Partners and close family members of long‐term cancer survivors: health status, psychosocial well‐being and unmet supportive care needs

Turner, Daniel Cross; Adams, Eike; Boulton, Mary; Harrison, Siân; Khan, Nada; Rose, Peter W.; Ward, Alison; Watson, Eila

doi:10.1002/pon.2050

Cited by 61 publications

(67 citation statements)

References 36 publications

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“…They indicated that they have already received a lot of information in the hospital, or they feared that the information would be too general. Other researchers reported a similarly wide range of information needs of partners of cancer patients [7,29,30]. The different preferences regarding information needs should be considered in a Web-based intervention for partners.…”

Section: Discussionmentioning

confidence: 97%

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

Köhle¹,

Drossaert²,

Oosterik³

et al. 2015

JMIR Cancer

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BackgroundEvidence-based, easily accessible, supportive interventions for partners of cancer patients are limited, despite the fact that they often suffer from diminished emotional, social, physical, and relational functioning. To develop a new intervention that will fit their demands, it is important to consult potential users.ObjectiveTo examine partners’ interest in a Web-based psychological intervention and to identify their needs and wishes regarding such an intervention.MethodsSemistructured interviews were conducted with 16 partners of cancer patients, who varied in terms of age, gender, education, employment, type, and stage of disease. Partners were asked (1) whether they would use a psychological Web-based intervention and which preconditions (maximum time, structure, participate alone or with their partner) it should meet; (2) which functionalities (information, peer support, online psychological counseling) the intervention should contain; and (3) which topics (eg, taking care of oneself) should be addressed. Data were coded by 2 coders independently.ResultsThe need for a Web-based intervention varied. Arguments for being interested in a Web-based intervention included the need for acknowledgement; the need for someone they could talk to; and the need for information, tips, and support. Based on their experiences as a partner of a cancer patient, participants would prefer an intervention that is not too time-consuming (about 1-2 hours a week) and which is based on a “step-by-step” approach, meaning that the content of the intervention should match the stage of their partner’s disease. Also, they would prefer a positive approach, which means that the intervention should be a source of hope and energy. Most participants stated that they would prefer to participate without their ill spouse, because they do not want to burden their partners with their own problems. An intervention should contain information and optional peer support. Participants’ opinions about online psychological counseling in the intervention were divided. Arguments for online psychological counseling were that a professional could check on them and they were able to ask questions. Arguments against online counseling were that partners were not in need for guidance or they had enough support from usual care. Topics with the highest priority were “coping with feelings and emotions,” “should I or shouldn’t I spare my partner?,” “communicating with each other,” “asking for help and refusing help,” and “moving on with life after cancer treatment.” Furthermore, participants suggested additional topics of “dare to enjoy” and “acceptance of the patient’s disease.”ConclusionsA Web-based intervention can be a valuable addition to existing support initiatives for partners of cancer patients. This study provides important information about the content and form of such an intervention. Flexibility and a positive approach seem to be the most important features.

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Section: Discussionmentioning

confidence: 97%

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

Köhle¹,

Drossaert²,

Oosterik³

et al. 2015

JMIR Cancer

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“…Under the NHI provisions and available free access to healthcare for low-income families in Taiwan, treatment refusals remain observable among numerous lung cancer patients. Presumably, health care access is impeded by other factors for low-income families, and other factors may affect treatment decisions, example for close family members support or cancer knowledge [25], [26].…”

Section: Discussionmentioning

confidence: 99%

Factors Associated with Lung Cancer Patients Refusing Treatment and Their Survival: A National Cohort Study under a Universal Health Insurance in Taiwan

et al. 2014

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BackgroundLung cancer is the leading cause mortality among all cancers in Taiwan. Although Taiwan offers National Health Insurance (NHI), occasionally, patients refuse treatment. This study examined the patient characteristics and factors associated with lung cancer patients refusing cancer treatment in four months after cancer diagnosed and compared the survival differences between treated and non-treated patients.MethodsThe study included 38584 newly diagnosed lung cancer patients between 2004 and 2008, collected from the Taiwan Cancer Registry, which was linked with NHI research database and Cause of Death data set. Logistic regression was conducted to analyze factors associated with treatment refusal. The Cox proportional hazards model was used to examine the effects of treatment and non-treatment on patient survival and the factors affecting non-treatment patient survival.ResultsAmong the newly diagnosed cancer patients, older adults, or those who had been diagnosed with other catastrophic illnesses, an increased pre-cancer Charlson Comorbidity Index (CCI) score, and advanced stage cancer exhibited an increased likelihood of refusing treatment. Compared with treated patients, non-treated patients showed an increased mortality risk of 2.09 folds. The 1-year survival rate of treated patients (53.32%) was greater than that of non-treated patients (21.44%). Among the non-treated patients, those who were older, resided in lowly urbanized areas, had other catastrophic illnesses, a CCI score of ≥4, advanced cancer, or had received a diagnosis from a private hospital exhibited an increased mortality risk.ConclusionsDespite Taiwan's NHI system, some lung cancer patients choose not to receive cancer treatment and the mortality rate for non-treated patients is significantly higher than that of patients who undergo treatment. Therefore, to increase the survival rate of cancer patients, treatment refusal should be addressed.

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“…A cancer diagnosis has a strong emotional impact on the family. Reactions of fear, anxiety, sadness, and existential concerns are common and can be greater for family members than for the patient [13, 14]. Family members may perceive they are at greater risk of developing cancer due to real or perceived shared genetic or environmental risk factors and have heightened awareness about cancer and its prevention [15, 16].…”

Section: Introductionmentioning

confidence: 99%

An investigation of the colorectal cancer experience and receptivity to family-based cancer prevention programs

Breitkopf

Asiedu

Egginton

et al. 2014

Support Care Cancer

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Purpose Cancer is a shared family experience and may provide a “teachable moment” to motivate at-risk family members to adopt cancer prevention and health promotion behaviors. This study explored how a diagnosis of colorectal cancer (CRC) is experienced by family members and may be used to develop a family-based CRC prevention program. Preferences regarding content, timing, and modes of program delivery were examined. Social cognitive theory provided the conceptual framework for the study. Methods This study employed mixed methodology (semi-structured interviews and self-report questionnaires). Participants included 73 adults (21 patients, 52 family members) from 23 families (two patients were deceased prior to being interviewed). Most patients (n=14; 67 %) were interviewed 1–5 years post-diagnosis. Individual interviews were audio-recorded, transcribed, and content analyzed. Results For many, a CRC diagnosis was described as a shared family experience. Family members supported each other’s efforts to prevent CRC through screening, exercising, and maintaining a healthy diet. Teachable moments for introducing a family-based program included the time of the patient’s initial cancer surgery and post-chemotherapy. Reported willingness to participate in a family-based program was associated with risk perception, self-efficacy, outcome expectancies, and the social/community context in which the program would be embedded. Program preferences included cancer screening, diet/nutrition, weight management, stress reduction, and exercise. Challenges included geographic dispersion, variation in education levels, generational differences, and scheduling. Conclusions CRC patients and family members are receptive to family-based programs. Feasibility concerns, which may be mitigated but not eliminated with technological advances, must be addressed for successful family-based programs.

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Partners and close family members of long‐term cancer survivors: health status, psychosocial well‐being and unmet supportive care needs

Cited by 61 publications

References 36 publications

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

Factors Associated with Lung Cancer Patients Refusing Treatment and Their Survival: A National Cohort Study under a Universal Health Insurance in Taiwan

An investigation of the colorectal cancer experience and receptivity to family-based cancer prevention programs

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