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.

Effectiveness of a training program for healthcare professionals on parental cancer: Results of a randomized controlled pilot-study.

OBJECTIVE: Cancer patients parenting minor children face specific burden and supportive needs, which are often not adequately addressed by their healthcare professionals (HCPs), due to a lack of knowledge, self-efficacy and competencies. Therefore, we developed a 3-h intervention enhancing HCPs' competencies in caring for these patients. We pilot-evaluated the intervention's feasibility and efficacy, assuming intervention group participants reveal higher improvements over time compared to non-trained participants. METHODS: We conducted a 3-armed randomized controlled pilot-trial (RCT), comparing face-to-face training (F2F), e-Learning (EL), waitlist-control group with three measurements (baseline, post-training, 3-month follow-up). Primary outcome was the competency to approach child- and family-related themes; secondary outcomes were knowledge, self-efficacy in (specific) communication skills. Intervention effects were analyzed using linear mixed models. RESULTS: Participants (n = 152) were mostly female (89%) and psychologists (38%; physicians 26%; nurses 18%). F2F and EL participants reported high training satisfaction. Analyses did not reveal any significant differences on the primary outcome between groups, but indicate positive intervention effects over time regarding secondary outcomes including knowledge and self-efficacy in communication skills. CONCLUSIONS: This is the first pilot-study evaluating a training for HCPs in oncology on parental cancer using a 3-armed RCT. The 3-h training program is a feasible approach and findings indicate to increase HCPs' knowledge and self-efficacy in caring for cancer patients with minor children. Further research is needed to verify preliminary findings of this pilot study. The study was pre-registered within the German Clinical Trial Register (DRKS-00015794).

Child- and family-specific communication skills trainings for healthcare professionals caring for families with parental cancer: A systematic review.

INTRODUCTION: As part of high-quality cancer care, healthcare professionals (HCPs) play a significant role in identifying and addressing specific needs of cancer patients parenting minor children. However, HCPs experience various barriers to adequately support parents with cancer. This systematic review explores current CSTs incorporating child- and family- specific modules for HCPs in oncology. Moreover, outcome measures and effectiveness of trainings are systematically investigated. METHODS: The systematic review was registered within PROSPERO (registration code: CRD42020139783). Systematic searches were performed in four databases (PubMed, Cinahl, PsycInfo, Web of Science) in 12/2020, including an update in 12/2021 and 08/2022. Quantitative, primary studies fulfilling the pre-defined inclusion criteria were included. Due to the expected heterogeneity a meta-analysis was not conducted. Study selection and quality assessment were conducted by two independent researchers, data extraction by one. Study quality was assessed using an adapted version of the National Institutes of Health quality assessment tool for pre-post studies without control group. RESULTS: Nine studies were included in this review following an experimental pre-post design only. Two CSTs were specifically designed to improve communication with cancer patients parenting minor children, the remaining seven incorporated a brief family module only. Seven programs were face-to-face trainings, one an e-learning and one a webinar. Eight studies found at least one statistically significant improvement in communication after training. However, quality of most studies was fair. CONCLUSION: This is the first review exploring specific CSTs for HCPs caring for cancer patients parenting minor children. As only two CSTs focused on parental cancer, evidence on the effectiveness of such CSTs is limited. Existing CSTs should be evaluated properly and include details on content of family modules. Further studies including and evaluating specific CSTs focusing on parental cancer are needed in order to strengthen HCPs' competencies to meet specific needs of patients parenting minor children.

Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs.

