'I am still valuable' - A qualitative study of incurable cancer patients coping in hospice care.

BACKGROUND: Knowledge of the experiences of coping in patients with incurable cancer is essential for high-quality palliative and end-of-life care. AIM AND OBJECTIVE: To describe the coping experiences of patients with incurable cancer in hospice care to better develop patient-centred care. METHODS: The data for this qualitative study were collected through semi structured interviews, with patients with incurable cancer in hospice care (N = 20) and analysed with inductive content analysis. Ethical and organisational approvals were obtained, and the participants received both verbal and written information before consenting to participate. RESULTS: The patients' coping was enhanced with their involvement in treatment-related decisions. Valuing day-to-day living and coping with emotional stressors helped them accept their own life situations. Accepting their increasing fragility was enhanced by their self-reappraisal. The patients found security in the possibility of receiving support when they needed it. Although the ordinariness of dying in hospice care settings was sometimes too much to bear, they understood dying to be a part of the natural cycle of life. They questioned the responsiveness of healthcare services because they felt that they were not always heard. STUDY LIMITATIONS: Because this study was limited to a specific population of cancer patients in hospice care, the results might not be generalised to other patient groups with chronic diseases or other palliative care settings. CONCLUSIONS: The experiences of patients in hospice care of coping with incurable cancer were reminiscent of the common coping process descriptions. Surprisingly, even though participants voiced that they had accepted their situation, dying itself was something they did not find crucial to discuss. The crucial aspects - without being in denial - dealt more with focusing on positive thinking and facing life.

The marital relationship and health-related quality of life of prostate cancer patients and their spouses: A prospective, longitudinal study.

AIMS: This study aims to measure any changes in the marital relationship during the first year after a diagnosis of prostate cancer, identify the demographic characteristics that influenced such changes, and measure changes related to health-related quality of life (HRQoL). BACKGROUND: Knowledge is limited on the impact of a diagnosis of prostate cancer on the marital relationship and HRQoL of patients and their spouses. DESIGN: A 1-year longitudinal study. METHODS: Data were collected from five Finnish hospitals between October 2013 and January 2017. Of the 350 recruited couples (N = 700), 179 patients and 166 spouses completed the Marital Questionnaire and the RAND 36-Item Health Survey 1 year after diagnosis. RESULTS: No major changes were found in the marital relationship during the follow-up period. The spouses reported statistically significant changes in their marital relationships, but the patients did not. Furthermore, changes in the marital relationship were not associated with the patients' HRQoL. Among spouses, emotional well-being was associated with changes in the marital relationship. CONCLUSION: The marital relationship was relevant in terms of the spouses' HRQoL during the first year after a diagnosis of prostate cancer. Nurses and other healthcare providers should assess counselling and support provided to spouses individually.

Differences in Home-Care Services in Finland for Older Adults between 2012 and 2019 - A Developmental Evaluation Study.

This study aimed to evaluate differences in client-centered approaches to home-care services for older adults from the perspectives of nurses and service managers in Finland. The research method used developmental evaluation. Developmental activities for client-centered services were implemented in three home-care organizations between 2012 and 2019. Home care nurses and service managers were interviewed individually and in groups at the beginning and end of the development process. Then, four categories of differences enabling operating models in client-centered care were identified: modernized client-centered service patterns, comprehensive service coordination, digital service environments technology utilization, and changing human resources. This study found a positive trend in adopting a client-centered approach and technology in home care services. In the implementation of home care practices, innovations for client-centered implementation of homecare should consider the renewal of service models, development of case management, and development and utilization of technology in homecare operating environments.

Online follow-up with a mobile device improves incurable cancer patients' coping - A qualitative study.

PURPOSE: To examine patients' experiences regarding the impact of support given by a mobile application on their ability to cope with incurable cancer. METHOD: The qualitative research data of semi-structured, face-to-face interviews with 20 adult patients suffering from incurable cancer during disease-controlling chemotherapy or palliative care were analysed with inductive content analysis. RESULTS: The majority of the interviewees viewed the mobile application as helpful for monitoring relevant symptoms and coping with the disease. The patients' sense of security was increased by their ability to contact the clinic at all times. As a communication channel, the mobile application was seen as more convenient than the telephone, and it provided a sense of freedom for the patients as contacting the clinic was not tied to time or place. The patients also experienced as well increased involvement with their own care and had a sense of staying abreast with their treatment. A minority of the interviewees reported that there was a certain disease-centredness in using the mobile application. CONCLUSIONS: The present study extends the knowledge of patients using a mobile application as a part of their cancer care and assesses of the acceptance of using this application to provide supportive care. The patients reported that they were better able to cope with the disease when using the mobile application, although some described it as being too disease centred. Overall, this study indicates that the patients' sense of security and freedom increased when using the mobile application.

