Effectiveness of a comprehensive support program for families with parental cancer (Family-SCOUT): results of a multicenter non-randomized controlled trial.

BACKGROUND: Cancer patients with minor children but also their families suffer from significant psychological distress and comorbidity. Protective factors predicting successful coping are well known. Corresponding systematic interventions are rare and limited by access barriers. We developed a comprehensive family-centered intervention for cancer patients with at least one dependent minor. PATIENTS AND METHODS: Family-SCOUT represents a multicentric, prospective, interventional, and controlled study for families with parental cancer and their minor children. In the intervention group (IG), all family members were addressed using a care and case management approach for nine months. Families in the control group (CG) received standard of care. Participating parents were asked to complete the Hospital-Anxiety-Depression-Scale (HADS) questionnaire at enrolment (T0) and after 9 months (T2). The primary outcome was a clinically relevant reduction of distress in at least one parent per family, measured as minimal important difference (MID) of ≥1.6 in the HADS total score. The percentage of families achieving MID is compared between the IG and CG by exact Fisher's test, followed by multivariate confounder analyses. RESULTS: T0-questionnaire of at least one parent was available for 424 of 472 participating families, T2-questionnaire after 9 months was available for 331 families (IG n = 175, CG n = 156). At baseline, both parents showed high levels of distress (HADS total: sick parents IG: 18.7 ± 8.1; CG: 16.0 ± 7.2; healthy partners: IG: 19.1 ± 7.9; CG: 15.2 ± 7.7). The intervention was associated with a significant reduction in parental distress in the IG (MID 70.4% in at least one parent) compared with the CG (MID 55.8%; P = 0.008). Adjustment for group differences from specific confounders retained significance (P = 0.047). Bias from other confounders cannot be excluded. CONCLUSIONS: Parental cancer leads to a high psychosocial burden in affected families. Significant distress reduction can be achieved through an optimized and structured care approach directed at the family level such as family-SCOUT.

Piloting a new cross-sector model of care to support parents with cancer: feasibility and acceptability of the Parent Support Worker role.

PURPOSE: A new Parent Support Worker (PSW) service was piloted in three Australian hospitals. This study assesses the feasibility and acceptability (including preliminary effectiveness) of the service in supporting cancer patients with children. METHODS: A multi-site, mixed-methods study collected quantitative and qualitative data on the effectiveness of the service (pre post-test, n = 36), qualitative and quantitative data on acceptability of the service (survey, n = 43), and qualitative data on acceptability (semi-structured interviews, n = 13). Feasibility was assessed through rates of service uptake amongst referred parents. RESULTS: Of 1133 parents referred, 810 (71%) accepted to receive the service, suggesting high interest in PSW support. Interviewees likewise reported that the service was accessible and facilitated further referrals, indicating good feasibility. Surveys completed three months after accessing PSW support showed high acceptability and satisfaction. Additionally, there was preliminary evidence of service impacts: parents' distress, parenting concerns, parenting efficacy, and stress about situations of concern improved significantly from pre- to post-service (all p < 0.005). Interviewees further described how their emotional coping and confidence to support and communicate with their children had improved through contact with the service. CONCLUSION: The PSW service, integrated into a novel cross-sector model of care, showed to be feasible and acceptable to parent patients and their partners and improved psychological and parenting outcomes. The study suggests refinements to the service and the need for future larger studies to explore the effectiveness of the service in improving parents' outcomes. This study complements previous evidence on the implementation of the PSW service in hospitals.

Family adjustment and resilience after a parental cancer diagnosis.

