PresentationPDF Available

What caregivers need?



Main goals of the presentation are: a) to introduce the needs of caregivers who provide care about elderly family member, b) to put such needs into the context of family environment and c) to relate the needs with the key risk factors. Methodology of a needs assessment, i.e., identification of the gap between current and optimal conditions for provided care was used. By using the needs assessment technique, it was possible to identify the unconscious needs. Presentation summarizes and categorizes the identified needs; moreover, available results indicate that the combination of risk factors and needs is for analyzed individuals unique. Such result leads to the conclusion that effective interventions should be customized and targeted.
9th Congress of the European Society on Family Relations
Porto, 58 September, 2018
Family care is the preferred type of care about
dependents seniors (when health status of the senior
enables staying at home).
Four out of five respondents from general public want
their families to care after them in the old age.
However, informal family care is provided only to 16 %
of seniors.
-capable and willing caregivers
-cohesive families
- availability and affordability of social services
-society sensitive to the needs of caring families
- appropriate provisions (e.g., allowances, benefits)
Attention is usually paid to the needs of seniors.
(Detmar et al. 2001, Strawbridge et al. 1997 or Proot et al. 2004)
Other studies are focused on preferences of caregivers.
(Martire et al. 1997, Levine et al. 1999)
The concept of „needs“ is used interchangeably with
„preferences“ or „wants“.
Informal family care is usually appreciated; adequate
policy measures are recommended.
The research task is to set criteria for evaluation the
effectiveness and usefulness of possible interventions
focused on supporting the caregivers.
To identify and summarize the needs of caregivers.
To contextualize the caregivers´needs within the family
Needs are the differences between „what is“ and „what
should be“.
Needs identify the discrepancy between the real and ideal
state that is reflected through certain values.
People do not prefer certain needs.
Preferential data or perceived importance brings only
suboptimal results (top-of-mind issues/„usual suspects“).
Data collection method: In-depth interviews
Sample size: 67 cases
Sample characteristics: - main caregivers only
- 54 females; 13 males
- urban (42) and rural (25) regions
- 41 descendants, 23 partners,
and 3 others
Duration of care: 45 years
Care was closed within past three years
1. Educational
Information about available services, about eligibility criteria; about the illness,
drugs, legal advice, etc.
„Care allowance? Yeah, we have asked our general
practitioner, but he said that it was not for us. So, we
did not apply for that.“
2. Social
Communication with the senior and with professional (e.g. nurses, social workers,
MDs); communication with other caregivers within the family, division of labor
within the family negotiating about certain tasks; lost of personal contacts
(friends), higher risk of social exclusion (isolation).
3. Psychological
Experiencing own limits, coping with the burden, burnout, seeking help, lower
4. Emotional
End-of-life issues, feeling and sharing pain.
5. Financial
Paying direct and indirect costs associated with the care; consequences of
caregiving to own work-status; retirement and labor market decisions; financial
planning (long-term).
„I had to borrow some money to re-build the house.
I had to broaden the corridor and re-arrange
the bathroom. Then I had to pay instalments for
three consecutive years.“
6. Technical
Rebuilding the flat/house, moving, tool acquisition.
7. Practical
Practicing care-operations adjustment, bathing, feeding; operating and
maintenance of appliances.
„Once, I experienced lumbago as I was trying to turn
her. Later on, I kept waiting till my sons came.“
8. Health
Fear of own health; rehabilitation; solving own health issues.
I should have gone for an eye-surgery, but I had to
cancel that because I would have to stay in a hospital
for five days. Who would care for him? So, I underwent
the surgery after he had passed away.“
Source: Aneshensel et al. (1995)
Acquisition Role
Enactment Role
*** *
* * ***
**** *
** ***
*** ***
** ***
Failing to identify the needs might result in extensive
burden to caregivers, or in lower volume of care, lower
complexity of care, lower quality of care, and even
inability to provide care.
Needs are not constant during the course of caregiving.
Services supporting the caregivers should be targeted.
Altschuld, J.W., Witkin, B.R. (2000). From Needs Assessment to Action. London: SAGE Publishing.
Aneshensel, C.S., Pearlin, L.I., Mullan, J.T., Zarit, S.H. and Whitlatch, C.J. (1995). Profiles in Caregiving. The Unexpected Career. California:
Academic Press.
