Informal Social Care Research Articles

P059 Informal care for those with multiple longer term conditions - a hidden burden?

Abstract Background/Aims Multiple long-term conditions (MLTC) refers to the co-existence of two or more chronic conditions. Rheumatic diseases (RMDs) are important long-term conditions which are common in individuals with MLTC. The effect of rheumatic disease on disability is well known and often requires support with activities of daily living, i.e. social care. However, while the presence of MLTC is known to be associated with social care need, the role of RMDs in driving social care need is unknown. This lack of data capture of social care resource use undermines healthcare strategy. We carried out two surveys in different parts of the country to ascertain the social care burden amongst those with RMDs. Methods An online cross-sectional survey to identify and characterise formal and informal social care use was sent to two different groups of patients with rheumatic and musculoskeletal disease. The first comprised participants within Norfolk Arthritis Register, who were emailed an invitation to complete the survey between March-July 2023. As part of Assembling the Data Jigsaw programme, the second group comprised patients attending the Salford Royal Hospital Rheumatology Department with text message invitations sent between October 2022-September 2023 via the DrDoctor app. All participants answered identical questions on formal and informal care provision and demographic characteristics. Logistic regression was used to identify factors associated with needing support. Results A total of 184 participants within the NOAR cohort completed the survey, comprising 128 (70%) women with a median age of 64 years. A total of 439 participants completed the survey in the Salford Royal Hospital cohort, comprising 326 (74%) women with a median age of 58 years. Rheumatoid arthritis was reported by 93 (73%) of the NOAR recruits and 136 (31%) of the Salford Royal Hospital cohort, with osteoarthritis the next most common with 37 (20%) and 112 (34%) of each cohort reporting this condition. Using self-reported data, 47% and 64% of the respective cohorts met the criteria for MLTC. For both cohorts, 30% reported needing four hours or fewer assistance per week, and 19% reported requiring >10 hours a week. Although infrequent or occasional help was usually provided informally by spouses, partners, family members or friends, 42 (23%) of the NOAR cohort and 70 (16%) of the Salford Royal Hospital cohort arranged formal care provision themselves without involving the council. Multivariable logistic regression of both cohorts found that those who were younger were more likely to have reported needing assistance with ADLs in the last month. MLTC was also associated with requiring help. Conclusion The majority of individuals engage informal support or arrange care without help from local authorities. These data are important for describing social care resource use and for determining healthcare strategy. Disclosure M. Yates: None. M. Soomro: None. A. Onajole: None. A. MacGregor: None. W. Dixon: None. J. McBeth: None. J.H. Humphreys: None.

The relationships between informal and formal social care for older people in England: A comparison before and after the Care Act 2014

ABSTRACT Social care is an integral part of the UK welfare system and plays an imperative role in promoting the well-being of older people. This study investigates the impacts of receiving informal social care on formal social care use among community-dwelling older people in England before and after the implementation of the Care Act 2014. Data came from the Health Survey for England for the years 2011 to 2018 (N = 17,292). Bivariate probit models were used to address the endogeneity issue. The analysis shows that receipt of informal care substitutes for formal care. Informal care had a strong substitution effect on formal personal care before 2015, which was significantly weakened after 2015. While the receipt of formal personal care has been increasingly “carer-blind,” that of formal domestic care depends on the availability of informal carers and personal affordability, which may result in unmet care needs.

Living in a segregated community? Interaction between families and service organizations supporting people with intellectual disabilities during the COVID-19 pandemic

Summary Individuals with intellectual disabilities who might have been previously placed into segregated institutions now live independently in the community, supported by the necessary community care services. Nevertheless, social inclusion can be deemed successful only if they can positively interact with the various microsystems of the community. The disruption of social service provision due to the COVID-19 pandemic allowed us to evaluate other systems of support in the community. By adopting a bioecological perspective, qualitative methods are used to examine the interactions between people with intellectual disabilities and their social environment during the pandemic primarily based on focus group sessions with 17 social workers and 12 caregivers. Findings Three overarching themes are identified through a thematic analysis: (1) limited social ties with the community that could provide support; (2) professional support as the main source of assistance; and (3) limited resources on how to care for people with intellectual disabilities. Applications The results show that unilateral systems of support with limited participation of other systems lead people with intellectual disabilities to live segregated lives, even though they reside in the community. To fully realize the right of inclusion in society of all people with intellectual disabilities, further efforts are required to promote informal social care for people with intellectual disabilities. There is a need for a shared-care model that provides care in the community by the community through the establishment of neighborly relations and expansion of the social networks of people with intellectual disabilities.