PURPOSE: To explore the resources, parents with cancer and their partners draw upon to sustain their family resilience through the cancer experience. METHODS: Fifteen participants who were parents of children aged 8 to 25 years completed phone, audio-recorded, and semi-structured interviews. Of these participants, 11 were parents diagnosed with cancer, and four were partners of a parent diagnosed with cancer. Interview questions aimed to increase understanding about how families communicate, connect, and face challenges from the cancer experience. Interview data was analysed using inductive thematic analysis to provide scope to generate themes from parent's experiences rather than to test pre-existing frameworks. RESULTS: The thematic analysis of interview transcripts generated three key themes related to family resilience: (1) adaptability to changes in roles and routines, (2) open communication within the family, and (3) accepting support from others. CONCLUSION: This study found that parents' ability to use personal resources when faced with significant challenges helped to improve the resilience of parents' family system. Further research is needed to understand the factors that influence family resilience when a parent is diagnosed with cancer. Implications for the development of targeted interventions that provide support to not only the patient, but their whole family system will be discussed.

Impact of Parental Cancer on Children: Differences by Child's Age and Parent's Disease Stage.

(1) Receiving an oncological diagnosis involves countless physical and mental challenges for those who become ill. In addition to this, developmental activities are put on hold when a parent becomes ill, significantly impairing children's normal growth and development. The purpose of this review is to highlight the psychological impact of cancer on children, with particular attention to differences based on the age of the child and the stage of the parent's disease. (2) Articles published on PubMed up until October 2023 were searched. Qualitative and quantitative studies were included in this review after an evaluation of the full text. The study selection process was undertaken by two researchers, and articles for which there was unanimous agreement between researchers were included in the review. (3) Children's psycho-emotional responses differ based on their age and the disease stage. In general, good communication and a supportive family environment that understands everyone's needs seem to constitute important protective factors that favor the adaptation of the entire family to the disease. (4) The family, as an evolutionary system, finds itself facing phases typical of development. Knowing the variables that intervene in the process of adaptation to the disease will allow us to design specific and differentiated clinical interventions based on the needs of not only the patient but also the entire family.

"A sincere 'how are you?' is already a sign of acknowledgement that you're there too." - Interview study on the support needs of adolescents and young adults (AYAs) living with a parent with cancer.

PURPOSE: Parental cancer brings changes and challenges which affect the whole family. Evidence shows heightened psychosocial risk among the offspring. Research among adolescents and young adults (AYAs) facing parental cancer has mainly focused on these psychosocial problems. As a reaction, there has been an increase in research on the needs of this population, since this knowledge is crucial for developing appropriate support. Despite this increase, some AYAs are still underrepresented, namely those over eighteen years old and those who have a parent with incurable cancer. Moreover, the factors hampering or fostering access to and receipt of support addressing their needs are under-investigated. Increasing our understanding of these issues is crucial to developing more effective support interventions for these young people. Our aim was therefore to gain insight into the perceived support needs of AYAs who have a parent with cancer, including the mentioned underrepresented subgroups, and the perceived factors facilitating or hindering their use of support. METHODS: We conducted semi-structured interviews with 17 AYAs who have a parent with cancer of any type and stage, which were analyzed using conventional Qualitative Content Analysis (QCA). RESULTS: Six main categories emerged from the data, encompassing various subcategories: 1) Needs surrounding the time of disclosure, 2) Information needs, 3) Informal support needs, 4) Need for effective personal coping strategies, 5) Formal support needs, and 6) Contextual and medical factors affecting support needs. AYAs perceived family members, friends and teachers as important sources of informal support, but lacked contact with peers who also have a parent with cancer. They expressed a need for formal informational and emotional support from their parent's medical team, (onco)psychologists, and their general practitioner. AYAs faced barriers in accessing formal support. A proactive attitude from healthcare providers and information about available support would help them meet their needs. Furthermore, we shed new light on needs and issues in post-secondary education. CONCLUSIONS: AYAs who are living with their parent with cancer experience informational, emotional, and practical needs in multiple contexts, such as the home, school, leisure and hospital environment. They identify their informal and formal network as important key figures in addressing these needs.

Exploring the perspectives of cancer patients parenting minor children: A qualitative study on family-centered cancer care experiences.