BACKGROUND: Spinal muscular atrophy (SMA) is a rare degenerative neuromuscular disease, mostly occurring in infants and children, leading to muscle wasting and weakness, and premature death. Due to new developments of multiple disease-modifying treatments within the last years, the interest of research in patients affected by SMA increased steadily. However, the psychosocial situation of parents as informal caregivers is still rarely addressed. OBJECTIVES: This review aims to highlight quantitative and qualitative data about the psychosocial situation, caregiver burden, and needs of parents as informal caregivers for children and adolescents with SMA. METHODS: A systematic literature review was performed including quantitative and qualitative original studies focusing on different psychosocial aspects and outcomes for parents of children and adolescents < 21 years of age with SMA type I-IV (PROSPERO; registration number CRD42020219020). We searched the following databases in November 2020 with a research update in August 2021: MEDLINE, CINAHL, PsycINFO and Web of Science. RESULTS: In total, 24 articles from 23 studies were selected for inclusion (15 quantitative studies, 7 articles from 6 qualitative studies, 2 mixed methods studies). The synthesis of included studies shows multiple sources of psychosocial burden for parents of children and adolescents affected by SMA: Most studies found reduced levels of quality of life, moderate to high levels of caregiver burden and distress, as well as physical and mental health symptoms. Further, findings indicate several unmet family needs regarding information, care coordination, treatment decisions, financial support, and adequate supportive care services. CONCLUSION: Parents of children and adolescents with SMA face multiple sources of psychosocial stressors, caregiver burden and various unmet family needs. To unburden families, the needs of parents as caregivers should be included in integrated care paths for SMA to improve their psychosocial situation and thus their ability to care for their children and to treat or prevent physical and mental health problems due to overburdening. Future research should focus not only on quality of life and on caregiving-related burden but should also examine the clinical relevance of reported symptoms to support the implementation of adequate support services for families affected by SMA.

The impact of cancer on the mental health of patients parenting minor children: A systematic review of quantitative evidence.

OBJECTIVE: To provide an overview of quantitative data on the impact of cancer on the mental health of patients parenting minor children. We focused on mental health outcomes, their levels and prevalence, and applied measurement tools. METHODS: MEDLINE, CINAHL, PsycInfo and Web of Science were searched up to March 2021. We included quantitative studies, published in a peer-reviewed journal and reporting outcomes on the mental health (e.g., depression, anxiety) of cancer patients parenting minor children (≤ 21 years). Study quality was assessed based on the National Institute for Health assessment tool for observational studies. This study is registered on PROSPERO (CRD42019141954). RESULTS: A total of 54 articles based on 36 different studies were included in this systematic review. Studies differ markedly regarding study and sample characteristics (e.g., outcome measures, sample size, parental health status). Depression and anxiety levels range from normal to abnormal, according to applied measurement tools. 7%-83% of parents with cancer have depression scores indicating probable depression and 19%-88% have anxiety scores indicating anxiety disorder. CONCLUSIONS: This review reveals the dimension of mental burden affecting cancer patients parenting minor children. To identify, address and timely treat potentially arising mental health problems and support needs, affected parents should be closely monitored by healthcare professionals and referred to specialized support offers, if necessary. In the context of a comprehensive patient- and family-oriented care, it is highly relevant to integrate mental health (including parental) issues routinely into oncological care by proactively asking for the patient's psychosocial situation and the family status.

Estimates of Prevalence Rates of Cancer Patients With Children and Well-Being in Affected Children: A Systematic Review on Population-Based Findings.

This review assessed population-based estimate rates of cancer patients with minor and young adult children (≤ 25 years), children and young adults having a parent with cancer as well as the psychosocial situation and well-being of children and young adults affected by parental cancer. Eighteen publications on population-based studies were included. Studies varied in the age ranges of both cancer patients and children. The prevalence rates of cancer patients having children ranged from 14 to 24.7% depending on the sample structure (e.g., age, gender). Studies reported that between 1.6 and 8.4% of children resp. young adult children have a parent with a history of cancer. Seven publications reported on the psychosocial situation or well-being in children and young adults affected by parental cancer. Estimate rates of psychosocial problems, psychiatric diagnoses or distress ranged between 2.5 and 34% of children depending on the method of measurement and outcome. The differences in the sample structure between the studies impeded the comparison of prevalence rates. However, the findings help to determine the need for specific support services and health care planning. The results emphazise the importance to routinely include issues on the parental role of patients and questions on the well-being and coping of children into psychooncological care. If necessary, support should be provided to families living with a cancer diagnosis.

Families Affected by Parental Cancer: Quality of Life, Impact on Children and Psychosocial Care Needs.