A client-centered approach in home care for older persons - an integrative review.

OBJECTIVE: To describe and synthesize client-centered care and service in home care for older persons. METHODS: The study was an integrative review using the guidelines for literature reviews by the Joanna Briggs Institute. The research process followed the Whittemore and Knafl framework and PRISMA toolkit in the selection of eligible articles. The CINAHL, Medline, Scopus, Web of Science and Social Sciences abstracts were searched for articles published between January 2007 and May 2020 according to previously designed search strategies. In total, 24 articles were deemed relevant for an analysis using a thematic analysis. RESULTS: The analysis resulted in four themes with sub-themes which revealed that client-centered care and service in home care consist of: 1) Clients' involvement in their own care; self-care, decision-making, satisfactory daily life, 2) Family members' and care partners' participation in care; family members' and care partners' commitment to care, family members' and care partners' competence in care, 3) Communication and co-operation; communication models, empowerment, partnership, and 4) Evidence-based service competence; delivery and organization of services, implementation of services, versatile clinical skills, quality outcomes and personnel wellbeing. CONCLUSIONS: According to the results, achieving client-centered care and service in home care requires the realization of all of the above aspects. The practice of nursing must better identify all dimensions of client-centered care and take these into account in the delivery of home care services. KEY POINTS Client-centeredness is a fundamental value and the basis of nursing and care in home care provided for older persons This paper: deepens and structures the concept of client-centered care in the context of home care. assists professionals to understand the factors behind client-centered care within the home care environment. provides deeper understanding of the roles of the older person, family members, and the service system in developing client-centered services in home care for older persons.

Family composition and living arrangements-Cross-sectional study on family involvement to self-managed rehabilitation of people with coronary artery disease.

Aim: To describe the family composition and living arrangements of persons diagnosed with coronary artery disease and those relationships to family involvement in self-managed rehabilitation. Design: A cross-sectional study. Methods: Data were collected with postal questionnaire from persons diagnosed with coronary artery disease (CAD) by using the Family Involvement in Rehabilitation (FIRE) scale. It measures family members' promotion of patients' rehabilitation and issues encumbering rehabilitation in family. Statistical methods were used to analyse the data. Results: Patients' gender and having children in the family were predictors of issues encumbering rehabilitation in the family. But when examining living arrangements, patients who lived with a spouse or underage children had a better environment for recovery than those who lived alone or with adult children. More attention should be paid to targeting appropriate support for persons with coronary artery disease and their family members during the rehabilitation phase.

Volunteer experiences of wartime nursing in Finland during World War II.

The aim of the research was to analyse the experience of medical volunteers during World War II in the context of nursing history. Oral history data used in the study consisted of 30 interviews with Finnish wartime medical volunteers, known locally as Lottas. Interview data were analysed both thematically and by using the oral history method. Based on the analysis, the Lottas' experiences during wartime nursing became the leitmotif of this study. The main themes consisted of the following: 'taking care of wounded and ill patients', 'taking care of dying and deceased patients', 'taking care of mentally ill and psychoactive substance-addicted patients' and 'confronting ethical and role dilemmas in nursing'. The interview results showed that the Lottas' duties were sometimes more demanding than basic nursing tasks and that their education was not adequate for the challenges that they faced. In this paper, the terms Lotta, medical Lotta or medical volunteer are used interchangeably and refer to people who were assigned to medical volunteer tasks, regardless of whether or not they were trained. It also includes junior members of the organisation who served as medical volunteers as minors, with special permission.

Home care services for older persons. The views of older persons and family members: A realistic evaluation.

AIMS AND OBJECTIVES: The aim of the present study was to evaluate client-centred care in older persons' home care services from the perspective of older persons and family members. The following research questions were addressed: How do home care older persons and family members perceive client-centered care in their home care services? What kind of social mechanisms are realized when home care services are implemented? BACKGROUND: Several older persons are dependent on home care services for their continued living at home. The fundamental value and best practice of home care is the client-centred care in services. METHOD: The research method was realistic evaluation. Six families with six older person clients of home care and seven family members were interviewed. In the present study, the interview contained three themes (1) content and services of the home care, (2) activities and practices of the home care and (3) development of client centredness in home care. Research data were analysed with deductive content analysis. RESULTS: Home care service should be based on analysis of older person's individual life situation. Social mechanisms such as interaction, participation, trust and adaptation are realised in implementation of home care services. The most significant outcomes of client-centred service were timely availability of services, safe care relationship and continuity of care, ability to influence on own services and appropriate price of services. Significant factors in quality of service were unhurriedness, kindness and competence of professionals. IMPLICATION FOR PRACTICE: Social mechanisms, such as participation, trust, adaptation and interaction, should be taken in account in care relationship in home care. Client centredness and methods for evaluating it should be defined in practical work. Client-centeredness competence should also be included in all stages of professional education of home care.