Exploring the Differences in Social Care Needs by the Degree of Obesity among Older Adults in England: A Cross-Sectional Study

Objectives. The study aims to determine the social care need among overweight and obese older adults by identifying the number of social care support receipts from different sources. Methods. A sample of 5640 participants (aged 50 years and over) taken from the English Longitudinal Study of Ageing Wave 8 dataset. Multivariate logistic regression analysis was performed to explore the relationship between the study variables. Results. The statistical analyses demonstrated that overweight and obese older adults are the recipients of increasing amounts of informal social care. Moderate and morbidly obese participants are the recipients of increasing amounts of formal care compared to their normal-weight counterparts, with morbid obesity being a strong predictor for receipt of formal care. Conclusions. The present study’s findings demonstrate that for older adults aged 50 years presence of morbid obesity is a strongest predictor for receipt of formal care, and their well-being is not associated with formal or informal care receipt. The findings on how wider lifestyle factors influence the number of social care receipts, from different sources, may help policymakers and healthcare providers to allocate limited resources for adult social care services and promote healthy ageing rather than just focusing on weight loss alone.

Informing patterns of health and social care utilisation in Irish older people according to the Clinical Frailty Scale

Background: There is increasing policy interest in the consideration of frailty measures (rather than chronological age alone) to inform more equitable allocation of health and social care resources. In this study the Clinical Frailty Scale (CFS) classification tree was applied to data from The Irish Longitudinal Study on Ageing (TILDA) and correlated with health and social care utilisation. CFS transitions over time were also explored. Methods: Applying the CFS classification tree algorithm, secondary analyses of TILDA data were performed to examine distributions of health and social care by CFS categories using descriptive statistics weighted to the population of Ireland aged ≥65 years at Wave 5 (n=3,441; mean age 74.5 (SD ±7.0) years, 54.7% female). CFS transitions over 8 years and (Waves 1-5) were investigated using multi-state Markov models and alluvial charts. Results: The prevalence of CFS categories at Wave 5 were: 6% ‘very fit’, 36% ‘fit’, 31% ‘managing well’, 16% ‘vulnerable’, 6% ‘mildly frail’, 4% ‘moderately frail’ and 1% ‘severely frail’. No participants were ‘very severely frail’ or ‘terminally ill’. Increasing CFS categories were associated with increasing hospital and community health services use and increasing hours of formal and informal social care provision. The transitions analyses suggested CFS transitions are dynamic, with 2-year probability of transitioning from ‘fit’ (CFS1-3) to ‘vulnerable’ (CFS4), and ‘fit’ to ‘frail’ (CFS5+) at 34% and 6%, respectively. ‘Vulnerable’ and ‘frail’ had a 22% and 17% probability of reversal to ‘fit’ and ‘vulnerable’, respectively. Conclusions: Our results suggest that the CFS classification tree stratified the TILDA population aged ≥65 years into subgroups with increasing health and social care needs. The CFS could be used to aid the allocation of health and social care resources in older people in Ireland. We recommend that CFS status in individuals is reviewed at least every 2 years.

Informing patterns of health and social care utilisation in Irish older people according to the Clinical Frailty Scale.

Background: There is increasing policy interest in the consideration of frailty measures (rather than chronological age alone) to inform more equitable allocation of health and social care resources. In this study the Clinical Frailty Scale (CFS) classification tree was applied to data from The Irish Longitudinal Study on Ageing (TILDA) and correlated with health and social care utilisation. CFS transitions over time were also explored. Methods: Applying the CFS classification tree algorithm, secondary analyses of TILDA data were performed to examine distributions of health and social care by CFS categories using descriptive statistics weighted to the population of Ireland aged ≥65 years at Wave 5 (n=3,441; mean age 74.5 (SD ±7.0) years, 54.7% female). CFS transitions over 8 years and (Waves 1-5) were investigated using multi-state Markov models and alluvial charts. Results: The prevalence of CFS categories at Wave 5 were: 6% 'very fit', 36% 'fit', 31% 'managing well', 16% 'vulnerable', 6% 'mildly frail', 4% 'moderately frail' and 1% 'severely frail'. No participants were 'very severely frail' or 'terminally ill'. Increasing CFS categories were associated with increasing hospital and community health services use and increasing hours of formal and informal social care provision. The transitions analyses suggested CFS transitions are dynamic, with 2-year probability of transitioning from 'fit' (CFS1-3) to 'vulnerable' (CFS4), and 'fit' to 'frail' (CFS5+) at 34% and 6%, respectively. 'Vulnerable' and 'frail' had a 22% and 17% probability of reversal to 'fit' and 'vulnerable', respectively. Conclusions: Our results suggest that the CFS classification tree stratified the TILDA population aged ≥65 years into subgroups with increasing health and social care needs. The CFS could be used to aid the allocation of health and social care resources in older people in Ireland. We recommend that CFS status in individuals is reviewed at least every 2 years.

