the influence of rehabilitation on work-participation may encourage informed decisions among cancer patients, healthcare and work professionals and service planners.Significance for public healthThis study could potentially determine the influence of cancer treatment, rehabilitation and sociodemographic factors on labour force participation and use of social benefits and health care resources. Data from five nationwide medical, welfare and occupational registries from the whole cancer population in Norway over a ten-year period following diagnosis will be analyzed. In addition, the study will expand the knowledge on risk factors for rehospitalization, sick leave and disability, and provide important health-related, financial and sociodemographic information of patients referred to rehabilitation. The study has the potential to provide solid evidence to guide treatment options and develop social benefit programs for a large and vulnerable patient population.

Supports for migrant farmworkers: tensions in (in)access and (in)action

Purpose This study aims to examine the role of support actors in promoting or hindering access to public services/spaces for migrant agricultural workers (MAWs) and to determine the factors that influence adequate support for this population. Design/methodology/approach Using a situational analysis methodology, the authors carried out focus groups and interviews with 40 support actors complimented by a community scan (n = 28) with public-facing support persons and a community consultation with migrant farmworkers (MFWs) (n = 235). Findings Two major themes were revealed: (In)access and (In)action and Blurred Lines in Service Provision. The first illustrated how support actors could both reinforce or challenge barriers for this population through tensions of “Coping or Pushing Back on Constraints” and “Need to find them first!” Justification or Preparation? Blurred lines in Service Provision encompassed organizational/staff’s behaviors and contradictions that could hinder meaningful support for MFWs revealing two key tensions: “Protection or performance?” and “Contradicting or reconciling priorities? Our findings revealed a support system for MAWs still in its infancy, contending with difficult political and economic conditions. Social implications Service providers can use research findings to improve supports for MAWs. For example, addressing conflicts of interests in clinical encounters and identification of farms to inform adequate outreach strategies can contribute to more effective support for MAWs. Originality/value This research is novel in its examination of multiple sectors as well as its inclusion of both formal and informal actors involved in supporting MAWs. Our findings have the potential to inform more comprehensive readings of the health and social care resources available to MAWs.

Policy Recommendations to Promote Integrated Mental Health Care for Children and Youth.

Policy Recommendations to Promote Integrated Mental Health Care for Children and Youth.

New Challenges in Addiction Medicine: COVID-19 Infection in Patients With Alcohol and Substance Use Disorders-The Perfect Storm.

New Challenges in Addiction Medicine: COVID-19 Infection in Patients With Alcohol and Substance Use Disorders-The Perfect Storm.

Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study.

Rare diseases face serious sustainability challenges regarding the distribution of resources geared at health and social needs. Our aim was to describe the barriers experienced by parents of children with Rett Syndrome for accessing care resources. A qualitative case study was conducted among 31 parents of children with Rett syndrome. Data were collected through in-depth interviews, focus groups, researchers’ field notes and parents’ personal documents. A thematic analysis was performed and the Standards for Reporting Qualitative Research (SRQR) guidelines were followed. Three main themes emerged from the data: (a) essential health resources; (b) bureaucracy and social care; and (c) time management constraints. Parents have difficulties accessing appropriate health services for their children. Administrative obstacles exist for accessing public health services, forcing parents to bear the financial cost of specialized care. Time is an essential factor, which conditions the organization of activities for the entire family. Qualitative research offers insight into how parents of children with Rett syndrome experience access to resources and may help improve understanding of how Rett syndrome impacts the lives of both the children and their parents.

Remembering people with dementia during the COVID-19 crisis.

This letter argues that we need to pay particular attention to people with dementia during this difficult timeof the COVID-19 pandemic. Social distancing rules and cocooning for people aged 70 years and over are nowin place in Ireland to slow down the rate of infection and protect vulnerable older people. This letter arguesthat we need, more than ever, to assert the personhood of people with dementia at this difficult time. That means more person-centred care andpractical support structures for family carers to allow them to continue to care at home in a safe and life-enhancing way. New public broadcasting initiativescould create information and communication channels for people with dementia and their carers, as well asdemonstratingempathy and solidaritywith their predicament. Government, the Department of Health, the HSE and the voluntary sector have risento the challenge of COVID-19 in all sectors of society. So too have ordinary citizens. Now weneed to uniteeven more to createanunyieldingcommitment and adherenceto the principles of decency, justice and equity in the allocation of scarce health and social care resources.By doing this, we will demonstrateour caring potential and capacityin a way that reflects our shared humanity, not only in the current crisis, but into the future.

