Being met as a person and not as a diagnosis - Meanings of healthcare encounters for women with chronic obstructive pulmonary disease stage III or IV.

Our study seeks to elucidate meanings of healthcare encounters for women with chronic obstructive pulmonary disease stage III or IV. We conducted 12 narrative interviews which were analyzed using phenomenological hermeneutic interpretation. Our analysis revealed one theme; being met as a person and not as a diagnosis with three subthemes: getting sufficient time and feeling involved in care; fulfillment of personal needs; and experiencing disrespect and injustice. We found that meanings of healthcare encounters center on the expectation of being seen as a person. Feeling disrespected and injust leaves women unsupported and could pose serious health risks.

Experiences of transitions in daily life for parents of children with type 1 diabetes: An interpretive description.

In this study, we aimed to explore and describe the experiences of parents whose children have been diagnosed with type 1 diabetes (T1D) and the transitions of daily life. T1D is a long-term illness, and parents of children with T1D often become informal caregivers and face many challenges in their daily lives. A qualitative study design, in line with interpretive description, was used, and a sample of 10 parents of children with T1D participated in individual interviews. The COnsolidated criteria for REporting Qualitative Research (COREQ) checklist was used. The interviews were analyzed using interpretive descriptions. The analysis resulted in one main theme: "The realization of having taken 'daily life' for granted and having to accept a new reality," with six themes showing different transitions in the parents' daily lives, including transitions in daily life patterns, parenthood, in relationships with family and friends, relationships with school personnel, relationships with healthcare personnel, and in knowledge and learning about the illness. Parents experienced multifaceted changes that affected their lives, as shown by the six identified transitions. Being the parent of a child with T1D implies a new reality with complex, irreversible life changes that may be unknown and unspoken to healthcare professionals and society. Healthcare systems, school personnel, and society at large need to improve their knowledge regarding parents' situations to better support them in embracing a new reality for themselves and their children long after the onset of T1D.

Living with an ever-present breathlessness: Women's experiences of living with chronic obstructive pulmonary disease stage III or IV.

BACKGROUND: Living with chronic obstructive pulmonary disease stage III or IV has a major impact on a person's everyday life. This qualitative study focuses on women with chronic obstructive pulmonary disease stage III or IV. AIM: The aim of this study was to describe women's experiences of living with chronic obstructive pulmonary disease stage III or IV. METHOD: A purposive sample of fifteen women with chronic obstructive pulmonary disease stage III or IV participated in the study. Data were collected through individual semi-structured interviews that were subjected to qualitative content analysis. FINDINGS: One theme was identified, stabilizing an ever-present breathlessness by restoring strength, and three categories are as follows: managing a restricted everyday life as an expert of their illness, being afraid of contracting infections leading to suffocation and suffering and importance of continuous help and support from significant others and digital media. Breathlessness restricted women with chronic obstructive pulmonary disease, living with a body they have to wait for. Managing everyday life was adapted to their limited abilities and energy. This required detailed planning, good knowledge of their breathing and body. Women were afraid of contracting life-threatening infections that caused suffering, especially COVID-19. The fear leads to isolation and digital media was described as an important means of communication. Significant others gave support and help that was practical and emotional. Women with chronic obstructive pulmonary disease experienced lack of continuous help and support from healthcare professionals. CONCLUSION: Stabilizing an ever-present breathlessness by restoring strength required women with chronic obstructive pulmonary disease stage III or IV to conduct detailed planning to manage everyday life. Being afraid of contracting infections and the consequences of suffocation had increased since the pandemic COVID-19 outbreak, which led to self-isolation and an inactive everyday life. To get help, support and socialize, women used digital media.

'The same care providers over time who make individual adjustments and have competence' Older South Sami People in Sweden's expectations of home nursing care.

This study is part of a larger research project designed to examine the view of home nursing care from the perspective of older South Sami people in Sweden. In the present study, we present findings from the point of view of their expectations of home nursing care. The Sami are an indigenous population living in northern Sweden, Norway, Finland and the Kola Peninsula, and consist of different Sami people, of which the South Sami population is one. This population consists of approximately 2000 persons living in the central regions of Sweden and Norway. Fifty-six older South Sami people participated in the study. Semi-structured interviews were conducted over the telephone and were analysed using latent content analysis. The main findings show how older South Sami people's expectation for home nursing care contains the same care providers over time, individual adjustments and competent care providers and do not differ from the general Swedish population. Interpersonal interaction is a hallmark of nursing care and other healthcare disciplines. Ideally, interpersonal care is achieved when individual care providers have few care receivers, which promote continuity in care, individual adjustments based on the care receivers individual needs and care providers with professional and relational competence.

