May Aasebø Hauken

Meeting reality: young adult cancer survivors' experiences of reentering everyday life after cancer treatment.

Background: Cancer in young adults is rare, but the intensity of cancer treatment increases the risk of physical and psychosocial impacts on patients’ entire lives. Young adult survivors are underrepresented in research, and knowledge of cancer survivors in this age group is scarce, especially knowledge of transition from cancer treatment to everyday life. Objective: The objective of this study was to explore how young adult cancer survivors experience reentering everyday life after cancer treatment. Methods: A qualitative, phenomenological approach was used and included 20 young adult survivors (aged 24–35 years) with different cancer diagnoses allocated to a rehabilitation program. Semistructured interviews were conducted, and the transcripts were analyzed qualitatively using Systematic Text Condensation method. Results: “Meeting reality” was identified as a bridging theme, explained by 4 main themes important to the informants: (1) lack of preparation, (2) late effects, (3) lack of understanding, and (4) being neither sick nor healthy. Conclusions: Informants were unprepared for reentering everyday life after cancer treatment and experienced a mismatch of their expectations with reality, particularly in the holistic impact of late effects. Moreover, reentering everyday life was characterized by a lack of understanding from their network and even healthcare providers who conducted follow-ups. The informants experienced reentering everyday life as being much harder than expected, and they felt isolated as well as neither sick nor healthy. Implications for Practice: The results suggest a major shortcoming in both preparation for survivorship, multidisciplinary follow-ups, and knowledge. A shift to a more holistic perspective in survivorship care is suggested.

Working Toward a Good Life as a Cancer Survivor. A Longitudinal Study on Positive Health Outcomes of a Rehabilitation Program for Young Adult Cancer Survivors

Background: Research on cancer rehabilitation targeting young adult cancer survivors (YACS) is limited, and little is known about the positive health outcomes of rehabilitation programs tailored specifically for this vulnerable group. Objective: The aim of this study was to investigate whether a complex rehabilitation program improved the health-related quality of life (HRQOL) and physical capacities of YACS. Methods: A longitudinal prospective study using Norwegian norm-based comparisons was conducted. Twenty YACS (24–35 years old) with different cancer diagnoses participated in a complex rehabilitation program lasting for 6 months, focusing on goal setting, exercise, psychoeducation, individual follow-up, and peer support. Results: Health-related quality of life was measured by EORTC QOL C-30 and the scores showed significant increases in overall HRQOL (P < .005–.001) and all functional dimensions (P < .001–.05) and a decrease in fatigue (P < .000–.05) and effect sizes between 0.72 and 1.30. Significant changes occurred within physical fitness (P < .005), lung capacity (P < .05), and left-hand strength (P < .001), but not right-hand strength and body mass index, with effect sizes between −0.04 and 0.48. The values of HRQOL were stable after a 1-year follow-up. Conclusions: A complex cancer rehabilitation program especially tailored for YACS seems to build positive health outcomes such as HRQOL and physical capacity in a long-term perspective. The content and structure of the program were feasible with high compliance. The results underline the importance of targeting rehabilitation interventions to YACS in need after cancer treatment, acknowledging rehabilitation as a process that requires adequate time and follow-up. Implications for practice: Healthcare providers should be aware of YACS’ symptom burden and monitor HRQOL and physical parameters to ascertain holistic cancer survivorship care.

Participating in life again: a mixed-method study on a goal-orientated rehabilitation program for young adult cancer survivors.

Background: Young adult cancer survivors (18–35 years old) are at risk of lifelong threats to physical and psychosocial health and decreased life participation. Research indicates lack of information about the late effects and health risks and limited follow-up and rehabilitation. Objective: The objectives of this study were to examine whether a goal-oriented rehabilitation program increased young adult cancer survivors’ participation and explore the participants’ descriptions and experience of the process. Methods: We used a convergent parallel design combining quantitative and qualitative methods. Sixteen young adult cancer survivors (aged 24–35 years), with different cancer diagnoses, were allocated to a 6-month rehabilitation program. Results: The Canadian Occupational Performance Measure showed significant (P < .001) change in both performance and satisfaction from the start (T1) to the end (T4) of the program. Qualitative results indicated that increased participation was depended on building capacity and finding the balance, gaining new insight, and follow-up. Important factors of the rehabilitation program seemed to be physical activity, psychoeducation, peer-to-peer support, and follow-up over time. Conclusions: Results indicate that a goal-oriented rehabilitation program may increase participation by young adult cancer survivors. The goal-oriented process is not straightforward and depends on experience of coping and control, finding a balance between the different areas of life and follow-up over time. Implications for Practice: Health professionals should play an important role in the rehabilitation of young adult cancer survivors by promoting empowerment and follow-up over time. The Canadian Occupational Performance Measure seems to be a valuable instrument for setting goals and thus helps facilitate participation.