Health status prediction for the elderly based on machine learning

Health and social care services are crucial to old people. The provision of services to the elderly with care needs requires more accurate predictions of the health status of the elderly to rationalize the allocation of the limited social care resources. The traditional analytical methods have proved incapable of predicting the demands of today's society, compared to which machine learning methods can more accurately capture the nonlinear relationships between the variables. To ascertain visually the performance of these machine learning methods regarding the prediction of the elderly’s care needs, we designed and verified the experiment.

Interprofessional, older adult, team-based home visits: A 6-year prospective analysis

ABSTRACT This 6-year prospective study describes the impact on student attitudes of an innovative, interprofessional geriatrics curriculum (IPGC) focused on team-based care with older adults in a home-based community setting. Dental, medical, occupational therapy, pharmacy, physical therapy, and physician assistant students were placed into teams each led by faculty members from all of the professions. The curriculum consisted of five, four-hour sessions over one academic year. Teams met with a community-dwelling older adult three times. Students completed the Geriatric Assessment Scale (GAS) before and after the IPGC experience. At the conclusion, improvements in attitudes toward older adults in the GAS and its four domains – social value, medical care, compassion, and societal resources–were observed across a wide spectrum of students. Students with the lowest initial attitudes improved the most, as did the scores of the youngest students. Older students improved more than younger students in the social value domain (i.e., the perceived social value of older adults). Among disciplines, occupational therapy and social work students improved the most in the social value domain. This study demonstrates improvement in attitudes toward older adults from student involvement in IPGC that combines didactic and experiential learning through community partnerships in a home-based setting.

Remembering people with dementia during the COVID-19 crisis

This letter argues that we need to pay particular attention to people with dementia during this difficult time of the COVID-19 pandemic. Social distancing rules and cocooning for people aged 70 years and over are now in place in Ireland to slow down the rate of infection and protect vulnerable older people. This letter argues that we need, more than ever, to assert the personhood of people with dementia at this difficult time. That means more person-centred care and practical support structures for family carers to allow them to continue to care at home in a safe and life-enhancing way. New public broadcasting initiatives could create information and communication channels for people with dementia and their carers, as well as demonstrating empathy and solidarity with their predicament. Government, the Department of Health, the HSE and the voluntary sector have risen to the challenge of COVID-19 in all sectors of society. So too have ordinary citizens. Now we need to unite even more to create an unyielding commitment and adherence to the principles of decency, justice and equity in the allocation of scarce health and social care resources. By doing this, we will demonstrate our caring potential and capacity in a way that reflects our shared humanity, not only in the current crisis, but into the future.

Integrating an Ambient Assisted Living monitoring system into clinical decision-making in home care: An embedded case study

Background: In Quebec, home care administrators are increasingly open to using Ambient Assisted Living (AAL) technologies as part of services to better support care recipient with a major loss of autonomy. However, little information is available about how these technologies are integrated into clinical practice. Research aim: The present revelatory embedded single-case study aimed to understand how AAL monitoring technologies were integrated in the clinical decision-making process of social and health care professionals to maintain older adults at risk of self-neglect at home (n = 3). Methods: Multiple data collection methods were used for triangulation purposes: semi-structured individual and group interviews, encrypted data from monitoring technologies, medical records, and cognitive and functional evaluations. Data was analyzed using the approach of Miles, Huberman and Saldana (2004). Results: Results show that AAL monitoring technologies were used by social and health care professionals as a means to collect additional and reliable data about home care recipients’ life habits, such as daily patterns related to eating, sleeping, personal care, inactivity and going outside. Professionals wanted to confirm or refute their own hypotheses before developing a comprehensive intervention plan. This information was then used to attribute home care services that correspond to the needs of the care recipient to optimise autonomy and security. Conclusion: Results showed that AAL monitoring technologies provide the professionals with information that would otherwise be inaccessible and are conceptualized as a means of using social and health care resources wisely in a context where resources are scarce.

Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design

BackgroundParent carers of disabled children are at increased risk of mental and physical health problems. They often experience challenges to maintaining good health which have implications for their well-being and their ability to care for their children. In response to these needs, researchers and parent carers developed the Healthy Parent Carers (HPC) programme. It is a peer-led, group-based intervention that promotes behaviours associated with health and well-being. The aims of this trial are to assess the acceptability of the HPC programme and the feasibility of its delivery in the community and to assess the feasibility and acceptability of the design of the definitive trial to evaluate the programme’s effectiveness and cost-effectiveness.MethodsWe will establish six research sites and train facilitators to deliver the manualised intervention. Parent carers of children with special educational needs and disabilities will be individually randomised, stratified by group delivery site, to either take part in a group programme and online resources (intervention) or to receive access to the online resources only (control). Measures of mental health; well-being; health-related quality of life; health behaviours; patient activation; protective factors such as resilience, social connections, and practical support; and use of health care, social care, and wider societal resources will be collected before randomisation (baseline), immediately post-intervention, and 6 months later. Recruitment of participants, adherence to the programme, and the dose received will be assessed. Group sessions will be audio-recorded to evaluate the fidelity of delivery and participant engagement. Participants’ and facilitators’ feedback on the programme content and delivery, their experience, and the acceptability of the outcome measures and trial design will be collected through feedback forms, interviews, and focus groups.DiscussionThis trial will assess whether the programme delivery and evaluative trial design are feasible, to inform whether to progress to a definitive randomised controlled trial to test the effectiveness and cost-effectiveness of the Healthy Parent Carers programme.Trial registrationISRCTN, ISRCTN151144652, registered on 25 October 2018; ClinicalTrials.gov, NCT03705221, registered on 15 October 2018.

Data Resource Profile: the Scottish Social Care Survey (SCS) and the Scottish Care Home Census (SCHC).

IntroductionLinked health care datasets have been used effectively in Scotland for some time. Use of social care data has been much more limited, partly because responsibility for these services is distributed across multiple local authorities. However, there are substantial interactions between health and social care (also known internationally as long-term care) services, and keen policy interest in better understanding these. We introduce two social care resources that can now be linked to health datasets at a population level across Scotland to study these interdependencies. These data emerge from the Scottish Government’s centralised collation of data from mandatory returns provided by local authorities and care homes.MethodsDeterministic and Probabilistic methods were used to match the Social Care Survey (SCS) and Scottish Care Home Census (SCHC) to the Community Health Index (CHI) number via the National Records of Scotland (NRS) Research Indexing Spine.ResultsFor the years 2010/11 to 2015/16, an overall match rate of 91.2% was achieved for the SCS to CHI from 31 of Scotland’s 32 local authority areas. This rate varied from 76.7% to 98.5% for local authority areas. A match rate of 89.8% to CHI was achieved for the SCHC in years 2012/13 to 2015/16 but only 52.5% for the years 2010/11 to 2011/12.ConclusionIndexing of the SCS and SCHC to CHI offers a new and rich resource of data for health and social care research.

Data Resource Profile The Scottish Social Care Survey (SCS) and the Scottish Care Home Census (SCHC)

Introduction: Linked health care datasets have been used effectively in Scotland for some time. Use of social care data has been much more limited, partly because responsibility for these services is distributed across multiple local authorities. However, there are substantial interactions between health and social care (also known internationally as long-term care) services, and keen policy interest in better understanding these. We introduce two social care resources that can now be linked to health datasets at a population level across Scotland to study these interdependencies. These data emerge from the Scottish Government’s centralised collation of data from mandatory returns provided by local authorities and care homes. Methods: Deterministic and Probabilistic methods were used to match the Social Care Survey (SCS) and Scottish Care Home Census (SCHC) to the Community Health Index (CHI) number via the National Records of Scotland (NRS) Research Indexing Spine. Results: For the years 2010/11 to 2015/16, an overall match rate of 91.2% was achieved for the SCS to CHI from 31 of Scotland’s 32 local authority areas. This rate varied from 76.7% to 98.5% for local authority areas. A match rate of 89.8% to CHI was achieved for the SCHC in years 2012/13 to 2015/16 but only 52.5% for the years 2010/11 to 2011/12. Conclusion: Indexing of the SCS and SCHC to CHI offers a new and rich resource of data for health and social care research.

Satisfaction with Care in Late Stage Parkinson's Disease.