Leadership and Peer Counseling Program: Evaluation of Training and Its Impact on Filipino Senior Peer Counselors.

Senior volunteers represented a significant, mostly untapped lay resource of informal social care. In this study, we evaluated the effectiveness of the training program on improving senior volunteers’ competency toward peer counseling, and explored its impact on their well-being after three months of the program implementation. We conducted a pre- and post-intervention analysis among 60 senior volunteers aged 60–82 years. They participated in 40 h of training and performed weekly peer counseling home visits for three months. We evaluated the program using survey questionnaires, trainer observation and debriefing, and focus group discussions. After the training, peer counselors showed a significant improvement (p < 0.001) in knowledge (17.1 versus 22.3) and skills (17.0 versus 17.9). All of them met the minimum required passing level of 70% for the knowledge test, and their overall performance was satisfactory as rated by two independent trainers. After three months, peer counselors showed a significant improvement (p < 0.001) in their subjective well-being (d = 0.69) and depressive symptoms (d = −0.67). Filipino senior volunteers could be trained to serve as peer counselors in their communities. This program improved their competency and well-being. Future research is warranted to determine whether the provision of counseling by them will affect the health outcomes of the target population.

Modelling social care provision in an agent-based framework with kinship networks.

Current demographic trends in the UK include a fast-growing elderly population and dropping birth rates, and demand for social care among the aged is rising. The UK depends on informal social care—family members or friends providing care—for some 50% of care provision. However, lower birth rates and a greying population mean that care availability is becoming a significant problem, causing concern among policy-makers that substantial public investment in formal care will be required in decades to come. In this paper, we present an agent-based simulation of care provision in the UK, in which individual agents can decide to provide informal care, or pay for private care, for their loved ones. Agents base these decisions on factors including their own health, employment status, financial resources, relationship to the individual in need and geographical location. Results demonstrate that the model can produce similar patterns of care need and availability as are observed in the real world, despite the model containing minimal empirical data. We propose that our model better captures the complexities of social care provision than other methods, due to the socioeconomic details present and the use of kinship networks to distribute care among family members.

Using an Integrated Clinical and Functional Assessment Tool to Describe the Use of Social and Medical Care in an Urban Community-Dwelling Swedish Older Population

ObjectivesTo describe the use of social and medical care services in a community-dwelling older population from Stockholm, Sweden, using an integrated clinical and functional assessment tool. DesignStudy based on data from the longitudinal community-based Swedish National Study on Aging and Care in Kungsholmen. Setting and ParticipantsRandom sample of people >65 years of age living in the community in central Stockholm between March 2001 and June 2004 (N = 2368). MeasuresHealth status was measured with a health assessment tool (HAT), which combines 5 indicators (gait speed, cognitive function, chronic multimorbidity, mild disability, severe disability) collected during Swedish National Study on Aging and Care in Kungsholmen clinical examinations. The amount of formal and informal social care was self-reported in hours per month and recorded by trained nurses at baseline and the 3-year follow-up for those ≥78 years of age at baseline. Data on hospital admissions, 30-day readmissions, days spent in the hospital, primary care visits, and specialist visits were obtained from Stockholm County Council registers (2001–2007). ResultsAt baseline, 10% of the sample received formal social care and 11% received informal care. Annually between baseline and the 3-year follow-up, 15% were admitted to the hospital, 5% were readmitted, 78% visited a specialist, and 89% visited primary care. Those with the best HAT scores received 0.02 hours/month of formal care; those with the worst, 34 h/mo. The corresponding numbers for other variables were 0.02 vs 73 h/mo of informal care, 2 vs 11 hospital admissions per 10 persons/year, 44 vs 226 hospital days per 10 persons/y, 0.4 vs 2 30-day readmissions per 10 persons/y, 37 vs 78 specialist visits per 10 persons/y, and 50 vs 327 primary care visits per 10 persons/y. Conclusions/ImplicationsBecause of its high discriminative power, the easy-to-use HAT index could help decision makers to plan medical and social care services.

