Una Stenberg

Review of the literature on the effects of caring for a patient with cancer

Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience.

To Live Close to a Person With Cancer—Experiences of Family Caregivers

The purpose of this study was to obtain a deeper understanding of the experiences of Family Caregivers (FC) living close to a patient with cancer. This article reports on the findings from individual interviews with 15 FCs of patients with cancer. The interview transcripts were analyzed using qualitative hermeneutic analysis. This study revealed that living close to a cancer patient over the course of his or her illness affected many aspects of FCs lives in significant ways. Their experiences can be summarized with two major themes: (1) living in an ever changing life world and (2) balancing between conflicting interests and dilemmas. This study contributed to deeper insights into FCs experiences than previously reported in the literature.

Living Close to a Person With Cancer: A Review of the International Literature and Implications for Social Work Practice

To help family caregivers (FCs), social workers need to understand the complexity of FC’s experiences and challenges. For this systematic review, several relevant, multidisciplinary electronic databases were searched. Of 1,643 titles identified, 108 articles met the inclusion criteria and are included in this review. Various experiences, symptoms, and burden related to caregiving responsibilities are described and discussed. The understanding evolving from this study about the FC’s own health risk, caregiver burden, and experiences over time can enhance a social worker’s awareness of an FC’s challenging situation and the potential impact this has on the FC’s ability to provide care to the patient.

Patient Insights Into the Design of Technology to Support a Strengths-Based Approach to Health Care.

Background An increasing number of research studies in the psychological and biobehavioral sciences support incorporating patients’ personal strengths into illness management as a way to empower and activate the patients, thus improving their health and well-being. However, lack of attention to patients’ personal strengths is still reported in patient–provider communication. Information technology (IT) has great potential to support strengths-based patient–provider communication and collaboration, but knowledge about the users’ requirements and preferences is inadequate. Objective This study explored the aspirations and requirements of patients with chronic conditions concerning IT tools that could help increase their awareness of their own personal strengths and resources, and support discussion of these assets in consultations with health care providers. Methods We included patients with different chronic conditions (chronic pain, morbid obesity, and chronic obstructive pulmonary disease) and used various participatory research methods to gain insight into the participants’ needs, values, and opinions, and the contexts in which they felt strengths-based IT tools could be used. Results Participants were positive toward using technology to support them in identifying and discussing their personal strengths in clinical consultation, but also underlined the importance of fitting it to their specific requirements and the right contexts of use. Participants recommended that technology be designed for use in preconsultation settings (eg, at home) and felt that it should support them in both identifying strengths and in finding out new ways how strengths can be used to attain personal health-related goals. Participants advocated use of technology to support advance preparation for consultations and empower them to take a more active role. IT tools were suggested to be potentially useful in specific contexts, including individual or group consultations with health care providers (physician, nurse, specialist, care team) in clinical consultations but also outside health care settings (eg, as a part of a self-management program). Participants’ requirements for functionality and design include, among others: providing examples of strengths reported by other patients with chronic conditions, along with an option to extend the list with personal examples; giving an option to briefly summarize health-related history; using intuitive, easy-to-use but also engaging user interface design. Additionally, the findings are exemplified with a description of a low-fidelity paper prototype of a strengths-based tool, developed with participants in this study. Conclusions Users requirements for IT support of a strengths-based approach to health care appear feasible. The presented findings reflect patients’ values and lists potential contexts where they feel that technology could facilitate meaningful patient–provider communication that focuses not just on symptoms and problems, but also takes into account patients’ strengths and resources. The findings can be used to inform further development of IT tools for use in clinical consultations.

Health Care Professionals’ Perspectives of the Experiences of Family Caregivers During In-Patient Cancer Care:

Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals’ perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients’ in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals’ perceptions of FCs during the patient’s in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC’s needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.

Family Caregivers of Cancer Patients : Perceived Burden and Symptoms During the Early Phases of Cancer Treatment

This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals’ awareness of FCs’ challenging situation and the potential impact this has on the FCs’ ability to provide care to the patient.

Health Economic Evaluations of Patient Education Interventions A Scoping Review of the Literature

OBJECTIVES To provide a comprehensive overview of health economic evaluations of patient education interventions for people living with chronic illness. METHODS Relevant literature published between 2000 and 2016 has been comprehensively reviewed, with attention paid to variations in study, intervention, and patient characteristics. RESULTS Of the 4693 titles identified, 56 articles met the inclusion criteria and were included in this scoping review. Of the studies reviewed, 46 concluded that patient education interventions were beneficial in terms of decreased hospitalization, visits to Emergency Departments or General Practitioners, provide benefits in terms of quality-adjusted life years, and reduce loss of production. Eight studies found no health economic impact of the interventions. CONCLUSIONS The results of this review strongly suggest that patient education interventions, regardless of study design and time horizon, are an effective tool to cut costs. This is a relatively new area of research, and there is a great need of more research within this field. PRACTICE IMPLICATIONS In bringing this evidence together, our hope is that healthcare providers and managers can use this information within a broad decision-making process, as guidance in discussions of care quality and of how to provide appropriate, cost-effective patient education interventions.

Personal strengths reported by people with chronic illness: A qualitative study

Self‐management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person‐centred approaches into health care.