Detmar, S.B., Muller, M.J., Wever, L.D.V., Schornagel, J.H. and Aaronson, N.K. (2001). Patient-physician communication during
outpatient palliative treatment visits: an observational study.
Levine, C. (1999). The loneliness of the long-term caregiver. New England Journal of Medicine, 340, 15871590.
Martire, L.M., Stephens, M.A. and Atienza, A.A. (1997). The interplay of work and caregiving: relationships between role satisfaction,
role involvement, and caregivers’ wellbeing. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 52,279
McKillip, J. (1987). Need Analysis. Tools for the Human Services and Education. London: SAGE Publishing.
Proot, I.M., Huijer, A.H., Meulen, R.H.J., Goldsteen, M., Spreeuwenberg, C. and Widderhoven, G. (2004). The needs of terminally ill
patients at home: directing one’s life, health and things related to beloved others. Palliative Medicine, 18(1), 53−61.
Remr, J. Institucionální péče o seniory. In: Rodinná péče o staré lidi. Studie CESES 3 (11).
Remr, J. (2012). Typology of Family Care for Dependent Seniors. In: Perek-Bialas, J., Hoff, A. Developing the “sociology of ageing”: to
tackle the challenge of ageing societies in Central and Eastern Europe. Krakow: Jagiellonian University Press.
Remr, J. Methodological Peculiarities of Needs Assessment. Evaluační teorie a praxe 6 (2): 3352.
Soriano, F.I. (1995). Conducting Needs Assessments. A Multidisciplinary Approach. London: SAGE Publishing.
Strawbridge, W. J., Wallhagen, M.I., Shema, S.J. and Kaplan, G.A. (1997). New burdens or more of the same? Comparing grandparent,
spouse and adult-child caregivers. Gerontologist, 37, 505510.
Thanks for your Attention
Jiri REMR, PhD
ResearchGate has not been able to resolve any citations for this publication.
Full-text available
This article focuses attention on the importance of needs that are understood as a criterium for the evaluation of usefulness. The text proposes a usable conceptual framing of what evidence might be collected. Moreover, it identifies the role of needs within the theory of change that is presented by the generalized logic model and finally it points out the key situation when usefulness can successfully supplement other evaluative criteria like relevance or effectiveness. Discrimination of needs from similar constructs like wants, preferences and demand is analyzed and documented with vivid examples from a study that focused on the needs of informal caregivers providing care to the dependent seniors within their homes. Moreover, the key methodological peculiarities of the systematic process of the identification, analysis and evaluation of needs are brought to attention.
Full-text available
Text shrnuje jednotlivé faktory, které ovlivňují rozhodování poskytovatelů péče (zejména pak rodinných příslušníků) o seniory. za situace, kdy zvažují konkrétní zabezpečení a volbu způsobu péče a pomoci. Na podkladě obecně nastíněných výchozích historických souvislostí je hlavní pozornost věnována popisu klíčových determinant dalšího rozvoje institucionálních mechanismů péče o seniory. Tyto determinanty jsou přitom uvedeny ve formě základních dichotomií, jež odrážejí specifikované výzkumné hypotézy, spolu s výčtem základních tématických okruhů naznačujících možnosti dalšího výzkumu.
Full-text available
This study compares the health of 42 grandparent, 44 spouse, and 130 adult-child caregivers with 1,669 noncaregivers in 1994 and 1974. In 1994, all three caregiver groups had poorer mental health than the noncaregivers; grandparent caregivers also had poorer physical health and greater activity limitations. Spouse and adult-child caregivers had not differed from the noncaregivers 20 years prior, but grandparent caregivers had experienced poorer health than the noncaregivers and more stressful life events than the other caregivers. Caregiving appears to add new burdens to otherwise normal lives for spouse and adult-child caregivers, while being yet another aspect of a difficult life course for grandparent caregivers.
Full-text available
This study applied theory from the general work and family literature to the dual roles of work and caregiving, in order to examine whether level of satisfaction and time involvement in each of these roles moderate the effects of stress in the other role on well-being. Respondents were 118 employed women who were providing care to an impaired parent or parent-in-law. As predicted, greater time involvement in work was found to buffer women from the negative effects of caregiving stress. Satisfaction with caregiving and satisfaction with work were directly associated with better well-being, beyond the effects of stress in both roles. However, women who experienced high levels of caregiving stress and who were highly satisfied with work were especially vulnerable to depression. These findings illustrate the importance of examining the effects of caregiving stress on well-being in the context of work-related experiences.
