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.

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.

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.

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.

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.

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.

Action research: what, why and how?

Action research is a form of research that enables practitioners to investigate and evaluate their own work. It is increasingly used in health care research; it is a research strategy in which the researcher and practitioners from the setting under study work together in projects aimed at generating new knowledge and simultaneously improving practice. This article gives an overview of the theoretical background of action research, its international historical development and explanations of its varied forms and related practical applications. Ethical problems are discussed as are questions of rigour The article shows that action research can be used to bridge the gap between theory and practice by generating knowledge fitting the particular circumstances in the practical setting, thereby avoiding problems of implementation of research findings due to lack of fit or lack of motivation. Action research lastingly increases the capacities of practitioners to solve problems encountered in practice.

Improving decision-making in caring for people with epilepsy and intellectual disability: an action research project.

AIM: This paper is a report of an action research study aimed at improving decision-making concerning risks in people with epilepsy and intellectual disability and the empowerment of participants to sustain this improvement. BACKGROUND: Residents of long-stay units in specialized epilepsy centres suffer severe epilepsy and are often intellectually disabled. Professional caregivers have to find a balance between risk-taking and protection, as both can have a negative effect on quality of life. Clients, their representatives and caregivers are involved in this decision-making process. METHOD: A participative action research project was conducted. Data were gathered continuously over a 22-month period in 2004-2006 by interviews, observation, written reports of meetings and personal stories. FINDINGS: The action research resulted in an ongoing process of improvement. Problems in decision-making about risk were clarified. The importance of consensus about risks and commitment to risk management between all involved became apparent. Phases in risk management were discerned and used to adjust caregiving to clients' needs and capacities Assessment of client risk became more systematic and 'steps to an individual framework for decision-making' were developed as a tool for a systematic approach. CONCLUSION: Using an action research model to improve decision-making provided the preconditions for improving decision-making and risk management and suggesting a way to improve this process in this and other institutions.

Being there: parenting the child with acute lymphoblastic leukaemia.

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.

The process and the meaning of hope for family members of traumatic coma patients in intensive care.

In this study, the authors examined the process that family members go through when they are confronted with traumatic coma. They conducted 24 semistructured interviews with 22 family members of 16 coma patients and analyzed the data using the constant comparative method as proposed by grounded theory. Hope was the most prominent theme. It can be described as keeping a possible positive outcome in mind in an uncertain situation, knowing that this outcome is unlikely to happen. Hope was found to evolve stepwise up and down, dependent on further events and information: big steps at first, smaller later on. Hope helps family members to keep going and to manage care for the patient and for each other. Family members were found to protect themselves against false or unjustified hope by seeking valid information. They alternate their moments of despair, and in their interactions they respect each other's hope.

The parents' ability to attend to the "voice of their child" with incurable cancer during the palliative phase.

OBJECTIVE: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child." METHOD: A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted. RESULTS: The "voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions. Parents who actively searched to understand their child's inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss. CONCLUSIONS: Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents', ability to cope.

Encountering the downward phase: biographical work in people with multiple sclerosis living at home.

This qualitative study examines how individuals in an advanced stage of multiple sclerosis (MS) who live at home, accommodate to their illness. The downward phase in the illness trajectory of MS often consists of a lengthy period of gradual decline. According to Corbin and Strauss's framework, accommodation is conceptualized as biographical work that refers to the actions taken to retain control over the life course and to give life meaning again. For our purpose semi-structured interviews with 22 people with MS were conducted and compared with 21 interviews with their family caregivers. The analysis consisted of fragmenting and connecting the data and involved close reading and constant comparison. The continuity of biography is at risk since body and performance failures lead to the loss of salient aspects of self. Participants interpret MS as an all-encompassing illness and emphasize the process of having to give up everything. Four case stories are described to demonstrate the complex intertwining of the biographical processes and to show the range in biographical accommodation. Some patients are capable of putting their lives back together again, while others retreat or do not consider MS a part of their lives. The unpredictable course of MS makes it impossible to give new direction to the life course.

Involvement of inpatient mental health clients in the practical training and assessment of mental health nursing students: Can it benefit clients and students?

Even though the central position of the client has been recognized in psychiatric nursing education, the client is seldom formally involved in the feedback provided to students during practical training. This research paper focuses on three questions: (1) What conditions support the gathering of meaningful client feedback to enhance the student's learning process and client's wellbeing? (2) Does the use of the practical model for client feedback lead to positive experiences, and if so, under what conditions? (3) To what extent is a client's feedback on the student's work performance, consistent with feedback from the mentor (nurse from the ward), the teacher and the student? Based on a literature review, participatory observation and contacts with experts, a practical model was developed to elicit client feedback. Using this model in two psychiatric inpatient services, clients were actively and formally involved in providing feedback to four, final year psychiatric nursing students. Clients, nurses, teachers and students were interviewed and data were analysed using a qualitative explorative research approach. Analyses revealed that client feedback becomes meaningful in a safe environment created by the psychiatric nurse. Client feedback generates a learning effect for the student and supports the student's recognition of the value and vulnerability of the psychiatric client.