Good-quality social care for people with Parkinson’s disease: a qualitative study

ObjectivesThe study examines the meaning of good-quality social care for people with Parkinson's disease and their carers. It identifies, from their perspective, the impact of good-quality social care on health...

OA2 Chinese migrant peasant workers and the contradictory demands of filial piety in neo-liberal chinese society: a case study of filial end-of-life care in langzhong city.

Many scholars claim that recent changes to Chinese society since economic reform have challenged longstanding forms of informal social care, such as filial piety. For instance there is a societal tension at work in contemporary Chinese society today. On the one hand decreasing co-residence in multi-generational households caused by rural-urban migration, population ageing, the fall in fertility and 'One-Child Policy', and women's increasing participation in the labour market, emphasises an individualised, wage earning centred society. On the other hand, the Chinese government has sought to enforce a form of institutionalised filial piety through policies that legally require younger generations fulfil the full responsibility of care as there is no institutionalised equivalent of the welfare state to provide e.g. home help or personal care to the elderly whose relatives live and work at some distance. This places many younger generations in the contradiction of having to comply with neo-liberal labour market demands while also fulfilling state enforced filial piety. This research is to look at how Chinese migrant worker experience perceived filial responsibilities in relation to End-of-Life care for parents diagnosed with cancer in the current Chinese context. My PhD, based on interviews with migrant peasant workers caught in this dilemma by the demands of having a terminally ill parent, examines how Chinese migrant peasant workers negotiate and conduct their filial practices. The preliminary analysis of the interviews suggests that 'Filial Piety' is getting reconstructed in multifaceted ways as they negotiate the care dilemmas they face. The way they engage with the concept of filial piety enables and constrains how they can think about and practically organise their parents' care. The result would shed a light on evaluation of and suggestions for governmental policy-makings, such as the newly implemented Parent-Visiting law in China, in terms of better reinforcing familial value and equipping end-of-life care, as well as taking into account of the specificity of peasant migrant workers' socio-economic status quo.

Older People's Family Contacts and Long‐term Care Expenditure in OECD Countries: A Comparative Approach Using Qualitative Comparative Analysis

AbstractIn recent decades there has been a suggestion that public and private long‐term care (LTC) expenditure might be replacing traditional family care for older people. The decline of family contact is known to be more advanced in some OECD countries than others, with southern Europe identified as where family contact is still strong. This article explores at a country level whether there is an association between levels of expenditure on long‐term care and the availability of family contacts. Qualitative Comparative Analysis is used as a comparative method, so as to use national quantitative indicators with a small sample of countries. An association between higher levels of family contact and lower levels of expenditure on LTC is suggested, but it is weakened by a number of untypical cases. Countries that defy this relationship have government care policies that seek to promote informal social care through the family contact that continues to be available. Austria, Canada, Great Britain and Japan are discussed in this context.

Civic Labour or Doulia? Care, Reciprocity and Welfare

This article discusses the grounds on which those who provide informal social care for dependent adults and children can be held to warrant public support, and what obligations they should accept in return. It outlines two interpretations of the rights and responsibilities of such care workers: Stuart White's notion of care as civic labour and Eva Feder Kittay's principle of doulia. It shows that these interpretations reflect different understandings of the self and of reciprocity. The conclusion is that Kittay's writings better reflect the relationality of care, but that it is still possible to justify some forms of welfare conditionality.

Privacy and Confidentiality as Obstacles to Interweaving Formal and Informal Social Care: The Boundaries of the Private Realm

Community care provides a setting in which both public, formal social care and private, informal, social care have the potential to complement one another in meeting the needs of dependent persons. The theoretical implications of "interweav ing" formal and informal care are considered in the light of concerns about privacy and confidentiality which may limit such potential collaboration. The obstacles to those working in welfare agencies tapping informal networks are highlighted. Em pirical evidence from the study of neighbors and neighborhood care is presented to show that drawing boundaries around a private sphere belonging to the self and the family is universal and that various defences are erected against gossip and the local sharing of personal information. The implications of such privacy concerns for interweaving are considered in terms of balance theory, the substitutability of carers, the circumstances in which information may be shared with third parties, the use of natural leaders, and problems of professional responsibility. The need to rethink the boundaries of the private realm is suggested.

