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.publishedVersio

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.publishedVersio

Improving social network support for partners facing spousal cancer while caring for minors. A randomized controlled trial

This is a study of the impact of a psycho-educational social support intervention on partners’ social support and well-being in the face of spousal cancer. The study is part of the larger Cancer-PEPSONE study conducted at the Center for Crisis Psychology (CCP) in Bergen, of which the overall aim is to secure children's safety and quality of life (QOL) when living with parental cancer. The present study’s focus is the partners who concomitantly are caring for minors (the “well parents”). The adverse effects of spousal cancer on partners’ health and well-being are heavily documented and may affect the well parents’ parental capacity. Social support has the potential to reduce the negative impacts of stress on health and well-being, and may be of special value for well parents who are heavily burdened while juggling multiple caregiver roles. Untapped support resources may exist in their informal social networks. However, well parents experience difficulties in initiating support and sustaining support over time, while members of these social networks are often unsure of their supportive roles and call for advice and open communication with the affected families so as to be empowered as supporters. Still, no existing interventions seem to target the enhancement of social networks’ support of families facing cancer, and research on this topic is scarce. Accordingly, the Cancer-PEPSONE programme (CPP), which is a psycho-educational intervention that covers these families and their social networks, was developed in Norway. CPP is a manual-based and home-based single-session intervention, provided by a psychologist. The main aim of the present study was to assess the impact of CPP on the social support received and perceived by well parents, as well as their psychological distress, QOL and parental self-efficacy. Furthermore, the study aimed to explore the well parents’ levels of psychological distress, QOL, social support and hardiness, and to explore the relationship between these variables. The study was an open, single-centre randomized controlled trial (RCT) with a longitudinal design, including an intervention group and a control group. The sample consisted of 35 well parents who were living with a partner suffering from cancer while caring for at least one minor child (&lt;18 years of age). The intervention group (N=17) received CPP together with their selected social network members, while the control group (N=18) received support as usual from their social networks. Data were collected at three time points: baseline (T1), three-month follow-up (T2, approximately one month after the CPP intervention), and six-month follow-up (T3, approximately four months after the CPP intervention). Data were obtained using validated questionnaires. Based on the study’s baseline data, Paper 1 explored the social support, psychological distress, QOL and hardiness of well parents (N=35). Fifty percent of well parents reported symptoms of psychological distress above the cut-off value for probable psychological illness, which may indicate the need for psychological treatment. Well parents’ psychological distress seemed to be associated with their not being in control of their futures. Well parents seemed to have QOL impairments as compared to the QOL of the healthy Norwegian adult population and non-parental caregivers in Norway. Supporting the stress-buffering hypothesis, multiple regression analyses found that the social support provided by social networks seemed to buffer the adverse effects of psychological distress on well parents’ QOL. QOL acted as a mediator between personal resilience qualities (hardiness) and psychological distress, meaning that hardiness influenced psychological distress through QOL. Paper 2 focused on the first two waves (T1 and T2), analysing the short-term effects of CPP, as assessed one month after the intervention. Findings from repeated measures multivariate analyses of covariance (MANCOVA) revealed that the intervention group experienced increased levels of received and perceived social support after one month. This finding was contrasted with a significant decrease in social support for controls. Results did not prove any short-term effects on well parents’ psychological distress and QOL. However, a multiple regression analysis suggested that CPP might have an indirect effect on well parents’ QOL through the improvement of social support. Paper 3 focused on all three waves (T1-T3), analysing the four-month effects of CPP using linear mixed models (LMM) analysis. After four months, CPP seemed effective in sustaining well parents’ received and perceived social support, as well as enhancing their parental self-efficacy. Results did not prove any intervention effects on well parents’ psychological distress or QOL. However, a multiple regression analysis suggested that CPP might have an indirect effect on well parents’ psychological distress through the improvement of social support. To summarize, the study found that the well parents are largely distressed and that their QOL is at risk, but that social support may buffer the negative consequences of their psychological distress on their QOL. Healthcare professionals ought to have a special focus on these well parents, particularly given that their psychological distress and QOL impairments may affect their capacity to care for their children. Furthermore, healthcare professionals need to acknowledge social support as an important factor for well parents’ well-being and help facilitate the optimization of this social support. CPP seems to help improve and sustain social support for the well parents as well as enhancing their parental self-efficacy. Hence, CPP seems to address a gap in the existing psychosocial interventions. These are encouraging results and may be beneficial for the well-being of both well parents’ and their children. Nonetheless, a follow-up CPP session may be required in the programme to optimize social support in the longer-term for the well parents. Furthermore, a larger focus on practical support may be required to better target well parents’ psychological distress and QOL. Considering the study’s small sample size, these results call for confirmation in future studies with larger sample sizes

Service user involvement in a secure setting before and after the implementation of recovery-oriented practice: A quasi-experimental study

