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Aims and Objectives: This literature review aims to delineate the determinants of perceived burden by informal caregivers and provide insight into the interrelatedness between these determinants., Background: Despite the attention given to the various determinants of perceived burden, their interrelatedness has not been unravelled. Insight into this interrelatedness is mandatory for the development of successful, complex, multivariate interventions to reduce perceived burden of informal caregivers. DESIGN; Systematic review., Method: Four electronic databases, CINAHL, Embase psychiatry, Medline, Psychinfo and reference lists of selected articles, were searched. Publications between January 1985-2008 were included if they concerned mental illness, burden and care giving. Articles were selected according to predefined inclusion and exclusion criteria., Results: The results of mostly descriptive, cross-sectional and univariate research and the more process-oriented results coming from qualitative burden research are organised in a process orientated conceptual scheme or model adapted from the stress-theoretical framework by Lazarus and Folkman. The model indicates that perceived burden must be understood through the individual appraisal of stressors and the availability and use of internal and external resources. Perceived burden is the outcome of multiple, clinically overlapping psychiatric problems, problematic behaviour and functional disabilities., Conclusions: So far, intervention programs to reduce perceived burden of informal caregivers have not devoted much attention to the interrelatedness of the origins of burden. The conceptual model provides an overview of the various determinants of perceived burden and a clear picture of the possible interrelatedness appears. This overview of the most important sources of burden helps to develop a complex, multivariate intervention that is comprehensive, long-term, individually tailored and has the flexibility to meet the dynamics of burden over time., Relevance to Clinical Practice: Use of the conceptual model is crucial to professional nursing and the quality of support of informal caregivers., (© 2011 Blackwell Publishing Ltd.)

Aims: The identification and description of the basic psychological process linked with the focus of family members' functioning during the acute phase of traumatic coma., Background: Earlier research learned that hope is a core category in coping with traumatic coma. Hope seems to be the drive to keep family members going and to enable them to fulfil their main task, namely protecting. In the two articles on the focus of family members functioning, this task is defined and the process linked with it is described., Design: A qualitative approach according to the 'grounded theory' method., Method: Twenty-four in-depth interviews with 22 family members of 16 patients with traumatic coma., Results: Family members describe the period after the confrontation with traumatic coma as a battle. During this battle, they feel the urge to protect their relative in coma, other family members and themselves. They go through three phases: protecting life, protecting from suffering, protecting what remains to rebuild life. In this article (Part Two) we describe the phase of protecting from suffering and protecting what remains to rebuild life., Conclusions: All relatives go through the three phases. Family members who have already overcome previous set-backs get through the process slightly more quickly and experience less extreme emotions., Relevance to Clinical Practice: Understanding the process of protecting in different phases may help health care professionals to do anything in their power to avoid unnecessary suffering, to ease the pain and to support family members in their task of protecting.

Aims: The identification and description of the basic psychological process linked with the focus of family members' functioning during the acute phase of traumatic coma., Background: Earlier research learned that hope is a core category in coping with traumatic coma. Hope seems to be the drive to keep family members going and to enable them to fulfil their main task namely protecting. In two articles on the focus of family members functioning, this task is defined and the process linked with it is described., Design: A qualitative approach according to the grounded theory method with constant comparison., Method: Twenty four in-depth interviews with 22 family members of 16 patients with traumatic coma., Results: Family members describe the period after the confrontation with traumatic coma as a battle. During this battle, they feel the urge to protect their relative in coma, other family members and themselves. They go through three phases: protecting life, protecting from suffering, protecting what remains to rebuild live. In this article (Part One) we describe the initial battle and the phase of protecting life., Conclusions: All relatives go through the three phases. Family members who have already overcome previous set-backs get through the process slightly more quickly and experience less extreme emotions., Relevance to Clinical Practice: Understanding the process of protecting in different phases may help health care professionals to do anything in their power to avoid unnecessary suffering, to ease the pain and to support family members in their task of protecting.

Aims and Objectives: To gain insight into the lived experience of parenting a child with leukaemia during treatment., Background: Diagnosis of leukaemia in children leads to an existential shock for parents and a reversal of normal family life. Today, in the Netherlands, after diagnosis, children stay at home most of the time. Therefore, their parents face considerable responsibilities for administering home-based treatment and for the support of their child during illness and treatment., Methods: A grounded theory study was undertaken at a Dutch University Hospital and involved one-time individual in-depth interviews with 12 mothers and 11 fathers (n = 23) of 12 children., Findings: 'Being there', was identified as the core concept. It means: 'I'll be there for you; I will never let you down'. 'Being there' is described as a parental response to the perceived vulnerability of the child and the parental need to give meaning to parenthood. It serves two purposes: protection and preservation. Protection means guarding the child against the negative aspects of illness and treatment. Preservation refers to the way parents influence the child's perception of his/her life, thus contributing to his/her coping and willingness to undergo treatment, to maximise the chances for survival. Six aspects were identified: a trusting relationship, presence, emotional support, advocacy, routines and rituals and effacing oneself., Conclusions: The concept provides a theoretical frame for parenting the child with cancer. It clarifies the actions and reactions of parents and increases insight into the underlying force that enables parents to provide continuing care despite their personal burden., Relevance to Clinical Practice: The concept offers an essential insight into parenting the child with acute lymphoblastic leukaemia and has relevance for nursing practice and education. Understanding of the concept would improve the ability to understand, communicate and work pro-actively in partnership with parents.

Aims: To assess the interplay between hope and the information provided by health care professionals., Background: Earlier research learned that hope is crucial for relatives of traumatic coma patients. Also it has been reported that the need for information is extremely important for relatives of critically ill patients., Design: A qualitative approach according to the 'grounded theory' method with constant comparison was used., Method: We held 24 in-depth interviews with 22 family members of 16 patients with traumatic coma. Data processing and data analysis took place in a cyclic process wherein the induction of themes was alternated by confrontation with new material., Results: Family members of traumatic coma patients want information that is as accurate as possible, provided by doctors and nurses in an understandable manner and leaving room for hope. At first, family members can do no more than passively absorb the information they receive. After some time, they actively start working with information and learn what to build their hope on. In this way, concrete hope evolves and seems to be strongly determined by information. Information that is more positive than warranted is not appreciated at all. It leads to false hope and once its real nature becomes apparent, to increased distress and loss of trust in the professionals., Conclusion: The process of hope is crucial in coping with traumatic coma and information can facilitate this process., Relevance to Clinical Practice: If professionals, especially nurses, keep the process in mind that family members go through in handling information, they can not only facilitate this process but also help them to establish realistic hope.

Patients undergoing surgery are prone to develop pressure ulcers during the surgical procedure. The aim of the study was to gain insight into the problem by describing the incidence, clinical features and progression of pressure ulcers and closed pressure ulcers in patients undergoing surgery lasting more than 4 hours. A prospective follow-up study was conducted in a university hospital in the Netherlands. Two-hundred and eight patients from nine surgical specialities were included in the study. The skin of patients was observed the evening before surgery and, if the patient's condition allowed it, directly postoperatively and subsequently daily for 14 days or until discharge, whichever occurred first. When patients developed a pressure ulcer they were observed daily until discharge or until the pressure ulcer had healed. The size and colour of the lesion, stage and skin condition were described every day. In addition, data were collected concerning the operation, postoperative period, and general characteristics. Forty-four patients (21.2%) developed 70 pressure ulcers in the first 2 days following surgery. Twenty-one pressure ulcers deteriorated in the days following surgery. More than half (52.9%) of the lesions developed on the heels, and 15.7% developed in the sacral area. Twenty-five patients (12%) were impaired by the lesions they developed. None of the patients in the study developed closed pressure ulcers. Pressure ulcer development during a surgical procedure is a serious problem. Therefore, preventive measures should be taken during surgery and the first few days afterwards, until the patient is able to mobilize independently.