Being a parent of a child with cancer throughout the end-of-life course.

PURPOSE/OBJECTIVES: To elucidate parents' experiences when caring at home for their child with incurable cancer and to show how parents give meaning to their experiences throughout the end-of-life (EOL) phase. RESEARCH APPROACH: Interpretative qualitative study. SETTING: Five academic pediatric oncology centers. PARTICIPANTS: 42 parents of 22 children with incurable cancer, cared for at home. METHODOLOGIC APPROACH: An inductive thematic analysis of single and repeated open interviews using phenomenological techniques. FINDINGS: Four EOL stages were identified: becoming aware of the inevitable death, making the child's life enjoyable, managing the change for the worse, and being with the dying child. The essence of parenting during those stages was captured by the notion of being meaningful to the child and preserving the parent-child relationship. Parents were able to cope better with the EOL phase and to sustain their parenting role because of their ability to postpone grief, enjoy their child's expressions of happiness, see the child's identity despite physical impairment, and enjoy the rewards they experienced from being there for their child. CONCLUSIONS: Parenting while losing a child brings parents to the point of an existential crisis. The child's deterioration forces parents to redefine their traditional parenting role. Although the way parents give meaning to their caregiving experience helps them cope, it can decrease their ability to acknowledge the child's needs. INTERPRETATION: Nurses can help parents to face the reality of their child's situation and redefine their role accordingly, such as by providing information and alternative perceptions that fit the child's changed needs while preserving the parent-child relationship. Attention to signals indicating stress disorders is needed.

Keeping courage during stem cell transplantation: a qualitative research.

PURPOSE: The purpose of this qualitative study was to explore how patients undergoing stem cell transplantation (SCT) keep courage and pull through this demanding therapy. METHOD: A qualitative design using a grounded theory approach was used. Data were collected by participant observation and by conducting 16 semi-structured interviews with patients who had undergone SCT and six interviews with nurses. RESULTS: Research findings provide an explanation for the process of keeping courage during SCT. In this publication we focus on the core category in that process: the writing of a positive story. To endure and give meaning to the suffering of the therapy, patients do their best to believe in a happy ending. Patients exert every effort to keep faith: they count their blessings, they protect their positive story from the assaults of negative information and threatening signals through rationalization and they do everything in their power to increase their chances of a happy ending. The positive story is most vulnerable during aplasia, when patients seem to lose both physical and mental strength. Patients feel nurses and doctors help them to muster up courage. Nurses carry patients through the hardest and most despondent moments. CONCLUSIONS: During stem cell transplantation, patients make many efforts in order to write a positive story and to keep courage. These efforts involve much more active strategies than the rather passive concept of hope suggests.

Strategies to promote adherence to antiretroviral therapy applied by Dutch HIV nurse consultants: a descriptive qualitative study.

This study describes strategies used by Dutch HIV nurse consultants to promote adherence to antiretroviral therapy (ART) and the assumptions on which these strategies were based. The study used a descriptive qualitative design with individual and focus group interviews. Individual semi-structured interviews (n = 23) focusing on adherence-supporting procedures and case-based focus groups (3 groups with 5-7 participants each) focusing on adherence strategies were held with HIV nurse consultants (n = 19). The strategies described were mainly based on experience. Theoretical principles were rarely discussed and participants seldom referred to the literature. Adherence-promoting strategies were identified for two phases: (a) before beginning ART and (b) during follow-up care while on ART. Strategies that were not used in one specific phase were categorized under "all phases." Data yielded useful ideas for the care of HIV-infected patients, and findings can be applied to the development and use of adherence-promoting strategies.

The role of HIV nursing consultants in the care of HIV-infected patients in Dutch hospital outpatient clinics.

OBJECTIVE: In the Netherlands HIV nursing consultants have participated in HIV-care since 1985; their profession has changed with developments in HIV-treatment over time. The study goal was to gather information about their role in HIV-care and to provide an useful example to other (HIV-)care settings over the world. METHODS: Interviews were held with HIV nursing consultants from all AIDS treatment centres. Descriptive analyses and statistical tests to detect differences between centres categorized by care model (parallel/unstructured/alternating), were performed. RESULTS: 58% centres perform substitution of care. HIV nursing consultants see almost all patients at least once a year and see all patients when treatment is started/altered. The frequency of consultations for HIV-patients in stable condition varies, 2-4 times a year. Substitution leads to a slight, non-significant decrease in number of consultations. Adherence support is provided at the start of and during treatment. Regular patient discussions are common. All respondents are acquainted with the guidelines. Detailed knowledge of the adherence issues is limited: 58.3% had read the adherence chapter. CONCLUSION: Substitution of care model is an appropriate and effective method for the management of HIV-infected patients. PRACTICE IMPLICATIONS: Further development of and research into this new role of HIV nurse consultants is appropriate.