In late stage Parkinson's disease (PD) (i.e., Hoehn and Yahr (HY) stages IV-V), both motor and nonmotor symptoms (NMS) are pronounced, and the patients become increasingly dependent on help in their daily life. Consequently, there is an increasing demand on health-care and social care resources for these patients and support for their informal caregivers. The aim of this study was to assess satisfaction with care in late stage PD patients and to identify factors associated with satisfaction with care. Moreover, to assess their informal caregivers' satisfaction with support and to identify factors associated with caregivers' satisfaction with support. Factors potentially associated with satisfaction with care/support were assessed in 107 late stage PD patients and their informal caregivers (n=76) and entered into multivariable logistic regression analyses. Fifty-eight (59%) of the patients and 45 (59%) of the informal caregivers reported satisfaction with their overall care/support. Patients satisfied with their care reported higher independence in activities of daily living (ADL) (Katz ADL index; P=0.044), less depressive symptoms (Geriatric Depression Scale, GDS-30; P=0.005), and higher individual quality of life (QoL) (Schedule for the Evaluation of Individual Quality of Life Questionnaire, SEIQoL-Q; P=0.036). Multivariable logistic regression analyses identified depressive symptoms (P=0.015) and independence in ADL (P=0.025) as independently associated with satisfaction with care. For informal caregivers, the analyses identified patients' HY stage (P=0.005) and caregivers' QoL (Alzheimer's Carers Quality of Life Inventory, ACQLI; P=0.012) as independently associated with satisfaction with caregiver support. The results indicate that an effective both pharmacological and nonpharmacological PD therapy is important, to adequately treat motor and NMS (e.g., depressive symptoms) in order to improve depressive symptoms and patient independence in ADL. This may benefit not only the patients, but also their informal caregivers.

How formal navigators interpret their roles supporting families

PurposeThe purpose of this paper is to examine how formal navigators interpret their roles supporting families of older adults.Design/methodology/approachThis study was an interpretive inquiry informed by critical gerontology and discourse analytic methods. Interview data were collected and analyzed from 22 formal service providers who helped older adults and their families navigate health and social care resources in one Western Canadian city.FindingsAlthough acknowledging structural barriers to service access, participants emphasized individual empowerment as their dominant strategy, interpreting their roles as providing information and education about services. In part, these interpretations may reflect the limited nature of their ability to help broker access or advocate; in part, they may also reflect the broader political and economic discourses surrounding care in Canada.Research limitations/implicationsWhen providers position navigation and access to care as individual problems, this can obscure structural burden as well as potential inequities among older adults. Future research should examine whether navigational role interpretations are similar or different to those of navigators in other regions. Navigators in other health and social care contexts may enact differing meanings in their work.Practical implicationsAlthough formal public navigators can play an important role, approaches that go beyond providing information may better meet families’ needs for support.Originality/valueThis is one of the first studies focused specifically on providers’ interpretations of the meaning of navigational work in health and social care for older adults, and to extend a critical gerontological gaze toward the issue of system navigation.

Bathing adaptations in the homes of older adults (BATH-OUT): results of a feasibility randomised controlled trial (RCT)

BackgroundHousing adaptations have been identified as an important environmental and prevention intervention for older adults, which may improve health and quality of life. The onset of disability in bathing can act as a warning for further disability in other activities and may therefore be a judicious time-point for intervention. The aim of this study was to determine the feasibility of conducting a Randomised Controlled Trial (RCT) of bathing adaptations, to evaluate whether they improve older adults’ perceived health status and quality of life, prevent further functional deterioration, and reduce the use of other health and social care resources. This study was conducted in preparation for a powered RCT.MethodEligibility criteria were aged > 65 and referred to local authority housing adaptations service for an accessible flush-floor shower. Participants were randomised to either usual adaptations (3–4 month wait) or immediate adaptations (no wait). Outcomes were assessed at 3, 6 and 9 months and included perceived physical and mental health status, health and social care related quality of life, independence in activities of daily living (ADL) and bathing, and falls. Data on costs and the use of health and social care resources were collected during follow-up in order to inform a definitive health economic evaluation.ResultsSixty participants were recruited and randomised, 31 to immediate adaptations and 29 to waiting list control. Mean age was 77(SD8), 58% women and 58% living alone. Follow-ups were completed with 90, 85 and 72% at 3, 6 and 9 months respectively. Adaptations were delivered to 65% of participants within the requisite timescales as there were delays with some privately owned properties. There were improvements from baseline in both groups on all outcome measures following the completion of the adaptations.ConclusionsThis is the first RCT of housing adaptations in the UK. We demonstrated the feasibility of using a waiting list control, subject to minor alterations to the timescales for privately owned properties. A powered trial would evaluate the impact on older adults’ quality of life and investigate the impact of waiting times on functional outcomes and health and care resource use.Trial registrationISRCTN14876332 Registered 12 July 2016.

