Supportive Care/Support Interventions

Supportive Care/Support Interventions

PEP Topic 
Caregiver Strain and Burden
Description 

Supportive care involves the provision of emotional support informally or through structured interventions. Support interventions include activities such as general counseling related to emotional and other issues, active listening, and presence. Supportive interventions may be provided by healthcare professionals or may be structured as peer group support. Interventions can be one-on-one individualized sessions, support group sessions, or specific interventions with caregivers, families, etc. Support interventions may be provided via telephone, physical presence, or online groups that may be either referereed by a professional or unrefereed. Expressive writing for emotional disclosure can be seen as a specific type of supportive intervention; however, it is not grouped in the intervention of supportive care. Expressive writing, as a very specific approach, is evaluated in ONS PEP resources as its own type of intervention. Supportive care/support interventions have been evaluated in patients with cancer for anxiety, caregiver strain and burden, chemotherapy-induced nausea and vomiting, and depression.

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Likely to Be Effective

Research Evidence Summaries

Chih, M.Y., DuBenske, L.L., Hawkins, R.P., Brown, R.L., Dinauer, S.K., Cleary, J.F., & Gustafson, D.H. (2013). Communicating advanced cancer patients' symptoms via the Internet: A pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood. Palliative Medicine, 27, 533–543. 

doi: 10.1177/0269216312457213
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Study Purpose:

To examine the effects of an online symptom reporting system on caregiver negative mood, preparedness, and perceptions of physical burden

Intervention Characteristics/Basic Study Process:

Following recruitment, patients were randomized to either the  Comprehensive Health Enhancement Support System (CHESS) only intervention or CHESS plus clinician report (CR). The CHESS only group of patient-caregiver dyads accessed the CHESS website for coaching, information, and communication resources for advanced-stage cancer care. At baseline and weekly, dyads “checked in” to CHESS to report needs and symptoms informed by the Edmonton Symptom Assessment System (ESAS) and Eastern Cooperative Oncology Group Performance Status. “Checking in” allowed symptom tracking to evaluate patient improvement or decline. Caregivers also reported preparedness and caregiving burden and could pose questions for future clinical visits. The CHESS plus CR group would access the CHESS website as well as have access to the ePRO system (CR) that delivered dyadic tracking information and alerts to clinicians when the patient or caregiver met certain criteria of concern. The ePRO system would support clinicians’ timely response to improve caregiver management of patient symptoms and lessen burden. Intervention technical support was provided to both groups. CHESS intervention access varied from 12–24 months based on patient diagnosis, and caregivers sequentially were assessed following the intervention.

Sample Characteristics:

  • N = 235 caregiver-patient dyads
  • MEAN AGE = 56 years for caregivers
  • MALES: 35.8%, FEMALES: 64.2%
  • KEY DISEASE CHARACTERISTICS: Recruited patients with advanced-stage prostate, breast, or lung cancer who received usual care, including palliative or curative treatment
  • OTHER KEY SAMPLE CHARACTERISTICS: The majority of caregivers were white, spousal caregivers, educated beyond high school, and had moderate comfort with Internet use

Setting:

  • SITE: Multi-site  
  • SETTING TYPE: Home  
  • LOCATION: Northeast, Midwest, and Southwest U.S. cancer centers

Phase of Care and Clinical Applications:

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

Study Design:

  • Pooling of two randomized trials of unblinded patient-caregiver dyads
    • Data analyzed by general linear mixed modeling

Measurement Instruments/Methods:

  • ESAS—modified for study; measured dyadic symptom distress; no reliability or validity reported but used in previous studies
  • Preparedness Scale (subscale of Family Care Inventory)—used to examine caregiver task preparedness; had sustained high internal consistency (Cronbach’s alpha = 0.79–0.85)
  • Physical Burden Scale (subscale of Caregiver Burden Inventory)—used to examine effect of caregiving on caregiver health; high sustained internal consistency (alpha = 0.78–0.85)
  • Shortened Version of the Profile of Mood States (SV-POMS)—used to measure caregiver negative mood and depression; sustained high internal consistency (alpha = 0.92–0.96)

Results:

Caregivers in the CHESS plus CR group reported more positive moods than those in the CHESS alone group at 6 months (p = 0.009) and 12 months (p = 0.004). However, the two groups did not differ significantly on caregiver preparedness or physical burden at 6- and 12-month assessment.

Conclusions:

Online delivery of information, communication, and coaching resources, combined with a format that supports patient and caregiver reporting of symptoms to facilitate clinician-caregiver timely communication, has the potential to improve caregiver mood and minimize distress of patients with advanced-stage cancer.

