The stress process in palliative cancer care:A qualitative study on informal caregiving and its implication for the delivery of care

Objective: The primary objective of this study was to examine how the comprehensive nature of the Stress Process Model could elucidate on the stressors associated with caring for a palliative cancer patient. Method: A qualitative research strategy involving home-based face-to-face interviews with 12 bereaved family caregivers was used to examine the caregiving experience. Results: The primary stressors associated with caring for the palliative cancer care patients stemmed from care recipient symptoms and personal care needs. The absence of adequate support from the formal health care delivery system was a consistent message from all participants. There was evidence of financial stress primarily associated with the purchase of private home care to supplement formal care. In contrast, the resources that family caregivers relied on to moderate the stressful effects of caregiving included extended family, friends, and neighbors. While the stress of direct caregiving was high, the study revealed that formal care was also a significant source of stress for family caregivers. Conclusion: It was concluded that an appropriately financed, integrated system of care that followed a person-centered philosophy of care would best meet the needs of the patient and his or her family. © The Author(s) 2010.

The relationship between informal caregiving and mortality: an analysis using the ONS Longitudinal Study of England and Wales.

BACKGROUND:

Many studies have suggested that caregiving has a detrimental impact on health. However, these conclusions are challenged by research which finds evidence of a comparative survivorship advantage, as well as work which controls for group differences in the demand for care.

METHODS:

We use a large record linkage study of England and Wales to investigate the mortality risks of carers identified in the 2001 Census. The analysis focuses on individuals aged 35-74 living with others in private households and a distinction is made between those providing 1-19 and 20 or more hours of care per week. Logit models identify differences in carers' health at baseline and postcensal survival is analysed using Cox proportional hazards models.

RESULTS:

12.2% of study members reported providing 1-19 h of care and 5.4% reported providing 20 or more hours. While carers were significantly more likely to report poorer health at baseline, survival analyses suggested that they were at a significantly lower risk of dying. This comparative advantage also held when the analyses were restricted to individuals living with at least one person with poor health.

CONCLUSIONS:

The comparative mortality advantage revealed in this analysis challenges common characterisations of carers' health and draws attention to important differences in the way carers are defined in existing analyses. The survival results are consistent with work using similar data for Northern Ireland. However, the study also affords more uniform conclusions about carers' baseline health and this provides grounds for questioning existing hypotheses about the reasons for this advantage.

Bereavement After Informal Caregiving: Assessing Mental Health Burden Using Linked Population Data

Methods. We linked prescription records for antidepressant and anxiolytic drugs to characteristics and life-event data of members of the Northern Ireland Longitudinal Study (n = 317 264). Using a case-control design, we fitted logistic regression models, stratified by age, to model relative likelihood of mental health problems, using the proxy measures of mental health–related prescription.

Results. Both caregivers and bereaved individuals were estimated to be at between 20% and 50% greater risk for mental health problems than noncaregivers in similar circumstances (for bereaved working-age caregivers, odds ratio = 1.41; 95% confidence interval = 1.27, 1.56). For older people, there was no evidence of additional risk to bereaved caregivers, though there was for working-age people. Older people appeared to recover more quickly from caregiver bereavement.

The Competing demands of employment and informal caregiving to disabled elders.

Mode of access: Internet.

Informal caregiving and mental ill health – differential relationships by workload, gender, age and area-remoteness in a UK region

Informal caregiving can be a demanding role which has been shown to impact on physical, psychological and social wellbeing. Methodological weaknesses including small sample sizes and subjective measures of mental health have led to inconclusive evidence about the relationship between informal caregiving and mental health. This paper reports on a study carried out in a UK region which investigated the relationship between informal caregiving and mental ill health. The analysis was conducted by linking three datasets, the Northern Ireland Longitudinal Study, the Northern Ireland Enhanced Prescribing Database and the Proximity to Service Index from the Northern Ireland Statistics and Research Agency. Our analysis used both a subjective measure of mental ill health, i.e. a question asked in the 2011 Census, and an objective measure, whether the respondents had been prescribed antidepressants by a General Practitioner between 2010 and 2012. We applied binary logistic multilevel modelling to these two responses to test whether, and for what sub-groups of the population, informal caregiving was related to mental ill health. The results showed that informal caregiving per se was not related to mental ill health although there was a strong relationship between the intensity of the caregiving role and mental ill health. Females under 50, who provided over 19 hours of care, were not employed or worked part-time and who provided care in both 2001 and 2011 were at a statistically significantly elevated risk of mental ill health. Caregivers in remote areas with limited access to shops and services were also at a significantly increased risk as evidenced by prescription rates for antidepressants. With community care policies aimed at supporting people to remain at home, the paper highlights the need for further research in order to target resources appropriately.

