Coping with cancer:The perspective of patients' relatives

Cancer affects not only patients but also their loved ones. Material and methods. This paper presents a selective, narrative review of psychosocial consequences of cancer and its treatment for relatives of patients, including parents and siblings of children with cancer, children of parents with cancer and partners of adults with cancer. Results. Remarkably, most relatives adapt well to the cancer of a loved one. That is only a minority appears to be at risk for psychological morbidity. Bereavement has been found to impact psychological well being in the short-term, but it does also not appear to be a major risk factor for severe psychopathology. The exception being the loss of a child; this often appears to have intense and long-lasting effects on the parents. Furthermore, especially women were found to be at risk for distress. Conclusion. Future studies that focus on the interactions between patients and family members - parents, children and partners - are of great importance to further the field by providing more insight into the family dynamics of dealing with cancer. Such insights will offer tools for (refining) interventions for families in need

Life after bariatric surgery:psychosocial and behavioural characteristics and their effect on weight and well-being

Background: Bariatric surgery (BS) is an effective weight-loss treatment for severe obesity, leading to great weight reduction and long-term improvement in physical and psychological health. A subgroup of patients, however, reach unsatisfactory weight loss results. The aims of this research are to investigate: 1. The impact of BS on psychological well-being [e.g. health-related quality of life (HR-QoL), depression] over time, and 2. psychological factors (e.g. food craving, body image satisfaction, self-efficacy, attachment style and neuroticism) which may predict short- and long-term surgical outcomes. Currently, the field lacks testable hypotheses as well as conclusive findings about predictors of surgical outcomes.Method: Medical, psychosocial and behavioural factors are measured from obese patients admitted to Roux-en-Y gastric bypass before and 6-, 12- and 24-months after the surgery. Multivariate regression analyses will be used to answer the research questions.Expected results: We expect HR-QoL to improve and depressive symptoms to ameliorate as weight decreases. Furthermore, we expect higher food craving, body image satisfaction and negative affect to be important predictors of small weight loss, but which will also change for better as weight decreases. Current stage of work: A prospective, longitudinal study involving a multidisciplinary research team was initiated in September 2016 in Amsterdam and over 200 patients have been included so far. Discussion: This study will contribute in constructing a theory about weight loss after BS. Knowledge about psychological predictors of surgical outcomes will aid in patient screening and designing additional interventions aimed at supporting long-term weight maintenance after BS (e.g. eHealth).<br/

The relationship between quality of life and coping strategies of children with EB and their parents

BackgroundEpidermolysis bullosa (EB) is a group of rare genetic skin disorders that primarily manifest as blisters and erosions following mild mechanical trauma. Despite the crucial role of the parents of children with EB in managing the disease, studies focusing on the parent-child relationship remain a gap in the literature. To address this gap, the current quantitative study, involving 55 children with all types of EB and 48 parents, assessed the relationship between their quality of life and coping strategies. Quality of life was measured with the Pediatric Quality of Life Inventory and TNO-AZL Questionnaire for Adult's Health- related Quality of Life, and coping strategies were assessed with the Coping with a Disease Questionnaire. The majority of the analyses were descriptive and the results were interpreted qualitatively because of the small sample size.ResultsOverall, the quality of life of children with EB and that of their parents was somewhat lower compared with the quality of life of healthy children and adults. Children with EB who more frequently used emotional reactions and cognitive-palliative strategies to cope with the disease demonstrated lower levels of emotional and social functioning, while children who showed more acceptance and distancing showed higher levels of functioning on all domains. Parents who frequently demonstrated emotional reactions reported lower levels of social functioning and experienced more depressive emotions and anger. Parents who used more avoidance showed higher levels of positive emotions. Within parent-child dyads, acceptance, cognitive-palliative strategies and distancing were positively related. Children's emotional and social functioning were negatively associated with their parents' depressive emotions. Parents' acceptance was linked to higher physical functioning in children, whereas children's avoidance was linked to a lower level of anger in parents.ConclusionChildren who are able to accept the disease or distance themselves from it appear to be better off in contrast to those who tend to engage in the cognitive-palliative strategies and expressing emotional reactions. Parents seem to be better off when they are able to use avoidance in contrast to those who tend to show emotional reactions. Further research is needed to substantiate these findings

Patients' and parents' experiences during wound care of epidermolysis bullosa from a dyadic perspective:a survey study

Background Epidermolysis bullosa is a rare, often severe, genetic disorder characterized by fragility of the skin and mucous membranes. Despite the important role of parents during wound care, an essential factor in adapting to this disease, studies focusing on the parent-child relationship during wound care are scarce. The current study is aimed at addressing this gap. Methods A quantitative study among 31 children (n = 2

Parental protective and risk factors regarding cannabis use in adolescence:A national sample from the Chilean school population