OBJECTIVES: Parents with cancer experience not only disease-related burden but also child- and family-related concerns. According to the German guidelines, all professionals working in oncology are responsible for addressing these burdens and needs and for involving the patient's relatives. This study aims to explore patients' perspectives on their experiences regarding family-centeredness in cancer care. METHODS: We conducted interviews with 18 cancer patients parenting at least one minor child (< 18). The interviews were audio-recorded, transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Most parents reported that their healthcare professionals (HCPs) rarely or not routinely discussed family issues. There was a wide range of ways in which HCPs communicated about family issues. Parents often felt unsure about professionals' responsibilities and many of them expressed a desire for more proactive communication. CONCLUSIONS: The findings suggest that the majority of patients have unmet needs related to comprehensive care as parents. PRACTICE IMPLICATIONS: HCPs need to be sensitized to identify parents facing additional burdens and needs. It is essential that HCPs clarify parents' preferences regarding the extent of involvement of family issues in cancer care.

A Conceptual Model Depicting How Children Are Affected by Parental Cancer: A Constructivist Grounded Theory Approach.

Cancer patients' children are vulnerable to psychosocial and behavioural issues. The mechanisms underlying how children are affected by their parent's diagnosis are unknown, warranting further research. This study investigated how children are affected by their parent's cancer diagnosis and provides a theoretical model conceptualising this experience. Informed by methods of grounded theory, embedded within a social constructivist framework, 38 informants (15 health professionals (HPs); 11 parents; 12 children (5 to 17 years)) were interviewed using a semi-structured format. Three themes were identified: (i) children were worried and distressed because they felt alone, (ii) parents were unable to tend to children's needs because they were overwhelmed by practical factors, and (iii) HPs were not detecting children due to barriers that affected their visibility in clinical settings. The proposed Alexander's Children's Cancer Communication (ACCC) Model and clinical recommendations made can be used to guide the clinical practice and development of future intervention research.

Exploring the Psychosocial Needs of Adolescents Whose Parent Is Diagnosed With Breast Cancer.

PURPOSE: Cancer has a major impact on the individual patient and their family, especially children. However, little is known about the needs of adolescents (10-19 years) whose parent is diagnosed with cancer, especially breast cancer. Insights into psychosocial needs are important to develop appropriate guidance and support for these adolescents. The aim of this study is to explore the psychosocial needs of adolescents whose parent is diagnosed with breast cancer to improve the support for these adolescents. DATA SOURCES: This is an exploratory, qualitative study. In-depth interviews were conducted, and an interview guide was designed with the following topics: experiences, needs, and support. Participants were selected purposively and approached via the parent(s) after consultation. Interviews were audiotaped, transcribed, and thematically analyzed by using the software program NVivo. CONCLUSION: Fourteen adolescents (12-19 years) were interviewed, which resulted in five themes: distraction, support, being able to talk about it, information, and continuing a normal life. Adolescents whose parent is diagnosed with breast cancer need the best possible preservation of their normal lives. It is important for them to be able to share their story and find support from someone close to them. IMPLICATION FOR NURSING PRACTICE: The route to the adolescent is always through the parent. Healthcare professionals can discuss the well-being of the adolescent during regular consultation with the parent. If there are concerns, healthcare professionals can advise the parent about the possible needs of the adolescent and could coach the parent in supporting the adolescent to discuss their needs.

Supporting Families with Breast Cancer: Insights from the Danish Nurse-Led Program "The Children's Tour" for Families with Parental Cancer.