Optimizing Social Network Support to Families Living With Parental Cancer: Research Protocol for the Cancer-PEPSONE Study

Background Parental cancer can have a significant impact on a familys psychosocial functioning and quality of life, whereby the children’s situation is strongly related to parental coping and capacity. Such parents ask for more help in order to increase their care capacity, while the network is often insecure about how to help and thereby withdraw. They ask for guidance and training to be able to support cancer families. Based on this, the Cancer- Psycho-Educational Program for the SOcial NEtwork (PEPSONE) study was developed. Objective To optimize social network support through a psycho-educational program for families living with parental cancer and their network members in order to increase parental capacity and thereby secure the children’s safety and quality of life. Methods A randomized controlled trial (RCT) in which families (N=60) living with parental cancer will be randomized to either an intervention group or a control group. The intervention will last for 3 hours and includes (1) introduction, (2) psycho-education (living with cancer in the family and the importance of social network support), and (3) discussion (this family’s need for social support). Primary outcomes are social support, mental health, and quality of life, and secondary outcomes are resilience and parental capacity. Data will be collected by a set of questionnaires distributed to healthy parents (N=60) living with a partner with cancer, one child in the family between 8-18 years of age (N=60), and network members (N=210) of the intervention families at inclusion, and after 3 and 6 months. Comparing differences between the intervention group (n=30) and the control group (n=30), the power analysis shows that P<.05 and a statistical power = .80 would detect effect sizes of clinical interest. Results This paper presents the Cancer-PEPSON study’s protocol to provide a broader understanding of the background and content of the program. The study is ongoing until August 2016 and the first results are anticipated to be finished by November 2015. Conclusions To our knowledge, this will be the first RCT study to optimize social network support through a psycho-educational program for families living with parental cancer and their network members, as well as provide an evidence basis for social network support. The results may provide important knowledge that is useful for clinical practice and further research. The trial is reported according to the CONSORT checklist. ClinicalTrial International Standard Randomized Controlled Trial Number (ISRCTN): 15982171; http://www.controlled-trials.com/ISRCTN15982171/15982171 (Archived by WebCite at http://www.webcitation.org/6cg9zunS0)

Anxiety and the Quality of Life of Children Living With Parental Cancer

Background: Previous research on children living with parental cancer has mainly focused on the psychosocial challenges, but few studies have explored their health-related quality of life (HRQOL). This is important to promote well-being and discover areas of distress, as well as positive aspects of the children’s life. Objective: The aim of this study was to study how children’s HRQOL is influenced by anxiety and whether age and gender act as moderators for this relationship. Methods: This study used a survey with a cross-sectional design, including 35 children between 8 and 18 years old (mean, 13.3 years old) living with parental cancer. Questionnaires of HRQOL (Kinder Lebensqualität) and anxiety (Revised Child Manifest Anxiety Scale) were used. Results: The children reported higher anxiety and lower HRQOL than the controls. The children’s physiological (P = .03), emotional (P = .04), and school (P = .00) functions were significantly impaired, whereas they scored in line with the controls on self-esteem, family, friends, and overall HRQOL. A negative correlation (r = −0.707, P < .01) between anxiety and HRQOL was found. Neither age nor gender acted as a moderator between anxiety and HRQOL. Conclusions: A one-dimensional focus on anxiety may not capture these children’s multidimensional challenges. In contrast, a focus on HRQOL may give important knowledge of the children’s challenges, as well as areas where they function well. Implications for Practice: Healthcare professionals need to work collaboratively across disciplines and have a multidimensional focus in caring for patients with cancer who have children. They must provide both the parents and children with adequate information and tools to handle their family health situation to promote the children’s HRQOL.

Facing Spousal Cancer During Child-rearing Years: Do Social Support and Hardiness Moderate the Impact of Psychological Distress on Quality of Life?

Background: Partners of cancer patients report psychological distress and reduced quality of life. However, partners’ mental health status and quality of life during child-rearing years and the influence of social support and hardiness on their well-being have not yet been studied. Objective: The aim of this study was to describe psychological distress, quality of life, social support, and hardiness of the partners facing spousal cancer during child-rearing years and investigate whether social support or hardiness moderated the relationship between psychological distress and quality of life. Methods: Cross-sectional data were collected in Norway from December 2013 to July 2015 as part of the Cancer-PEPSONE study. Results: Five questionnaires were administered to 14 females and 21 males (n = 35). Participants reported more psychological distress and lower quality-of-life scores than other healthy Norwegian populations. Psychological distress seemed to be associated with their not being in control of their futures. Received social support moderated the effect of psychological distress on quality of life. Conclusions: Facing spousal cancer during child-rearing years seemed to have a substantial impact on partners’ mental health and an adverse impact on their quality of life. Accordingly, these partners’ self-care abilities may be reduced. Received social support may reduce the multiple burdens and consequently allow for enhancement of self-care. Implications for Practice: Interventions should aim to improve the social support provided to child-rearing partners, which may improve their quality of life. Providing adequate information about their partner’s cancer illness and treatment may enhance their feelings of control, which may be beneficial for their mental health status.