'Contradictions in having care providers with a South Sami background who speak South Sami': older South Sami People in Sweden's expectations of home nursing care.

The Sami are an indigenous population with multiple languages and dialects living in northern areas of Sweden, Norway, Finland, and the Kola Peninsula. The South Sami population lives in central regions of Sweden and Norway, and consist of about 2000 people. In this study, 56 older South Sami people from Sweden participated. Semi-structured interviews were conducted over the telephone and analysed through qualitative content analysis. The main findings show that older South Sami people's expectations of having care providers with a South Sami background speaking South Sami in home nursing care contain contradictions in and between participants. Participants had different preferences regarding having care providers with a South Sami background speaking South Sami in the future. When providing care to older South Sami people, individual adjustments are of importance, and our study showed that participants had different expectations despite having similar backgrounds.

Factors of importance for developing a trustful patient-professional relationship when women undergo a pelvic examination.

We examined gynecological teaching women's perception on what factors are important for developing a trustful patient-professional relationship when women undergo a pelvic examination. A qualitative research design was conducted with repeated focus group discussions. Our results show that healthcare professionals' communications skills can strengthen a trustful patient-professional relationship. Treating women with dignity could make them feel less vulnerable and make the relationship trustworthy based on respect. Thus, having the ability to identify factors important for a trustful relationship may support healthcare professional's ability to strengthen women's health issues. A trustful relationship might also affect quality of care.

The importance of ethical aspects when implementing eHealth services in healthcare: A discussion paper.

AIM: The aim of this paper was to discuss the importance of ethical aspects when implementing eHealth services in health care. BACKGROUND: Challenges in healthcare today include a growing older population and, as a consequence, an increased need for healthcare services. One possible solution is the use of eHealth services. DESIGN: Discussion paper. DATA SOURCES: Research literature published from 2000-2017 in CINAHL, PubMed and Scopus. IMPLICATIONS FOR NURSING: Implementing eHealth services in health care involves ethical challenges where different technologies can solve different problems in different ways. eHealth services should therefore be developed and implemented based on the patient's specific needs and conditions for use and in accordance with the healthcare professionals' presumption to provide high-quality care. CONCLUSION: To preserve patients' integrity, dignity and autonomy, healthcare professionals must include ethical aspects when implementing and using eHealth services in health care. Healthcare professionals have to take responsibility for the eHealth services introduced, explaining why and how they are implemented based on a person-centred approach. More knowledge is needed about ethical aspects when implementing eHealth services to improve the quality of care.

Being Facilitators in a Challenging Context-School Personnel's Experiences of Caring for Youth with Diabetes Type 1.

PURPOSE: The purpose of the study was to describe school personnel's experiences of caring for youth with diabetes type 1. DESIGN AND METHODS: A qualitative design was chosen for this study. Data were collected with individual interviews that were subjected to inductive qualitative content analysis. The sample consisted of 24 school personnel (teachers, principals and school nurses) from Swedish schools. All had experience with youth aged 6 to 18 years old with diabetes type 1. RESULTS: School personnel experienced caring for youth with diabetes type 1 as "Being facilitators in a challenging context" and described establishing trusting relationships, finding strategies to support self-care, feeling uncertain and incapable in need of education, and dealing with unclear responsibility. CONCLUSIONS: School personnel (teachers, principals and school nurses) are key professionals supporting youth with diabetes type 1 and self-care in school. Lack of education and unclear responsibility created feelings of uncertainty and insecurity for school personnel and a need for mandatory education of school personnel regarding T1DM and self-care, including legislation was identified. IMPLICATIONS: Mandatory education should be provided for all school personnel regarding diabetes type 1, self-care and current legislation. A liason position in form of a nurse specialist should manage the education.

A second chance at life: people's lived experiences of surviving out-of-hospital cardiac arrest.

