Psychosocial interventions for informal caregivers of people living with cancer

Treanor,  C.J. | 2019| Psychosocial interventions for informal caregivers of people living with cancer| Cochrane Database of Systematic Reviews |6. Art. No| CD009912| DOI: 10.1002/14651858.CD009912.pub2.

Reviewers have assessed the effectiveness of psychosocial interventions designed to improve the quality of life (QoL), physical health and well‐being of informal caregivers of people living with cancer compared with usual care. Their findings have now been published by Cochrane. 

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Psychosocial support for informal caregivers of people living with cancer

Background

Increasingly, people who are not health professionals provide care for a partner, family member or friend affected by cancer, which can have negative effects on their health and well‐being. Psychosocial interventions that comprise psychological or social support and involve direct interaction between a healthcare professional and caregivers (or caregiver‐patient pairs) may help to address the negative health effects for caregivers.

Review question

What is the effectiveness of psychosocial interventions compared to usual care for informal caregivers of people living with cancer on a range of outcomes related to health and well‐being?

Results

We found19 trials that compared psychosocial interventions with usual care, in studies that included almost four thousand participants. Studies included caregivers of people affected by different cancers across all stages of the disease. There were differences in intervention make‐up. Intervention examples include providing information and/or teaching caregivers (or caregiver‐patient pairs) coping, communication or problem‐solving skills to manage symptoms or improve relationships. Interventions were delivered by nurses, psychologists or other professionals on an outpatient basis or at home via telephone.

There may be a minimal benefit for caregiver quality‐of‐life immediately after the intervention, but this may not last. Psychosocial interventions may have little to no effect on quality of life for patients six to 12 months post‐intervention, but we are uncertain whether or not interventions improve quality of life for patients immediately post‐intervention.

Psychosocial interventions may have little to no effect on caregiver depression, anxiety, distress and physical health and patient anxiety and distress at any time after the intervention, or on patient depression immediately and patient physical health six to 12 months post‐intervention. Psychosocial interventions probably have little to no effect on patient physical health immediately post‐intervention or patient depression three to six months post‐intervention.

Three studies reported adverse effects including increased distress and sexual function‐related distress and lower relationship satisfaction levels for carers, increased distress levels for patients, and intervention content that was seen as inappropriate for some participants. No studies looked at cost‐effectiveness or intervention satisfaction for caregivers or patients. Because the quality of evidence was low generally, findings must be treated with caution.

Conclusion

Psychosocial interventions do not impact to a clinically meaningful degree outcomes for caregivers irrespective of patient cancer stage or type. Perhaps, other outcomes (e.g. relationship quality) or other psychosocial interventions (e.g. meditation) may be more helpful for caregivers. Interventions should be subjected to better conducted trials. Intervention development should involve caregivers and pay particular attention to individual personal needs (Source: Cochrane).

Read the full review and abstract at Cochrane Library

Nurse-led intervention helps carers’ manage medication and cancer pain

The potential benefits of a new nurse-led intervention in supporting carers to manage pain medication in people with terminal cancer are explored in this article | ScienceDaily

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Image source: frankieleon – Flickr // CC BY 2.0

A study funded by Marie Curie and Dimbleby Cancer Care published today shows the potential benefits of a new nurse-led intervention in supporting carers to manage pain medication in people with terminal cancer. Researchers from the University of Southampton, Cardiff University and University of Leeds have developed a nurse-led intervention to help carers with medication management, and evaluated its use in routine practice.

The Cancer Carers’ Medicines Management (CCMM) intervention addresses carers’ beliefs, knowledge and skills and promotes self-evaluation of competence. It centres on a structured conversational process between a nurse and carer. It is the first time that a study has attempted to integrate an intervention developed using input from carers and nurses into routine palliative care. The research showed that the CCMM intervention compared favourably with current practice as it offered a more systematic and comprehensive approach to supporting carer management of pain medicines.

Quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients

Anneke Ullrich et. al. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients BMC Palliative Care. Published online 10 May 2017.

Background

This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey.

Methods

During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions.

Results

FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3).

Conclusions

This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high.

Full document available here

Dying at home of cancer: whose needs are being met?

Pottle, J. et al. BMJ Supportive & Palliative Care. Published online: 16 January

clasped-hands-541849_960_720Objectives: Supporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: ‘How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)?

Conclusions: We have shed light on the complexity of balancing the demands and the satisfaction of caring for someone dying at home. The ability to manage these conflicting needs influenced whether carers perceived the home setting as the best place for the person to have received care in their last days of life.

Read the full abstract here

Development of a conceptual model of cancer caregiver health literacy

Yuen, E. Y. N. et al. European Journal of Cancer Care. Volume 25, Issue 2, pages 294–306, March 2016

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Image source: Rachel Johnson

Caregivers play a vital role in caring for people diagnosed with cancer. However, little is understood about caregivers’ capacity to find, understand, appraise and use information to improve health outcomes. The study aimed to develop a conceptual model that describes the elements of cancer caregiver health literacy.

Six concept mapping workshops were conducted with 13 caregivers, 13 people with cancer and 11 healthcare providers/policymakers. An iterative, mixed methods approach was used to analyse and synthesise workshop data and to generate the conceptual model.

Six major themes and 17 subthemes were identified from 279 statements generated by participants during concept mapping workshops. Major themes included: access to information, understanding of information, relationship with healthcare providers, relationship with the care recipient, managing challenges of caregiving and support systems.

The study extends conceptualisations of health literacy by identifying factors specific to caregiving within the cancer context. The findings demonstrate that caregiver health literacy is multidimensional, includes a broad range of individual and interpersonal elements, and is influenced by broader healthcare system and community factors. These results provide guidance for the development of: caregiver health literacy measurement tools; strategies for improving health service delivery, and; interventions to improve caregiver health literacy.

Read the abstract here