Integrating Formal and Informal Social Care: Social Action Approach

Although not a new concept, in recent years at a time of economic recession and cuts in state welfare services, informal social care has become an important feature of social policy. However, social groupwork practice has continued to focus on working with artificial groups with individualistic therapeutic intentions. Based on experience of working with peer groups of young people, the author advocates a 'social action' model of groupwork which is concerned with mutual aid, but not as an alternative or second best to state provision, nor in conventional terms as means for treating, controlling or providing for people defined as deviant or dependent. Such an approach requires a shift in the paradigm of practice from being 'essentially personalistic' to giving 'primary attention to the way in which public issues penetrate private troubles'. The author argues that the 'social action' approach can be extended to work with other client groups and in a range of social work settings.

Integrating Formal and Informal Social Care: A Conceptual Framework

Social services in the US and elsewhere are experiencing a paradigm shift. This shift involves a move from a personalistic to an 'ecological perspec tive' on human development as well as a shift from an almost exclusive preoccupation with 'formal' (professional) helping to a growing recogni tion of the importance of'informal (lay) helping' for clients in need for help (Bronfenbrenner, 1979; Garbarino, 1981; Whittaker and Garbarino, 1983). Interest in the relationship between formal and informal helping in social services springs from diverse sources:

Integrating Formal and Informal Social Care: An Example from a Rural Area in Switzerland

Integrating Formal and Informal Social Care: An Example from a Rural Area in Switzerland Get access GISELA PERREN KLINGLER, GISELA PERREN KLINGLER Sozialmedizinisches Regionalzentrum visp/Westlich-Raron, St Martiniplatz1, 3930 VISP, Switzerland Search for other works by this author on: Oxford Academic Google Scholar ROSE MARIE ZUMOFEN ROSE MARIE ZUMOFEN Sozialmedizinisches Regionalzentrum visp/Westlich-Raron, St Martiniplatz1, 3930 VISP, Switzerland Search for other works by this author on: Oxford Academic Google Scholar The British Journal of Social Work, Volume 16, Issue supp1, 1986, Pages 65–70, https://doi.org/10.1093/oxfordjournals.bjsw.a055297 Published: 01 May 1986

Policies to Promote Informal Social Care: Some Reflections on Voluntary Action, Neighbourhood Involvement, and Neighbourhood Care

ABSTRACTPolicies to promote informal social care have particular importance for elderly people, since a substantial minority of them are in receipt of informal care from kin, neighbours and friends, and the majority of those living in their own homes who receive informal care are themselves elderly. Yet informal care has not had the attention it deserves, compared to care provided by statutory, commercial or organised voluntary effort. This paper focuses on neighbourhood care, drawing on the results of a five-year research programme. Three types of neighbourhood care are examined: voluntary action for neighbourhood involvement, voluntary action for informal care, and voluntary action for neighbourhood care. Neighbourhood involvement is increasingly a political matter, with local organisation tied to specific local issues. Informal care has little directly to do with local involvement. Nine-tenths of such care is provided by kin, though there is scope for greater local action. Voluntary action for neighbourhood care is encouraged particularly by pressure-group activism, self-help organisations and support for carers. Effective informal care requires a higher degree of competence and the establishment of contexts for reciprocity. Policies in this area need to provide modest financial resources, greater information exchange and support for carers.

Realities of Neighbourhood Care: The interactions between statutory, voluntary and informal social care

In the light of the appreciable ambiguities about the nature of both neighbouring and neighbourhood care, in fact neighbourhood care may not be a very useful focus for analysis at all. The relationships between forms of care in which we are most interested, and between those forms of care and other structures of society, may well best be grasped if we abandon the ‘problem’ of neighbourhood and neighbourliness for the time being and instead redefine our concerns in terms of the distinction proposed by the Wolfenden Committee between the formal and the informal systems of care. Moving away from the essentially spatial references of the notion of neighbourhood towards the more thoroughly social conception implicit in that distinction may be the breakthrough which earlier forays into the maze of definitions of neighbourhood and its related categories seemed to demand. Perhaps we should now approach the matter a different way — by asking in what ways within an overall system of social care the formal and informal sectors could be drawn together in highly localized sites (neighbourhoods) in complementary, mutually supportive relationships.