Parents' experiences of paediatric palliative care in the community healthcare system: a qualitative study.

Background: Having a child with a life-limiting illness is a situation that is relatively rare and represents a multidimensional burden on the family. Paediatric palliative care (PPC) aims to maintain the quality of life for the ill child and the family. Traditionally, most PPC has been provided at a specialist healthcare level, but research indicates that most families wish to spend as much time at home as possible. However, we have limited knowledge of PPC in community healthcare, especially from the parent's perspective. This knowledge is important to provide optimal home-based PPC. Objectives: To explore parents' experiences of PPC within the community healthcare system. Design: Qualitative study with an interpretive descriptive design. Methods: In all, 11 parents of children with different life-limiting illnesses were interviewed after the child's death using a semi-structured interview guideline. Data were analysed using systematic text condensation. Consolidated criteria for reporting qualitative research (QOREQ) was followed. Results: The parents' experiences were captured in five main themes: (i) 'Interaction with hospital and community services', (ii) 'Parents did not always get the help they needed', (iii) 'The child's needs became increasingly complex', (iv) 'When the end came' and (v) 'The parents asked for an ordinary life in an unordinary situation'. Each main theme was further elaborated by two subthemes. Conclusion: Overall, the parents experienced PPC in the community as limited and fragile, and as lacking flexibility, coordination and professional competence related to the children's complex needs. There appears to be potential for improvement in PPC through improved care coordination between the hospital and the community healthcare services, involving the community healthcare system at an early timepoint in the illness trajectory, including a family focus, and providing accessibility, flexibility and care coordination of community services. Registration and reporting guidelines: The study is registered in the institutional system for research project (RETTE; ID number F2082).

The 'Young Adult Taking Action' programme for young adult cancer survivors: A study protocol for a feasibility study.

BACKGROUND: Young adult cancer survivors (YACS) aged 18-39 report age-specific multifactorial challenges with self-care, leisure, work and education requiring multicomponent rehabilitation intervention. Therefore, the 'Young Adult Taking Action' (YATAC) programme was developed. AIMS/OBJECTIVES: To present a protocol for a feasibility study evaluating the acceptability of the YATAC programme and exploring implementation, mechanisms of impact and outcomes. MATERIAL AND METHODS: A mixed-method feasibility study with a convergent research design will be conducted. The programme is an age-specific, multicomponent, goal-oriented, and peer-based rehabilitation programme delivered by an interdisciplinary staff consisting of nine components: 1) Goal setting, 2) Everyday life, 3) Physical activity, 4) Psychological issues, 5) Work and study, 6) Sexuality and relationship, 7) Rights and finance, 8) Peer-to-peer support and 9) Individual consultation. Quantitative and qualitative data about acceptability, implementation, mechanisms of impact and outcomes will be collected. RESULTS: The results will provide essential knowledge about the programme's acceptability, implementation, mechanisms of impact and outcomes. CONCLUSION AND SIGNIFICANCE: The study will inform adjustment of the programme and will provide knowledge of whether and how to deliver age-specific rehabilitation to YACS.

Sexual Health and Quality of Life in Cancer Survivors With Pelvic Radiation Injuries.

BACKGROUND: Little knowledge exists on how late radiation tissue injuries (LRTIs) affect sexual health and health-related quality of life (HRQOL) in pelvic cancer survivors. OBJECTIVE: To explore sexual health and HRQOL in cancer survivors with pelvic LRTI. METHOD: A descriptive cross-sectional study was conducted, including 83 pelvic cancer survivors with LRTI. Data on sexual health, LTRIs, and HRQOL were collected by validated questionnaires, whereas medical variables were collected from medical records. RESULTS: Participants' sexual health was severely impaired. Bowel and urinary LRTIs correlated with most of the symptoms of impaired sexual health (Pearson r = -0.241 to -0.376, P < .05-.01). Men and women reported different sexual challenges related to functional and symptomatic variables but not on the gender-neutral aspects of sexual health. Younger survivors, gynecological cancer survivors, or those who received external and internal radiation or additional chemotherapy reported significantly (P < .05-.001) higher levels of sexual impairment. Participants' HRQOL was impaired. Several dimensions of sexual health correlated significantly (P < .05-.001) with the functional dimensions of reduced HRQOL. CONCLUSION: Cancer survivors with pelvic LRTIs experience severely impaired sexual health across genders, with negative consequences for their HRQOL. IMPLICATIONS FOR PRACTICE: Healthcare professionals should include sexual health as an important part of individual patients' health and HRQOL throughout their treatment trajectory and follow-up, by screening sexual health, implementing measures and interventions to promote sexual health, and supporting survivors' coping and health-promoting strategies.