BACKGROUND: There is more to illuminate about people's experiences of surviving out-of-hospital cardiac arrest (OHCA) and how such an event affects people's lives over time. AIMS: This study aimed to elucidate meanings of people's lived experiences and changes in everyday life during their first year after surviving OHCA. METHODS: A qualitative, longitudinal design was used. Eleven people surviving OHCA from northern Sweden agreed to participate and were interviewed 6 and 12 months after the event. A phenomenological hermeneutic interpretation was used to analyse the transcribed texts. FINDINGS: The structural analysis resulted in two themes: (i) striving to regain one's usual self and (ii) a second chance at life, and subthemes (ia) testing the body, (ib) pursuing the ordinary life, (ic) gratitude for help to survival, (iia) regaining a sense of security with one's body, (iib) getting to know a new self, and (iic) seeking meaning and establishing a future. CONCLUSION: To conclude, we suggest that people experienced meanings of surviving OHCA over time as striving to regain their usual self and getting a second chance at life. The event affected them in many ways and resulted in a lot of emotions and many things to think about. Participants experienced back-and-forth emotions, when comparing their present lives to both their lives before cardiac arrest and those lives they planned for the future. During their first year, participants' daily lives were still influenced by 'being dead' and returning to life. As time passed, they wanted to resume their ordinary lives and hoped for continued lives filled with meaning and joyous activities.

Being in togetherness: meanings of encounters within primary healtcare setting for patients living with long-term illness.

AIMS AND OBJECTIVES: The aim of this study was to elucidate meanings of encounters for patients with long-term illness within the primary healthcare setting. BACKGROUND: Good encounters can be crucial for patients in terms of how they view their quality of care. Therefore, it is important to understand meanings of interactions between patients and healthcare personnel. DESIGN: A phenomenological hermeneutic method was used to analyse the interviews. METHODS: Narrative interviews with ten patients with long-term illness were performed, with a focus on their encounters with healthcare personnel within the primary healthcare setting. A phenomenological hermeneutical approach was used to interpret the interview texts. RESULTS: The results demonstrated that patients felt well when they were seen as an important person and felt welcomed by healthcare personnel. Information and follow-ups regarding the need for care were essential. Continuity with the healthcare personnel was one way to establish a relationship, which contributed to patients' feelings of being seen and understood. Good encounters were important for patients' feelings of health and well-being. Being met with mistrust, ignorance and nonchalance had negative effects on patients' perceived health and well-being and led to feelings of lower confidence regarding the care received. CONCLUSIONS: Patients described a great need to be confirmed and met with respect by healthcare personnel, which contributed to their sense of togetherness. Having a sense of togetherness strengthened patient well-being. RELEVANCE TO CLINICAL PRACTICE: By listening and responding to patients' needs and engaging in meetings with patients in a respectful manner, healthcare personnel can empower patients' feelings of health and well-being. Healthcare personnel need to be aware of the significance of these actions because they can make patients experience feelings of togetherness, even if patients meet with different care personnel at each visit.

Being a Parent to a Young Adult with Mental Illness in Transition to Adulthood.

Parents of young adults with mental illness may face a continued demand for support, even though their children have reached the age of majority. The aim of this study was to explore relatives' experiences of parenting a young adult with mental illness in transition to adulthood. Individual interviews were conducted and analysed according to Grounded Theory. The results showed that relatives experienced powerlessness and a sense of inescapable duty with limited possibilities to be relieved. With a family nursing approach, relatives can be supported and, when the young adults' needs of care are met, they can be relieved from their burden of responsibility.

Meanings of balance for people with long-term illnesses.

The aim of this study was to elucidate meanings of balance in everyday life for people with long-term illnesses living at home. People living with long-term illnesses are in need of help and support to manage their daily lives. Twelve adults with extensive needs for help and support were interviewed. A phenomenological hermeneutic interpretation was used to analyse the interview texts. The findings show that balance in everyday life for people with long-term illnesses means striving for independence through care and support in their surroundings. It was also important to be able to choose how their lives would be and to be with others who listened and understood them for who they are. By building a relationship with patients at an early stage of their illnesses, nursing staff have an opportunity to understand what people who are living at home with long-term illnesses need in order to achieve balance in their everyday lives.

Nurses' views of shortcomings in patent care encounters in one hospital in Sweden.