A systematic review of the psychobiological burden of informal caregiving for patients with dementia: focus on cognitive and biological markers of chronic stress

As the physiological impact of chronic stress is difficult to study in humans, naturalistic stressors are invaluable sources of information in this area. This review systematically evaluates the research literature examining biomarkers of chronic stress, including neurocognition, in informal dementia caregivers. We identified 151 papers for inclusion in the final review, including papers examining differences between caregivers and controls as well as interventions aimed at counteracting the biological burden of chronic caregiving stress. Results indicate that cortisol was increased in caregivers in a majority of studies examining this biomarker. There was mixed evidence for differences in epinephrine, norepinephrine and other cardiovascular markers. There was a high level of heterogeneity in immune system measures. Caregivers performed more poorly on attention and executive functioning tests. There was mixed evidence for memory performance. Interventions to reduce stress improved cognition but had mixed effects on cortisol. Risk of bias was generally low to moderate. Given the rising need for family caregivers worldwide, the implications of these findings can no longer be neglected.

The meaning of informal BMT caregiving

Objectives. The aims of this qualitative descriptive exploratory study were to (1) describe informal caregiver commitment in informal caregiving; (2) describe caregiver expectations in informal caregiving; (3) describe caregiver role negotiation in informal caregiving, (4) identify other important caregiver energy sources; and (5) refine the conceptual model of Informal Caregiving Dynamics based on the study results. ^ Methods. Participants were 40 informal caregivers of blood and marrow transplant patients being treated at a comprehensive cancer center who told their caregiving stories in an audiotaped dialogue. Patients consented to have their caregivers contacted about the study and to have information collected from their medical records. To address the specific aims, the dialogues were analyzed for major elements and themes with an adaptation of the descriptive exploratory method. ^ Findings. Commitment was redefined as enduring caregiver responsibility that inspires life changes to make the patient a priority. Commitment calls caregivers to supportive presence and self-affirming loving connection with the patient. Expectation management was defined as envisioning the future and yearning to return to normal. Expectation management includes taking one day at a time, gauging behavior from past experiences with the patient, and reconciling anticipated to actual treatment twists and turns. Role negotiation was defined as appropriate pushing by the caregiver toward patient recovery and independence after getting a handle on complex care that demands shared responsibilities. Role negotiation happens as caregivers determine action with attention to patient voice and vigilantly bridge communication between patients and the health care system. Three additional energy sources of caring for self, gaining insight, and connecting with others, were identified and added to the model as underpinnings for commitment, expectation, and role negotiation respectively. ^ Discussion and implications. Methods of supporting informal caregivers that deserve investigation include consistent acknowledgment of caregiver contribution to patient care; provision of clear, present-focused information; opportunities to reconcile expectations with outcomes by developing a coherent caregiving story; and encouragement to maintain good health habits while caregiving. Patient contribution to the dynamics of caregiving warrants future research attention as does change in energy sources over time as a caregiver. ^

Turnover intentions of employees with informal eldercare responsibilities: The role of core self-evaluations and supervisor support

As longevity increases, so does the need for care of older relatives by working family members. This research examined the interactive effect of core self-evaluations and supervisor support on turnover intentions in two samples of employees with informal caregiving responsibilities. Data were obtained from 57 employees from Australia (Study 1) and 66 employees from the United States and India (Study 2). Results of Study 1 revealed a resource compensation effect, that is, an inverse relationship between core self-evaluations and turnover intentions when supervisor care support was low. Results of Study 2 extended these findings by demonstrating resource boosting effects. Specifically, there was an inverse relationship between core self-evaluations and subsequent turnover intentions for those with high supervisor work and care support. In addition, employees' satisfaction and emotional exhaustion from their work mediated the inverse relationship between core self-evaluations and subsequent turnover intentions when supervisor work support and care support were high. Overall, these findings highlight the importance of employee- and supervisor-focused intervention strategies in organizations to support informal caregivers.

Are caregiving responsibilities associated with non-attendance at breast screening?

Background: Previous research showed that deprived individuals are less likely to attend breast screening and those providing intense amounts of informal care tend to be more deprived than non-caregivers. The aim of this study was to examine the relationship between informal caregiving and uptake of breast screening and to determine if socio-economic gradients in screening attendance were explained by caregiving responsibilities.