Full-text available
Improving health-related quality of life (HRQL) is an important goal of palliative treatment, but little is known about actual patient-physician communication regarding HRQL topics during palliative treatment. To investigate the content of routine communication regarding 4 specific HRQL issues between oncologists and their patients and to identify patient-, physician-, and visit-specific factors significantly associated with discussion of such issues. Observational study conducted between June 1996 and January 1998. Outpatient palliative chemotherapy clinic of a cancer hospital in the Netherlands. Ten oncologists and 240 of their patients (72% female; mean age, 55 years) who had incurable cancer and were receiving outpatient palliative chemotherapy. Patient and physician questionnaires and audiotape analysis of communication regarding daily activities, emotional functioning, pain, and fatigue during an outpatient consultation using the Roter Interaction Analysis System. Physicians devoted 64% of their conversation to medical/technical issues and 23% to HRQL issues. Patients' communication behavior was divided more equally between medical/technical issues (41%) and HRQL topics (48%). Of the independent variables investigated, patients' self-reported HRQL was the most powerful predictor of discussing HRQL issues. Nevertheless, in 20% to 54% of the consultations in which patients were experiencing serious HRQL problems, no time was devoted to discussion of those problems. In particular, these patients' emotional functioning and fatigue were unaddressed 54% and 48% of the time, respectively. Discussion of HRQL issues was not more frequent in consultations in which tumor response was evaluated. Despite increasing recognition of the importance of maintaining patients' HRQL as a goal of palliative treatment, the amount of patient-physician communication devoted to such issues remains limited and appears to make only a modest contribution, at least in an explicit sense, to the evaluation of treatment efficacy in daily clinical practice.
The book collects the most contemporary issues related to the process of ageing of societies in Central and Eastern Europe. The multiplicity of topics presented with the variety of theoretical and methodological approaches means that although it is a publication by many authors, it is a consistent monographic study, showing the development of sociology of ageing as a scientific discipline in selected countries of Central and Eastern Europe. The aim of the book is to call the attention of the reader and emphasize that the challenges of population ageing in this part of Europe are important aspects of sociology is particularly valuable. These challenges require not only recognition and resolution through application of appropriate research approaches, but also education of various actors (including policy makers) for being prepared for both diagnosing the phenomena and taking action in practice. © Jolanta Perek-Białas, Andreas Hoff and Wydawnictwo Uniwersytetu Jagiellońskiego, First edition, Kraków 2012. All rights reserved.
Identifying Needs Evaluating Needs Models and Examples Resource Inventory Social Indicator Analyses Analyzing Use of Services Surveying Need Structured Groups Choosing Among Methods Integrating Need Information Communication of Results
This article has no abstract; the first 100 words appear below. I am standing at a bank of phones, desperately punching in codes and numbers. Each time, the line goes dead. “Why can't I get through to anyone?” I think. “I must be doing something wrong.” I wake up. This time it's only a dream. But the dream originated in a real experience. On the icy morning of January 15, 1990, my husband lay comatose in the emergency room of a community hospital after an automobile accident. Uninjured but dazed, I stood at a bank of hospital phones trying to reach people who could help me transfer him to a major . . . Carol Levine, M.A. United Hospital Fund, New York, NY 10118
This article describes the results of a grounded theory study among terminally ill patients (with a life expectancy of less than three months) at home (n = 13, aged 39-83). The most commonly recurring theme identified in the analysis is 'directing', in the sense of directing a play. From the perspectives of patients in our study, 'directing' concerns three domains: 1) directing one's own life; 2) directing one's own health and health care; and 3) directing things related to beloved others (in the meaning of taking care of beloved ones). The patient's directing is affected by impeding and facilitating circumstances: the patient's needs and problems in the physical, psychological and existential/spiritual domain, and the support by family members and providers. Supporting patients and families, stimulating the patients' directing, giving attention to all domains of needs and counselling patients' families in the terminal phase are issues that need attention and warrant further investigation.