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
Candy, B., Jones, L., Drake, R., Leurent, B., & King, M. (2011). Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews, 6, CD007617.
STUDY PURPOSE: To assess the effects of support interventions on the psychological and physical health of informal caregivers of patients in the terminal stage of disease
TYPE OF STUDY: Meta-analysis and systematic review
PHASE OF CARE: End-of-life care
APPLICATIONS: Palliative care
Nine studies used interventions aimed to directly support the caregiver, and in five of these, the intervention was also aimed at the patient. In two trials, the aim was to indirectly support the caregiver via patient support. A meta-analysis of eight studies aimed at direct caregiver support to reduce psychological distress, in favor of the intervention (SMD = –0.15, 95% confidence interval [–0.28, –0.02], p = 0.02). Studies measuring improvement in coping or quality of life did not show any significant effect of the intervention. Two trials showed improved access to health services with the intervention, and one did not show any difference between groups in physical health outcomes of the caregivers.
Support interventions aimed directly at the caregiver reduced short-term psychological distress, with a small effect size, and resulted in marginal and insignificant improvements in coping and quality of life.
Supportive interventions provided directly to informal caregivers had small but significant positive effects on caregiver psychological outcomes.
Glasdam, S., Timm, H., & Vittrup, R. (2010). Support efforts for caregivers of chronically ill persons. Clinical Nursing Research, 19, 233–265.
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
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).
The authors noted that the systematic review guides the following conclusions:
Kaltenbaugh, D.J., Klem, M.L., Hu, L., Turi, E., Haines, A.J., & Hagerty Lingler, J. (2015). Using web-based interventions to support caregivers of patients with cancer: A systematic review. Oncology Nursing Forum, 42, 156–164.
STUDY PURPOSE: To survey literature focused on social, psychological, financial, technology, and nursing topics for evidence supporting web-based informational and supportive interventions to improve the health of the caregivers of patients with cancer
TYPE OF STUDY: Systematic review
PHASE OF CARE: Early-stage (breast cancer) to stage 4 (lung cancer)
Three of the five articles used in the systematic review showed that web-based interventions decreased caregiver negative mood. One of the three studies showed that a multifaceted CHESS intervention had a moderate effect size (d = 0.387) to decrease caregiver burden and negative mood (d = 0.436) at six months. Another study using CHESS with a clinical report showed small to moderate effect reducing caregiver negative mood at six months and at one year (d = -0.592). A third study describing an informational intervention showed a large effect size (d = 0.88) on this variable. Two multifaceted interventions and one single-faceted intervention supported lower levels of caregiver stress and perceptions of broad social support. Only two of six studies presented usability score outcomes, and only one study addressed the feasibility of the web-based intervention.
Although only six of 581 initial literacy citations met the systematic review study criteria, those six indicated the successful use of web-based cancer caregiver interventions to meet social and psychological needs. The effect sizes of the six studies compared favorably to traditional interventions focused on caregiver burden, self-efficacy, and quality of life. The limited numbers of articles on web-based interventions that positively affected diverse groups of caregivers’ social, financial, and psychological outcomes support future exploration of the usefulness and feasibility of such interventions for cancer caregiver health.
Studies showing significant effects of web-based cancer caregiver interventions may appear more often in the literature to affect article capturing for this systematic review. The lack of identification of caregiver ethnicity in 80% of the cited studies leaves a gap in understanding how non-Caucasian samples or male caregivers may respond to web-based interventions. Published studies after February 1, 2014 were absent from the review. Only six studies met the criteria for the review.
Increasing the use and success of technology to deliver health-related consumer interventions currently support initial evidence for web-based programs, aligned with traditional cancer care, to improve quality of life of patients with cancer and their caregivers. Additional research identify the dosing of Internet interventions and evidence of the efficacy of various forms of interventions is needed.
Slev, V.N., Mistiaen, P., Pasman, H.R., Verdonck-de Leeuw, I.M., Uden-Kraan, C.F., & Francke, A.L. (2016). Effects of eHealth for patients and informal caregivers confronted with cancer: A meta-review. International Journal of Medical Informatics, 87, 54–67.
PURPOSE: To synthesize evidence regarding effects of eHealth in patients with cancer and informal caregivers from systematic reviews
Evidence was found for positive effects of eHealth on knowledge and perceived support. The findings regarding effects on decision-making were inconsistent. Interventions had some positive effects on patient involvement in healthcare. The findings regarding the effects of Internet support groups on anxiety and depression were mixed. Most interventions were Internet-based and had multiple components of education, support, chat groups, and communications with providers. One study used smart phone applications.
EHealth applications have been shown to have a positive effect on knowledge. Its effects on other aspects of the patient experience are inconsistent.
All but one study were of moderate quality. Studies of low quality were excluded. Types of programs and components varied greatly, making the synthesis of effects for discrete interventions difficult.
eHealth applications may be a useful and practical way to provide patient and caregiver education. Its effectiveness as an intervention for psychological well-being and other outcomes was not clear given the mixed evidence. Ongoing research is needed to determine the full range of potential effects, program components that are most helpful, and needed duration of use for positive effects.
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.
To examine the effects of an online symptom reporting system on caregiver negative mood, preparedness, and perceptions of physical burden
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.
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.
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.
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.
A short-term, closed, multiprofessional group aimed to promote self-care by combining informal teaching with group support.
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.
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.
The intervention was not found to affect outcomes for any measures at post-intervention (eight weeks) or follow-up (five months).
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.
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
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.
The study design was secondary data analysis of a prospective, randomized clinical trial with repeated measures.
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.
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.
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.
Shaw, J.M., Young, J.M., Butow, P.N., Badgery-Parker, T., Durcinoska, I., Harrison, J.D., . . . Solomon, M.J. (2015). Improving psychosocial outcomes for caregivers of people with poor prognosis gastrointestinal cancers: A randomized controlled trial (Family Connect). Supportive Care in Cancer, 24, 585–595.
To assess the effectiveness of an intervention using structured telephone interventions for the caregivers of patients diagnosed with gastrointestinal cancer that had a poor prognosis to improve psychosocial outcomes of the patient and caregiver
This intervention was a randomized, controlled trial in which caregivers were assigned to either the family connect (FC) telephone intervention or usual care. The FC group received four standardized telephone calls in the 10 weeks after patient hospital discharge. The caregivers’ quality of life, caregiver burden, unmet supportive needs, and distress were assessed at three and six months.
This study was a parallel-randomized trial with a 1:1 group allocation.
Caregiver QOL scores were similar in both groups. The group that was randomized to receive the intervention reported a greater sense of social support and reduced worry about finances, and they also had fewer rehospitalization and emergency department visits.
This intervention did not demonstrate significant improvements in quality of life or sense of well-being for the caregivers. There were some trends observed through data analysis, which warranted the continued development of meaningful, telephone-based, caregiver-focused supportive care interventions.
This study did demonstrate the potential to improve patient and caregiver QOL. Future nursing research should focus on continuing to educate caregivers with strategies to identify and address patient care needs, which can ultimately reduce the overall cost to healthcare systems.
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.
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.
Regional medical oncology center
The study was a properly designed randomized controlled trial: intervention (n = 38) versus standard available care (n = 40).
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.