Caregiver Training and Skill Development

Caregiver Training and Skill Development

PEP Topic 
Caregiver Strain and Burden
Description 

Caregiver training and skill development is the provision of education and training to develop technical and other caregiving skills and to enhance knowledge involved in assuming the caregiver role.

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Likely to Be Effective

Research Evidence Summaries

Belgacem, B., Auclair, C., Fedor, M.C., Brugnon, D., Blanquet, M., Tournilhac, O., & Gerbaud, L. (2013). A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: A randomised clinical trial. European Journal of Oncology Nursing, 17, 870–876.

doi: 10.1016/j.ejon.2013.04.006
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Study Purpose:

To examine the effectiveness of a caregiver educational program on caregiver and patient quality of life and caregiver burden

Intervention Characteristics/Basic Study Process:

Researchers and 157 study doctors and nurses defined and validated via a Delphi method a list of nursing care tasks for patients with cancer. These tasks were divided into four categories—meal support, nursing care, symptom management, and welfare care—for caregiver bedside teaching to intervention group patient-caregiver dyads. Validated educational pamphlets for each task category guided step-by-step nurse teaching to meet individual caregiver learning for independent provision of care to an ill family member. The healthcare team provided task education specific to each patient’s needs and agreed upon by caregiver, patient, and members of the healthcare team. Educational interventions adhered to a four-step process to minimize error and maintain intervention integrity. Patient and caregiver quality of life and caregiver burden were measured before the educational program and one to three months afterward. Patient satisfaction also was measured 15 days post-first evaluation and at the last evaluation.  

Sample Characteristics:

  • N = 67
  • MEAN AGE = 59.6 years
  • MALES: 41.5%, FEMALES: 58.5%
  • KEY DISEASE CHARACTERISTICS: Patients had hematologic cancer (e.g., leukemia, lymphoma, myelodysplastic syndrome) or other oncologic illness and received care for at least five weeks
  • OTHER KEY SAMPLE CHARACTERISTICS: 61.5% were spousal caregivers, and 16.9% were “offspring” caregivers; patients agreed to have their main caregiver involved in the study, and patients had approval for study participation from the doctor/psychological dyad

Setting:

  • SITE: Six acute care units, five different settings  
  • SETTING TYPE: Multi-site  
  • LOCATION: Clermont-Ferrand, France

Phase of Care and Clinical Applications:

  • PHASE OF CARE: Active treatment

Study Design:

  • Randomized, controlled trial
    • Patient-caregiver dyads were assigned to the experimental or control group using randomization software

Measurement Instruments/Methods:

  • SF-36 health survey (patients and caregivers self-administered)—used to assess eight health dimensions
  • Zarit Burden Scale (caregivers self-administered)—used to assess three dimensions of burden
  • Questionnaire for satisfaction of hospitalized patients (patient self-administered)—used to assess eight factors related to scope of hospital experience

Results:

No difference was seen in quality of life scores between the control (N = 34) and experimental (N = 33) patient-caregiver dyad groups at the first testing. Evaluation (pre- and post-test scores) supported improved quality-of-life scores in the experimental group patient-caregiver dyads as compared to those in the control group. Patients in the experimental group showed significant improvement on two of six dimensions (physical role [p = 0.039] and general health [p = 0.037] on the quality-of-life measure. Experimental group caregivers showed significant improvement on six of eight dimensions (physical role, emotional role, vitality, mental health, social functioning, and general health, all p < 0.05) on the quality-of-life measure. The average score of burden of care in the experimental group (M = 16, SD = 9.9) was significantly lower than that of control group (M = 31.4, SD = 14.9) at last evaluation (p < 0.001). Evolution scores for burden also showed significantly (p = 0.004) less perceived burden among experimental group caregivers as compared to control group caregivers. Patient satisfaction scores of patients in the experimental and control groups showed no difference, except patients in the experimental group showed a significant improvement in relationship with nurses (p = 0.037) because of program involvement.