Integrated Short-term Palliative Rehabilitation to improve quality of life and equitable care access in incurable cancer (INSPIRE): a multinational European research project.

Background: Disability related to incurable cancer affects over a million Europeans each year and people with cancer rank loss of function among the most common unmet supportive care needs. Objectives: To test the clinical and cost-effectiveness of an integrated short-term palliative rehabilitation intervention, to optimise function and quality of life in people affected by incurable cancer. Design: This is a multinational, parallel group, randomised, controlled, assessor blind, superiority trial. Methods: The INSPIRE consortium brings together leaders in palliative care, oncology and rehabilitation from partner organisations across Europe, with complementary expertise in health service research, trials of complex interventions, mixed-method evaluations, statistics and economics. Partnership with leading European civil society organisations ensures citizen engagement and dissemination at the highest level. We will conduct a multinational randomised controlled trial across five European countries, recruiting participants to assess the effectiveness of palliative rehabilitation for people with incurable cancer on the primary outcome - quality of life - and secondary outcomes including disability, symptom burden and goal attainment. To support trial conduct and enhance analysis of trial data, we will also conduct: comparative analysis of current integration of rehabilitation across oncology and palliative care services; mixed-method evaluations of equity and inclusivity, processes and implementation for the intervention, at patient, health service and health system levels. Finally, we will conduct an evidence synthesis, incorporating INSPIRE findings, and a Delphi consensus to develop an international framework for palliative rehabilitation practice and policy, incorporating indicators, core interventions, outcomes and integration methods. Scientific contribution: If positive, the trial could produce a scalable and equitable intervention to improve function and quality of life in people with incurable cancer and reduce the burden of care for their families. It could also upskill the practitioners involved and motivate future research questions. The intervention could be adapted and integrated into different health systems using existing staff and services, with little or no additional cost.

Rehabilitation interventions for young adult cancer survivors: A scoping review.

OBJECTIVE: To map existing research concerning rehabilitation interventions for young adult cancer survivors (YACS) that address at least one factor from the biopsychosocial health model. DESIGN: Scoping review. DATA SOURCES: Searches were performed in EMBASE, MEDLINE, PsycINFO, CINAHL and Cochrane in January 2022 and updated in March 2023, and grey literature between February and April 2022. METHODS: The review followed Joanna Briggs Institute's methodology for scoping reviews. Quantitative, qualitative and mixed methods studies evaluating interventions for YACS of any cancer who had completed primary treatment and were between 18 and 39 years old at diagnosis were included. Two authors independently screened studies for eligibility, and standardised forms were used for data extraction. Descriptive statistics, narrative summaries and thematic analysis were used to analyse the data. RESULTS: The search revealed 5706 records, of which 70 were full-text screened. The 20 included studies represented a heterogeneous group of 444 young adults with different cancer types, mean age above 25, and an overrepresentation of females. Most studies were feasibility and pilot studies. The 20 studies consisted of 14 unique interventions focusing primarily on one dimension of the biopsychosocial health model like biological or psychological factors. In the 14 interventions, the most frequent intervention element was peer-to-peer support (n = 12). The interventions were often delivered online (n = 9), lasting 3-12 months (n = 8). A wide variety of theories, providers and outcome measures were used. CONCLUSION: The results show that current research on multicomponent, biopsychosocial and age-specific rehabilitation for YACS remains at an early stage.

Users' perspective on rehabilitation interventions for young adult cancer survivors: A group concept mapping study.