PURPOSE: This study explores how a Danish nurse-led program designed to provide support to families where mothers are affected by breast cancer is experienced by the women attending the program and the nurses organizing it. Their experiences provide insights into the program's impact and potential areas of improvement and inform future interventions targeting the well-being of this specific population. DATA SOURCES: The study involved data collected through qualitative research. An observational study of the intervention was conducted to inform the development of an interview guide for semistructured individual interviews and a focus group interview. Five women with breast cancer and children aged 5 to 16 years were interviewed, and four nurses involved in the nurse-led program took part in the focus group interview. Data were audio recorded, transcribed verbatim, and thematically analyzed. CONCLUSION: Families participating in the nurse-led program reported it helpful in many ways. Three themes emerged from the analysis of the interviews: 1) "How to talk about parental cancer with school-aged children," 2) "Setting up the room," and 3) "Exchanging imagination for reality." Getting familiar with the treatment room and nurses, playing with hospital gear (syringes, bandages, and the treatment chair), and watching a movie together indicate that the visit to the ward is important and cannot be entirely replaced by digital solutions. With the need for support and limited resources at the hospital, it is pivotal to identify the families most in need. IMPLICATIONS FOR NURSING PRACTICE: Women with breast cancer parenting adolescent children need family-based care based at the hospital. Further research is needed to refine the program to cover the concerns of the whole family, including fathers and grandparents, and to apply the program to other families with parental cancer of other types.

Discussion Surrounding Theory, Knowledge, and Practical Applications for Clinical Nurse Specialists to Aid Them in Caring for Parents with Cancer Who Have Young Children.

PURPOSE: To identify the theory, knowledge, and practical applications that clinical nurse specialists should consider adding to their "toolkit" to support them in caring for people affected by cancer with young children. DATA SOURCES: Expert opinion and relevant studies on the topic formed the basis of this article. CONCLUSION: A conversation with experts identified five key areas of knowledge important to supporting clinical nurse specialists in caring for people affected by cancer with young children: family-centered and systemic practice, nursing responsibilities and competencies, trauma-informed practice, adult life stages, and stages of child development. Key areas identified have relevance to all healthcare professionals working in cancer care. IMPLICATIONS FOR NURSING PRACTICE: This article provides a useful overview of psychological theories important to supporting healthcare professionals in caring for people affected by cancer. A discussion on the boundaries and competencies of the nursing role led to agreement about practical advice rooted in theory and knowledge that could benefit clinical practice. Concepts of emotional labor and the wounded healer were identified as important to inform reflection and supervision when caring for a parent affected by cancer who has a young family.

Supportive and psychosocial peer-group interventions for children and adolescents of parents with cancer: A systematic review.

OBJECTIVE: Children and adolescents are highly affected by their parents` cancer disease. This review aims to summarize peer-group interventions for children and adolescents of cancer patients, where those affected have the opportunity to exchange and normalize their feelings among equals. METHODS: A systematic review searching four different databases (MEDLINE, PsycInfo, CINAHL and Web of Science) was conducted. We included studies investigating psychosocial peer-group interventions for offspring of cancer patients. A narrative synthesis summarised the characteristics of the interventions and the findings on effects and evaluation. RESULTS: Ten articles on seven different peer-group interventions were analysed. Research designs and intervention concepts were heterogeneous. Overall, high acceptance, feasibility and positive effects of peer-group support were reported. Significant effects were found in six studies, e.g. in relation to psychological well-being, quality of life and coping skills. CONCLUSION: Peer-group interventions are an accepted and helpful form of support. Providing children and adolescents of cancer patients for example with psychoeducation, community and coping strategies, thereby impacting on psychological well-being. PRACTICE IMPLICATIONS: For comprehensive care, it seems to be important to offer support throughout the parent's cancer journey and to offer support flexibly as needed through group services as well as individual sessions.

Cancer patients as parents: implementation of a cross sector service for families with adolescent and young adult children.

