Carers in the welfare state : on informal care and support for carers in Sweden

  The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the ‘heavy end’ of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I). Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II). The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II). The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84. In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government’s special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III). Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government’s special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV). In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm. In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.

Department of Health and Children Evaluation of Home Care Packages

Department of Health and Children Evaluation of Home Care Packages Click here to download PDF 1.6mb

Frequency and determinants of urgent requests to home care agencies for community-dwelling elderly.

We analyzed a one-year case series and performed a longitudinal (4 month) cohort analysis of urgent requests made to home care agencies by and for their > or = 65 years old clients in order to estimate the frequency of unscheduled services delivered by home care agencies and to identify risk factors. All 40 home care agencies located in a Swiss region were included in the study and we registered 3,816 urgent requests (75/1,000 > or = 65 years residents per year). Among home care users, the presence of a urinary catheter, incontinence and the need for assistance in bathing were predictors of unscheduled services. Resources should be planned in order to help home care teams to handle unexpected, disruptive clusters of urgent requests that may compromise their scheduled activities.

Unlicensed personnel administering medications to older persons living at home : a challenge for social and care services

BACKGROUND: Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge. AIM: The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care. METHODS: Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis. RESULTS: According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality. CONCLUSIONS: Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients. IMPLICATIONS FOR PRACTICE: This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety.

Tradition, Change and Variation : Past and Present Trends in Public Old-age Care

The general aim of this dissertation is to describe and analyse how public old-age care in Sweden has developed and changed during the last century. The study applies a provider perspective on how care has been planned and professionally carried out. A broader social policy perspective, studying old-age care at central/national as well as local/municipal level, is also developed. A special focus is directed at the large local variation in care and services for the elderly. The empirical base is comprised of official documents and other public sources, survey data from interviews with elderly recipients of public old-age care, and official statistics on publicly financed and controlled old-age care and services. Study I addresses the development of old-age care in Sweden during the twentieth century by studying an important occupation in this field – the supervisors and their professional roles, tasks and working conditions. Throughout, the roles of supervisors have followed the prevailing official policy on the proper way to provide care for elderly people in Sweden; from poor relief at the beginning of the 1900s, via a generous level of services in the 1960s and 1970s, to today’s restricted and economy-controlled mode of operation. Study II describes and compares two main forms of public old-age care in Sweden today, home help services and institutional care. The care-load found in home-based care was comparable to and sometimes even larger than in service-homes and other institutions, indicating that large care needs among elderly people in Sweden today can be met in their homes as well as in institutional settings. Studies III and IV analyse the local variation in public old-age care in Sweden. During the last decades there has been an overall decline in home help services. The coverage of home help for elderly people shows large differences between municipalities throughout this period, and the relative variation has increased. The local disparity seems to depend more on historical factors, e.g., previous coverage rates, than on the present municipal situation in levels of need or local economy and politics. In an introductory part the four papers are linked together by an outline of the demographic situation and the social policy model for old-age care in Sweden. Trends that have been apparent over time, e.g. professionalisation and market orientation, are traced and discussed. Conflicts between prevailing ideologies are analysed, in regards to for instance home-based and institution-based care, social and medical culture, and local and central levels of decision-making. ’Welfare municipality’, ‘path dependency’, and ‘decentralisation’ are suggested as a conceptual framework for describing the large and increasing local variations in old-age care. Finally, implications of the four studies with regard to old-age care policy and further research are discussed.

Pressure Ulcers In Palliative home Care Patients: Prevalence And Characteristics

Persons in palliative care develop pressure ulcers (PU) as death approaches, but the extent of the problem is still unknown. The objectives were to identify the prevalence of pressure ulcers in people with cancer in palliative home care, compare the socio-demographic and clinical profile of patients with and without pressure ulcers, and analyze the characteristics of the ulcers. This descriptive, cross-sectional study included 64 people with advanced cancer in palliative home care. Twelve of them (18.8%) had PU, of whom 75.0% were men. The participants had one to three PU, amounting to 19 lesions, 89.4% of those developed at home and 47.4% at stage 3. The presence of PU was higher among those who had a history of previous wound. PU consisted of a significant event occurring in the studied population, indicating that preventive measures should be included in the home palliative care health team.


Unplanned nursing home short stay : elderly patients characteristics and 3-month outcomes.

