Out‐of‐home Placement of School‐age Children with Disabilities and High Support Needs

Background This study explored the relationship between family life variables and out‐of‐home placement tendency for families of school‐age children with disabilities and high support needs. Method This study was a prospective cohort study of 81 families with children with disabilities and high support needs aged between 6 and 13 years. There were two waves of data collection 12–18 months apart involving in‐depth interviews with the primary carer. Results Out‐of‐home placement tendency was associated with three interrelated family life variables: (i) difficulty balancing the demands of caring and the needs of other family members; (ii) sharing workload and responsibility; and (iii) integrating the child into the everyday world. Conclusion Family capacity to continue balancing the demands of caring and the needs of other family members is central to maintaining family‐based placement.     

Pre‐ICD Illness Beliefs Affect Postimplant Perceptions of Control and Patient Quality of Life

Background: The implantable cardioverter defibrillator (ICD) is a device used in the treatment of ventricular arrhythmias and the prevention of sudden cardiac death. However, the ICD has been associated with negative psychological outcomes such as anxiety, depression, panic, and poor quality of life (QoL). Recent studies suggest that the preimplantation psychology of patients, combined with their postimplantation perceptions about their cardiac condition, are greater contributory factors than their medical status to a poor outcome. Method: Our study employed an interview‐based qualitative grounded theory methodology to explore whether medical history hetereogeneity and illness beliefs impact on the QoL of 13 ICD patients. Results: Perceived control emerged as the core category related to QoL with three subsystem themes related to control: (1) illness beliefs, attributions, and appraisals; (2) coping resources and strategies; and (3) the social world. Patients at risk for the poorest adaptation were younger (<45), unemployed, and with an acute onset cardiac history. These patients interpreted their illness as severe, utilized emotion‐focused coping (e.g., avoidance of situations), and believed themselves to be socially excluded. Adjusted patients used proactive problem‐focused coping (e.g., normalizing) and minimized consequences of the device. Conclusions: The data developed a theoretical model of QoL, which identified perceived control, illness beliefs, and coping impacting on adjustment. From our study, we have a wider understanding of the combination psychological issues relevant to ICD patients and are able to treat those at risk with interventions to promote adjustment in the context of a society that values health and well‐being. (PACE 2010; 33:256–265)     

Effects of a music‐creation programme on the anxiety,self‐esteem,and quality of life of people with severe mental illness: A quasi‐experimental design

Many studies have shown that music therapy improves patients' symptoms. However, interventions using music creation as their core await further development for patients with severe mental illness (SMI). The current study investigated the effect of a music‐creation programme on the anxiety, self‐esteem, and quality of life of patients with SMI. A quasi‐experimental design using convenience sampling was adopted to recruit patients with SMI from a psychiatric day care centre. Participants were grouped based on their willingness to undergo an intervention (26 patients in the experimental group and 23 patients in the control group). The control groups participated in conventional mental rehabilitation therapy activities. The experimental group participated in a music‐creation session for 90 min every week over a 32‐week period. The outcome indicators before and after the intervention were assessed using the Hamilton Anxiety Rating Scale (HAM‐A), Rosenberg Self‐Esteem Scale (RSES), and World Health Organization Quality of Life‐BREF (WHOQOL‐BREF). Finally, the intervention effect was determined using generalized estimating equations (GEEs). After 32 weeks of intervention activities, the experimental group showed significant improvements in their HAM‐A total scores (P < 0.001) and RSES total scores (P = 0.005). Regarding quality of life, the improvements of the experimental group in terms of the psychological (P = 0.016) and social relationship domains (P = 0.033) were superior to those of the control group. Music‐creation programmes are recommended for inclusion in the routine rehabilitation activities of patients with SMI.     

The psycho‐social dimension of pain and health‐related quality of life in the oldest old

Background: Chronic pain has an impact on the physical and social functioning of older people which in turn may worsen their health‐related quality of life. Research with focus on prolonged extensive pain in the most elderly and how pain may interfere with their life situation is scarce. Aims: The aims were to describe and investigate pain from a multidimensional point of view (duration, location, psycho‐social) and health‐related quality of life as well as to compare sex and age groups in people aged 80 years and over. Methods: In this cross‐sectional study, a total of 225 of 282 people responded to a questionnaire consisting of two instruments and background questions. The psycho‐social dimension of pain was measured using the Multidimensional Pain Inventory–Swedish language version (MPI‐S) with five scales: Pain Severity, Interference, Life Control, Affective Distress and Social Support. Health‐related quality of life was measured using the Short Form Health Survey‐12 (SF‐12). Results: Median duration of pain was 9.0 years, and the mean number of pain locations was 2.04. The MPI‐S scale Interference with a negative orientation had the highest mean score, while the mean score for Social Support was the highest for the scales with a positive orientation. The duration of pain was significantly greater for women, and those aged 80–85 years had higher pain severity than those aged ≥86. Participants with a lower health‐related quality of life experienced significantly more severe pain, were more troubled with pain and had less control of their life. Conclusions: Older people with prolonged pain suffered from a low health‐related quality of life. Pain interfered with their lives and contributed to diminished control in their daily lives. Nurses are essential for the identification and prevention of pain and should be aware of how pain affects older people’s physical, mental and social health.     

Metasynthesis: withdrawing life‐sustaining treatments: the experience of family decision‐makers

Aim. The present study was undertaken to synthesise findings from qualitative investigations of family participation in decisions to withdraw and/or withhold life‐sustaining treatment from a seriously ill family member. Background. As a consequence of increasing effectiveness and sophistication of available medical interventions, death is commonly preceded by a decision to withdraw or withhold potentially life‐sustaining treatments. These decisions take place in a bioethical context characterised by the preeminence of self‐determination, but patients are typically too ill to make their own decisions. Thus, family members are called upon to participate in these morally consequential decisions on the patient’s behalf. Design. Metasynthesis Method. Metasynthesis is a form of inquiry that provides for integration of qualitative studies’ findings to strengthen knowledge for practice and advance theoretical development. This metasynthesis was conducted using the constant comparative methods of grounded theory. Results. Family members engage in a process of participation in decision‐making that is comprised of three major categories: reframing reality, relating and integrating. Surrogates used both cues and information as they reframed their understanding of the patient’s status. Relationships with providers and with other family members powerfully influenced the decision‐making process. Integrating was characterised by reconciling and going forward. This part of the process has both intrapersonal and interpersonal aspects and describes how family decision‐makers find meaning in their experience and move forward in their lives. Conclusions. This synthesis provides a more comprehensive and empirically supported understanding of family members’ experiences as they participate in treatment decisions for dying family members. Relevance to clinical practice. This metasynthesis provides evidence to improve family care during treatment withdrawal/withholding decision‐making and a theoretical model that can be used to guide creation of clinical practice guidelines. Through increased understanding of family members’ experiences, clinicians can more effectively support family decision‐making processes.