BACKGROUND: Cancer patients who are parents show concerns about their ability to parent following diagnosis, and their adolescent and young adult (AYA) children have a need for improved cancer communication within the family. However, psychosocial support for families affected by parental cancer is not routinely available. This study explores the implementation of the Parent Support Worker (PSW) role, as part of a new cross sector model of care to support parent patients, their partners, and AYA children. METHODS: Two PSWs, social workers and healthcare staff (n = 26) from three hospitals participated in audio-recorded, semi-structured interviews about implementation of the PSW role. Template Analysis and Normalization Process Theory were used to analyze the interviews. Data on PSW service activity and referrals of AYA to support from a community organization were analyzed using descriptive statistics. RESULTS: Eleven themes categorized into enablers and barriers of implementation were identified. Regarding acceptability of the role, three enablers (social workers' understanding of the PSW role increasing, easy and prompt access of staff and parent patients to PSWs, satisfaction with the PSW role) and one barrier (communication related confusion and frustration about the PSW role) were identified. Additionally, three enablers (the PSW role fills gaps in parenting-focused support and continuity of care, the PSW role alleviates social workers' workload, negotiation helped to define responsibilities) and one barrier (fear of social work roles to be overtaken by PSWs) for appropriateness of the role were found. Finally, two enablers of feasibility of the role (PSWs and social workers co-managing the work, higher confidence from hospital staff to talk about children in the family) and one barrier (lack of systematic identification and referral processes) were identified. Across hospitals, the number of referrals of AYA children to the community organization increased between 2.7 and 12 times nine months post-introduction of the service. CONCLUSIONS: Established in response to identified gaps in oncology care for parents with cancer, their partners and AYA children, a novel cross-sector model of care was acceptable, appropriate, and feasible. Barriers and enablers to implementation identified in this study need to be considered when designing and implementing similar services.

Young Adult German Breast Cancer Patients Participating in a Three-Week Inpatient Mother-Child Rehab Program Have High Needs for Supportive Care.

A known cut-off problem hampers the interpretation of quality of life (QOL) scores. The purpose of this study was to apply a novel approach for the EORTC QLQ-C30 instrument to identify the proportion of breast cancer (BC) patients in need of supportive care. Changes in QOL during the COVID-19 pandemic were evaluated, as well as changes over time (after treatment termination and up to 4 years later). Data were obtained from a cohort study on young adult BC patients with minor children participating in a mother-child rehab program. Cross-sectional QOL data were collected from 2015 to 2021 (baseline). Follow-up data were available for up to 4 years after diagnosis for a subgroup. The baseline cohort included 853 women (mean age 35 years). More than 50% had a need for supportive care. In the subgroup with follow-up, this proportion remained at a high level up to several years after diagnosis. During the COVID-19 pandemic, changes regarding the proportion with this need were not as high as expected-with the exception of changes on the QLQ-C30 scale 'role functioning' (+15%). Even several years after diagnosis, every second BC patient with minor children had a need for supportive care, which is much higher than previously found. Healthcare staff should be aware of this potential need and should address this issue.

The Psychosocial Effect of Parental Cancer: Qualitative Interviews with Patients' Dependent Children.

BACKGROUND: Children living with parental cancer are at an increased risk for various psychosocial, emotional, and behavioural problems. However, research regarding how children are affected by their parent's diagnosis is still developing and patients' children are typically invisible in clinical practice. This study aimed to investigate how children are affected by their parent's cancer diagnosis, from children's perspectives. METHODS: Informed by methods of grounded theory and embedded within a social constructivist framework, twelve children (ranging from 5 to 17 years) living with a parent with cancer were interviewed using a semi-structured format assisted by a novel approach derived from play- and art-based developmental literature. RESULTS: Findings indicate that patients' children are constantly worried and distressed, and there are barriers that can be overcome to mitigate this. Four overarching themes were identified: (I) Feeling worried and distressed; (II) Comprehending their parent's cancer diagnosis; (III) Being disconnected from their supports; and (IV) Needing someone to talk to. CONCLUSIONS: Children experience considerable levels of ongoing worry and distress when a parent is diagnosed with cancer and have difficulties comprehending and articulating this. They also feel a level of disconnection from their usual support systems (e.g., parents) and are limited regarding who they can seek out and talk to. Mitigating children's ongoing worries and distress by promoting the availability and accessibility of parents and other supports to children, and reducing communication barriers between children and adults, should be a primary focus of psycho-oncology research and practice.