Conclusions:

Nurse-provided educational interventions tailored to caregiver needs and patient expectations may minimize caregiver burden and improve patient and caregiver quality of life. These interventions, if provided during patients’ acute setting care, may pave the way for more effective patient home care by informed and involved caregivers.

Limitations:

  • Small sample (less than 100)
  • Risk of bias (no blinding)
  • Risk of bias (no appropriate attentional control condition)
  • Findings not generalizable
  • Other limitations/explanation: Authors acknowledge strict inclusion and exclusion criteria that influenced the loss of 110 of 265 participants initially assessed for the study. Author conclusions note a need for a less rigorous program to meet patient and caregiver needs for those who do not meet more stringent criteria found in an RCT used in this study. Whether nurses who were members of the research team delivered the intervention and could connect knowledge of individual patients/caregivers to study results is unclear. Which of the four teaching categories influenced caregiver quality of life and burden the most also is unclear.

Nursing Implications:

Nurses who deliver evidence-based, tailored educational interventions to family cancer caregivers may increase patient-caregiver quality of life and minimize caregiver burden during cancer care. Stronger nurse-patient relationships, based on interaction during caregiver task teaching, may facilitate patient care satisfaction and coping during the cancer experience.

Hendrix, C.C., Abernethy, A., Sloane, R., Misuraca, J., & Moore, J. (2009). A pilot study on the influence of an individualized and experiential training on cancer caregiver's self-efficacy in home care and symptom management. Home Healthcare Nurse, 27, 271–278.

doi: 10.1097/01.NHH.0000356777.70503.62
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Study Purpose:

To formally evaluate whether a tailored and experiential training approach by an experienced nurse would enhance confidence (self-efficacy) of family cancer caregivers to provide home care and manage patients’ symptoms of illness

Intervention Characteristics/Basic Study Process:

The study principal investigator (PI) provided a conceptually based, tailored, and patient-centered bedside intervention for family caregivers providing home care to patients with hematologic malignancies. Caregiver training included symptom management on prevention of infection, pain, poor nutrition, constipation/diarrhea, and management of medications for patient cancer symptoms. Interactive discussion on these topics occurred between interventionist (experienced nurse), caregiver, and patient. To encourage patient involvement in problem-solving symptoms, dyad participation was also incorporated into bedside training. Caregivers received an illustrated take-home manual on discussed topics. Discussion focused on nonpharmacologic interventions to improve patient comfort and meet other patient needs. Caregivers provided a return demonstration following nurse delivery of didactic teaching and skill performance (e.g., catheter care management) specific to patients’ home situation. Sufficient time was provided in the teaching encounter for patients and caregivers to ask questions and to allow satisfactory completion of the skills required for effective patient home care before patient discharge.

Assessment of the influence of the intervention occurred before and after PI training and one week following hospital discharge of the patients. Caregivers completed postintervention assessment within 24 hours of the PI’s didactic and skill performance presentation to caregivers.

Sample Characteristics:

  • The sample (N = 16) was 15% male and 85% female.
  • Sample age range was 44–80 years.
  • Mean age was 62 years for both patients and caregivers.
  • All patients had hematologic cancers and were admitted for chemotherapy or treatment of cancer-related acute conditions.
  • Caregivers were connected to patients who were likely to be discharged soon and who were not actively dying; lived with patients in the same home and served as primary caregivers; and were English speaking and reading.
  • The majority of caregivers were white and did not work outside the home; almost half were educated at the associate degree level or higher.

Setting:

  • Single site
  • Multiple settings
  • Southeastern U.S. regional medical center

Phase of Care and Clinical Applications:

Active antitumor treatment phase

Study Design:

A quasi-experimental, time-series design was used.

Measurement Instruments/Methods:

  • Cancer Caregiver Self-Efficacy (Confidence) Questionnaire (CCSE): This 23-item tool was used three times in the study to assess caregiver confidence in completing a behavioral task or skill.
  • No prestudy reliability and validity indices were reported.
  • Cronbach’s alpha was 0.94 for the CCSE. Construct validity index of 0.77 (p < 0.001) was reported for the CCSE when the scores from the study sample of 16 were correlated with historical data including the Caregiving Preparedness Scale.