Caring Interaction with stroke survivors' family members-Family members' and nurses' perspectives.

AIMS AND OBJECTIVES: To examine emotional support given by nurses to family members in the acute phase after a working-aged patient's stroke based on nurses' and family members' experiences. BACKGROUND: The number of patients with stroke is increasing globally. There is a lack of knowledge about the emotional support of family members during the acute phase of working-aged stroke victims. To be able to provide high-quality nursing care during this phase, we need information about emotional support from family members' and nurses' perspective. METHOD: Using a Glaserian grounded theory approach, the study was conducted using open interviews with family members and group interviews with nurses. Data were collected between 2012-2013. RESULTS: In this study, emotional support is identified as Caring Interaction. The changed life situation and diverse feelings aroused by the stroke are the starting point of providing emotional support to family members. It is important that the nurses notice family members' need for support at the right time, use their intuition and respond appropriately. CONCLUSIONS: The patient's family members are important when providing holistic nursing care for the whole family. As well as providing emotional support, high-quality nursing interventions enhance the care of family members. This study provides an explanation of the interaction process between family members and nurses. It helps family members and nurses to better understand each other. Although the data were collected 5 years ago, it is assumed that the interaction between family members and nurses has not changed during these years remarkably. RELEVANCE TO CLINICAL PRACTICE: According to the experiences of family members and nurses who participated in this research, emotional support manifests in Caring Interaction. Being aware of body language and behaviour of family members, nurses can better interact with them.

Health-related quality of life in patients with prostate cancer and their spouses: Results from a longitudinal study.

PURPOSE: The purpose of this study was to explore changes in HRQoL (health-related quality of life) and identify the associated factors in patients with prostate cancer and their spouses during the year following their diagnosis of prostate cancer. METHODS: The longitudinal study design consisted of 179 patients and 166 spouses, using discretionary sampling, at five Finnish central hospitals. Participants completed a self-reported RAND-36-Item Health Survey at three time-points: time of diagnosis and 6 and 12 months later. Changes in HRQoL were analysed using descriptive statistics and non-parametric tests. Linear mixed-effects models were used to identify the factors associated with the changes in HRQoL in the patients and their spouses. RESULTS: On average, the HRQoL of patients with prostate cancer changed in physical functioning (p = 0.015), emotional well-being (p = 0.029) and general health (p = 0.038) were statistically significant over the 12-month study period. In spouses, statistically significant changes in HRQoL were not observed. Interaction between the age of participants and changes in HRQoL were statistically significant. CONCLUSIONS: Findings in this study suggest that interventions aimed at improving the HRQoL of patients should support a few different dimensions of HRQoL for the patients themselves than for their spouses. Nurses should pay more attention to elderly couples.

The Coping and Support Needs of Incurable Cancer Patients.

The purposes of this study were to describe the coping processes and support needs of patients with incurable cancer. The study was conducted as a qualitative study. The research data were gathered by conducting thematic interviews with outpatients with incurable cancer (n = 16) and analyzed by means of inductive content analysis. The results of the study indicate that the lives of patients were temporarily interrupted by the incurable illness. A sympathetic family was perceived as strength, and after the initial shock, the patients began to rebuild their lives. They had conflicting thoughts about cancer treatment. The patients felt that they were courageous, but fragile, in the face of their illness. They prepared for the approaching death by discussing the issue with their family members and friends and planning their own palliative care. The patients expected to be approached holistically. The results of this study are applicable in circumstances in which health care professionals are preparing to approach an incurable cancer patient as an individual, instead of simply as a medical case. The results can also be utilized to develop evidence-based, family-oriented palliative nursing for cancer patients and to better identify the expectations and needs of the patients while receiving treatment.

Family involvement in rehabilitation: Coronary artery disease-patients' perspectives.

