Determinants of informal caregivers' satisfaction with services for dying cancer patients

doi:10.1016/0277-9536(95)00198-0

Social Science & Medicine

Volume 42, Issue 5, March 1996, Pages 721-731

https://doi.org/10.1016/0277-9536(95)00198-0 Get rights and content

Abstract

The association between bereaved informal caregivers' satisfaction with services delivered by district nurses, general practitioners and hospital doctors, and various service and non-service variables was examined to assess whether satisfaction is a reflection of service characteristics, non-service related factors, or attributable to both. Secondary analysis was undertaken on a sub-sample from the “Regional Study of Care for the Dying” (RSCD) in which bereaved relatives or friends of a random sample of deaths in 1990 in 20 health districts across England were interviewed some ten months after the death. 1858 relatives or close friends/neighbours of people who died from cancer were included in this analysis. Using multiple logistic regression, larger odds ratio were found in association with service than non-service variables. For example, high satisfaction with district nurses was strongly associated with visiting the patient very frequently (OR = 10.8, 95% CI = 4.5–25.9), while the GP visting 20 times or more (OR = 5.5, 95% CI = 3.6–8.5), and informing the informal caregiver of the diagnosis (OR = 3.3, 95% CI = 2.3–4.7) were associated with high satisfaction with GPs. However, some non-service variables were significantly associated with satisfaction. For instance, having no bereavement-related psychological problems was positively associated with high satisfaction with district nurses (OR = 2.3, 95% CI = 1.6–3.4) and GPs (OR = 2.0, 95% CI = 1.4–2.8), while the informal caregiver perceiving caring as rewarding as opposed to a burden was positively associated with high satisfaction with district nurses (OR = 3.7, 95% CI = 1.8–7.5) and negatively associated with high satisfaction with hospital doctors (OR = 0.46, 95% CI = 0.24–0.86). The findings indicate that, in post-bereavement surveys evaluating services delivered to dying cancer patients, informal caregivers' satisfaction is mainly determined by service characteristics. However, attributes of both patients and informal caregivers also play an important role.

References (72)

J. Hall et al.
Patient sociodemographic characteristics predictors of satisfaction with medical care: a meta-analysis
Soc. Sci. Med.
(1990)
J.G. Fox et al.
A different approach to socio-demographic predictors of satisfaction with health care
Soc. Sci. Med.
(1981)
L. Gray
Consumer satisfaction with physician provided services: a panel study
Soc. Sci. Med.
(1980)
D. Dutton et al.
Mothers' satisfaction with the cost of children care
Soc. Sci. Med.
(1990)
J. Hinton
Comparisons of places and policies for terminal care
Lancet
(1979)
R. Kane et al.
A randomized controlled trial of hospice care
Lancet
(1984)
D.S. Greer et al.
An alternative in terminal care: results of the national hospice study
J. Chron. Dis.
(1986)
E. Wilkes
Dying now
Lancet
(1984)
N.J. Dawson
Need satisfaction in terminal care setting
Soc. Sci. Med.
(1991)
I. Higginson et al.
Are bereaved family members a valid proxy for a patient's assessments of dying
Soc. Sci. Med.
(1994)

C. Seale

A comparison of hospice and conventional care

Soc. Sci. Med.

(1991)

S. Williams et al.

Convergence and divergence: assessing criteria of consumer satisfaction across general practice, dental and hospital care settings

Soc. Sci. Med.

(1991)

B.S. Hulka et al.

Satisfaction with medical care in low income population

J. Chron. Dis.

(1971)

J. Hall et al.

Meta-analysis of satisfaction with medical care: description of research domain and analysis of overall satisfaction levels

Soc. Sci. Med.

(1988)

C. Seale

Communication and awareness about death: a study of a random sample of dying people

Soc. Sci. Med.

(1991)

World Health Organization

Quality Assurance in Health Care

(1989)

A. Donabedian

Evaluating the quality of medical care

Milbank Mem. Fund Q.

(1966)

R. Hays

An integrated value-expectancy theory of alcohol and other drug use

Br. J. Addict.

(1985)

R. Baker

Development of questionnaire to assess patients' satisfaction with consultations in general practice

Br. J. Gen. Pract.

(1990)

J. Kincey et al.

Patient satisfaction and reported acceptance of advice in general practice

J. R. coll. Gen. Pract.

(1975)

P. Ley

Satisfaction, compliance and communication

Br. J. Clin. Psychol.