Background: Nursing home short stays (NHSS) in the canton of Vaud have been introduced for respite care purpose. However, a growing number of older patients are urgently admitted from home (within 24h) or directly after hospital discharge (58% of all admissions in 2010). NHSS appears therefore as an increasingly important component of the health care system, but the characteristics of admitted patients have not been previously described. A better knowledge would contribute to identify specific care needs and enhance their care. Objectives: 1) To describe the characteristics of patients admitted in unplanned NHSS ( after hospital stay or urgently from home); 2) To determine living disposition 3-month after NHSS discharge. Method: Over a 18-month period, elderly patients with unplanned NHSS admission to 2 facilities in Lausanne were identified. Demographic, social, health, and functional data, as well as main reason for admission were collected. Death and place of living at 3-months were collected using the administrative database. Results: Overall, 114 patients (mean age 83.1 ± 6.2 years, 77% women, 84% living alone) were assessed, 80% being admitted from hospital. Mean score in Lawton's instrumental ADL before NHSS admission was 4.6 ± 2.5 and 69% of the patients were home care recipients (median number of weekly visits: 5 ± 3). Patients reported going out 4.2 ± 1.3 times/week and 56% reported at least one fall over the past year. Among the 91 patients coming from the hospital, main reason for admission was injury/limb immobilization (58%), recuperation (13%) and functional impairment in basic ADL (10%). Mean score at Katz's Basic ADL at admission was 3.7 ± 1.9. Overall, 90% of patients were identified with gait and balance impairment, 78% with cognitive impairment and 70% with polypharmacy (>6 different drugs). At 3-month after NHSS discharge (N = 92), 72% patients were living at home, 16% had been admitted to long term care, and 6% died. Among patients living at home at follow-up, 11% had been readmitted to hospital during the follow-up period. Conclusion: Older patients with unplanned NHSS admission show a high prevalence of functional, mobility, and cognitive impairments, as well as other geriatric syndromes. Specific measures should be considered during these stays to prevent further functional decline and, possibly, hospital readmission. Patients admitted with basic ADLs impairment might be candidate for higher levels of care (rehabilitation).

Supporting older people’s independent living at home through social and health care collaboration

Tässä tutkimuksessa tarkasteltiin ikäihmisten kotona asumista sosiaali- ja terveydenhuollon yhteistyön näkökulmasta. Tutkimuksen tarkoituksena oli lisätä ymmärrystä iäkkäiden kotihoidon asiakkaiden voimavaroista arjesta selviytymisen näkökulmasta, ja tutkia miten asiakkaiden hoito sosiaali- ja terveydenhuollon yhteistyönä toteutuu. Tutkimus oli poikkileikkaustutkimus, jossa sovellettiin kuvailevaa ja vertailevaa tutkimusasetelmaa. Tutkimusaineisto kerättiin yhden länsisuomalaisen kunnan kotihoidon asiakkailta (≥65 v.) ja heitä hoitavilta ammattihenkilöiltä. Kotihoidon 21 iäkästä asiakasta kuvasivat omia voimavarojaan arjesta selviytymisen näkökulmasta sekä kokemuksiaan hoidon toteutumisesta ammattihenkilöiden yhteistyönä. Aineisto kerättiin avoimella haastattelulla ja analysoitiin sisällön analyysillä. Lisäksi 25 kotihoidon ammattihenkilöä: 13 kotipalvelun työntekijää, 11 kotisairaanhoitajaa ja lääkäri kuvasivat kokemuksiaan iäkkään asiakkaan hoidon toteutumisesta ammattihenkilöiden yhteistyönä. Aineisto kerättiin fokusryhmähaastattelulla ja analysoitiin sisällön analyysillä. Näiden tulosten sekä aikaisemman kirjallisuuden perusteella laadittiin strukturoitu kyselylomake, jolla analysoitiin ja vertailtiin asiakkaiden ja ammattihenkilöiden näkemyksiä siitä, miten asiakkaiden hoito sosiaali- ja terveydenhuollon yhteistyönä toteutui. Esitestausten jälkeen kyselylomake lähetettiin 200 kotihoidon asiakkaalle ja 570 heitä hoitavalle kotihoidon työntekijälle: 485 kotipalvelun työntekijälle, 81 kotisairaanhoitajalle ja 4 lääkärille. Kyselyyn vastasi 120 asiakasta (60 %) ja 370 ammattihenkilöä (65 %). Ryhmien välisten erojen tarkastelussa käytettiin ristiintaulukointia, Pearsonin khin neliötestiä ja Fisherin tarkan todennäköisyyden testiä. Iäkkäiden asiakkaiden kuvauksissa voimavarat muodostuivat elämänhallinnan tunteesta ja toimintatahdon säilymisestä. Asiakkaat ammensivat arkeen voimaa harrastuksista ja sosiaalisesta verkostosta, mutta ulkopuolisten asettamat elämisen ehdot, terveydentilan heikkeneminen sekä yksinäisyys asettivat ikäihmisen ja hänen voimavaransa suurten haasteiden eteen. Tulokset osoittivat, että ammattihenkilöiden toiminta oli osittain ristiriidassa ikäihmisten omien odotusten kanssa, eikä se kaikilta osin tukenut asiakkaiden omia voimavaroja. Ammattihenkilöt tekivät hoitoon liittyviä päätöksiä ja toimintoja asiakkaiden puolesta, vaikka asiakkaille itselleen oli tärkeää elämänhallinnan tunne ja toimintatahdon säilyminen. Asiakkaiden voimavarojen tukemista moniammatillisena yhteistyönä vaikeuttivat ammattihenkilöiden vaikeus tunnistaa asiakkaiden omia voimavaroja sekä niitä uhkaavia tekijöitä, tiedon kulun ongelmat, tavoitteeton ja epäyhtenäinen tapa toimia sekä ammattihenkilöiden vastakkain asettuvat näkemyserot ja toimintatavat. Asiakkaiden ja ammattihenkilöiden näkemykset toteutetusta hoidosta erosivat toisistaan tilastollisesti merkitsevästi (p<0.05). Asiakkaat arvioivat sekä itsenäiseen toimintaan tukemisen että fyysisen, psyykkisen ja sosiaalisen tuen toteutuneen työntekijöitä huonommin. Yhteistyön kehittämishaasteita kotihoidossa ovat asiakkaan oman elämänsä asiantuntijuuden vahvistaminen, toimintakulttuurin muuttaminen asiakaslähtöiseksi tavoitteelliseksi toiminnaksi, ammattihenkilöiden roolien ja vastuun selkiyttäminen sekä tiedon kulun menetelmien kehittäminen. Tutkimus vahvistaa gerontologisen hoitotieteen tietoperustaa ja tuottaa uutta tietoa, jota voidaan soveltaa sosiaali- ja terveysalan koulutuksessa ja johtamisessa