Aim To measure change in service user involvement in secure mental health units, before and after the implementation of recovery-oriented practice. Design Quasi-experimental study pretest–posttest design with non-equivalent comparison groups. Methods Data were collected from May 2018 to December 2019 in four medium-/high-security units in Norway. Two intervention units that implemented recovery-oriented practice were compared with two comparison units that did not. Data were obtained using anonymous questionnaires at baseline and at 6-month follow-up. For intervention units, data were also obtained at a 12-month follow-up to measure sustainability of improvements over time. Twenty inpatients (‘patients’; intervention group: 10, comparison group: 10) and 141 members of frontline staff (‘service providers’; intervention group: 92, comparison group: 49) participated at baseline. Mann–Whitney U-tests and independent sample t-tests were applied at the group-level to analyse changes in mean scores in groups. Results Among patients in the intervention units, findings indicated no improvements after 6 months, but significant improvements after 12 months in terms of patients’ opportunities to participate in formulating their individual care plans, to influence decision-making about therapy and to receive information about complaint procedures. Opportunities to participate in discussions about medication and treatment regimens did not improve. After 6 months, service providers in the intervention units reported an increase in democratic patient involvement, patient collaboration and management support, but not in carer involvement and assisted patient involvement. The improvements in democratic patient involvement and management support were sustained over time. No changes were found in the comparison groups. Conclusion The patients and the service providers reported a higher degree of service user involvement after implementing recovery-oriented practice. Specific work is needed to ensure patients’ involvement in all domains. Impact The findings are encouraging with respect to the potential to increase empowerment in a restricted setting through the implementation of recovery-oriented practice

Service user involvement in a secure setting before and after the implementation of recovery-oriented practice: A quasi-experimental study

Aim To measure change in service user involvement in secure mental health units, before and after the implementation of recovery-oriented practice. Design Quasi-experimental study pretest–posttest design with non-equivalent comparison groups. Methods Data were collected from May 2018 to December 2019 in four medium-/high-security units in Norway. Two intervention units that implemented recovery-oriented practice were compared with two comparison units that did not. Data were obtained using anonymous questionnaires at baseline and at 6-month follow-up. For intervention units, data were also obtained at a 12-month follow-up to measure sustainability of improvements over time. Twenty inpatients (‘patients’; intervention group: 10, comparison group: 10) and 141 members of frontline staff (‘service providers’; intervention group: 92, comparison group: 49) participated at baseline. Mann–Whitney U-tests and independent sample t-tests were applied at the group-level to analyse changes in mean scores in groups. Results Among patients in the intervention units, findings indicated no improvements after 6 months, but significant improvements after 12 months in terms of patients’ opportunities to participate in formulating their individual care plans, to influence decision-making about therapy and to receive information about complaint procedures. Opportunities to participate in discussions about medication and treatment regimens did not improve. After 6 months, service providers in the intervention units reported an increase in democratic patient involvement, patient collaboration and management support, but not in carer involvement and assisted patient involvement. The improvements in democratic patient involvement and management support were sustained over time. No changes were found in the comparison groups. Conclusion The patients and the service providers reported a higher degree of service user involvement after implementing recovery-oriented practice. Specific work is needed to ensure patients’ involvement in all domains. Impact The findings are encouraging with respect to the potential to increase empowerment in a restricted setting through the implementation of recovery-oriented practice

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

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 family's 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

Violence rate dropped during a shift to individualized patient-oriented care in a high security forensic psychiatric ward

Background - Contextual variables such as staff characteristics, treatment programs, assessment routines and administrative structures are found to influence patient violence rates in psychiatric forensic wards. The possible effects of current developments in treatment philosophy emphasizing patientsˈ perspective and treatment involvement upon violence rate have not yet been examined. The aim of this paper is to analyse associations between such developments and the occurrence of violent incidents among patients in a high security forensic psychiatric ward. Methods - During a 17-year period with stable ward conditions, incidents of violence were systematically collected together with diagnostic, risk assessment and demographic patient characteristics. Changes in care- and organizational related variables such as nursing staff characteristics, treatment and management routines were collected. Multilevel modelling was applied to estimate the relationship between these variables and changes in violent incidents. Results - A substantial decline in the occurrence of violent incidents paralleled with changes in the ward during the middle phase of the study period. Most of the changes, such as implementation of new treatment and care routines and an increased proportion of female staff and higher education levels, were significantly related to a decrease in the occurrence of violent incidents in the ward. Conclusions - Findings in this study suggest that an increase in individualized, patient-oriented care strategies, delivered by well-educated nursing staff with an equally balanced gender distribution contribute to a low level of violence

Personal recovery and its challenges in forensic mental health: systematic review and thematic synthesis of the qualitative literature

Background There has been a call for a framework to guide recovery-oriented practices in forensic mental health services. Aims This study aims to examine personal recovery and its challenges in forensic mental health settings in relation to the established framework for personal recovery in mental illness: connectedness, hope, identity, meaning and empowerment (CHIME). Method This study is an updated and expanded systematic review and thematic synthesis of the qualitative literature. A systematic search of six electronic databases (Web of Science, Medline, PsycINFO, CINAHL, EMBASE and SocIndex) was carried out in January 2019, using the terms [Recover*] AND [Forensic OR Secure] AND [Patient* OR Offend* OR Service User*]. Only studies that included service user's own perceptions and were published from 2014 onward were included in the review. Data were examined with thematic synthesis and subsequently analysed in relation to the CHIME framework. Results Twenty-one studies were included in the review. Findings suggest that some adjustments to the original CHIME framework are needed for it to be more relevant to forensic populations, and that an additional recovery process regarding feeling safe and being secure (safety and security) could be added to CHIME, providing the CHIME-Secure framework (CHIME-S). Specific challenges and barriers for forensic recovery were identified and found to represent the opposite of the recovery processes defined by CHIME (e.g. hopelessness). Conclusions We present the CHIME-S as a framework for the personal recovery processes of forensic mental health service users. The CHIME-S may guide the recovery-oriented work of forensic mental health services