The theory of a co-creative process in advanced palliative home care nursing encounters: A qualitative deductive approach over time.

AIMS AND OBJECTIVES: The aim of this study was to test the theoretical conceptualization of the co-creative process in home care nursing encounters over time. METHOD AND DESIGN: This was a multiple case study with a deductive analysis of qualitative data over time, using interviews and observations collected from three cases. RESULTS: The co-creative process was complex and contained main, sub- and micro-processes. Time was important and valuable, giving the patient and relatives space to adjust the process to their own pace. Some processes were worked on more intensively in accordance with the patients' and relatives' needs, and these are considered the main-process. The further developed theory of the co-creative process and its main, sub- and microprocesses can be understood as a concretization of how good nursing care can be performed within caring relationships in the context of advanced palliative home care.

Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care.

AIM: To adapt the Family Involvement and Alienation Questionnaire (FIAQ) for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability. BACKGROUND: Involvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed. DESIGN: A psychometric evaluation study, with a cross-sectional design. METHOD: The content validity of the FIAQ was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used. RESULTS: The content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the FIAQ (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability. CONCLUSION: The study provides evidence that the FIAQ (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care.

Nurses' experience of the transfer of ICU patients to general wards: A great responsibility and a huge challenge.

AIMS AND OBJECTIVES: The aim of the study was to describe nurses' experiences of patients' transition from ICUs to general wards and their suggestions for improvements. BACKGROUND: In the ICU, the most seriously ill patients with life-threatening conditions and multiple organ dysfunction syndromes are cared for and carefully monitored by specially trained professionals using advanced techniques for the prevention of failure of vital functions. The transfer of ICU patients to general wards means a change from a high to a lower level, including the loss of one-to-one nursing and a reduction of visible monitoring equipment and general close attention. DESIGN: A qualitative descriptive design. METHODS: Eight nurses from three different inpatient units in Norway, five from a university hospital and three from a local hospital were selected through a convenience sample. Interviews with open questions were conducted, and qualitative content analysis was used to explore the data. RESULTS: Nurses' experiences were described in one main category: ICU patients' transition-a great responsibility and a huge challenge, and two generic categories: (i) a challenging transition for nurses, patients and relatives and (ii) dialogue and competencies as tools for improvement, with six subcategories. CONCLUSION: A number of factors affected patient care, such as poor cooperation, communication, reporting, expertise and clinical gaze. It was clear that the general wards had major challenges, and a number of improvements were suggested. RELEVANCE TO CLINICAL PRACTICE: This study shows that there is still a gap between the ICU and general wards and that nurses continue to struggle with this. It is therefore important that the managers responsible for the quality of care together with the professionals take seriously the criticism in the present and previous studies and work towards a safe transition for patients.

An isolated involvement in mental health care - experiences of parents of young adults.

AIMS AND OBJECTIVES: To explore parents' involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of 'Involvement in the light-Involvement in the dark' in the context of mental health care. BACKGROUND: Mental illness has increased among young people in high-income countries, and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken-for-granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility. DESIGN: A secondary descriptive design with a deductive content analysis was used. METHODS: Ten parents who have a son or daughter with long-term mental illness (aged 18-25 years) were interviewed. The deductive analysis was based on the caring theory of 'Involvement in the light-Involvement in the dark'. RESULTS: The results are described using the following concepts in the theory: 'Knowing', 'Doing', 'Being' and 'Attitude of the health professionals'. The result are to a great extent consistent with the 'Involvement in the dark' metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. The theory's transferability is strengthened to the mental health care context. CONCLUSIONS: Parents have a considerable need for knowledge that can enable them to choose how they should act (be) and what they should do, in order to help and support their child. RELEVANCE TO CLINICAL PRACTICE: Since the patient, the family members and the professionals are mutually dependent, it is important to make use of each other's knowledge in a partnership to achieve a common caring strategy.

Health-related quality of life--from the perspective of mothers and fathers of adult children suffering from long-term mental disorders.

There is a lack of studies on mothers' and fathers' experiences of Health-Related Quality of Life (HRQOL) associated with caregiving of adult children suffering from mental disorder. A cross-sectional study was therefore carried out with 108 mothers and 43 fathers. Data were collected by means of the Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Family Involvement and Alienation Questionnaire (FIAQ) and the Burden Assessment Scale (BAS). Mothers' HRQOL was affected more than fathers' and lower compared to Swedish age related norms. HRQOL was predominantly related to ratings on HADS and BAS.

Transitions in the communication experiences of tracheostomised patients in intensive care: a qualitative descriptive study.