HIV care and interdependence in Tanzania and Uganda

Within many communities in East Africa, people living with HIV are increasingly involved in delivering home-based care and healthcare for family members and peers. Such interdependent caring relations blur conventional boundaries between ‘care-givers’ and ‘care-recipients’, and constructions of 'service users' as dependent, passive recipients of healthcare. The participation of people living with HIV in healthcare provision, home-based care and peer support groups can enhance ‘relational autonomy’ for both care-givers and care-recipients, although such initiatives often play out in highly gendered ways. The care and support of people living with HIV, particularly the emotion work of caring, however, continues to be associated with women's and girls' assumed 'natural' nurturing roles and has been largely devalued and overlooked in HIV policy and practice to date.

Care, disability and HIV in Africa: diverging or interconnected concepts and practices?

Recent research and policy have recognised the central role of unpaid care-givers (often women and girls) in the global South. Disability rights perspectives, however, challenge the language of ‘care’ and ‘dependence’. Drawing on qualitative research with women living with HIV and children caring for them in Tanzania, and on learning from the National Community of Women Living with HIV and AIDS in Uganda (NACWOLA), this paper explores the divergences and interconnections between the concepts and practices of care, disability and HIV in the context of East Africa. Despite the development of interdependent caring relations, both care-givers and people living with HIV in Tanzania experience ‘diminished autonomy’. The participation of people living with HIV, including disabled people, in home-based care and in peer support groups, however, can enhance ‘relational autonomy’ for both care-givers and care-recipients. We reflect on opportunities and challenges for mutual learning and cross-movement advocacy by disabled people, people living with HIV and care-givers.

Comparing Patient-Centered Medical Home Implementation in Urban and Rural VHA Clinics: Results from the Patient Aligned Care Team (PACT) Initiative

Thesis (Master's)--University of Washington, 2016-06

Home on a care order: who the children are and what the care order is for

Compared to children in other placements, there is much less known about the characteristics and needs of children in the UK who are returned to their birth parents with a care order still in place. That is in spite of evidence to suggest they face more difficulties than young people in other placements. Based on a 2009 census of looked after children in Northern Ireland, just under 10% (n = 193) were found to be living at home under a care order. Case file reviews were conducted for a quarter of these young people (n = 47) to generate descriptive statistics showing a very diverse population. That was followed by semi-structured interviews with members of eight families (ten children and eight birth parent/s), providing transcripts for thematic analysis. Nearly half of the young people whose case files were reviewed had experienced at least one home placement breakdown, but nearly two thirds had a stable last home placement. Care orders appeared to serve two functions: to give legal authority to social services for the monitoring of placements, and to facilitate family access to family support services. Replacing some care orders with supervision orders might better align legal status and actual function.

Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

Cost comparison of hospital- and home-based treatment models for acute chronic obstructive pulmonary disease

This trial compared the cost of an integrated home-based care model with traditional inpatient care for acute chronic obstructive pulmonary disease (COPD). 25 patients with acute COPD were randomised to either home or hospital management following request for hospital admission. The acute care at home group costs per separation ($745, CI95% $595-$895, n = 13) were significantly lower (p < 0.01) than the hospital group ($2543, CI95% $1766-$3321, n = 12). There was an improvement in lung function in the hospital-managed group at the Outpatient Department review, decreased anxiety in the Emergency Department in the home-managed group and equal patient satisfaction with care delivery. Acute care at home schemes can substitute for usual hospital care for some patients without adverse effects, and potentially release resources. A funding model that allows adequate resource delivery to the community will be needed if there is a move to devolve acute care to community providers.