Effectiveness Not Established

Healthcare Provider Interventions

for Caregiver Strain and Burden

Healthcare provider interventions involve the provision of education, support, and/or consultative counseling to the healthcare provider in an attempt to indirectly influence patient or caregiver outcomes. This type of intervention aims to determine if focused interventions with the healthcare provider can result in demonstrated improvement in the patient or caregiver outcomes/symptoms that are being addressed through counseling and educating providers.

Research Evidence Summaries

Maeda, I., Miyashita, M., Yamagishi, A., Kinoshita, H., Shirahige, Y., Izumi, N., . . . Morita, T. (2016). Changes in relatives' perspectives on quality of death, quality of care, pain relief, and caregiving burden before and after a region-based palliative care intervention. Journal of Pain and Symptom Management, 52, 637–645. 

Study Purpose

To explore the effect of a previously developed Japan Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) intervention on palliative care outcomes (quality of patient death and dying, family views on patient quality of care and pain control, and caregiver burden) in hospital, home, and palliative care unit settings

Intervention Characteristics/Basic Study Process

The OPTIM intervention focused on enhancing Japanese regional medical providers’ palliative knowledge and skills via distributions of manuals and interactive workshops and incorporating palliative care teams in educational outreach to community patients and families. The intervention also focused on holding interdisciplinary palliative care conferences and providing consumer-based information and programs on palliative care to improve regional oncologic comfort. Patients and caregivers from 23 hospitals and home-care clinics completed four questionnaires in a mailed survey sent before and following the intervention.

Sample Characteristics

  • N = 2,247    
  • AGE: 72% aged 69 years or younger (no mean age reported)
  • MALES: 29.65%, FEMALES: 70.35%
  • CURRENT TREATMENT: Other
  • KEY DISEASE CHARACTERISTICS: Diverse cancers (lung/gastrointestinal were most common) to support patient terminal illness 
  • OTHER KEY SAMPLE CHARACTERISTICS: Caregivers were adults, able to complete questionnaires, and did not have severe emotional distress. Two different groups of caregivers responded to pre- and postintervention surveys.

Setting

  • SITE: Multi-site   
  • SETTING TYPE: Multiple settings    
  • LOCATION: Japan

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care

Study Design

Pre-/postdesign

Measurement Instruments/Methods

  • Care Evaluation Scale to measure 10 domains of family-perceived quality of patient care
  • Good Death Inventory to measure 18 domains of a good death in Japanese patients with cancer, included one item to measure patient pain relief 
  • Caregiving Consequences Inventory to measure care burden

Results

Significant differences (p < 0.01) were reported in quality of patient care in the home, palliative care unit, and hospital, with highest quality of care in the home. Overall, quality of care improved significantly (p = 0.04) from preintervention to postintervention in hospitals. Similar improvements at a significant level (p = 0.012) occurred in the quality of death and dying in hospitals, although this place had the lowest score at baseline compared to palliative care units and the home. No significant differences in patient pain relief occurred pre- and postintervention, nor did caregiver burden significantly increase postintervention in any of the three settings of patient death. Quality of care measures in the hospital and in some measure domains in the palliative care unit increased significantly postintervention (p < 0.05).

Conclusions

Caregiver quantitative feedback postintervention showed the most improvement in quality of care and of death and dying in hospitalized patients, with additional improvement in palliative care units deemed as high quality by caregivers preintervention. Caregivers consistently viewed home care as highest in quality pre- and postintervention. Family burden of care did not increase in the three settings related to the intervention. With most patient deaths in hospitals in Japan and many countries, additional efforts to improve hospital quality of care may smooth the transition of dying patients to their homes for improved family well-being.

Limitations

  • Risk of bias (no control group)
  • Risk of bias (no blinding)
  • Risk of bias (sample characteristics)
  • Unintended interventions or applicable interventions not described that would influence results
  • Key sample group differences that could influence results
  • Findings not generalizable
  • Only definition of patient status was “terminally ill”
  • Caregivers required to provide data in retrospective manner when recall may have been difficult
  • Response rate of three groups differed to affect measurement of quality of care and quality of patient death and dying.
  • Definition of family caregiver unclear in article (more than 92% of caregivers were spouses or children of the patient)
  • Significant differences in age of patients and caregivers existed in preintervention and postintervention groups, and similar significance existed in place of death in both groups.
  • Specifics of intervention unclear because of earlier publication of that information

Nursing Implications

Current emphasis on the delivery of high quality care to patients and their families in a variety of end-of-life settings mandates nursing attention to the feedback of patients who are terminally ill and their caregivers to meet that goal. Additional research and evidence from clinical practice offer opportunities to gain that feedback to improve care at the end of life for patients with cancer and their families.