Family resilience of families with parental cancer and minor children: a qualitative analysis.

Introduction: Estimated 50,000 minor children in Germany experience a newly diagnosed cancer in one of their parents every year. Family resilience has proven to be an important concept against life crises. However, little research exists regarding family resilience in the context of parental cancer with minor children. Based on the "Family Resilience Framework," the aim of the study is to investigate the processes of family resilience of affected families. In addition, we explore which combinations of promoting family resilience processes can be characterized. Methods: As part of the mixed-method quasi-experimental interventional study "F-SCOUT," a qualitative content analysis was used to analyze the documentation of the "Family-Scouts" (a fixed contact person who advises, accompanies, and supports the families). Documentation was performed by families' study inclusion (T0), after 3 months (T1) and 9 months (T2) concerning current family situation, organization of everyday life, emotional coping, open communication within the family, and planned tasks. Results: The N = 73 families had between one and six children. In 58 (79%) families, the mother had cancer. In the course of the analysis, a category system with 10 main categories and 36 subcategories emerged. Family resilience processes were described to different extents. Combinations of categories promoting family resilience were characterized by the use of social resources, flexibility, economic resources, and open communication. Discussion: The findings are consistent with existing assumptions about family resilience in terms of the importance of social resources, family cohesion, mutual support, flexibility, open communication, and psychological well-being. In contrast to the findings of previous research, spirituality, and collaborative problem-solving indicate less centrality here. In turn, the findings on economic resources and information-seeking provide a valuable addition to the family resilience literature in the context of parental cancer with minor children. Clinical trial registration: ClinicalTrials.gov, identifier NCT04186923.

"You really need a whole community": a qualitative study of mothers' need for and experiences with childcare support during cancer treatment and recovery.

PURPOSE: A cancer diagnosis poses unique challenges for moms with young children who must balance illness-management alongside existing paid (e.g., employment) and unpaid (e.g., domestic/caregiving) work. The goal of this study was to improve understanding of the support needs of mothers living with cancer and their experiences receiving psychosocial and childcare support from a community organization, the Nanny Angel Network (NAN). METHODS: Mothers who accessed NAN services during their cancer treatment and/or recovery (N = 20) participated in qualitative semi-structured interviews. Thematic analysis was used to inductively and deductively identify emerging patterns in the data and theoretical abduction was applied to further interpret participants' accounts using a feminist political economy framework. RESULTS: Participants expressed how balancing the demands of patienthood and parenthood was challenging and how cancer treatment created new needs for support with care work. Mothers explained that NAN offered indispensable family-centered support largely missing from the health care system, promoting improved physical, psychosocial, and relational health for them and their families. While accessible from a cost-perspective, participants identified different pathways, including awareness, cross-system collaboration, and stable funding, that limited timely access to NAN. CONCLUSION: Access to family-centered care, such as that offered through NAN, was vital to the health and healing of the study participants and their families. Improved collaboration with and investment in community organizations like NAN that have a strong infrastructure to support moms living with cancer offers a practical, feasible, and immediate solution to help address some of the distinct challenges this population faces.

Psychological group intervention to support parenting: Qualitative study about needs and preferences of mothers with breast cancer.

PURPOSE: Parental worries and parenting stress can increase when a mother receives a breast cancer diagnosis. This study presents the findings of needs and preferences of mothers with breast cancer to inform the development of a group intervention program for mothers with breast cancer and other alternatives of support. METHODS: Using qualitative data from eighteen Portuguese women with at least one minor child when they received a breast cancer diagnosis, and content analysis on three focus groups transcripts, we uncover the participants' parenting needs and their perceptions of the potential benefits and the formal aspects of a group intervention. RESULTS: Mothers revealed that they need support on several parenting-related issues (e.g., communicating with the children about the mother's diagnosis, dealing with children's responses and difficult questions). They provided information about the potential benefits of group intervention and preferences regarding intervention content, sessions' structure, frequency, location, and timing. Some participants also suggested other types of support, such as online information and individual psychological support. CONCLUSIONS: The development of an intervention informed by the patients' needs and preferences can contribute to increasing its feasibility and efficacy. The findings indicated the specific parenting needs of Portuguese mothers with breast cancer, and it offered health professionals some important clues on how to support other family members.