AIMS AND OBJECTIVES: To describe how tracheostomised patients in intensive care experience acts of communication and to better understand their experiences in the context of the transitions theory. BACKGROUND: Waking up in an intensive care unit unable to speak because of mechanical ventilation can be challenging. Communication aids are available, but patients still report difficulties communicating. Investigating how mechanically ventilated patients experience communication in the context of the transitions theory might elucidate new ways of supporting them during their transitions while being ventilated. DESIGN: A qualitative, descriptive design. METHODS: Eleven patients who had previously been tracheostomised in an intensive care unit were included in this quality improvement project conducted in a university hospital in Norway. Participants were tracheostomised from 3-27 days. Semistructured interviews were conducted from June 2013-August 2013, 3-18 months after hospital discharge. Transcripts were analysed using inductive content analysis. RESULTS: Participants reported a great diversity of emotions and experiences attempting to communicate while being tracheostomised. One overarching theme emerging from the analysis was the 'Experience of caring and understanding despite having uncomfortable feelings due to troublesome communication.' The theme consists of three categories. The category 'Emotionally challenging' shows that patients struggled initially. With time, their coping improved, as revealed in the category 'The experience changes with time.' Despite difficulties, participants described positive experiences, as shown in the category 'Successful communication.' CONCLUSION: The importance of patients experiencing caring and understanding despite their difficult situation constitutes the core finding. The findings suggest that participants went through different transitions. Some reached the end of their transition, experiencing increased stability. RELEVANCE TO CLINICAL PRACTICE: Despite challenges with communication, participants reported that caring and safety provided by health care professionals were significant experiences. They viewed nonverbal communication as being very important.

"The unpredictable death"-The last year of life for patients with advanced COPD: Relatives' stories.

OBJECTIVE: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives. METHOD: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis. RESULT: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable. SIGNIFICANCE OF RESULTS: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

Parents' experiences of their premature infants' transportation from a university hospital NICU to the NICU at two local hospitals.

The aim of this study was to describe how the parents of premature infants experience the transportation of their baby from the neonatal intensive care unit at a university hospital (NICU-U) to such a unit at a local hospital (NICU-L). This descriptive qualitative study comprises interviews with nine sets of parents and two mothers. The qualitative content analysis resulted in one theme: living in uncertainty about whether the baby will survive, and three categories: being distanced from the baby; fearing that something would happen to the baby during transportation; and experiencing closeness to the baby. The results also revealed that the parents experienced developmental, situational and health-illness transitions.

Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities.

OBJECTIVE: To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service. METHODS: Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation. RESULTS: Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received. SIGNIFICANCE OF THE RESEARCH: Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

Conceptions of mental health care--from the perspective of parents' of adult children suffering from mental illness.

The aim of this study was to describe parents' conceptions of the mental health care provided to adult children suffering from mental illness. Data were collected using qualitative research interviews with a purposive sample of sixteen mothers and ten fathers. Phenomenographic analysis was used to identify conceptions and formulate descriptive categories. The first category, questioning the availability of care, describes mental health care as being unequal in terms of accessibility and lacking in continuity. The second category, disapproval of parental exclusion, illustrates conceptions that mental healthcare professionals disregard parents and do not provide them with adequate information. The third category, questioning the quality of care, encompasses conceptions of lack of trust in the professionals' competence, an unsatisfactory environment as well as inadequate cooperation with other healthcare providers and authorities. Positive aspects, such as being seen and confirmed, were mentioned as valuable by the parents.

Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters.

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach.

Effects of a support group programme for patients with life-threatening illness during ongoing palliative care.

BACKGROUND: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. AIM: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care. DESIGN: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. SETTINGS/PARTICIPANTS: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons. RESULTS: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes. CONCLUSIONS: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

Guilt and shame--a semantic concept analysis of two concepts related to palliative care.

BACKGROUND: The theoretical viewpoint of the study was based on the fundamental motive in caring science, the suffering person and his/her health and life situation, which according to the philosophy of palliative care also includes the next of kin. The latter often wish to participate in the care of their loved ones and it is thus important for them to be able to make decisions that can generate a meaningful participation. Unfulfilled obligations or wrong decisions, concerning their dying relative, can result in experiences of guilt and shame in relation to the care of the loved one. A semantic concept analysis can provide a deeper understanding of these concepts and create a deeper insight into what the concepts mean for the individual. AIM: The aim of the study was to elucidate the meaning of and the distinction between the concepts of guilt and shame. METHODS: Semantic concept analysis based on Koort and Eriksson. FINDINGS: The findings show that guilt and shame are two separate concepts. Guilt contains meaning dimensions of being the cause of and sin. Shame contains meaning dimensions of something that gives rise to shame and ability to experience shame. The synonyms for each concept do not overlap each other. CONCLUSION: The semantic analysis creates an understanding of the concepts ontologically and provides a basis for theoretical, contextual and clinical understanding and development.

A lonely life journey bordered with struggle: being a sibling of an individual with psychosis.

Research suggests that siblings of individuals with severe mental illness are affected by the situation and that health care services seem to be inadequate in meeting their needs for support. The aim of this study is to explore how siblings of individuals with a psychotic illness, and who have participated in a support group, experience their situation. Thirteen individuals participated in focus group interviews, which were analyzed by inductive content analysis. The findings were interpreted into an overall single theme: A lonely life journey bordered with struggle. This theme consists of three categories: facing existential thoughts, facing ambiguity in approach and engagement, and facing disparate attitudes and expectations.

