Family Caregiver Strain and Burden: A Systematic Review of Evidence-Based Interventions When Caring for Patients With Cancer

Jadalla, Ahlam; Ginex, Pam; Coleman, Meghan; Vrabel, Mark; Bevans, Margaret

doi:10.1188/20.cjon.31-50

Cited by 51 publications

(28 citation statements)

References 122 publications

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“…Psychoeducational, psychosocial (Hudson et al, 2010) and behavioural (Chi et al, 2016) interventions have especially been found to have a positive impact on family members, particularly on their burden, coping and self‐efficacy. Interventions combining different elements (Jadalla et al, 2020) and mindfulness‐based interventions also reduce depression and burden in caregivers and improve their quality of life (Jaffray et al, 2016). In some studies, attempts to relieve anxiety and depression (Ahn et al, 2020; Becqué et al, 2019; Northouse et al, 2010) or improve quality of life (Alam et al, 2020) have nevertheless remained deficient.…”

Section: Introductionmentioning

confidence: 99%

Supportive interventions for family members of very seriously ill patients in inpatient care: A systematic review

Soikkeli‐Jalonen

Mishina

Virtanen

et al. 2021

Journal of Clinical Nursing

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Aims and objectives To systematically review existing literature exploring supportive interventions for family members of very seriously ill patients in inpatient care. Background Being around a patient with a very serious illness in inpatient care setting is stressful and burdensome for family members. There is little information available on interventions that support family members of very seriously ill patients in inpatient care. Design A systematic review. Methods The literature review was conducted in May 2020 using four databases: PubMed (Medline), CINAHL, PsycINFO and Cochrane. A quality assessment was performed using the Quality Assessment Tool for Before‐After (Pre‐Post) Studies With No Control Group by the National Heart, Lung, and Blood Institute. The PRISMA checklist was used to support specific reporting and the TIDieR checklist to form detailed descriptions of the interventions. Results Of the 7165 identified studies, 11 studies were included in the review based on predetermined criteria. Interventions were based on meetings with family members, education or therapy. Mindfulness‐ and therapy‐based interventions and multiple‐session tailored interventions showed beneficial outcomes for psychological symptoms and educational interventions on preparedness and self‐efficacy. Several different measuring instruments to evaluate similar outcomes, such as psychological symptoms and coping, were used. Conclusions Only a few supportive interventions for family members of very seriously ill patients in inpatient care were found, which made comparing the differences in the varying study methods and outcomes difficult. More studies on supportive interventions and their feasibility and effectiveness are essential. Further evaluation of instruments is necessary to identify the most valid and reliable ways of measuring symptoms and coping. Relevance to Clinical Practice The results of this study can be used in clinical practice when selecting effective interventions or assessing family members' need for support. Additionally, the results can be used for guidance when developing new, effective interventions.

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Section: Introductionmentioning

confidence: 99%

Supportive interventions for family members of very seriously ill patients in inpatient care: A systematic review

Soikkeli‐Jalonen

Mishina

Virtanen

et al. 2021

Journal of Clinical Nursing

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“…The latter had the largest expression in our study (76.2%). This result is understandable if we admit that it actually represents the convergence of the different identified contributions [ 36 , 98 , 103 , 107 , 110 ].…”

Section: Discussionmentioning

confidence: 82%

Patient reported outcomes in oncology: changing perspectives—a systematic review

Silveira

Sequeira

Gonçalves

et al. 2022

Health Qual Life Outcomes

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In public health context, oncology is associated with severe negative impact on patients and on their relatives’ quality of life. Over the last decades, survival has remained at 50% worldwide for some tumor locations. Patient reported outcomes (PROs) assessment and, the corresponding use in clinical practice, help establishing patient individualized profiling involving caregivers. The purpose of this systematic review was to examine critical success factors for PROs assessment in daily clinical oncology practice. Additionally, we investigated how PROs collection can change oncology perspectives for patients and caregivers. According to PRISMA guidelines, 83 studies were included in this systematic review, whether related with implementation in daily clinical practice or associated with its use in oncology. PROs assessment gathers multi-professional teams, biomedical and clinical expertise, patients, families and caregivers. Institutional involvement, first line for caregiver’s adherence, team continuous formation, encompassing training and support, design of clear workflows, continuous monitoring, and data analysis are crucial for implementation. PROs measures are decisive in oncology. Several items were improved, including caregiver–patient–physician communication, patient risk groups identification, unmet problems and needs detection, disease course and treatment tracking, prognostic markers, cost-effectiveness measurement and comfort/support provision for both patients and caregivers. Routine assessment and implementation of PROs in clinical practice are a major challenge and a paradigm transformation for future.

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“…However, some mentioned that they had the feeling that the focus was entirely on the patient without direct attention to them. Therefore, it may be advised to provide psychosocial support to family caregivers in programs like FIP, as being a family caregiver can be taxing or lower quality of life (Haley, 2003;Hsu et al, 2019;Jadalla et al, 2020;Majestic and Eddington, 2019). Despite the mainly positive experiences of the FIP by family caregivers, some experienced anxiety, exhausting and sleepiness.…”

Section: Discussionmentioning

confidence: 99%

The experiences of family caregivers who participated in a family involvement program after cancer surgery: A qualitative study

Ingen

Horst

Schreuder

et al. 2020

European Journal of Oncology Nursing

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As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients' discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present ('being there') which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones' wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.

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Family Caregiver Strain and Burden: A Systematic Review of Evidence-Based Interventions When Caring for Patients With Cancer

Cited by 51 publications

References 122 publications

Supportive interventions for family members of very seriously ill patients in inpatient care: A systematic review

Supportive interventions for family members of very seriously ill patients in inpatient care: A systematic review

Patient reported outcomes in oncology: changing perspectives—a systematic review

The experiences of family caregivers who participated in a family involvement program after cancer surgery: A qualitative study

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