OBJECTIVE: We aim to identify and prioritise rehabilitation interventions to strengthen participation in everyday life for young adult cancer survivors (YACS) between 18 and 39 years, involving the perspectives of YACS and relevant stakeholders. METHODS: A group concept mapping study was conducted in Denmark from 2019 to 2020. Online, participants generated and sorted ideas followed by rating their importance. Multidimensional scaling followed by hierarchical cluster analyses were applied to generate a cluster rating map of the prioritised interventions, which participants validated at a face-to-face meeting. Finally, a concluding conceptual model of prioritised rehabilitation intervention for YACS was developed. RESULTS: The study involved 25 YACS, three family members and 31 professionals working with YACS. The conceptual model included 149 ideas classified into eight intervention components created by the participants: (1) Treatment and possibilities within the social and healthcare system, (2) Rights and Finance, (3) Education and Work, (4) Psychological problems, (5) Body and Everyday Life, (6) Peer-to-peer, (7) Sexuality and Relationships and (8) Family and Friends. All components were rated equally important, whereby 17 ideas across the eight components were rated very important. CONCLUSION: This study indicates that rehabilitation of YACS should be composed of eight equally important intervention components requiring an interdisciplinary approach.

Community-Based Multidimensional Cancer Rehabilitation in Norway: A Feasibility Study.

BACKGROUND: Cancer survival is often accompanied by late effects that can be mitigated by tailored rehabilitation. In Norway, this has traditionally been offered as residential programs, whereas community-based cancer rehabilitation programs are lacking. OBJECTIVE: This study aimed to assess the feasibility and acceptability of a newly developed community-based multidimensional cancer rehabilitation program in Norway. METHODS: A feasibility study with a mixed methods explanatory sequential design was implemented. The intervention was a 12-week group-based rehabilitation program comprising 5 components: goal setting, physical exercise, psychoeducation, individual follow-up consultations, and peer support. Feasibility was assessed through recruitment, retention, and intervention delivery. Acceptability was assessed through intervention adherence and participant evaluation. Qualitative data were generated from focus group interviews. Statistical analyses were descriptive, and qualitative data were transcribed and analyzed using framework analyses. RESULTS: Sixty participants started, and 55 completed the 12-week rehabilitation program. The majority were female (80%), and the mean age was 56 years. The largest diagnostic group was breast cancer (42%). Retention was high (92%), as were adherence rates for all intervention components. The exercise component was rated the most beneficial, followed by individual consultations and peer support. Qualitative findings contributed to explaining the high adherence and positive evaluation. CONCLUSION: High retention, strong adherence, and positive evaluation imply that the community-based program was feasible and acceptable to cancer survivors. IMPLICATION FOR PRACTICE: The results will aid intervention refinement and contribute to a future randomized controlled trial to examine its effectiveness. If successful, the rehabilitation program could be implemented in the Norwegian Cancer Pathway "Home."

Symptom burden and health-related quality of life six months after hyperbaric oxygen therapy in cancer survivors with pelvic radiation injuries.

PURPOSE: Late radiation tissue injuries (LRTIs) after treatment for pelvic cancer may impair health related quality of life (HRQoL). Hyperbaric oxygen therapy is an adjuvant therapy for LRTIs, but limited studied. The aim of this study was to explore the development and association between symptoms of LRTI and HRQoL following hyperbaric oxygen treatment. METHODS: A pretest-posttest design was used to evaluate the changes in pelvic LRTIs and HRQoL from baseline (T1), immediately after treatment (T2) and at six-month follow-up (T3). EPIC and EORTC-QLQ-C30 were used to assess LRTIs and HRQoL. Changes were analysed with t-tests, and associations with Pearson's correlation and multiple regression analyses. RESULTS: Ninety-five participants (mean age 65 years, 52.6% men) were included. Scores for urinary and bowel symptoms, overall HRQoL, all function scales and the symptoms scales sleep, diarrhoea, pain and fatigue were significantly improved six months after treatment (P-range = 0.00-0.04). Changes were present already at T2 and maintained or further improved to T3. Only a weak significant correlation between changes in symptoms and overall HRQoL was found (Pearson r-range 0.20-0.27). CONCLUSION: The results indicate improvement of pelvic LRTIs and HRQoL following hyperbaric oxygen therapy, corresponding to minimal or moderate important changes. Cancer survivors with pelvic LRTIs and impaired HRQoL may benefit from undergoing hyperbaric oxygen therapy. Especially the reduced symptom-severity and improved social- and role function can influence daily living positively. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03570229. Released 2. May 2018.

"There Should Have Been a More Holistic Approach"-A Qualitative Study of Young Adult Cancer Survivors' Experiences of Follow-up After Cancer Treatment.

