“What we want”: chronically ill adolescents’ preferences and priorities for improving health care

Background: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents' preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected. Methods: This research was a sequential mixed methods study in adolescents aged 12-19 years with various chronic conditions treated in a university children's hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items. Results: Having "a feeling of trust" and "voice and choice" in the hospital were central to these adolescents. Regarding providers' qualities, 'being an expert' and "being trustworthy and honest" were ranked highest, followed by "being caring and understanding", "listening and showing respect", and "being focused on me". Regarding outpatient consultations, preferences were ranked as follows: "answering all questions"; "attending to my and my parents' needs"; and "clear communication", while "limited waiting times" and "attractive outpatient surroundings" scored lowest. Regarding hospitalization, adolescents most preferred to 'avoid pain and discomfort', "keep in touch with home", and "be entertained", while "being hospitalized with peers" and "being heard'" were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%). Conclusion: Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly

The Teachers’ Role in Behavioral Problems of Pupils With EBD in Special Education:Teacher–Child Relationships Versus Structure

This longitudinal study examined bidirectional associations between special education pupils’ teacher–child relationship characteristics (quality, satisfaction, and conflict), classroom structure, and behavioral problems (externalizing and attention-hyperactivity). A secondary goal was to investigate the extent to which severity of behavioral problems moderated the prospective associations. Participants were 586 pupils (86% boys) in Grades 4 to 6 (Mage time 1 = 10.82 years, SD = 0.86) from 13 special education schools in the Netherlands and their teachers. Findings indicated that primarily teacher–child conflict was related to increased externalizing problems. More classroom structure was related to decreased attention-hyperactivity problems, but higher teacher–child relationship quality was linked to increases in attention-hyperactivity problems. Moreover, both types of problems were related to increases in conflict. Severity of behavior problems did not moderate these associations. Although findings were not consistent in both school years, they suggested that particularly reducing conflict and instilling more classroom structure were the most effective strategies in reducing behavioral problems. Furthermore, disrupting negative transactional associations between conflict and externalizing behavior is important to reduce externalizing behavior.</p

The Teachers’ Role in Behavioral Problems of Pupils With EBD in Special Education:Teacher–Child Relationships Versus Structure

This longitudinal study examined bidirectional associations between special education pupils’ teacher–child relationship characteristics (quality, satisfaction, and conflict), classroom structure, and behavioral problems (externalizing and attention-hyperactivity). A secondary goal was to investigate the extent to which severity of behavioral problems moderated the prospective associations. Participants were 586 pupils (86% boys) in Grades 4 to 6 (Mage time 1 = 10.82 years, SD = 0.86) from 13 special education schools in the Netherlands and their teachers. Findings indicated that primarily teacher–child conflict was related to increased externalizing problems. More classroom structure was related to decreased attention-hyperactivity problems, but higher teacher–child relationship quality was linked to increases in attention-hyperactivity problems. Moreover, both types of problems were related to increases in conflict. Severity of behavior problems did not moderate these associations. Although findings were not consistent in both school years, they suggested that particularly reducing conflict and instilling more classroom structure were the most effective strategies in reducing behavioral problems. Furthermore, disrupting negative transactional associations between conflict and externalizing behavior is important to reduce externalizing behavior.</p

What factors contribute to cancer survivors’ self-management skills? A cross-sectional observational study

Purpose: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors’ self-management skills. Methods: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. Results: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants’ recognition and management, and therapy adherence (PIH-MSA). Conclusions: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.</p

Patient perceived needs and experiences of person-centered care in patients with inflammatory arthritis

BACKGROUND: Health care is shifting toward a person-centered care (PCC) approach. For implementation of PCC, there may be a special role for nurse practitioners (NPs). PURPOSE: The aim of this study was to explore the patient-perceived levels of and needs for of PCC in inflammatory arthritis patients who visited the NP at the outpatient clinic of an academic hospital in the Netherlands. METHODS: A cross-sectional study was performed. Disease characteristics were inventoried from the patient records. Patients filled out the PCCoc/rheum instrument, an instrument to measure patient perceived PCC, and a questionnaire based on the 14 life areas of the Self-Management Web, extended with areas including pain, fatigue, and night's rest. Participants were asked which life areas caused problems, and whether these problems were discussed. Mean values were calculated for normally distributed data and medians for nonnormally distributed data. RESULTS: Most of the patients had well-controlled disease (86.1%). The mean score of the PCCoc/rheum was 55.3 (SD 8.1). Patients experienced most problems in life areas fatigue (37.3%) and pain (35.3%), these were also the life areas that were most often addressed at consultation. The life areas that gave problems and that were least addressed during consultation were intimate relationships & sexuality (66.7%) and household chores (58.8%). CONCLUSIONS: Despite an overall high level of patient perceived PCC delivered by NPs, patient with low disease activity frequently reported problems in life areas not addressed at consultation. IMPLICATIONS FOR PRACTICE: Implementation of the Self-Management Web and changing the focus of NP consultations may help to improve accommodating individual patient needs

Evaluation of a nursing aftercare intervention for patients with head and neck cancer treated with chemoradiation

Head and neck cancer (HNC) patients treated with chemoradiation have to rediscover their life after recovering from severe side-effects and build-up self-confidence. To assist patients in this, an aftercare intervention to support patients’ self-management was implemented. This study aimed to evaluate the feasibility and first effects

A nurse-led self-management support intervention (ZENN) for kidney transplant recipients using intervention mapping: Protocol for a mixed-methods feasibility study

Background: Optimal self-management in kidney transplant recipients is essential for patient and graft survival, reducing comorbidity and health care costs while improving the quality of life. However, there are few effective interventions aimed at providing self-management support after kidney transplantation. Objective: This study aims to systematically develop a nurse-led, self-management (support) intervention for kidney transplant recipients. Methods: The Intervention Mapping protocol was used to develop an intervention that incorporates kidney transplant recipients' and nurses' needs, and theories as well as evidence-based methods. The needs of recipients and nurses were assessed by reviewing the literature, conducting focus groups, individual interviews, and observations (step 1). Based on the needs assessment, Self-Regulation Theory, and the "5A's" model, change objectives were formulated (step 2). Evidence-based methods to achieve these objectives were selected and subsequently translated into practical implementation strategies (step 3). Then, program materials and protocols were developed accordingly (step 4). The implementation to test the feasibility and acceptability was scheduled for 2015-2017 (step 5). The last step of Intervention Mapping, evaluation of the intervention, falls outside the scope of this paper (step 6). Results: The intervention was developed to optimize self-management (support) after kidney transplantation and targeted both kidney transplant recipients and nurse practitioners who delivered the intervention. The intervention was clustered into four 15-minute sessions that were combined with regular appointments at the outpatient clinic. Nurses received a training syllabus and were trained in communi