Identification and documentation of persons being in palliative phase regardless of age, diagnosis and places of care, and their use of a sitting service at the end of life.

BACKGROUND: Older persons and persons with diseases other than cancer are often discriminated against when applying for palliative care despite growing numbers of both older persons and individuals with chronic diseases. An intention for palliative care in Sweden is that all persons in the final stage of life, irrespective of age, domicile, diagnosis, and care place shall have access to palliative care on equal terms. One way to support these persons in final stage of life and their relatives is to offer sitting service. AIMS: To describe individuals who were identified and documented as being in a palliative phase in a Swedish municipality, with respect to demographics, use of a sitting service, continuity of care in the last month of life and the place of death. A second aim was to describe and compare the groups who received/did not receive sitting services related to the aforementioned variables. METHOD: Retrospective data from nursing records and palliative care identification forms were analyzed with descriptive and analytic statistical methods. FINDINGS: Among individuals deceased during 2007, 51% were identified and documented as being in palliative phase. The majority was older people (mean 83 years) with a noncancer diagnosis (58%). Twenty-eight individuals (16%) had received a sitting service between 8 and 249 hours (one extreme value = 2211). It is indicated that sitting service significantly increased the possibility of dying at home (p = 0.00004), but did not affect how often the place of care changed during the last month of life. LIMITATION: A small sample from a Swedish context must be considered. CONCLUSION: These results can be related to an awareness in the municipality that led to adopting the concept of palliative care as not only for those with a cancer diagnosis.

Fathers' everyday experiences of having an adult child who suffers from long-term mental illness.

The purpose of this study is to describe the everyday life experiences of fathers of adult children who have various forms of long-term mental illness. Ten fathers were interviewed. Content analysis revealed one main theme: Maintaining a strong façade while balancing on a thin line, and two sub-themes: (1) A constant struggle and (2) A feeling of powerlessness. The fathers demonstrated great engagement and good will to participate in their child's life. A sense of powerlessness and frustration at not having or being allowed freedom of action emerged. Cooperation between children, parents, the care service providers, and the authorities could increase the parents' abilities to provide adequate support to the child as well as helping them to understand and make the incomprehensible manageable.

Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness.

BACKGROUND: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving. AIM: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness. DESIGN: Correlational. SETTING/PARTICIPANTS: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability. RESULTS: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9. CONCLUSIONS: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture.

Life is back to normal and yet not - partners' and patient's experiences of life of the first year after colorectal cancer surgery.

AIM: To describe the experience of life the first year after surgery from the perspective of persons treated for colorectal cancer and their partners. BACKGROUND: Colorectal cancer is a common cancer form, and treatment can cause unpleasant side effects such as sexual dysfunction and bowel problems. Partners struggle to keep family life normal and provide support. Little is known about couples' experiences a year after treatment for colorectal cancer. DESIGN: Qualitative descriptive. METHODS: Individual semi-structured interviews with 13 persons treated for colorectal cancer and their partners, a total of 26 participants. RESULTS: One theme was identified in the study; 'Life is back to normal and yet not': participants described living a normal but different life than before. Three subthemes were identified; 'Life has a shadow of death', 'The treated body sets the rules' and 'To share or not share the illness'. CONCLUSIONS: Findings showed that both the patients' and their partners' lives were influenced by uncertainty and the condition of the patient. Attitudes varied towards sharing the illness. It was found that information needs varied both within and between couples. A future challenge to healthcare personnel is the obligation to meet the needs of both patients and their partners on the illness trajectory and recovery after treatment for colorectal cancer. RELEVANCE TO CLINICAL PRACTICE: Findings enhance the understanding of the impact of colorectal cancer on both patients and partners. Healthcare personnel need to assess both the patient's and partner's need for information, support and assistance. Support groups could be an effective tool for providing information, communication and support. Future studies are needed to evaluate such groups.

Shifting life rhythms: Couples' stories about living together when one spouse has advanced chronic obstructive pulmonary disease.

AIM: This study examines couples' experiences of living together when one partner has advanced chronic obstructive pulmonary disease (COPD). METHOD: Repeated qualitative interviews with four couples over an eight-month period, where one spouse in each couple suffered from advanced COPD. The final dataset comprised 19 interviews. A phenomenological-hermeneutical method was used to interpret the interview text. FINDINGS: One main theme, "living with the disease and one's spouse in a new and changeable life rhythm", emerged from three subthemes: "living with uncertainty", "living in a changed intimate relationship", and "finding new ways of living together". A mutual sense of companionship between the spouses facilitated their chances of reshaping their relationship and adapting it to the new life rhythm required by everyday life with the disease. CONCLUSION: The healthy spouse had major responsibility for the health of their sick spouse. Awareness of the couple's own conceptions and knowledge of health and illness is central to person-focused care, as is awareness of what values are important to them when restructuring their everyday life.

Meeting needs of family members of persons with life-threatening illness: a support group program during ongoing palliative care.

OBJECTIVE: The aim of the study was to describe family members' experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness. METHOD: The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis. RESULTS: The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere. SIGNIFICANCE OF RESULTS: The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.