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Mitchell, G.K., Girgis, A., Jiwa, M., Sibbritt, D., Burridge, L.H., & Senior, H.E. (2013). Providing general practice needs-based care for carers of people with advanced cancer: A randomised controlled trial. The British Journal of General Practice, 63(615), e683–e690.

Study Purpose

To test whether a general practice consultation directed by a carer needs checklist would improve meeting the needs of carers

Intervention Characteristics/Basic Study Process

General practitioners of intervention patients were visited, introduced to intervention resources, and invited to participate. Tools provided were a needs assessment tool and a general practice toolkit of paper-based and electronic forms providing evidence-based information, resources, and services that might help address problems. Consultations were provided at baseline and at three months, based on needs assessment results. Patients were randomized, but those whose general practitioner had a previous participant were nonrandomly allocated to the same study group to prevent contamination. Data collection included survey at one, three, and six months by telephone interview. Control group general practitioners were not contacted. General practitioners were educated on the process through academic detailing.

Sample Characteristics

  • N = 211 carers
  • MEAN AGE = 57.5 years
  • MALES: 33.5%, FEMALES: 66.5%
  • KEY DISEASE CHARACTERISTICS: Varied prognoses in terms of life expectancy 
  • OTHER KEY SAMPLE CHARACTERISTICS: Most carers were spouse or partner and lived with the patient. 32% were employed full-time, and 18.5% were employed part-time. 

Setting

  • SITE: Multi-site  
  • SETTING TYPE: Outpatient  
  • LOCATION: Australia

Phase of Care and Clinical Applications

  • PHASE OF CARE: Late effects and survivorship
  • APPLICATIONS: Palliative care 

Study Design

  • Single-blind RCT

Measurement Instruments/Methods

  • Supportive care needs survey for partners and carers to measure unmet needs
  • Hospital Anxiety and Depression Scale
  • SF-12

Results

Twenty-nine percent of intervention group patients and 15% of control group patients dropped out of the study—most said this was because they were too busy to continue after their initial interview. Three of 158 general practitioners refused to conduct the consultations. No between-group differences were seen in change from scores at baseline to scores at any time point. Subgroup analysis showed no change in depression scores. For those who were clinically depressed at baseline, control patients demonstrated significantly worse anxiety at six months, while intervention group scores were essentially stable. Intervention group carers with baseline anxiety or depression reported deterioration in physical scores on the SF-12 (p = .053). In analysis adjusted for baseline anxiety, those in the intervention group had significant worsening of physical function scores (p = .037) and increased psychological and emotional needs from baseline to three months (p = .033). Those caring for less ill individuals had improvement in mental health at three months in SF-12 scores.

Conclusions

The study did not demonstrate improvement in intensity or number of unmet needs or carer outcomes overall.

Limitations

  • Risk of bias (no random assignment) 
  • Risk of bias (no appropriate attentional control condition)  
  • Unintended interventions or applicable interventions not described that would influence results
  • Questionable protocol fidelity 
  • Subject withdrawals 10% or greater 
  • Other limitations/explanation: Although general practitioner participation was stated, actual completion of expected consultations at the expected timeframes is not discussed or reported—no approach to ensure treatment fidelity in such consultations; high attrition rate; no information about the patient’s type of cancer, severity, or symptoms is provided—these are likely to have an impact on the degree of caregiver burden and associated outcomes; the nature of the general practice consultation is not clearly described, and actions taken to meet assessed needs is not discussed.
 

 

Nursing Implications

Findings did not support the idea of reducing carer unmet needs via an assessment-driven general practice consultation over time. Undergoing assessment of needs possibly increases the degree to which carers identify needs that are not being met. This study focused on provision of tools to general practitioners but does not describe what actions were taken on the basis of the assessment done, so it provides little support for any specific approach to address caregiver needs.

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