Results:

Total caregiver CCSE scores were significantly higher immediately after caregiver training (z = 4.49, p < 0.001) and one week after hospital discharge of patients (z = 3.22, p < 0.001). These higher scores reflect higher and some sustained levels of caregiver confidence to provide needed home care to patients comprising the sample. Although unanticipated, four patients died within one week of hospital discharge (20% attrition for study), producing a total sample of 16 from the initial sample of 20 patient–caregiver dyads for the one-week assessment.

Conclusions:

Timely assessment and nurse-led interventions relevant to assessment findings may increase caregiver confidence to assume home care for patients with hematologic malignancies. Based on Bandura’s (1986) conceptual self-efficacy framework, this pilot study suggests that nurse-led individualized teaching and modeling of homecare skills at the patient’s bedside prior to discharge can sustain caregiver confidence for up to one week postdischarge of the patient. Caregivers and patients believed the intervention to be highly beneficial based on a 1:1 relationship with the nurse-teacher.

Limitations:

  • The sample was small, with less than 30 participants.    
  • Risk of bias existed because of no control group, no blinding, and no appropriate attentional control condition.
  • Unintended interventions or applicable interventions that would influence results are not described.
  • Findings are not generalizable.
  • Subject withdrawals were greater than 10%.
  • Involvement of the PI or study staff with the rounding oncologist during prerecruitment may have influenced individuals approached for the study (Were those with greatest needs referred for the study?)
  • The acuity level of the sample patients and the functional health of caregivers to support their ability to provide home care are unknown.
  • Whether training occurred the day of discharge or how variable the timing and length of the intervention was are unclear.
  • Whether data from the 20 subjects were used in the pre- and post-analysis and then from the 16 for the pre-one week, or whether the 16 were used for all analysis, is unclear. The analysis section suggests that a mixed-effects model was used, suggesting that all data were used and missing data were modeled. More manuscript details would aid in interpretation of the study findings.
  • Threats of maturation and selection also may affect internal validity of the study.

Nursing Implications:

As part of their education, nurses learn about the teaching-learning process to optimally prepare patients, families, and communities about ways to improve personal and societal health. With early discharge of patients and the need for family members to often assume complex caregiving roles, there is a heightened need for nurses to use their knowledge of teaching-learning to assess and implement effective teaching to families during the cancer trajectory. Individualized and bedside teaching approaches, such as those found in this study, benefit patients and family members in both inpatient and outpatient settings. Study findings must be evaluated with caution due to the small sample size, one setting for data collection, and lack of control group. More specifically relative to sample size, additional replication of the study must occur to more clearly identify the influence of the individualized and experiential training program on diverse population groups related to ethnicity, clinic care type, education level, and gender (external validity). This would capture deeper understanding of needed components of tailored care in the healthcare team approach to efficiently meet caregiver and patient needs.

Hendrix, C.C., Landerman, R., & Abernethy, A.P. (2013). Effects of an individualized caregiver training intervention on self-efficacy of cancer caregivers. Western Journal of Nursing Research, 35, 590–610.

 

doi: 10.1177/0193945911420742
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Study Purpose:

To (a) investigate the effects of an individualized caregiver training intervention on a caregiver’s self-efficacy in home care and symptom management, and (b) identify whether caregiver training would affect a caregiver’s psychological well-being (depression, anxiety, and quality of life)

Intervention Characteristics/Basic Study Process:

After signing informed consent, dyads completed baseline questionnaires and were randomly assigned to either a treatment group or a control group. Interactive nurse–caregiver training for one to two sessions was offered when discharge was imminent. Immediately after caregiver training, caregivers completed questionnaires on self-efficacy. Follow-up questionnaires for caregivers and patients were completed at one week, two weeks, and four weeks after hospital discharge of patients.