BACKGROUND: Young adult cancer survivors (YACSs) are in a vulnerable period of life with increased risk of severe physical and psychosocial late effects. However, limited research exists on follow-up of YACSs after cancer treatment. OBJECTIVE: The aim of this study was to explore how YACSs experience follow-up from the healthcare system after finishing cancer treatment. METHODS: Using a qualitative method with an interpretive descriptive design, 20 YACSs were interviewed 4 times over a period of 6 months. The transcribed interviews were analyzed using Systematic Text Condensation. RESULTS: Four main themes were identified: "They should have prepared me better," "The GP (general practitioner) does not understand my challenges," "My check-ups are all about cancer relapse," and "I do not know who's in charge." CONCLUSION: The findings indicate deficiency in the healthcare system's follow-up of YACSs in terms of preparation for the survival phase, interdisciplinary cooperation, and acknowledgement of late effects, as well as organization of follow-up care within the healthcare system. IMPLICATIONS FOR PRACTICE: A more holistic perspective on follow-up care that addresses YACSs' multidimensional challenges is suggested, including a multidisciplinary approach where cancer nurses should play an active role.

The Fuelbox "Young Next of Kin"-A Mixed-Methods Study on the Development and Piloting of a Communication Tool for Adolescents Coping With Parental Cancer or Death.

BACKGROUND: Adolescents' ability to cope with parental cancer and death is largely dependent on information and open communication, but parents and professionals often feel uncertain in such circumstances. OBJECTIVES: To develop and pilot a communication tool to enhance communication with adolescents living with or having lost a parent with cancer. METHODS: A Fuelbox was developed in a 4-phased process including adolescents and professionals and piloted by 51 participants (adolescents, parents, and professionals) over 4 months. Using a mixed-methods study with a convergent design, data were collected via a questionnaire and interviews and were then merged. RESULTS: The final "Young Next of Kin" Fuelbox consisted of 8 topics and 176 questions. Participants used the Fuelbox in different contexts, utilizing a variety of approaches. The participants found that it covered significant topics and questions important to adolescents' situation. The Fuelbox was considered a very useful and beneficial tool to promote communication with adolescents, given that users maintain awareness of voluntary participation, confidentiality, preparedness, time, and safe frames. CONCLUSION: The Fuelbox "Young Next of Kin" seems to be a flexible and accessible communication tool in private and professional settings to enhance communication with adolescents living with or having lost a parent with cancer. As the Fuelbox is diagnosis-neutral in nature, it may be transferable to other populations and settings. IMPLICATIONS FOR CLINICAL PRACTICE: The Fuelbox is a flexible, accessible, and useful tool for communication between adolescents and parents, and adolescents and healthcare professionals in specialist and primary healthcare settings.

A Qualitative Study of Cancer Survivors' Experienced Outcomes of a Multidimensional Rehabilitation Program in Primary Healthcare.

BACKGROUND: Cancer survival rates are increasing, but survival is often followed by several late effects. Cancer survivors' need for complex rehabilitation is well documented, but this is mostly missing in primary healthcare. OBJECTIVE: The aim of this study was to explore cancer survivors' experienced outcomes of a multidimensional rehabilitation program in primary healthcare. METHODS: The study used a qualitative method with a descriptive research design. Fifty-six cancer survivors completed a 12-week rehabilitation program built upon the 5 elements of goal setting, physical exercise, psychoeducation, individual follow-up, and peer support. Data were collected at the end of the program via 8 focus group interviews, and systematic text condensation was used to analyze the data. RESULTS: "Increased coping and participation" was identified as the overarching theme of the participants' experienced outcomes from the program, and this was elaborated by 3 main themes: (1) "increased energy and capacity," (2) "acceptance and understanding," and (3) "structure and hope." CONCLUSION: The multidimensional rehabilitation program seemed to address cancer survivors' multiple challenges in survivorship. Proximity and accessibility to a local rehabilitation program and professionals' competence seemed to be essential factors for the participants' experienced outcomes of the program. IMPLICATION FOR PRACTICE: A multidimensional rehabilitation program integrated in a Healthy Life Centre in primary healthcare may be beneficial for cancer survivors' coping and participation in everyday life. Cancer nurses play a crucial role in initiating and facilitating such programs.

Symptom burden, psychological distress, and health-related quality of life in cancer survivors with pelvic late radiation tissue injuries.