Relación entre el número de horas de cuidado informal y el estado de salud mental de las personas cuidadoras

Fundamento: La salud mental de las personas cuidadoras se ve perjudicada por las tareas de cuidado. Son necesarios estudios que especifiquen la influencia de diversas variables en la asociación entre cuidado informal y salud mental. El objetivo del trabajo es analizar los efectos del tiempo dedicado al cuidado informal en la salud mental por sexo según el tipo de personas dependientes. Métodos: Los datos que se utilizaron fueron los de la Encuesta Nacional de Salud 2006, cuya muestra estaba compuesta por 29.478 participantes. Variables: salud mental (GHQ-12), tiempo de cuidado, edad, clase social y apoyo funcional (Duke-UNC). Se realizó análisis de regresión logística para determinar la probabilidad de contar con mala salud mental según horas de cuidado, ajustado por edad, clase social y apoyo funcional. Resultados: Las mujeres presentan peor salud mental a partir de 97 horas semanales en el cuidado a menores (OR=1,372), de 25 horas en el cuidado a personas mayores de 74 años (OR=1,602 entre 25 y 48 horas; OR=1,467 49-96h; OR=1,874 97-168h) y cuando dedican alguna hora al cuidado de personas adultas con discapacidad (OR=1,996 0-24h; OR=2,507 25-48h; OR=3,016 49-96h; OR=1,651 97-168h). Los varones muestran deterioro de la salud psicológica cuando dedican un elevado número de horas al cuidado de personas mayores de 74 años (OR=2,810 97168h.) y personas con discapacidad (OR=3,411 97-168h.) y cuando dedican de 0 a 24h al cuidado de menores (OR=1,595). Conclusiones: El efecto del número de horas de cuidado en la salud mental de las personas cuidadoras está influido por el tipo de persona dependiente y por el sexo de la persona cuidadora.

Living on the edge : Social exclusion and the receipt of informal care in older people

Older people have been identified as being at risk of social exclusion. However, despite the fact that care is commonly required in later life and the majority of that care provided by informal carers, a connection between social exclusion and informal care-receipt has rarely been considered. The aim of this study was to examine how informal care-receipt is related to social exclusion. A face-to-face questionnaire survey on social exclusion and informal care-receipt was carried out among older people (n=1255) living in Barnsley, United Kingdom. Multivariable analyses examined the association between social exclusion and categories of informal care-receipt: care receiver; assurance receiver; non-receiver with no need; non-receiver with need. Compared to being a non-receiver with no need participants were more likely to be a care receiver or assurance receiver if they had higher levels of social exclusion. The highest level of social exclusion, however, was found in non-receivers with need. Despite a lack of informal care and support, formal practical support and personal care was also low in this latter group. Findings are discussed in relation to the conceptualisation of care-receipt and how contact with medical services could be an opportunity for identification and appropriate referral of non-receivers with need.

Quem cuida do cuidador?: o custo invisível do acto de cuidar

O envelhecimento da população será um dos fenómenos mais importantes das próximas décadas, afectando as estruturas de apoio aos idosos assim como às suas famílias. É um fenómeno importante porque pessoas de diferentes idades, com diferentes capacidades, interesses e necessidades apresentam diferentes problemas de saúde e necessitam diferentes soluções e abordagens. Assim um cenário denominado de demografia da idade, ou gray power, emergiu no último século. Da literatura emerge a importância da família na resposta às necessidades e dependências de um ente querido idoso. Porém os cuidadores informais envolvem-se totalmente no cuidado sem possuírem o adestramento técnico, o que potencia situações de stress para o cuidador e mesmo para o idoso receptor de cuidados. Na recolha da amostra, foi utilizada a entrevista e o exame físico na aplicação de inquérito. (81 idosos e 86 cuidadores). Foi utilizada a análise de conteúdo nas respostas abertas e análise quantitativa de carácter estatístico, descritivo e inferencial, para o tratamento dos dados. Os resultados sugerem que: a) ambas as amostras manifestam problemas de saúde, porém os idosos apresentam situações mais graves; b) os familiares dos idosos, pelo acto de cuidar possuem elevados padrões de stress; c) os cuidadores informais necessitam de apoio técnico para desempenharem as suas funções. Como conclusão refere-se que o stress vivido pelo cuidador interfere na sua saúde e qualidade de vida, necessitando em consequência de apoio emocional e institucional; para muitos idosos dependentes existe a real necessidade dos Cuidados Continuados de proximidade e de Cuidados Paliativos.