AIMS AND OBJECTIVES: To describe coronary artery disease patients' perceptions of family involvement in rehabilitation and the connection between background factors and family involvement. BACKGROUND: Coronary artery disease patients' hospital stays can be very concise. Family members can support rehabilitation, but many challenges can emerge. There is a need to nurture patients and family members in an individual way and to recognise their concerns. More accurate patient education should be available for patients and their family members. DESIGN: This study is a descriptive cross-sectional study. METHODS: Data were collected from patients with coronary artery disease at least 6 weeks after discharge from hospital (n = 169) with a postal questionnaire. The Family Involvement in Rehabilitation (FIRE) scale measures family members' promotion of patients' rehabilitation and issues encumbering rehabilitation in family. The data have been analysed with statistical methods. Both parametric and nonparametric tests were used to evaluate group differences. RESULTS: Patients with coronary artery disease perceived that family promotes their rehabilitation significantly. Respondents also perceived challenges at home. Family relations before hospitalisation were related to all subareas of family promoting rehabilitation and one subarea of issues encumbering rehabilitation in family. Patients with symptoms at rest also had more encumbrance on their rehabilitation. Patients who had undergone coronary artery bypass surgery perceived more challenges than percutaneous coronary intervention (PCI) patients in many subareas of issues encumbering rehabilitation in family. CONCLUSIONS: Family relations prior to illness and the rigour of heart symptoms are significantly relevant to challenges that can occur between patient and their family members. RELEVANCE TO CLINICAL PRACTICE: Healthcare staff need to pay attention to coronary artery disease patients' individual situation, and patient education should be more family-centred. In the future, it would be noteworthy to collect more data from family members of patients with coronary artery disease and to find out their perceptions of family involvement.

Patients' Interpersonal Communication Experiences in the Context of Type 2 Diabetes Care.

The aim of our study is to determine the relational communication characteristics of professional-patient communication situations that have either facilitated or impeded patients' self-management. Conducted from the perspective of Finnish patients in the context of type 2 diabetes care, we used as our research methods an open e-survey and semistructured interviews. Data were analyzed using inductive qualitative content analysis. The critical incident technique was utilized throughout in all these methods. The results show that both positive and negative experiences described by patients were connected to four multidimensional relational communication characteristics: (a) building trust in the other party in the professional-patient relationship, (b) willingness to communicate, (c) emotional presence, and (d) appropriateness. Although the findings support the recommendations of earlier studies concerning individually tailored patient-centered care, acknowledging the characteristics in question can be used as a communication frame for constructing significant care relationships from the perspective of patients' self-management.

Marital relationship and health-related quality of life of patients with prostate cancer and their spouses: A longitudinal clinical study.

AIMS AND OBJECTIVES: To examine changes in the marital relationship 6 months after the diagnosis and the effects of these changes on the health-related quality of life of the patients with prostate cancer and their spouses. BACKGROUND: There is limited knowledge on the impact of a diagnosis of prostate cancer on the marital relationship and health-related quality of life of patients and their spouses. DESIGN: Survey with longitudinal descriptive and comparative elements. METHODS: Of 350 recruited couples (N = 700), 186 couples (n = 372) completed the Marital Questionnaire and RAND 36-Item Health Survey at the two measurement points: time of diagnosis and 6 months later. Changes in the marital relationship were analysed statistically using descriptive statistics and nonparametric tests. The influence of changes in the marital relationship on health-related quality of life was evaluated using linear regression analyses. RESULTS: The patients and their spouses reported lower marital satisfaction 6 months after the diagnosis than at the time of diagnosis. The summary score for marital satisfaction of the spouses significantly decreased during the follow-up period. In contrast, decreasing changes in the marital relationship of the patients were not statistically significant. Furthermore, the marital relationship of the patients and their spouses was not statistically significantly associated with changes in the health-related quality of life of the patients and their spouses within 6 months. CONCLUSIONS: The results of this study add to current knowledge of the marital relationship of patients with prostate cancer and their spouses. The spouses reported that their marital relationship had suffered, whereas the patients reported that the marital relationship remained unchanged. RELEVANCE TO CLINICAL PRACTICE: These findings may be useful when counselling of patients with prostate cancer and their spouses.

Giving birth on our own terms-Women's experience of childbirth at home.

BACKGROUND: home births are quite rare and are not supported as part of mainstream health care services in most European countries. Women who choose home as the place of birth often do so because maternity services in hospitals do not offer the options that they want. The aim of the present study is to describe women's experiences of giving birth at home and to produce a comprehensive structure of meaning regarding giving birth at home. DESIGN: a phenomenological study based on analysis of open-interview transcripts using Colaizzi's approach. PARTICIPANTS: women who gave birth at home FINDINGS: women who have given birth at home experience having control over their own body, the care they are given, and the practical arrangements surrounding the birth. However, they also experience negative attitudes from other people about their decision to give birth at home, and challenges because of worries about how they and their baby will cope. During the birth women feel a sense of connection to their own body, which they trust to tell them what to do. They experience great happiness on successfully giving birth and feel connected to nature and the circle of life. Being able to celebrate with family members and be pampered by them after the birth made the women feel 'like queens'. CONCLUSIONS: women's experience of childbirth at home is one of having control over the birthing process and its environment. The main challenge is exposure to negative attitudes from others, including health care professionals. Overall, the experience was full of happiness and good feelings. We conclude that more attention should be paid to the quality of birth experiences and women's individual needs and wishes within maternity care provision.