PURPOSE: Curative radiotherapy for cancer may lead to severe late radiation tissue injuries (LRTIs). However, limited knowledge exists about pelvic cancer survivors' LRTI symptoms, distress, and health-related quality of life (HRQOL). We sought to assess the symptom burden, distress, and HRQOL in survivors with established pelvic LRTIs compared to norm populations and to investigate the relation between these factors. METHODS: Cancer survivors referred for treatment of established pelvic LRTIs were recruited nationwide. LTRIs were assessed with the Expanded Prostate Cancer Index Composite (EPIC), psychological distress was assessed with the General Health Questionnaire (GHQ-12), and HRQOL was assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORCT-QLQ-C30). RESULTS: A total of 107 participants (mean age 64, 53% men) were included. Compared to norms, participants reported more urinary (mean 68.7 vs. 89.5; p = 0.00; d = 1.4) and bowel symptoms (mean 62.5 vs. 92.4; p = 0.00; d = 2.7), increased psychological distress (mean 13.4 vs. 10.3; p = 0.00; d = 0.6), and overall poorer HRQOL (mean 54.9 vs. 71.2; p = 0.00; d = 0.7). Higher symptom burden and higher levels of psychological distress were associated with lower HRQOL (r2 = 46%), but psychological distress did not moderate the influence of symptoms on HRQOL. CONCLUSION: Cancer survivors with established pelvic LRTIs are highly burdened compared to norms. The association of the LRTI-related symptom burden with HRQOL is independent of the level of psychological distress. Both coping and treatment interventions are crucial to promoting long-term health and HRQOL. TRIAL REGISTRATION: NCT03570229.

"It's been a life-changing experience!" A qualitative study of young adult cancer survivors' experiences of the coexistence of negative and positive outcomes after cancer treatment.

The aim of this study was to illuminate the coexistence of negative and positive experiences of young adult cancer survivors after cancer treatment. Using an interpretive descriptive design, 20 young adult cancer survivors were interviewed. The participants stated that the cancer was a life-changing experience followed by both negative and positive outcomes. The range of negative outcomes was identified in the main theme "the cancer still hampers me," subdivided into three subthemes "impaired function and changed body," "intrusion of thoughts and feelings" and "negative impact on relationships." Simultaneously, the informants experienced positive outcomes identified in the main theme "I have acknowledged what's important in life," where "a changed perspective," "personal growth" and "the significance of close relationships" were important facets. The findings indicate that young adult cancer survivors need close and sustained follow up with screening and tailored interventions to minimize negative physical, emotional and social outcomes. In addition, actions that promote positive outcomes such as increasing social support, prioritizing close relationships and facilitating positive changes in values and life goals should be fostered during the entire cancer trajectory.

Characteristics of the social networks of families living with parental cancer and support provided.

OBJECTIVE: To examine the characteristics of the social networks of families living with parental cancer and the kind of social support they provide compared with what the families report having received. BACKGROUND: Parental cancers are highly distressing for both parents and children. Among other concerns, families report a severe lack of social support. However, we know little about these families' private social networks, nor support provided and received as reported by network members and the family. METHODS: Using a descriptive cross-sectional design, 16 families living with parental cancer and 130 of their network members participated. Healthy parents and network members filled out The Assistance Questionnaire-Receivers of support (AQR)/The Assistance Questionnaire-Providers of Support (AQP). RESULTS: Network members were mainly resourceful friends (44%) and family members (42%). Only 1/3 became supporters at diagnosis, and nearly 50% had to be asked. Supporters provided a variety of types of help, especially emotional support. A match between the perception of the healthy parent and that of the network members was found for provided (p = 0.211) and received (p = 0.741) support. Supporters were satisfied with their provided support, experiencing it as rewarding and associated with few negative aspects. The STROBE checklist for observational studies was followed in reporting the results. CONCLUSIONS: The social networks, being mainly family and friends, were able to provide different types of help, especially emotional support. A useful suggestion may be to involve supporters at an earlier stage, providing more practical support. RELEVANCE FOR CLINICAL PRACTICE: Nurses are in a unique position to promote social support for families living with parental cancer by embracing a network focus, by emphasising the importance and potential of social support, by helping families to map their network and by teaching them how to be explicit in their requests for support.