Limitations:

  • Key sample group differences that could influence results—authors report that results may underestimate the potential impact of CHESS plus CR for those who benefit the most
  • Findings not generalizable—authors report that the majority of patients in the sample are well-educated Caucasians. This may limit the ability to generalize the results to other ethnic populations. As a result of CR being integrated in CHESS, the study could not assess how CR alone would influence caregiver outcomes.
  • Subject withdrawals 10% or greater
  • Other limitations/explanation: Lack of blinding for caregivers, patients, and clinicians

Nursing Implications:

Advances in technology offer opportunities for oncology clinicians to partner with patients and their caregivers to promote patient and caregiver health during the cancer trajectory. Issues such as clinician heavy workload and continued clinical focus on patient needs challenge oncology clinicians in redefining workplace approaches to improve outcomes for patients and their caregivers.

Harding, R., Higginson, I.J., Leam, C., Donaldson, N., Pearce, A., George, R., . . . Taylor, L. (2004). Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. Journal of Pain and Symptom Management, 27(5), 396–408.

doi: 10.1016/j.jpainsymman.2003.09.012
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Study Purpose:

A short-term, closed, multiprofessional group aimed to promote self-care by combining informal teaching with group support.

Intervention Characteristics/Basic Study Process:

A single group facilitator introduced multiprofessional input from a changing weekly speaker during six, 90-minute weekly sessions. Groups were capped at 12 caregivers.

The group initially focused on patient issues, and transportation for caregivers and a patient-sitting service were provided when necessary.

A total of four groups were delivered with peer supervision to ensure consistency of the intervention.

Sample Characteristics:

  • N = 73 adult, informal, unpaid caregivers of patients receiving palliative care (86% of patients had a diagnosis of cancer)

Setting:

  • Home palliative care services in London, United Kingdom

Study Design:

The study design was a prospective, observational, comparative (no randomization) between those who accepted the intervention (n = 36) and those who declined the intervention but agreed to data collection in the first wave (n = 37); limitations existed in group assignment.

Measurement Instruments/Methods:

  • Zarit burden inventory
  • Palliative outcome scale
  • Eastern Cooperative Oncology Group performance scale
  • Coping responses inventory
  • General health questionnaire-12
  • State anxiety scale

Results:

The intervention was not found to affect outcomes for any measures at post-intervention (eight weeks) or follow-up (five months).

Limitations:

  • The study had no randomization.
  • Participants had a choice of comparison group.
  • Little information was given about the training or preparation of the group facilitator.
  • The sample was mostly Caucasian.
  • Attrition was a problem.

McCorkle, R., Siefert, M.L., Dowd, M.F., Robinson, J.P., & Pickett, M. (2007). Effects of advanced practice nursing on patient and spouse depressive symptoms, sexual function, and marital interaction after radical prostatectomy. Urologic Nursing, 27, 65–77; discussion 78–80.

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Study Purpose:

To determine the effect of a standardized nursing intervention on protocol (SNIP) on newly diagnosed men and their female spouses on marital interaction, sexual function, and depressive symptoms following radical prostatectomy over a six-month period

Intervention Characteristics/Basic Study Process:

Couples were randomly assigned to an intervention (SNIP) or a usual care group. The usual care group received care according to standards identified by the urology clinic group, and the SNIP group dyads received 16 contacts (twice per week: home visit and telephone call) from an advanced practice nurse (APN) specially trained for the study to deliver an evidence-based protocol. Dyad conversations with APNs evolved from reading of a common public education booklet given to couples during the SNIP intervention. Measurement of outcome variables (depression, marital interaction, and sexual function) occurred in both the usual and intervention groups at baseline and one, three, and six months following radical prostatectomy.

Sample Characteristics:

  • The sample was comprised of 107 patient–spouse pairs (54 in the SNIP group; 53 in the usual care group).
  • Of the sample spouses, 82.3% were age 45–64 years; of the patients, 77.6% were age 45–64 years.
  • Spouses were female (100%).
  • Patients all had a radical prostatectomy due to cancer; spouses had one to three comorbidities, although further specifics about the type of morbidities do not appear in the article.
  • Spouses were predominantly white (85.1%), married to the patient (93.5%), had some college education (63.6%), and were employed (57%).
  • Patient and spousal income placed couples in middle to upper socioeconomic class (annual income greater than $50,000).
  • Couples lived within 50 miles of the study centers.