(1982)

E. Berkanovic et al.

Satisfaction with health services: some policy implications

Med. Care

(1976)

J. Lochman

Factors related to patients satisfaction with their medical care

J. Commun. Hlth

(1983)

J.E. Ware et al.

The measurement and meaning of patient satisfaction

Hlth Med. Care Ser. Rev.

(1978)

J.E. Ware

How to survey patient satisfaction

Drug Intell. Clin. Pharm.

(1981)

J.E. Ware et al.

Methods for measuring patient satisfaction with medical encounters

Med. Care

(1988)

F. Romm et al.

Correlates of outcomes in patients with congestive heart failure

Med. Care

(1976)

F. Romm et al.

Care process and patient outcomes in Diabetus Mellitus

Med. Care

(1979)

J. Hall et al.

Meta-analysis of correlates of provider behaviour in medical encounters

Med. Care

(1988)

J. Greenly et al.

Organization effects on client satisfaction with humaneness of service

J. Hlth Soc. Behav.

(1981)

L. Linn et al.

Physician and patient satisfaction as factors related to the organization of internal medicine group practices

Med. Care

(1985)

P. Kaim-Caudel et al.

Patient satisfaction survey in general practice

Br. Med. J.

(1975)

C.E. Ross et al.

Client satisfaction and the organization of medical practice: why time counts

J. Hlth. Behav.

(1981)

R.L. Bashshur et al.

Consumer satisfaction with group practice: the CHA case

Am. J. Publ. Hlth

(1967)

I. Higginson et al.

Evaluation of palliative care: steps to quality assurance

Palliative Med.

(1989)

D.M. Dush et al.

Program evaluation in terminal care

The Hospice J.

(1985)

Cited by (94)

Evaluation of care for leukemia and lymphoma patients during their last hospitalization from the perspective of the bereaved family
2016, Leukemia Research
Citation Excerpt :
However, it is not easy to assess patients’ opinions of care, because most are too ill to complete questionnaires or to be interviewed [13]. For this reason, many evaluations of end-of-life care have used the bereaved family members [14–17]. In this study, we also chose to use bereaved family members as patient proxies.
We aimed to evaluate care for leukemia and lymphoma patients during their last hospitalization from the perspective of the bereaved family. Questionnaires were sent to the bereaved family members of adult leukemia and lymphoma patients. We used the Care Evaluation Scale (CES) and asked the bereaved family members about care satisfaction and “good death” factors during the patient’s last week of life or last admission period. We distributed 177 questionnaires and were able to analyze 103 (58.2%) responses. Compared with the results of a previous study of palliative care units in Japan, the CES scores were significantly lower in 9 out of 10 domains. Assessment of the “good death” components revealed that only 33% of respondents agreed that the patient had been relieved as far as possible of pain and physical distress during the last week of life. Only 21.4% of respondents agreed that the patient had been relieved as far as possible of psychological distress, and 57% of caregivers were not satisfied with the level of care. During the last hospitalizations of leukemia or lymphoma patients, their care was insufficient and a good death was not often achieved. Improvement of end-of-life care for leukemia and lymphoma patients is needed.
Measuring experience with end-of-life care: A systematic literature review
2015, Journal of Pain and Symptom Management
Citation Excerpt :
The reported timing of administration of after-death studies varied substantially from three weeks to one year after death. This variation was likely influenced, in part, by the variation in care settings, the purpose of research for each of the studies, and the availability of after-death data (e.g., the Regional Study of the Dying used samples of death certificates from 20 health districts in the United Kingdom14–16). Some research has shown that timing of after-death surveys may influence the reliability of caregivers' perceptions of their loved ones' pain severity and other physical symptoms at four and nine months.17
Increasing interest in end-of-life care has resulted in many tools to measure the quality of care. An important outcome measure of end-of-life care is the family members' or caregivers' experiences of care.
To evaluate the instruments currently in use to inform next steps for research and policy in this area.
We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS^® for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care. Survey items were abstracted and categorized into content areas identified through an iterative method using three independent reviewers. We also abstracted information from the most frequently used surveys about the identification of proxy respondents for after-death surveys, the timing and method of survey administration, and the health care setting being assessed.
We identified 88 articles containing 51 unique surveys with available content. We characterized 14 content areas variably present across the 51 surveys. Information and care planning, provider care, symptom management, and overall experience were the most frequent areas addressed. There was also considerable variation across the surveys in the identification of proxy respondents, the timing of survey administration, and in the health care settings and services being evaluated.
This review identified several comprehensive surveys aimed at measuring the experiences of end-of-life care, covering a variety of content areas and practical issues for survey administration. Future work should focus on standardizing surveys and administration methods so that experiences of care can be reliably measured and compared across care settings.
Factors that affect quality of dying and death in terminal cancer patients on inpatient palliative care units: Perspectives of bereaved family caregivers
2013, Journal of Pain and Symptom Management
Citation Excerpt :
Direct surveys of these patients are difficult and may be biased because many patients are physically or mentally incapable of participation.1 Surveys of family members often are performed instead.2–6 Previous studies that examined the factors associated with the quality of care in hospice7,8 and satisfaction with hospice9 found that longer hospice stays receive better ratings.
There is an increasing use of palliative care units (PCUs) for the treatment of terminally ill cancer patients. Thus, it is important to evaluate the care and quality of life of terminally ill cancer patients treated in PCUs so that improvements can be made. Limited research has investigated the quality of dying and death in PCUs.
The aim of this study was to identify factors associated with the quality of dying and death for terminally ill cancer patients in PCUs.
Data were collected from 570 bereaved family caregivers of terminally ill cancer patients. All patients were registered and died in one of the 40 inpatient PCUs designated by the Korean Ministry of Health and Welfare. We assessed the perceived timing of referral to a PCU; the quality of end-of-life cancer care with the Care Evaluation Scale; and the quality of dying and death with the Good Death Inventory.
The perception of appropriate timing of referral, use of a community-based PCU, and higher quality of cancer care as assessed by the Care Evaluation Scale were associated with good dying and death in all domains of the Good Death Inventory.
The good quality of end-of-life care in a PCU improves the quality of dying in terminally ill cancer patients. The data have the potential to guide the development of interventions aimed at achieving a good quality of dying for patients with terminal cancer.
Quality of care in the last year of life: adaptation and validation of the German “Views of Informal Carers’ Evaluation of Services – Last Year of Life – Cologne”
2022, BMC Health Services Research
The quality of end-of-life care for Danish cancer patients who have received non-specialized palliative care: a national survey using the Danish version of VOICES-SF
2022, Supportive Care in Cancer
The quality of end of life care for Danish cancer patients who have received specialized palliative: a national survey using the Danish version of VOICES-SF
2022, Supportive Care in Cancer