Young adult cancer patients' experiences of private social network support during cancer treatment.

AIMS AND OBJECTIVES: To explore young adult cancer patients' experiences of support from their private social network during cancer treatment. BACKGROUND: Cancer treatment in young adulthood (aged 18-35 years) can be distressing. Social support is crucial for health and well-being, especially for young people and in times of crisis. Research indicates that young cancer patients experience a lack of social network support, but little is known about the types of private social network support available during cancer treatment. DESIGN: Qualitative study with interpretive descriptive design. METHODS: Twenty young adult cancer patients with different cancer diagnoses were interviewed retrospectively using a semi-structured interview guideline. Data were analysed using systematic text condensation. The COREQ checklist for qualitative research was followed. RESULTS: "From independence to dependence" was identified as a bridging theme, which was elaborated by four sub-themes: (1) "My partner was my rock-or not"; (2) "My family stood by me-or not"; (3) "My friends supported me-or not"; and (4) "I lacked young adult cancer peers-or not." CONCLUSION: The patients' major sources of private social network support were their partners and close family members. Only a few friends supported them during cancer treatment, and most lacked peer support. The type of social network support they received varied, and not all support was perceived as helpful. Helpful network support was experienced as being unconditional and given with empathy and without prompting. Patients without sufficient support from a partner or family members seem to be especially vulnerable. RELEVANCE TO CLINICAL PRACTICE: Nurses play a crucial role in educating young adult cancer patients about the importance of social support and helping them to map their social network and being explicit when requesting support. Nurses should inform patients' networks about both helpful and unhelpful support and should facilitate interaction between patients.

"A limited focus on cancer rehabilitation"-A qualitative study of the experiences from Norwegian Cancer Coordinators in Primary Health Care.

OBJECTIVE: The facilitation of complex cancer rehabilitation interventions in primary health care has become of growing importance to meet the bio-psycho-social needs of cancer survivors. However, the delivery of cancer rehabilitation is debated and services are underutilised. Cancer coordinators (CCs) provide patients with coordinated services throughout the trajectory. Little is known about CCs' rehabilitation-focused tasks. This study's objective was to explore Norwegian CCs' experiences with cancer rehabilitation interventions in primary health care. METHODS: Data were obtained via two focus group interviews with 12 participants, analysed using thematic analysis and discussed using Salutogenesis, a theory for health promotion. RESULTS: The analysis revealed three themes: (a) "A missing link" to cancer rehabilitation in primary health care, (b) Aiming to put cancer rehabilitation "in the spotlight," (c) The need to build a system for rehabilitation service delivery. CONCLUSION: CCs experience a lacking focus on and missing systems for cancer rehabilitation in primary health care. CCs aim to improve local practices by advocating patients' needs and educating professionals. CCs must be supported via education and training in system-level work, an increased policy focus and resources for cancer rehabilitation. More research is required into how CCs may facilitate cancer rehabilitation in primary health care.

"I Got My Diagnosis on a Yellow Post-it Note": Young Adult Cancer Patients' Experiences of the Process of Being Diagnosed With Cancer.

BACKGROUND: Cancer in young adults is rare but young adult cancer patients (YACPs) are at an increased risk of severe physical and psychosocial impairments during cancer treatment and survivorship. However, little is known about the onset of this process. OBJECTIVE: The aim of this study was to explore how young cancer survivors experience the process of being diagnosed with cancer. METHODS: A qualitative method founded on a phenomenological-hermeneutical approach was used and included in-depth interviews with 20 young adult survivors (aged 24-35 years) with different cancer diagnoses, analyzed by Systematic Text Condensation. RESULTS: The participants' experiences of the diagnosis process were elaborated according to 3 main themes: (1) "I felt something was wrong, but…," (2) "The traumatic uncertainty," and (3) "The day my world collapsed." CONCLUSION: The findings indicate that the YACPs experienced a diagnosis of cancer as a highly traumatic and long-lasting process, characterized by lack of information and uncertainty. The findings indicate that healthcare professionals do not acknowledge the vulnerable phase of life and transitional challenges of YACPs. IMPLICATIONS FOR CLINICAL PRACTICE: The findings highlight the need to raise awareness of cancer in young adulthood in the public and in the primary healthcare system, to shorten the diagnosis process, and to clarify responsibility for age-related information and psychosocial follow-up during the diagnosis process. Further research is highly warranted.

