Nadine Köhle

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

Background Evidence-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. Objective To examine partners’ interest in a Web-based psychological intervention and to identify their needs and wishes regarding such an intervention. Methods Semistructured 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. Results The 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.” Conclusions A 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.

User-experiences with a web-based self-help intervention for partners of cancer patients based on acceptance and commitment therapy and self-compassion: a qualitative study

BackgroundPartners of cancer patients are the cornerstone of supportive cancer care. They assume different roles and responsibilities that optimally support the patient. Such support is highly demanding, and many partners report (mental) health problems. However, many of them do not use professional supportive care themselves. Offering a Web-based self-help intervention based on Acceptance and Commitment Therapy (ACT) and self-compassion could be an important resource to support this group. This qualitative study aimed to examine user-experiences with a Web-based self-help intervention based on ACT and self-compassion among partners of cancer patients.MethodsIndividual in-depth interviews, about partners’ appreciation of the intervention and lessons learned, were conducted with 14 partners of cancer patients who used the Web-based self-help intervention. Interviews were audio-recorded, transcribed verbatim and analyzed by three independent coders both deductively and inductively.ResultsIn general, partners appreciated the intervention, however, they also expressed ambivalent feelings towards peer support, the content of the feedback of their counselor, and the ‘tunneled’ structure of the intervention. The majority of the partners reported being more self-compassionate accepting that they experienced negative thoughts and feelings, they reported that they learned to increase the distance between their thoughts and themselves, they indicated being more aware of their personal values, and they thought that they were better able to commit to those values. They also reported other (non-specific) helpful processes such as insight and acknowledgement, positivity, the possibility to tell their story, time for themselves, and feeling closer and more connected with their partner (the patient).ConclusionsPartners of cancer patients indicated to appreciate the Web-based self-help intervention based on ACT and self-compassion. They felt that the intervention helped them to cope with negative emotions, thoughts, and one’s suffering; to practice self-kindness; and to clarify values based on difficult recent experiences. In addition, they felt that the intervention supported them to obtain insight and acknowledgement, positivity, to tell their story, make time for themselves, and feeling closer and more connected with the patient. We think that a Web-based psychological intervention based on ACT and self-compassion may be a valuable contribution in supporting partners of cancer patients.

Intent to use a web-based psychological intervention for partners of cancer patients : Associated factors and preferences

ABSTRACT This study examined partners of cancer patients intention to use a web-based psychological intervention, their preferences regarding its preconditions, functionalities and topics, and factors related to their intention. One hundred and sixty-eight partners completed a questionnaire about these aspects. Forty-eight percent of the partners would (maybe) make use of a web-based intervention. Partners who intended to participate were significantly younger, used the Internet more often, and perceived more caregiver strain. Most partners preferred an intervention that takes less than 1 hour/week, lasts five weeks or more, and contains information and peer support. Half of the partners would like to receive online guidance.

Hold on, for each other: supporting partners of cancer patients via eHealth and positive psychology

Partners of cancer patients are an essential pillar in the cancer trajectory. The patient’s cancer can have an enormous impact on the partner’s life and (mental) health. To support them, psychological interventions are needed. However, partners of cancer patients are often extremely busy and supporting them can be challenging. Web-based intervention offer a possible solution to aiding partners since such interventions circumvent caregivers’ time restraints and daily, unpredictable demands. To fulfil partners’ needs and meet their challenges, the main aim of this research project was to develop and evaluate a psychological Web-based self-help intervention for partners of cancer patients that would be based on acceptance and commitment therapy (ACT) and self-compassion. In this thesis, we describe the participatory development of the Web-based intervention Hold on, for each other and its evaluation with the use of mixed-methods. Based on the studies in this thesis it can be concluded that a Web-based self-help intervention is a good alternative for partners of cancer patients, that processes of ACT and self-compassion are useful and applicable to this target group, and that co-creation is essential to develop an acceptable and user-friendly Web-based intervention. This thesis has contributed to the growing awareness of the challenging situation partners of cancer patients are confronted with. Although we focused on partners of cancer patients, we think that the obtained insights are also of great value and potentially helpful for other groups, such as all caregivers of cancer patients and also partners and caregivers of patients suffering from other chronic diseases.

User-centered Design: Development of a Web-based Self-help Intervention for Partners of Cancer Patients

 Background/purpose: Many people living with cancer experience depression. Research suggests that the therapeutic effect of exercise on depression is similar to pharmacotherapy or psychological intervention, yet cancer survivors are under-exercising compared to recommended doses. Self-efficacy may be a factor to explain exercise engagement. This cross-sectional study investigated whether exercise task self-efficacy (ETSE) was associated with exercise engagement, further examining differences between cancer survivors with and without elevated depressive symptoms. Methods: Ninety-seven cancer survivors (60.8 ±9.9 years) were mailed self-report questionnaires on ETSE, exercise engagement, and depressive symptoms. A Hospital Anxiety and Depression Scale D cutoff score (≥8) was used to assign participants to a symptomatic (n = 34) or non-symptomatic group (n = 63). An independent t-test was used to examine differences in ETSE between groups. Correlational analyses were used to examine relationships between exercise task self-efficacy and exercise engagement. Results: There was a significant difference in the degree of exercise task self-efficacy between cancer survivors with (M=35.74, SD= 31.47) and without (M=57.30, SD= 26.71) depressive symptoms, t(95) =_3.56, p<0.01, with a large effect size (d =0.74). A positive association was found between ETSE and exercise engagement, r(95)= 0.49, p<0.01, which was similar for both groups. Conclusions: Exercise task self-efficacy appears to influence exercise engagement independently of mood status, but people with higher levels of depression symptoms tend to have lower self-efficacy. Therefore, future research should examine interventions to enhance exercise task self-efficacy, thereby potentially increasing exercise engagement in cancer survivors. Research Implications: These findings demonstrated that cancer survivors with depressive symptoms have low ETSE and that ETSE can predict exercise engagement. This suggests a role for enhancing ETSE to influence exercise engagement in cancer survivors. Future research could investigate causality between ETSE and exercise engagement and interventions to enhance ETSE. The findings of the present study could assist with more definitive research which could aid clinicians interested in behavioral change with regard to exercise engagement and improvement of depressive symptomatology in cancer survivors. Practice Implications: The findings illustrate that exercise self-efficacy predicts exercise engagement, independently of mood. Therefore, clinicians working with depressed or non-depressed cancer survivors should initially target increasing exercise self-efficacy as opposed to reinforcing the positive health benefits of increased physical activity.

An online psychological intervention for partners of cancer patients: interest, influencing factors and preferences

Nadine Köhle 1, Constance Drossaert2, Cornelia van Uden-Kraan3, Irma Verdonck -de Leeuw4, Ernst Bohlmeijer5 1University of Twente, Enschede, Overijssel, The Netherlands, 2University of Twente, Enschede, Overijssel, The Netherlands, 3VU University, Amsterdam, Noord-Holland, The Netherlands, 4VU University, Amsterdam, Noord-Holland, The Netherlands, 5University of Twente, Enschede, Overijssel, The NetherlandsFrom Vision to Action - Innovation and Implementation of an Integrated Cancer Rehabilitation Within Clinical Practice