Background: Research has increased our understanding of the parental factors associated with the initiation and development of cannabis use disorder in adolescents, but few studies about this have been performed in middle- or low-income countries. Objective: First, to examine whether perceived past parental drug use, parental monitoring, and attitude toward adolescent cannabis use are associated with general and problematic cannabis use in Chilean adolescents. Second, to explore whether perceived past parental drug use weakens the associations of protective factors with general and problematic adolescent cannabis use. Methods: Regression analyses were performed on cross-sectional data from a multistage probabilistic sample stratified by clusters (municipalities, school and grade) of 43,060 students (47% male, mean age 15.5 years) from grades 8 to 12, which was collected from the Chilean National School Survey on Drug Use (2013). Results: Perceived past parental drug use increased the likelihood of adolescent cannabis use in general, but not its problematic use. Parental monitoring of adolescents’ whereabouts and parental opposition to adolescent cannabis use decreased the likelihood of adolescent cannabis use in general, as well as problematic use. Perceived past parental drug use only interacted with parental monitoring of school activities. Conclusions: In line with research from the United States, the Netherlands and Spain, parental monitoring of adolescents’ whereabouts and a strong parental opposition to cannabis use appear to be protective factors, irrespective of past parental use. However, the effectiveness of monitoring adolescents’ school activities seems to decrease when parents are perceived as having used drugs in the past

Perceptions of professionals regarding interventions involving family members responsible for justice-involved youth with substance use disorders in santiago, chile.

Background: Eliciting professionals’ experiences of current drug treatment programmes can lead to improvements of these youth-centred programmes through the involvement of the concerned youths’ families. We explored perceived barriers amongst professionals concerning interventions incorporating parents or guardians responsible for justice-involved youth with substance use disorders. Methods: We conducted semi-structured in-depth interviews with fourteen female and four male professionals, each representing one of eighteen programmes under the Chilean National Drug Treatment Programme (2016–2017), who were tasked with contacting and/or intervening in the families of justice-involved youth. Subsequently, we performed traditional content analysis. Results: The professionals identified four key barriers impeding interventions: (1) parents’ non-adherence to the treatment and issues relating to their role fulfilment; (2) tensions within the programme design that constrain the families’ involvement in the interventions; (3) the lack of a supportive professional network offering interventions that complement drug treatment; (4) the problematic and dangerous living contexts of these families that discourage family involvement. Additionally, professionals identified intervention needs for improving treatment outcomes. Conclusions: The negative perceptions of professionals regarding the interventions as well as families and family contexts of justice-involved youth, and the lack of support from other programmes, induced feelings of hopelessness and pessimism amongst the professionals regarding the effectiveness of the Chilean National Drug Treatment Programme. It is essential to consider professionals’ perspectives not only to benefit from their expertise, but also to assess whether their perspectives may hinder the implementation of changes when attempting to innovate drug treatment modalities aimed at improving their outcomes

Partner support and distress in women with breast cancer:The role of patients' awareness of support and level of mastery

The aim of the present study was to investigate the associations between partners' ways of providing support (both active engagement and protective buffering) and distress in women with breast cancer as a function of patients' awareness of the support received and their sense of mastery. These associations were investigated both cross-sectionally and longitudinally (i.e. changes in distress over time). At 3 months (T1) after diagnosis, women with breast cancer and their partners (n = 82 couples) were assessed regarding partners' supportive behaviour. Women also indicated their sense of mastery. At both 3 and 9 months (T2) after diagnosis, women reported their level of distress. Cross-sectional as well as longitudinal analyses showed that active engagement was unrelated to distress, regardless of patients' awareness of the support received and their feelings of mastery. In contrast, perceived protective buffering was found to be associated with more concurrent distress (i.e. cross-sectionally). Moreover, protective buffering that was reported by partners but remained unnoticed by patients was associated with higher levels of concurrent distress, but only for patients who were low in mastery. Over time, protective buffering that remained unnoticed by patients was associated with more distress, regardless of women's sense of mastery

Why do Patients Engage in Pain Behaviors? A Qualitative Study Examining the Perspective of Patients and Partners

Objectives: Patients' pain behavior plays an important role in the interaction between patients and their partners, as acknowledged in operant models of pain. However, despite the considerable research attention to pain behaviors, the underlying motives of such behaviors are still unclear. The current study explores the motives to engage in pain behaviors and the possible discrepancies between individuals experiencing pain and partners' perceptions of those motives. Methods: A qualitative study was performed, comprising semistructured interviews with 27 patients with chronic low back pain and their partners. They were recruited through purposive sampling at 2 pain clinics located in Tehran, Iran. Results: Patients and partners mentioned a variety of motives for pain behaviors, including protecting oneself against more pain, regulating negative emotions, informing others about the pain severity, seeking validation or intimacy, gaining advantages from pain, and expressing anger. Patients and partners revealed the most similarities in motives such as protecting oneself against more pain and informing others about the pain severity. However, partners rarely acknowledged patients' motives for seeking validation and they were more likely to mention negative motives (eg, expressing anger). Discussion: In conclusion, partners are more likely to attribute negative motives to the patient's pain behaviors, which may lead to their hostility toward patients. The findings of this study provide new insights into motives of pain behaviors from the perspective of patients and partners, which can inform couple-based interventions in terms of effective pain communication.</p