From Challenges to Resources: A Qualitative Study of Cancer Coordinators' Experiences of Barriers and Facilitators to Enacting Their System-Focused Tasks.

BACKGROUND: Cancer coordinators (CCs) operate at both patient and system levels in order to provide patients with tailored and coordinated services. In common with international CCs, Norwegian CCs denote notable progress in their patient-focused work, while reporting ongoing challenges in carrying out system-focused tasks. However, little is known about the barriers and facilitators for CCs' system-level work. OBJECTIVE: The aim of this study was to explore Norwegian CCs' experiences of barriers and facilitators for enacting system-focused tasks. METHODS: The study applies a qualitative method, conducting an interpretative data inquiry of semistructured in-depth interviews with 26 Norwegian CCs. The data were analyzed using thematic analysis and discussed in light of previous research and salutogenic theory. RESULTS: The analyses revealed 3 main themes: (1) "understanding the role and local cancer care," (2) "systems for care delivery in primary healthcare," and (3) "commitment to collaboration." Where present, the themes could represent important facilitators, whereas their absence could depict notable challenges to CCs system-focused work. Over time, as CCs were able to mobilize resources, they were able to gradually turn initial challenges into facilitators in the context of system-level work. CONCLUSIONS: Cancer coordinators encounter cognitive, practical, and relational topics that impact their system-focused activities. Adopting a salutogenic focus can help CCs mobilize resources needed to turn challenges into facilitators for system-level work. IMPLICATIONS FOR PRACTICE: Cancer care coordination cannot be undertaken by CCs alone. Cancer coordinators' embedding in multidisciplinary teams, common systems for care provision, meaningful work relations, and professionals' commitment to cancer care represent important facilitators for CCs' system-focused tasks.

Improving social network support for partners facing spousal cancer while caring for minors: Four-month outcomes of a single-centre randomised controlled trial.

Social support is an important predictor of the well-being of partners of cancer patients. Those who are caring for minors (well parents) may be in special need of such support. The aim of this study was to evaluate the 4-month impact of a psychoeducational social support intervention, named the Cancer-PEPSONE programme (CPP), on well parents' received and perceived social support, as well as on their psychological distress, quality of life (QOL) and parental capacity. The study was an open randomised controlled trial with a parallel-group design (N = 35; Intervention = 17, Controls = 18). The participants in the intervention group received CPP in their homes. Controls received support as usual. Data were collected in Norway using validated self-report questionnaires. Questionnaires were sent by post, before randomisation (T1), and at three- (T2) and six-month (T3) follow-up. Linear mixed models analyses revealed intervention effects on received (p = 0.04, d = 0.6) and perceived (p = 0.01, d = 1.0) social support, as well as on parental capacity (p = 0.02, d = 1.0), but not on psychological distress and QOL. Social support mediated the relationship between receiving CPP and later psychological distress. CPP may help well parents in maintaining social support and enhancing parental capacity. An improvement in social support may alleviate well parents' psychological distress.

Coping with changes and uncertainty: A qualitative study of young adult cancer patients' challenges and coping strategies during treatment.

Young adult cancer patients (YACPs), aged 18-35 years when diagnosed with cancer, are in a vulnerable transitioning period from adolescence to adulthood, where cancer adds a tremendous burden. However, YACPs' challenges and coping strategies are under-researched. The objective of this study was to explore what challenges YACP experience during their treatment, and what coping strategies they applied to them. We conducted a qualitative study with a phenomenological-hermeneutic design, including retrospective, semi-structured interviews of 16 YACPs who had undergone cancer treatment. Data were analysed using thematic analysis and interpreted applying the Cognitive Activation Theory of Stress (CATS). We found "coping with changes and uncertainty" as overarching topic for YACPs' challenges, particularly related to five themes, including (1) receiving the diagnosis, (2) encountering the healthcare system, (3) living with cancer, (4) dealing with the impact of the treatment and (5) reactions from the social network. YACPs' coping strategies applied to these challenges varied broadly and ranged from maladaptive strategies, such as neglecting the situation, to conducive emotional or instrumental approaches to manage their challenges. The findings call for age-specific needs assessments, information and support for YACPs, and their families in order to facilitate YACPs' coping during their treatment.