“Back on Track”: A Longitudinal Mixed Methods Study on the Rehabilitation of Young Adult Cancer Survivors

To address the multidimensional challenges faced by young adult cancer survivors, 20 young adult cancer survivors participated in a rehabilitation program. Mixed methods, including a longitudinal convergent parallel design, were employed to evaluate both process and outcome issues. Data were collected simultaneously via questionnaires, physical testing, and interviews at four separate time points. The results portrayed rehabilitation as a process involving the gradual improvement in quality of life, participation, and physical capacity, whereby finding a balance between the different aspects of life, novel insights, and multidimensional follow-ups were important factors. This study contributes to mixed methods literature as an example of how a longitudinal mixed methods approach may yield an enriched understanding of both the rehabilitation process and outcomes in cancer rehabilitation.

Providing Coordinated Cancer Care—a Qualitative Study of Norwegian Cancer Coordinators’ Experiences of Their Role

Background: There is a growing need for strategies to improve coordinated, tailored services in cancer care to meet the comprehensive needs of cancer patients. In Norway, cancer coordinators (CCs) have been established to improve coordination and patient-centeredness of services. Little is known about how CCs engage to provide patients with the needed services and support throughout the treatment. Objective: The aim of this study was to explore how Norwegian CCs experience their role and how they enact it in order to enhance coordinated cancer care. Methods: The study encompasses a qualitative, hermeneutic approach, conducting semistructured in-depth interviews of 26 Norwegian CCs. The data were analyzed using thematic analysis and discussed in the light of the salutogenic theory. Results: Cancer coordinators take a holistic approach to patient care, including both patient- and system-level activities. “Providing coordinated cancer care” emerged as an overarching topic for their role. This topic was elaborated by 3 main themes: (1) finding their place and creating their function, (2) meeting the needs of cancer patients and helping them cope, (3) promoting well-functioning cancer care systems. Conclusions: Cancer coordinators evolved diversely, in adaption to the local context and patients’ needs. The functions’ diversity challenged the implementation and external role recognition. Cancer coordinators seemed to apply a salutogenic, resource-focused orientation in order to support a positive development at both the patient and the system levels. Implications for Practice: The findings reinforce the call for holistic, patient-centered services in cancer care. Cancer coordinators need appropriate support from the local management to establish the role and local collaborations.

Systematic early intervention for bereaved: study protocol of a pilot randomized controlled trial with families who suddenly lose a partner and a parent

Background Grief has been associated with several long-term negative outcomes for both surviving parents and bereaved children, especially when it is preceded by unnatural and violent deaths. Nevertheless, it has been an underestimated public health problem with few, if any, empirically documented early preventive intervention programs. The best time to start them is also a major question that requires further evidence. Objective The overall aim of this study is to assess the feasibility of a future larger trial, informing sample size calculation, recruitment/randomization procedures, retention rates, data collection forms, and outcomes. This study will also explore: (1) the early effects of Systematic Early Intervention for Bereaved (SEIB) compared with the early effects of care as usual, and (2) the effects of the immediate SEIB version compared with the effects of the delayed SEIB version. Methods In a pilot randomized controlled trial (RCT) with a delayed intervention design, suddenly bereaved families will be assigned to: the immediate-SEIB intervention group, or the delayed-SEIB intervention group. Participants will fill in a set of self-report measures at baseline, and after 3, 6, and 9 months follow-up. Quantitative data on traumatic stress symptoms, complicated grief, psychological wellbeing, daily functioning, social support, parental capacity, parenting practices, and family functioning will be collected to inform power calculations and explore SEIB’s preliminary effects. Data on the flow of participants throughout the trial will be analyzed in order to estimate recruitment and retention rates. Two brief questionnaires were developed to assess recruitment procedures, randomization, and data collection materials. Results Recruitment for this project started in August 2015, and follow-up data collection will be completed in June 2017. Conclusions This study prepares the ground work for the design and implementation of a main trial and may add preliminary knowledge to the significance of early supportive practices that have been commonly used regardless of their sparse evidence.