Parental cancer poses major challenges for families with minor children. Due to diagnosis and treatment family life is disrupted. To prevent long-term consequences in all family members and to design needs-oriented family-centered interventions, further understanding of the family's situation including the impact on the children, quality of life levels and the parental psychosocial needs is necessary. This study aims at investigating the impact of parental cancer on the minor children, family-specific psychosocial needs and quality of life levels of parents and children. Cancer patients parenting at least 1 minor child (<18 years) were eligible for study participation. In total, n=86 cancer patients under treatment participated in the study. After excluding participants without a minor child, 78 patients remained for analyses. We assessed children's quality of life using the parent proxy version of the KIDSCREEN-10 and parental quality of life using the EORTC QLQ C30 quality of life questionnaire. Additionally, the questionnaire comprised open questions about positive and negative changes parents perceived in their children as well as questions on specific family- and child-related psychosocial needs. The majority of participants were mothers (91%), mainly diagnosed with breast cancer (59%). The participating parents provided data on 117 minor children. Parents mentioned positive changes in 38% of the children (e.g., being more attentive and helpful). Negative changes were reported in 37% of the children (e.g., being more anxious and clingy). Parents reported family-specific psychosocial supportive care needs for themselves as a parent (e.g., support regarding parenting concerns), support needs for the partner or the children. Moreover, parents expressed family-related information needs and needs regarding practical aspects (e.g., childcare, household help). Global quality of life was M = 55.7 (SD = 23.4) for parents and M = 57.5 (SD = 15.5) for children. Pearson's correlation coefficient between parental and children's quality of life was 0.377 (p < 0.001). To identify parents with cancer and children in need for additional support, health care providers should proactively inquire about the impact of the disease on the children. In terms of a comprehensive cancer care, the direct assessment of family impact and family-specific support needs in cancer patients with minor children allows for needs-based allocation to support offers.

Assessing competencies of healthcare professionals caring for parents with cancer: The development of an innovative assessment tool.

OBJECTIVE: This paper describes the development of an assessment tool capturing competencies of healthcare professionals (HCPs) in caring for cancer patients with minor children. METHODS: We combined the methods of clinical case vignettes and situational judgement tests (SJTs). Scenarios were created based on literature and interviews with patients, HCPs, and experts. We pretested the instrument by conducting cognitive interviews with n = 6 HCPs, who gave feedback on realism, clarity, and difficulty of the scenarios. RESULTS: The developed assessment tool measures the following competencies: HCPs' (1) application of knowledge, (2) behavioural responses to clinical scenarios, (3) attitudes regarding the relevance of integrating the parental role in cancer care, and (4) empathic behaviour towards affected parents. Results of the cognitive interviews indicate that the scenarios are perceived as realistic and clear. CONCLUSIONS: We provide an innovative approach by methodologically combining clinical case vignettes and SJTs. Next, the assessment tool will be applied in the context of a pilot evaluation of a newly developed training for HCPs that aims at enhancing their competencies in caring for cancer patients with minor children.

Process-evaluation and outcome-evaluation of a training programme for healthcare professionals in oncology to enhance their competencies in caring for patients with minor children: a study protocol for a randomised controlled pilot study.

INTRODUCTION: Patients with cancer having minor children experience particular burden and strains. Being patient and parent at the same time is associated with specific needs of support. Therefore, the communication of child-related and family-related issues plays an important role in patient care. This study aims at testing the feasibility of a training to improve the situation of patients with cancer having minor children and their families by enhancing the competencies of healthcare professionals (HCPs, eg, physicians, nurses, psychologists) in caring for patients with cancer having minor children. Moreover, the study aims at testing the study design and outcomes of the evaluation concept and preliminary effects of the training. METHODS AND ANALYSIS: We will conduct a randomised controlled pilot trial with three arms (face-to-face training versus web-based training versus waitlist control group) to investigate the study aims. Primary outcome will be the competency to approach child-related and family-related topics in patients with cancer measured using comprehensive case vignettes. Secondary outcomes will be communication and attitudes regarding child-related and family-related topics and self-efficacy in clinical communication skills. Outcomes will be assessed prior to the training and after the training as well as 3 months after the training. Data will be analysed using descriptive analyses, group comparisons and linear mixed models. ETHICS AND DISSEMINATION: The study was approved by the Local Psychological Ethics Committee of the Center for Psychosocial Medicine of the University Medical Center Hamburg-Eppendorf (LPEK-001). At the end of the study, a web-based training and a face-to-face training intervention to enhance the competencies of HCPs in caring for patients with cancer having minor children will have been systematically developed and the study design and evaluation concept will have been evaluated. The results of the study will be disseminated through peer-reviewed journals and conference presentations. TRIAL REGISTRATION NUMBER: DRKS00015794.