Setting:

  • Two academic medical centers
  • Northeastern United States

Study Design:

The study design was secondary data analysis of a prospective, randomized clinical trial with repeated measures.

Measurement Instruments/Methods:

  • Center for Epidemiological Studies–Depression Scale (CES-D)
  • Center Rehabilitation Evaluation System (CARES): 26 items are representative of two of five subscales that assessed sexual interest/dysfunction and marital interaction. Reliability of the two subscales ranged from 0.66 to 0.85 across measurements collected at one, three, and six months of the study.

Results:

Analysis of variance procedures indicated that among patients, outcome measures showed no indication of main effects due to group assignment. However, spouses had significant differences for some of the measures at six months, with the SNIP group spouses having higher depression scores that approached significance. The SNIP spouses also had a higher average sexual function distress score and a significantly higher marital interaction distress score than did the control group spouses. Spouses reported significantly higher levels of depressive symptoms and more marital interaction distress as compared to patients. However, patients reported significantly more sexual function distress than did their spouses. The SNIP intervention had no group effect on depressive symptoms, but such symptoms improved over time in both patients and spouses. The SNIP intervention showed a modest effect on patients’ sexual function and marital interaction over time, with SNIP patients and spouses reporting increased distress. However, control group women reported significantly lower rates of sexual functioning distress over time compared to the SNIP group. Pearson correlations showed patient depressive symptoms related to patient marital interaction, spousal depressive symptoms, and spousal marital interactions.

Conclusions:

An intervention such as SNIP can effectively address depressive symptoms of newly diagnosed patients with prostatectomy and their spouses, as well as relevant issues such as patient sexual function and marital interaction that change with radical prostatectomy. A trained nurse, delivering an evidence-based intervention focused on the needs of these dyads, can assist them in understanding expected postsurgical changes and implementing actions to foster hope and recovery within the dyad.

Limitations:

  • The study had a limited non-white sample.
  • The study had a small sample size to exert sufficient power to identity significant changes between the SNIP group and the usual care group.

Nursing Implications:

Nurses should routinely assess depressive symptoms of patients and their primary support system to define needed interventions during cancer treatment. Patient and spouse (caregiver) teaching about common side effects of cancer treatment, ways of responding to those side effects, and the potential for recovery of earlier functions should be included at each patient encounter. Support groups for both patients and caregivers may further bolster networking with others who have “moved beyond” the early consequences of prostate surgery and offer hope to recent surgical patients and their spouses. An evidence-based intervention delivered by APNs, such as the one used in this study, offers structure and process of care to promote quality care of those individuals.

Toseland, R.W., Blanchard, C.G., & McCallion, P. (1995). A problem solving intervention for caregivers of cancer patients. Social Science and Medicine, 40, 517–528.

doi: 10.1016/0277-9536(94)E0093-8
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Intervention Characteristics/Basic Study Process:

An experienced oncology social worker with a master’s degree in social work led six individual, one-hour counseling sessions. All participants attended at least four sessions. The sessions included three components: support, problem solving, and coping skills.

Sample Characteristics:

  • The sample (N = 78) was comprised of caregivers of patients who had received a cancer diagnosis at least three months prior.
  • Patients scored a 1–3 on the Eastern Cooperative Oncology Group Global Performance Scale.

Setting:

Regional medical oncology center

Study Design:

The study was a properly designed randomized controlled trial: intervention (n = 38) versus standard available care (n = 40).

Measurement Instruments/Methods:

  • Zarit Burden Inventory
  • Caregiving Mastery and Caregiving Satisfaction subscales of the Lawton Caregiving Appraisal Composite Scale
  • Montgomery and Borgatta Burden Scale
  • Center for Epidemiologic Studies–Depression Scale
  • State-Trait Anxiety Inventory
  • Dyadic Adjustment Scale (used to measure marital satisfaction)
  • Social Functioning Subscale of the Health and Daily Living Form (adapted; used to measure social support)
  • Medical Outcomes Study Short Form–20
  • Help Seeking Coping Index
  • Index of Coping Responses

Results:

For caregivers who reported high levels of burden, the intervention led to a significant improvement in their ability to cope with pressing problems. No main effects of the intervention were found on any outcome variable. For caregivers who reported low marital satisfaction, the intervention led to improvement in physical, role, and social functioning.

Limitations:

  • The study had a small sample, with only 27% of those eligible agreeing to participate.
  • The sample was primarily Caucasian.
  • Contamination of the control group was reported.

Systematic Review/Meta-Analysis

Glasdam, S., Timm, H., & Vittrup, R. (2010). Support efforts for caregivers of chronically ill persons. Clinical Nursing Research, 19, 233–265.

doi:10.1177/1054773810369683
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Purpose:

To conduct a thorough systematic review of interventions aimed at families with chronically ill members and to describe and critically evaluate these interventions for caregivers of chronically ill persons

Search Strategy:

  • PubMed MEDLINE, CINAHL, Cochrane Library, EMBASE, and PsycINFO (English only) databases were used. After the initial search, one additional search occurred in Web of Science, SocINDEX, Sociological Abstracts, and ERIC (no citations from the additional search were included).
  • Key words were chosen based on predefined terms of each database, with main focus on the following words: intervention, caregivers, and diagnoses of diabetes, cardiovascular disease, cancer, or stroke.
  • Studies included in the search addressed the selected diagnoses (stroke, cardiovascular disease, cancer, or diabetes) and were reviews and controlled studies published in English between 1997 and 2007.
  • Studies that used patients younger than 18 years of age and dying adults were excluded.

Literature Evaluated:

  • Forty-six studies were initially reviewed. Included in the report were 32 controlled studies (29 with randomization) described in 35 articles (stroke = 19, cancer = 10, cardiovascular disease = 3, and diabetes = 0). Study quality was addressed via author collaboration.
  • Of the 32 studies, 12 were from the United States, and an additional 10 were completed in Western Europe. All patient with cancer/caregiver studies supported an international perspective.

Sample Characteristics:

  • The final sample of 32 studies included 4,264 patients.
  • Across studies, samples ranged from 30 to 1,040 caregiver/patient dyads.
  • Very few studies addressed dropout rates and reasons for that occurrence.
  • Participants were diagnosed mostly with stroke, then cancer, and least of all cardiovascular disease; no other information appears in the study information about samples.

Results:

Experimental interventions provided support to caregivers, patients, or both. Of the 32 studies, 4 interventions addressed caregivers alone and 32 interventions addressed both patients and caregivers. All experimental interventions included health professional–led discussion and guidance to increase knowledge, comfort, or resource allocation for persons addressed in the study. Educational delivery occurred at individual, couple, and group levels, and sessions occurred in a variety of inpatient and outpatient areas, including the patient’s/caregiver’s home. Half of the interventions involved home visits by a professional who taught, counseled, or helped a participant with practical home roles.

All studies involving patients with cancer or caregivers used hospital-based interventions and centered on alleviating physical and psychosocial concerns of patients with cancer. Although the focus of interventions was the same for patients experiencing stroke and cardiovascular disease, most interventions occurred in the home with a focus on caregiver well-being.

Educational interventions incorporated cognitive-behavioral therapy to support knowledge transfer that would improve participant well-being. Some studies compared different forms of an intervention (e.g., individual versus group), and some interventions included sites and telephone contacts. No studies considered or changed an intervention based on the participant’s social background. Professional actors of studies were mostly nurses and healthcare providers prepared at the bachelor's degree. The authors noted across disease groupings that interventions fit into the following areas: caregiver experience with burden, level of knowledge, skills mastery, and satisfaction.

Of 32 studies, 22 reported effects in one or more areas that the intervention targeted. Studies that showed a positive intervention effect mostly focused on caregiver burden and mastery of skills to provide care. However, the authors noted that it is not possible to support any consistency between interventions because many different instruments used in the 32 studies measured the same variable (e.g., 26 measures for depression).

Conclusions:

The authors noted that the systematic review guides the following conclusions:

  • There is a lack of knowledge supported by evidence about the effect of interventions on caregivers examined in this study; this inadequate level of evidence shows a need to challenge the quality of the studies.
  • The effect of interventions targeting caregivers of chronically ill patients is inconclusive and recommendations on the type of intervention that would be most appropriate cannot be made. Few studies exist that document the effect of interventions on caregivers of chronically ill patients because most times the ill patient is the focus of the healthcare team. The few documented studies often lack sufficient rigor to support changed clinical practice for caregivers and the patients they serve.
  • Interventions with a different, broader focus than short-term education or group dynamic process in a secondary healthcare setting should be considered.
  • Further work should build on connections between randomized control studies with reliable and valid instruments and strong definition of an intervention that  may show significant intervention effects. This evidence will provide credible data for how to change and improve clinical practice.
  • Additional qualitative work may inform understanding of ways health providers can create knowledge of caregivers through building on content and process of care already known to caregivers. This collaboration will allow tailoring of psychosocial and learning interventions for caregivers with unique histories and needs to support their health and ability to continue their caregiving role.

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