The caregiver training intervention provided caregiver training for managing patients’ cancer symptoms with four major components: (a) prevention of infection, (b) pain control, (c) maintenance of nutrition, and (d) adequate elimination. The program was manualized, including a book for caregivers with “how to” pictures. Additional time and content were allocated to address specific homecare issues identified by caregivers. The training followed a consistent outline, but information shared was specific to needs of the patient and caregiver.

The control intervention consisted of an interactive nurse–caregiver standardized, manualized one-two session intervention focused on information about community resources for caregiving. This included but was not limited to home health agencies, respite care, and caregiver support services.

Sample Characteristics:

  • The sample included 120 patient dyads (60 in treatment group and 60 in control group).
  • Of the caregivers, 48% were 46–64 years of age; of the patients, 54% were 60–69 years of age.
  • The caregiver sample was 17% male and 83% female; the patient sample was 71% male and 29% female.
  • Patients had hematologic malignancies.
  • Of the caregivers, 84% were white, 89% were married, 60% had education beyond high school, 64.6% were not working outside the home, and the patient for whom they cared was a spouse.
  • Of the patients, more than 80% were white, 88% were married, and almost 90% had education beyond high school.

Setting:

  • Single site
  • Outpatient setting
  • Duke University Hospital in Durham, NC

Phase of Care and Clinical Applications:

  • Multiple phases
  • Home care; after hospital discharge; survivorship

Study Design:

A randomized controlled trial design was used.

Measurement Instruments/Methods:

  • Lorig’s Self-Efficacy Scale: Noted prior assessed reliability (0.94) and validity
  • Hospital Anxiety and Depression Scale (HADS): No noted prior reliability and validity
  • Older Americans Resources and Services (OARS) Multidimensional Functional Assessment Questionnaire (Instrumental and Physical subscales): No noted reliability and validity
  • OARS Comorbidity Scale: No noted reliability and validity indices
  • Caregiver Quality of Life–Cancer Scale (CQOLC): Noted earlier assessed internal consistency of 0.91   
  • Memorial Symptom Assessment Scale (MSAS): No noted reliability and validity

Results:

There was increased self-efficacy immediately following the caregiver training intervention and higher self-efficacy and symptom management at four weeks after the intervention when compared to the control group. A significant group-by-time interaction (p = 0.008) was present in the training intervention caregiver group that showed decreased depression scores from baseline to time 3 (one week). However, significant differences between treatment and control groups were not found after time 3. A similar result occurred when analyzing the effect of the intervention on caregiver anxiety. In terms of the effect of the caregiver intervention on patient’s physical symptoms, the overall intervention over time did not significantly improve symptoms. There was also no significant effect of the intervention on caregiver quality-of-life scores in both the control and caregiver training groups.

Conclusions:

Caregivers have a major role in the outcome of a successful transition from hospital to home. This study provides information about caregiver training that improved their self-efficacy when addressing symptom management of a family member with cancer. More research is needed to determine the most effective caregiver training to manage patients’ symptoms at home.

Limitations:

  • Nurses delivering the caregiver training intervention and the control intervention were not blinded.
  • Assessment of the delivery of control and caregiver training intervention did not occur.
  • The sample was mostly white, educated, and married.
  • Caregivers were not observed providing actual home care and symptom management interventions.

Nursing Implications:

Caregiver training for the patient’s home care and symptom management is critical in bridging the transition for patients from hospital to outpatient care. Nurses play a key role in this caregiver training tailored to specific caregiver and patient needs. Evidence-based information about the most effective training, including decisions about frequency, dosing, timing, formatting of information, and preparation of the nurse, is needed to improve caregiver quality of life and psychological well-being.