View all citing articles on Scopus

View full text

General paperDeterminants of informal caregivers' satisfaction with services for dying cancer patients

Abstract

Soc. Sci. Med.

Soc. Sci. Med.

Soc. Sci. Med.

Soc. Sci. Med.

Lancet

Lancet

J. Chron. Dis.

Lancet

Soc. Sci. Med.

Soc. Sci. Med.

Soc. Sci. Med.

Soc. Sci. Med.

J. Chron. Dis.

Soc. Sci. Med.

Soc. Sci. Med.

Quality Assurance in Health Care

Evaluating the quality of medical care

Milbank Mem. Fund Q.

An integrated value-expectancy theory of alcohol and other drug use

Br. J. Addict.

Development of questionnaire to assess patients' satisfaction with consultations in general practice

Br. J. Gen. Pract.

Patient satisfaction and reported acceptance of advice in general practice

J. R. coll. Gen. Pract.

Satisfaction, compliance and communication

Br. J. Clin. Psychol.

Satisfaction with health services: some policy implications

Med. Care

Factors related to patients satisfaction with their medical care

J. Commun. Hlth

The measurement and meaning of patient satisfaction

Hlth Med. Care Ser. Rev.

How to survey patient satisfaction

Drug Intell. Clin. Pharm.

Methods for measuring patient satisfaction with medical encounters

Med. Care

Correlates of outcomes in patients with congestive heart failure

Med. Care

Care process and patient outcomes in Diabetus Mellitus

Med. Care

Meta-analysis of correlates of provider behaviour in medical encounters

Med. Care

Organization effects on client satisfaction with humaneness of service

J. Hlth Soc. Behav.

Physician and patient satisfaction as factors related to the organization of internal medicine group practices

Med. Care

Patient satisfaction survey in general practice

Br. Med. J.

Client satisfaction and the organization of medical practice: why time counts

J. Hlth. Behav.

Consumer satisfaction with group practice: the CHA case

Am. J. Publ. Hlth

Evaluation of palliative care: steps to quality assurance

Palliative Med.

Program evaluation in terminal care

The Hospice J.

General paper
Determinants of informal caregivers' satisfaction with services for dying cancer patients