Performance of long-term care systems in Europe. ENEPRI Policy Brief No. 13, December 2012

The evaluation of long-term care (LTC) systems carried out in Work Package 7 of the ANCIEN project shows which performance criteria are important and – based on the available information – how European countries score on those criteria. This paper summarises the results and discusses the policy implications. An overall evaluation was carried out for four representative countries: Germany, the Netherlands, Spain and Poland. Of the four countries, the Dutch system has the highest scores on quality of life of LTC users, quality of care and equity of the LTC system, and it performs the secondbest after Poland in terms of the total burden of care (consisting of the financial burden and the burden of informal caregiving). The German system has somewhat lower scores than the Dutch on all four dimensions. The Polish system excels in having a low total burden of care, but it scores the lowest on quality of care and equity. The Spanish system has few extreme scores. Some important lessons are the following. The performance of a LTC system is a complex concept where many dimensions have to be included. Specifically, the impact of informal caregiving on the caregivers and on society should not be forgotten. The role of the state in funding and organising LTC versus individual responsibilities is one of the most important differences among countries. Choices concerning private funding and the role of informal care have a large effect not only on the public expenditures but also on the fairness of the system. International research into the relative preferences for the different performance criteria could produce a sound basis for the weights used in the overall evaluation.

Skyddandets förnuft : En studie om anhöriga till hjälpbehövande äldre som invandrat sent i livet

This dissertation aims to examine and deepen the knowledge of family member caregiving where the care recipient is an elderly person who immigrated late in life. It also aims to contribute to the knowledge of the complexities underlying informal care giving and add to our understandings of what it means to be an immigrant in Sweden. The caregiver is in focus. The research conducted is explorative and partly inductive. The main material used is a qualitative interview study carried out with family members from different countries who are providing informal care to elderly immigrant relatives. The analysis gives three patterns of caregiving. One shows help from informal caregivers only who are not compensated economically. Another shows help from family members who are compensated. The third shows help from family members and staff from the public care system. Three ideal-typical informal caregiver roles show different positions vis-à-vis the new: “guardian”, “filter” and “reinterpreter of traditional care ideals”. Swedish born and immigrated informal caregivers are also compared through analysis of data gathered in telephone interviews with a representative selection of inhabitants in the County of Stockholm. A philosophy of action together with theory on integration and multiculturalism serves as theoretical frameworks to understand discrepancies and ambiguities in the data. Young immigrants experience different integration processes than do the older ones. They strive to protect older family members from changes linked to the migration experience. Talk about dependence on culture underlines family feelings and legitimates the processes of protection. Preconceptions about great differences between Swedish born and immigrant families are not supported by quantitative data. A conclusion is that protection can be understood in relation both to the traditional and the new, the latter in the forms of meetings with Swedish society where unequal relations prevail. It is a kind of counter-strategy where the range of actions is diminished, and thus it has its own logic. Protection can be loosened up when the circumstances change and the range of actions grow.

Performance of Long-Term Care Systems in Europe. ENEPRI Research Report No. 117, 21 December 2012

This report evaluates the performance of long-term care (LTC) systems in Europe, with a special emphasis on four countries that were selected in Work Package 1 of the ANCIEN project as representative of different LTC systems: Germany, the Netherlands, Spain and Poland. Based on a performance framework, we use the following four core criteria for the evaluation: the quality of life of LTC users, the quality of care, equity of LTC systems and the total burden of LTC (consisting of the financial burden and the burden of informal caregiving). The quality of life is analysed by studying the experience of LTC users in 13 European countries, using data from the Survey of Health, Ageing and Retirement in Europe (SHARE). Older persons with limitations living at home have the highest probability of receiving help (formal or informal) in Germany and the lowest in Poland. Given that help is available, the sufficiency of the help is best ensured in Switzerland, Italy and the Netherlands. The indirectly observed properties of the LTC system are most favourable in France. An older person who considers all three aspects important might be best off living in Belgium or Switzerland. The horizontal and vertical equity of LTC systems are analysed for the four representative countries. The Dutch system scores highest on overall equity, followed by the German system. The Spanish and Polish systems are both less equitable than the Dutch and German systems. To show how ageing may affect the financial burden of LTC, projections until 2060 are given for LTC expenditures for the four representative countries. Under the base scenario, for all four countries the proportions of GDP spent on public and private LTC are projected to more than double between 2010 and 2060, and even treble in some cases. The projections also highlight the large differences in LTC expenditures between the four countries. The Netherlands spends by far the most on LTC. Furthermore, the report presents information for a number of European countries on quality of care, the burden of informal caregiving and other aspects of performance. The LTC systems for the four representative countries are evaluated using the four core criteria. The Dutch system has the highest scores on all four dimensions except the total burden of care, where it has the second-best score after Poland. The German system has somewhat lower scores than the Dutch on all four dimensions. The relatively large role for informal care lowers the equity of the German system. The Polish system excels in having a low total burden of care, but it scores lowest on quality of care and equity. The Spanish system has few extreme scores. Policy implications are discussed in the last chapter of this report and in the Policy Brief based on this report.