Systematic Review/Meta-Analysis

Griffin, J.M., Meis, L., Carlyle, M., Greer, N., Jensen, A., MacDonald, R., & Rutks, I. (2013). Effectiveness of family and caregiver interventions on patient outcomes among adults with cancer or memory-related disorders: A systematic review. Retrieved from http://www.hsrd.research.va.gov/publications/esp/caregiver-interventions.pdf

http://www.hsrd.research.va.gov/publications/esp/caregiver-interventions.pdf
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Purpose:

STUDY PURPOSE: To explore whether family-involved interventions for reducing burden and improving caregiver skills improve five outcomes for adult patients diagnosed with cancer or memory-related disorders (more specifically, to explore the benefits of psychosocial interventions delivered by family or a caregiver as compared to usual care or wait-listed care for those patients), and to identify the benefits of a caregiver or family psychosocial intervention as compared to a different family-related intervention or patient-directed intervention for those patients

TYPE OF STUDY: Systematic review

Search Strategy:

DATABASES USED: MEDLINE (Ovid) and PsycINFO
 
KEYWORDS: family; couples; home nursing; legal guardians; couple therapy; family therapy; or marital therapy
 
INCLUSION CRITERIA: Conducted in the United States; involved patients at least 18 years of age with a physical health condition; involved a family member or adult patient caregiver; reported patient outcomes of interest (e.g., quality of life, depression and anxiety, symptom control and management, health utilization, relationship adjustment); involved a control group; appeared in peer-reviewed publication in English after 1995
 
EXCLUSION CRITERIA: Noncancer or not a memory-related disorder

Literature Evaluated:

TOTAL REFERENCES RETRIEVED = 2,771
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Quality ratings reported

Sample Characteristics:

  • FINAL NUMBER STUDIES INCLUDED = 27 
  • SAMPLE RANGE ACROSS STUDIES: 12–476 (median of 120 dyads/sample)
  • TOTAL PATIENTS INCLUDED IN REVIEW = 3,345 patients in analysis for 26 trials
  • KEY SAMPLE CHARACTERISTICS: Patients: the average age was 60 years (range: 46–71 years); 80% were married; 51% were male, and the majority had prostate cancer; 49% were female, with most having breast cancer; 79% were white. Family members: the average age was 56 years (range: 49–62 years); 61% were female; no other family caregiver data reported

Phase of Care and Clinical Applications:

  • PHASE OF CARE: Multiple phases of care
  • APPLICATIONS: Palliative care 

Results:

The systematic review, focused on five interventions for cancer, indicated some support for family-involved interventions over usual care for decreasing patient anxiety and depression. Weak evidence was found for better patient outcomes with family-involved interventions as compared to patient-focused or health education/psychoeducational interventions. Family-involved interventions, directed toward specific subgroups of patients and those involving teaching of skills to meet patient needs, may be more effective for alleviating cancer symptoms and depression and anxiety than usual care. Little evidence was found that symptom management (e.g., pain, fatigue, nausea), quality of life, or relationships adjustment between the patient and family caregiver improved following interventions examined for the systematic review. Only 2 of the 27 trials received a “good” quality evaluation, mandating caution in applying findings to practice.

Conclusions:

The systematic review found heterogeneous studies and evidence that family-involved interventions improved patient depression but had little effect on their anxiety and physical health.

Limitations:

  • Study findings resulted from 25 of 27 trials (RCTs) deemed as “poor” or “fair” in quality without observational evidence to support other findings.
  • Some studies focused on interventions specific to improving caregiver and family health, which was not the review focus.
  • Study samples were limited to those with cancer or memory-related illness.
  • Non-inclusion of large-scale interventions similar to those used by the Department of Veterans Affairs
  • Lack of data to assess the intervention effect on healthcare utilization
  • Limited study generalizability

Nursing Implications:

Current evidence indicates that targeted interventions for specific conditions, behaviors, and symptoms of the cancer experience may improve patient outcomes and minimize caregiver burden. Previous evidence has shown that psychosocial/psychoeducational interventions with caregivers reduce caregiver strain and burden. Findings from this systematic review provide some evidence that such interventions aimed at the family, rather than the individual caregiver or caregiver/patient dyad, may not substantially improve caregiver outcomes, while skill training for family members may be helpful. Additional work in this area is needed to determine the best foci and method of delivery of these types of interventions.


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