'I didn't know what was in front of me'-Bereaved parents' experience of adapting to life when a co-parent of dependent children has died with cancer.

OBJECTIVE: It is not clear how the bereaved parent navigates life with the children after a co-parent has died. The objective of this study is to explore bereaved parents' experience of managing life when a co-parent of dependent children has died with cancer. METHODS: Twenty-one in-depth interviews were conducted with bereaved parents when a co-parent died with cancer. Data were analysed thematically. RESULTS: Bereaved parents highlighted how their children was their key focus after the death of a co-parent with cancer, as they effortfully strived to be a 'perfect parent'. While some bereaved parents struggled to adapt to the role as a sole parent, others described the importance of maximising social networks to help with the practical aspects of parenting. However, most bereaved parents described intense feelings of loneliness as they navigated parenting alone. To help navigate this post-bereavement period, parents considered it important for their children to openly talk about the deceased parent. Also, meeting others who have experienced similar situations was helpful for the bereaved parent and children, providing hope for the future. Results are discussed under two themes: (1) adapting to life without the parent, and (2) a desire to keep the memory alive of the parent that died with cancer. CONCLUSIONS: Bereaved parents should be encouraged to practice self-care when a co-parent has died from cancer so they can appropriately meet the needs of their children. Bereaved parents should be reassured that showing emotion in front of the children is helpful and could facilitate better grief experiences for the whole family.

Wonders & Worries: A randomized clinical trial of a psychosocial intervention for children who have a parent with cancer.

OBJECTIVE: The aim of this study was to test the effectiveness of Wonders & Worries, a psychosocial intervention for children who have a parent with cancer. Primary goals were to improve family quality of life, functioning and communication skills as reported by parent and child, enhance children's emotional/behavioral adjustment and parenting efficacy, while decreasing parenting concerns and ill parents' depression and anxiety. METHODS: Sixty families were recruited from a community based non-profit agency. Parents diagnosed with Stage I-III cancer and their children ages 5-14 years were enrolled and randomized into intervention (n = 32) or wait-list control groups (n = 28). Families received 2 parent consults, six weekly 1-h individual child sessions, and 1 treatment center tour. The intervention was comprised of an age-appropriate understanding of cancer and expression of feelings, coping skills to ease feelings related to parent's cancer and enhanced ability to communicate about the disease. Controls received parent consult and access to W & W resources. Data were obtained from standardized measures at baseline; 6 and 10 weeks follow up. RESULTS: Intervention group significantly improved on parenting concerns, parenting self-efficacy, and family quality of life. Children in the intervention group had significantly lower emotional and behavioral problems and worries related to cancer compared to controls. The intervention failed to significantly affect ill parent's anxiety, depressed mood, family functioning and child's anxiety. CONCLUSIONS: The Wonders & Worries intervention promoted positive adaptation for ill parents and their children. This intervention is promising enough to warrant further refinement and testing with larger, more diverse samples.

Parental Cancer: Acceptance and Usability of an Information Booklet for Affected Parents.

Background: Parents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: (1) investigating the acceptability and usability of the information booklet, (2) determining parental information needs, and (3) collating suggestions for implementation. Finally, we adapted the booklet according to the findings. Methods: We interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis. Results: (1) Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. (2) Following dimensions were identified as information needs: (a) communication, (b) support offers, (c) children's disease understanding and needs, (d) organization of family life, (e) competence in parenting, and (f) sources of additional information material. (3) The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings. Conclusion: Indicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated.