Health professionals' dealing with hope in palliative patients with cancer, an explorative qualitative research.

Hope is important for individuals with cancer in palliative care. Health professionals' perspective on hope affects the communication with palliative patients. The aim of this study was to explore how Dutch health professionals deal with palliative patients with cancer who hope for prolongation of life. Focus group discussions (FGD) were conducted. An interpretive description approach was used to understand the interpretation of and reaction to hopefulness in palliative patients with cancer by health professionals. Three FGDs were held, each consisting of five to ten health professionals working with palliative patients recruited in a general Dutch hospital and homecare organisation. The ways in which the participating health professionals interpret hope in palliative individuals with cancer and their behaviour towards these hopeful palliative patients are shaped by their reliance on their own normative ideas. Patients' hopefulness generally violates these norms and is, therefore, considered a problem that requires intervention. Hope that does not correspond with the medical facts is experienced as problematic by Dutch health professionals who therefore believe they should intervene and do something about it. Health professionals are challenged to face and address patients' and families' perceptions of hope, especially when those perceptions might differ from their own as professionals.

Trust: an essential condition in the application of a caregiver support intervention in nursing practice.

BACKGROUND: The recent policy of deinstitutionalization of health care in Western countries has resulted in a growing number of people - including elderly - with severe mental illness living in the community where they rely on families and others for support in daily living. Caregiving for partners, parents, children, and significant others can be a stressful experience and has been associated with psychosocial problems and poorer physical health. To support caregivers, a new, complex, nurse-led caregiver - centered intervention was developed. The intervention focuses on preventing deterioration in the wellbeing of caregivers. The objective of this study is to obtain a better understanding of the potentials of this new intervention. METHODS: We applied an interpretative qualitative field study at two Dutch mental health care institutes. Thirteen caregivers participated in a one-time semi-structured interview. RESULTS: From the caregivers' perspective, a trusting relationship between caregivers and the mental health nurse is an essential condition for the depth and hence the effectiveness of the caregiver-centered counseling intervention. In this trusting relationship three overlapping and mutually reinforcing phases were identified (1) phase of engagement, (2) recognition of personal needs and (3) hope and optimism. Each phase encompasses key experiences that enhanced trust in that phase. CONCLUSIONS: Collaborative relationships between caregivers and mental health nurses provide a framework in which the mental health nurse can assess and help not only patients but also caregivers to gain insight into their situation and take on new roles and responsibilities in ways that promote their wellbeing.

The suffering in silence of older parents whose child died of cancer: A qualitative study.

As life expectancy grows, the death of an adult child becomes a highly prevalent problem for older adults. The present study is based on nine interviews and explores the experience of parents (≥70 years) outliving an adult child. The bereaved parents described some silencing processes constraining their expression of grief. When an adult dies, the social support system nearly automatically directs its care towards the bereaved nuclear family. Parental grief at old age is therefore often not recognized and/or acknowledged. Health care providers should be sensitive to the silent grief of older parents both in geriatric and oncology care settings.

Driven by Ambitions: The Nurse Practitioner's Role Transition in Dutch Hospital Care.

INTRODUCTION: Insight into nurse practitioners' (NPs') role transition can help NP students and new graduates in taking on new responsibilities in a changing and demanding healthcare context. The aim of the research was to explore the role transition from nurse to NP using the components of Meleis's Framework of Transitions. METHOD: A qualitative descriptive design was used. Individual interviews (n = 9) and two focus group discussions (n = 12) were held with NPs. Data were analyzed with the directed content analysis method. FINDINGS: The Framework component transitions' nature was characterized by changes in the healthcare system, combined with professional and educational role changes. Transition conditions showed that the respondents felt distressed after they became accountable for a patient's care and well-being. Although the respondents were authorized to do medical procedures, they initially lacked nursing role models and NP protocols. Process indicators showed ongoing transition; the respondents were still developing clinical competencies and confidence in patient care while relying on earlier acquired nursing competencies. Outcome indicators showed that the respondents found themselves successful in the medical extension of two different nursing roles: continuity of medical care for hospitalized patients in acute and intensive care settings, and being responsible for continuity of care for chronic patients in outpatient clinics. CONCLUSIONS: Role transition was characterized by coping with feelings of distress at the cost of time and effort. The respondents' strategies to adapt to new expectations, combined with organizational support, determined the outcomes as well as the start of new transitions. CLINICAL RELEVANCE: NPs' role transition in hospital care implies a dynamic ongoing process that needs to be supported, with the ultimate goal to improve patient outcomes.

Mental health nurses' support to caregivers of older adults with severe mental illness: a qualitative study.

BACKGROUND: Literature has shown the serious impact of severe mental illness on the daily life of caregivers. We studied reported caregiver support practices by mental health nurses for use in the development of a nursing intervention. We aimed to explore current caregiver support practices by mental health nurses. METHODS: Twenty-one participants completed semi-structured interviews, and 17 participants attended two focus groups. All interviews were audio-taped, transcribed and coded for qualitative analysis. RESULTS: The diversity in caregiver support could best be described by three prototypes: the tolerator, the preventer and the concerner, representing three approaches of involvement with caregivers. At one end of the spectrum are mental health nurses (MHN) who are essentially only concerned with the wellbeing of the care recipient and see the caregiver as a potential impediment in reaching the client's goals. We call these the tolerators. At the other end of the spectrum are the MHNs who see the caregiver and the care recipient as inextricably connected with each other. In these cases the MHN directs her/his intervention towards both the informal caregiver and the care recipient. We call these the concerners. In the middle position are MHNs who realize that caregivers are important agents in the achievement of the client's goals, and therefore consider preventing them from becoming overburdened as an important goal. We call these the preventers. CONCLUSIONS: Based on the extent to which the MHNs believe that the informal caregiver plays a necessary role in the client's support system, and the degree to which they feel responsible for the caregiver's wellbeing, three MHN prototypes can be distinguished. These prototypes determine how the nurses' vision directs their understanding of their role and responsibilities and the content of their behaviour. This implies that a change in behaviour needs to be preceded by a change in vision. Therefore, promoting family support cannot be achieved by one-size-fits-all-programmes.

Why shared decision making is not good enough: lessons from patients.

A closer look at the lived illness experiences of medical professionals themselves shows that shared decision making is in need of a logic of care. This paper underlines that medical decision making inevitably takes place in a messy and uncertain context in which sharing responsibilities may impose a considerable burden on patients. A better understanding of patients' lived experiences enables healthcare professionals to attune to what individual patients deem important in their lives.This will contribute to making medical decisions in a good and caring manner, taking into account the lived experience of being ill.

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study.

BACKGROUND: Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness. METHODS: A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews. RESULTS: We identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver. CONCLUSIONS: The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.

The investigation of early warning signs of aggression in forensic patients by means of the 'Forensic Early Signs of Aggression Inventory'.

AIMS AND OBJECTIVES: The Forensic Early Warning Signs of Aggression Inventory (FESAI) was developed to assist nurses and patients in identifying early warning signs and constructing individual early detection plans (EDP) for the prevention of aggressive incidents. The aims of this research were as follows: First, to study the prevalence of early warning signs of aggression, measured with the FESAI, in a sample of forensic patients, and second, to explore whether there are any types of warning signs typical of diagnostic subgroups or offender subgroups. BACKGROUND: Reconstructing patients' changes in behaviour prior to aggressive incidents may contribute to identify early warning signs specific to the individual patient. The EDP comprises an early intervention strategy suggested by the patient and approved by the nurses. Implementation of EDP may enhance efficient risk assessment and management. DESIGN: An explorative design was used to review existing records and to monitor frequencies of early warning signs. METHODS: Early detection plans of 171 patients from two forensic hospital wards were examined. Frequency distributions were estimated by recording the early warning signs on the FESAI. Rank order correlation analyses were conducted to compare diagnostic subgroups and offender subgroups concerning types and frequencies of warning signs. RESULTS: The FESAI categories with the highest frequency rank were the following: (1) anger, (2) social withdrawal, (3) superficial contact and (4) non-aggressive antisocial behaviour. There were no significant differences between subgroups of patients concerning the ranks of the four categories of early warning signs. CONCLUSION: The results suggest that the FESAI covers very well the wide variety of occurred warning signs reported in the EDPs. No group profiles of warning signs were found to be specific to diagnosis or offence type. RELEVANCE TO CLINICAL PRACTICE: Applying the FESAI to develop individual EDPs appears to be a promising approach to enhance risk assessment and management.

Learning opportunities in case studies for becoming a reflective nurse practitioner.

The transition from RN to nurse practitioner presents challenges. Because nurse practitioners require deeper critical decision-making abilities to provide safe and quality health care, the Master in Advanced Nursing Practice curriculum implemented reflective case studies to facilitate active and reflective learning. To identify the learning opportunities, we performed a qualitative interpretative study of 77 reflective case studies written by students enrolled in the program. Analysis revealed two categories of learning opportunities-(a) Direct Care, with subcategories of focusing on patients' needs, exploring one's own values, and providing comprehensive care; and (b) Increased Performance Demands, with subcategories of handling independence and dependence, and dealing with emotions. The reflective case study is a powerful educational tool to create and guide a new professional with increased responsibilities for a comprehensive and compassionate response to patients' needs.

Validation of the Dutch version of the itching cognitions questionnaire.

The purpose of this study was to examine the reliability and validity of the Dutch itching cognitions questionnaire (ICQ). This by origin German questionnaire, the Juckreiz Kognitons Fragebogen consists of two subscales: catastrophizing and helpless coping and problem-focused coping, and measures itch-related coping. The results were compared with the German and Japanese validation studies. The Dutch ICQ was completed by 171 patients with chronic pruritic skin diseases. Reliability was evaluated by determining internal consistency, mean inter-item correlation, and item-total correlation. Cronbach's alpha was .90 (catastrophizing and helpless coping) and .81 (problem-focused coping). The mean inter-item correlations for the subscales were .48 (catastrophizing and helpless coping) and .30 (problem-focused coping). The item-total correlations range from .57 to .76 (catastrophizing and helpless coping) and from .32 to .57 (problem-focused coping). Confirmatory factor analysis indicated a good fit of the model and support construct validity. Concurrent validity was determined by examining correlations of the ICQ with intensity of itching and scratching, depression, and anxiety. The correlations of the subscale catastrophizing and helpless coping with intensity of itching and intensity of scratching are .28 (p < .01) and .32 (p < .01), respectively. The correlation between the subscale problem-focused coping and intensity of itching is .23 (p < .01). No significant correlation exists between problem-focused coping and intensity of scratching. Correlations between both subscales and anxiety and depression vary from .33 to .58 (p < .01). It was concluded that the Dutch version of the ICQ is a reliable and valid instrument.

Parental experience at the end-of-life in children with cancer: 'preservation' and 'letting go' in relation to loss.

PURPOSE: For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility. PARTICIPANTS AND METHODS: A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer. RESULTS: Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child's status quo. Letting go means parents give up their resistance to loss in service of their child's well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child's well-being as well as the evaluation of enacted parenthood. CONCLUSION: For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child's real situation and needs.

Review: a conceptual model of perceived burden of informal caregivers for older persons with a severe functional psychiatric syndrome and concomitant problematic behaviour.

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.

The development of the Forensic Early Warning Signs of Aggression Inventory: preliminary findings toward a better management of inpatient aggression.

OBJECTIVE: "Early warning signs of aggression" refers to recurring changes in behaviors, thoughts, perceptions, and feelings of the patient that are considered to be precursors of aggressive behavior. The early recognition of these signs offers possibilities for early intervention and prevention of aggressive behaviors in forensic patients. The Forensic Early warning Signs of Aggression Inventory (FESAI) was developed to assist nurses and patients in identifying and monitoring these early warning signs of aggression. METHODS: The FESAI was developed by means of qualitative and quantitative strategies. One hundred seventy six early detection plans were studied to construct a list of early warning signs of aggression. Inventory drafting was done by merging and categorizing early warning signs. Forensic nursing professionals assessed face validity, and interrater agreement was tested. RESULTS: The investigation of early detection plans resulted in the FESAI, which contains 44 early warning signs of aggression subdivided into 15 main categories. The face validity of the form was very good, and the interrater agreement was satisfactory. CONCLUSIONS: Preliminary findings indicate that the FESAI provides a useful listing of early warning signs of aggression in forensic patients. It may facilitate the construction of early detection plans for the prevention of aggressive behaviors in forensic psychiatry.

Factors influencing parental readiness to let their child with cancer die.

BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process. Most struggle to preserve their child. This study identified, from a parental perspective, the main factors that influence the transition from preserving life to letting go. PROCEDURE: A multi-centre, qualitative research, study was undertaken during the end-of-life (EoL) phase, comprising single or repeated interviews with 44 parents of 23 children with incurable cancer. RESULTS: We discovered that uncertainty, fragmentation and anxiety underpin the preserving life perspective. A perspective of letting go could be supported by a variety of factors. These included: Certainty that the child cannot be cured, postponed grief, the perception of suffering, the ability to disentangle needs and the ability to parent meaningfully. Hope, creating a peaceful parent-child relationship, and the attitude of professionals, could support movements in either direction. Of these, certainty, and in most cases postponed grief, were pre-conditions for the transition towards letting go. Strategies such as not challenging the parents' suppression of grief, creating certainty about the child's condition and supporting parents in efforts to redefine their parental role, supported progress towards accepting a letting go perspective. CONCLUSIONS: Parents' internal struggle between a preserving frame of mind and one of letting go is influenced by a combination of factors. However, professionals can influence some of these factors in order to facilitate this transition.

Protocols for pressure ulcer prevention: are they evidence-based?

AIM: This study is a report of a study to determine the quality of protocols for pressure ulcer prevention in home care in the Netherlands. BACKGROUND: If pressure ulcer prevention protocols are evidence-based and practitioners use them correctly in practice, this will result a reduction in pressure ulcers. Very little is known about the evidence-based content and quality of the pressure ulcer prevention protocols. METHOD: In 2008, current pressure ulcer prevention protocols from 24 home-care agencies in the Netherlands were evaluated. A checklist developed and validated by two pressure ulcer prevention experts was used to assess the quality of the protocols, and weighted and unweighted quality scores were computed and analysed using descriptive statistics. RESULTS: The 24 pressure ulcer prevention protocols had a mean weighted quality score of 63.38 points out of a maximum of 100 (sd 5). The importance of observing the skin at the pressure points at least once a day was emphasized in 75% of the protocols. Only 42% correctly warned against the use of materials that were 'less effective or that could potentially cause harm'. CONCLUSION: Pressure ulcer prevention commands a reasonable amount of attention in home care, but the incidence of pressure ulcers and lack of a consistent, standardized document for use in actual practice indicate a need for systematic implementation of national pressure ulcer prevention standards in the Netherlands to ensure adherence to the established protocols.

Preventing aggressive incidents and seclusions in forensic care by means of the 'Early Recognition Method'.

OBJECTIVE: The Early Recognition Method aims at improving collaboration between nurses and patients to prevent aggression in forensic psychiatric care. To achieve this goal, Early Recognition Method strongly focuses on early signs of aggression. In the current study, we investigated whether application of Early Recognition Method led to a significant decrease in inpatient incidents. BACKGROUND: Nurses in forensic settings are often confronted with patients' aggression. Better collaboration between nursing staff and patients may improve patients' ability to self manage aggression and contribute to a decrease in inpatient aggression. DESIGN: Naturalistic one-way case-crossover design. METHODS: The Early Recognition Method was introduced on 16 wards of a maximum security forensic hospital. Using a one-way case-crossover design, where cases were their own controls, the effects of Early Recognition Method were assessed by comparing the number of incidents of 189 patients during 'Treatment As Usual' with the period after Early Recognition Method was implemented. The Early Recognition Method intervention involved weekly evaluations of signs of aggression between staff and patients. The outcome measures were the number of seclusions and the severity of inpatient incidents. RESULTS: A significant decline in the number of seclusions was observed after Early Recognition Method was introduced. Apart from this decrease, the mean severity of inpatient incidents was also found to be lower during the post intervention period. The effect size was most pronounced for patients with substance abuse and personality disorders. Patients with schizophrenia, however, showed modest, yet significant, effect sizes. CONCLUSIONS: The results suggest that Early Recognition Method may be an innovative and effective risk management method for forensic psychiatric patients, in particular for patients with personality disorders. RELEVANCE TO CLINICAL PRACTICE: This article aims to contribute to evidence-based risk management for nurses in collaboration with their patients, resulting in a decrease in inpatient aggression.

The focus of family members' functioning in the acute phase of traumatic coma: part one: The initial battle and protecting life.

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.

The focus of family members' functioning in the acute phase of traumatic coma: part two: Protecting from suffering and protecting what remains to rebuild life.

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.

Detached concern of forensic mental health nurses in therapeutic relationships with patients the application of the early recognition method related to detached concern.

OBJECTIVE: Improvement of the interaction between forensic mental health nurses and patients may lead to a reduction of inpatient violence. The concept under study is detached concern, which refers to nurses' skills to neutralize the emotional appeal of patients by a balanced attitude between objectivity and emotional involvement. The Patient Contact Questionnaire (PCQ) aims at measuring the degree of concern of nurses for their patients. METHODS: The PCQ was applied in a pretest-posttest design, evaluating the effects of the Early Recognition Method (ERM). This method aims at the prevention of inpatient violence in forensic psychiatry. Subjects were 116 forensic mental heath nurses working on 16 wards of a large Dutch forensic hospital. First, the baseline scores were compared to scores reported in an earlier study conducted in general psychiatry. Second, pretest-posttest comparisons were carried out for all nurses, and for subgroups of nurses with regard to gender, educational level, years of working experience, and patient population. Third, pretest-posttest comparisons were made on the PCQ item level. RESULTS: The baseline scores of male nurses indicated significantly higher levels of concern than those of female nurses. In addition, more experienced nurses scored significantly higher with regard to concern than less experienced nurses. When comparing the scores before and after applying ERM, no significant differences were found. However, the sores of female nurses showed a tendency toward more concern after implementation of ERM. CONCLUSIONS: Detached concern may be a meaningful concept in forensic mental health nursing in measuring nurses' concern for their patients. Levels of detached concern did not change significantly after application of ERM. However, the application of the PCQ could contribute to a better understanding of the interaction between nurses and their patients.

Adherence to HAART: processes explaining adherence behavior in acceptors and non-acceptors.

In order to explore and clarify the underlying processes which lead to (non)-adherence behavior in patients treated with highly active antiretroviral therapy (HAART), a qualitative study was conducted. Thirty-seven in-depth interviews were held with 30 Caucasian HIV-positive patients. Additional data were collected by diaries kept by some participants. The analysis took place in a cyclic process; selection of themes was alternated with input of new material. Adherence to HAART is mainly influenced by the experience of being HIV positive. Acceptance or non-acceptance of HIV leads to one of two basic stances toward adherence: "being determined to be adherent" or "medication is subordinate to other priorities in life". This stance determines the commitment to therapy and influences how patients cope with adherence. Patients who are determined to be adherent find solutions to adherence problems. Patients who are not determined to be adherent solve problems only if the solution does not compromise important aspects of their lives. Insight is provided into the manner in which prevalent themes; "start of HAART", "attitude toward medication", "HAART in daily life", "contextual factors", "health and HAART" and "being informed", influence adherence behavior. Before starting HAART the focus should be on helping the patient to accept HIV as a part of life. The findings need to be taken into account in adherence-promoting interventions.