Understanding the spatial disparities and vulnerability of population aging in China

AbstractUnderstanding the regional pattern of population aging in China enables rational policy making to address the challenges of inequity in social welfare and care resources among the east–central–west regions and rural–urban areas of China. This study uses census data in 2000 and 2010, and aging population ratios, annual increase rates, and spatial autocorrelation analysis to examine spatial disparities in population aging in China. The results show that the population is more aged and aging more rapidly in rural areas than in urban areas. Spatial clusters of population aging expanded from the east coastal region in 2000, to inland provinces such as Sichuan and Chongqing in 2010. The vulnerable regions in terms of population aging, health status of the elderly population, and economic level at the prefectural level were also identified.

Impact of bicycle provision on the health of refugees in London: a qualitative study

BackgroundRefugees are a growing population in London and experience barriers to regular meaningful exercise. Research shows that cycling as a form of exercise is often overlooked by minority ethnic groups. In London, UK, The Bike Project is a charity that reconditions bicycles, donates them to refugees, and offers cycle proficiency training. This study aimed to explore the impact of being provided with a free bicycle and involvement with the charity on the wellbeing of refugees in London. MethodsThis qualitative study, using semi-structured interviews, was carried out in the charity's community space in London. Ten adults (seven men and three women) were recruited through word of mouth at evening sessions run by the charity. Participants originated from various African, Asian, and Middle Eastern countries, which was representative of the wider service user population. To be included, participants had to be a UK-dwelling adult refugee and a service user of the charity. All interviews were done one-to-one and face-to-face using a semi-structured topic guide; they were sound recorded and transcribed verbatim. Data were analysed using thematic analysis. The study was approved by the Faculty Research Ethics Committee, Kingston University. Participants provided written informed consent and all data were anonymised. FindingsTwo interviews were excluded from analysis because of a considerable language barrier so that dialogue was insufficiently clear to draw meaning. Four key themes were identified: improved health, financial impact, charitable support, and safety awareness. Interviewees reported that free provision of a bicycle allowed them opportunities of free transport around their community, in turn facilitating improved access to education and work, while also allowing them to exercise. Involvement with The Bike Project also provided opportunities to develop meaningful and supportive relationships. InterpretationThis study suggests that provision of a free bicycle can benefit the refugee population. By facilitating active travel, cycling can empower this often-excluded group to feel more able to exercise and report improvements to their physical and mental health, and thus may have a wider impact on social inclusion of this vulnerable group and their use of health and social care resources. FundingNone.

Beyond the legislation- investing in sustainable transformation

Introduction: From April 2015, landmark legislation in Scotland established 31 new integrated health and social care organisations[1]. The Public Bodies (Joint Working) (Scotland) Act (2014) required NHS Boards and Local Authorities to establish one of two organisational models by April 2016. Each integration authority, with their health, social care and housing providers, community partners, patients, carers and service-users, developed a strategic plan and is using an integrated budget to commission the range of integrated services and community support to improve local population health. This paper discusses the critical capacity building support required to enable progress towards integrated care at scale. Description: Each new Integration Authority oversees an integrated budget of more than 60% of the health and social care resources, including all adult social care, adult primary and community health care, and some aspects of adult hospital care. Local progress is being measured through nine health and wellbeing outcomes supported by a suite of 23 indicators that track activity, resources and care experience. Targeted population: Local integration of adult community health and social care services with the option to include children’s health and social care services, criminal justice social work and housing support. Highlights: Capacity building to enable progress in implementing integrated care includes: Additional local analytical capacity to inform commissioning decisions and to make progress in linking health and social care data. Ringfenced funding of £300 million to enable investment in preventative supports and new models of anticipatory care and person centred care in the community. Technology Enabled care programme that has enabled over 25,000 more citizens to live safely in their own home, monitor their health at home and /or access specialised services remotely. A collaborative leadership programme and action learning to support practitioners to build new relationships and design new models of integrated care. Community intermediate care and advanced practice models that have enabled older people to spend around 3 million more days at home than would have been expected based on previous institutional care rates. Transferable lessons: Introducing new models of integrated care has been enabled by a new GP contract and development of enhanced interdisciplinary practice in primary care, supported by education and leadership programmes on people centred integrated care, including a new Masters programme. Progress on data sharing has been slower and a fully integrated electronic record remains elusive. Conclusions: Implementation of integrated care at scale is a long game requiring enabling supports across all dimensions of integration. Legislation, structural and financial integration have built a strong foundation for transformation but continuing support for leadership, workforce redesign, professional and functional integration remain priorities if we are to make integration 'business as usual'.