AIM AND OBJECTIVE: To describe nurses' views of shortcomings in patient care encounters in one hospital in Sweden. BACKGROUND: Shortcomings in encounters in healthcare have increased during recent years. Dissatisfaction with encounters in healthcare can affect patients' experiences of dignity, health and well-being. DESIGN: A qualitative design was used in the study. METHODS: Three focus group discussions with 15 nurses were conducted. The nurses worked in five different wards. The focus group discussions were subjected to a thematic content analysis. RESULTS: The results are presented in two themes. The first theme, 'Disregard for the patient's unique nursing needs', describes that information without consideration of the patient's needs, and nurses not being completely present in the meeting with the patient affected healthcare encounters and experiences of quality of care. In the second theme, 'Difficulty managing obstacles', nurses described care situations over which they could not always prevail due to lack of time and/or lack of awareness of the patient's vulnerability. CONCLUSION: The findings illustrate the importance of nurses and their approaches to patients. The nurse's attitude is important for the patient's experiences of participation, security, dignity, and well-being. The findings also illustrate the importance of routines in the healthcare organisation that support and facilitate positive encounters between patients, their close relatives and the healthcare staff. RELEVANCE TO CLINICAL PRACTICE: Nurses require understanding, presence and commitment in their relationships to every unique patient, and their goal should be to adopt interventions with regard to positive healthcare encounters based on each patient's experiences of good nursing care.

Similarities and differences in the experience of fatigue among people living with fibromyalgia, multiple sclerosis, ankylosing spondylitis and stroke.

AIMS AND OBJECTIVES: To elucidate the experience of fatigue across several long-term illnesses, focusing on the similarities and differences. BACKGROUND: Fatigue is common to many long-term illnesses, but it has been studied mainly within the context of a single illness; qualitative studies comparing the experience and its impact on daily life across different long-term illnesses are lacking. DESIGN: Qualitative design. METHODS: A secondary analysis was conducted of five original interview studies involving 95 persons with ankylosing spondylitis, fibromyalgia, multiple sclerosis or stroke. RESULTS: Similarities and differences concerning experiences of fatigue were found across the studied long-term illnesses. All patients expressed the perception of having an unfamiliar body. Fatigue was also commonly expressed as unpredictable, uncontrollable and invisible to others. Differences were related to a constant versus a varying condition, a sudden and an uncontrollable sleepiness, a mutual reinforcement with pain and increased stress sensitivity. A lack of energy and a need for sleep and rest were common experiences, as was the impact on social relationships. There were also similarities regarding how the patients managed their daily life. The search for practical solutions and attitude adjustment differed with the fatigue characteristics. All patients felt a lack of understanding and disbelief from others. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Fatigue is commonly expressed by patients with long-term illnesses. Variations in experience are related to the type of diagnosis. The disparity between experiences influences how patients managed and adjusted to the conditions of everyday life. The illness-specific characteristics of fatigue warrant increased clinical awareness and may allow professionals to offer adequate information and establish effective methods of managing the condition. The feeling of invisibility and difficulty describing the experience of fatigue in particular highlights this need.

District nurses' views on quality of primary healthcare encounters.

Good encounters are fundamental for good and professional nursing care, and can be described as treating patients with respect and protecting their integrity and autonomy. This study describes district nurses' views on quality of healthcare encounters in primary healthcare. A purposive sample of 27 district nurses participated in five focus group interviews. The focus groups interviews were digitally recorded and transcribed verbatim. The interview texts were analysed using a thematic content analysis. The analysis resulted in four themes, including being aware of the importance and difficulties during encounters, being the patient's advocate, being attentive to the unique person and being informed when a meeting turned out poorly. The results show that district nurses believed that encounters formed the basis of their work and it was vital for them to be aware of any difficulties. District nurses found that acting in a professional manner during encounters is the most significant factor, but this type of interaction was sometimes difficult because of stress and lack of time. The district nurses considered themselves to be the patients' advocate in the healthcare system; in addition, the acts of seeing, listening, believing and treating the patient seriously were important for providing good quality care. If a poor encounter occurred between the district nurse and the patient, the district nurses found that it was necessary to arrange a meeting to properly communicate what problems arose during the interaction. The district nurses highlighted that providing an apology and explanation could improve future encounters and establish a better nurse-patient relationship. In conclusion, this study shows the importance of confirming and respecting patients' dignity as the fundamental basis for a good quality encounter in primary healthcare.

Swedish Young Adults' Experiences of Psychiatric Care during Transition to Adulthood.

The number of young adults with mental illness and the need of psychiatric care has increased during the last decades. The aim of the study was to explore young adults' experiences of psychiatric care during transition to adulthood. Individual interviews were conducted with 11 young adults and analysed according to Grounded Theory. The analyses results showed that support was a prerequisite for transition to adulthood and striving to reach recovery. By being encountered as a person and with a supportive environment, young adults can be motivated to continue care and be encouraged to express feelings.

Meanings of people's lived experiences of surviving an out-of-hospital cardiac arrest, 1 month after the event.

BACKGROUND: The out-of-hospital cardiac arrest (OHCA) survival rate has been poor and stable for a long time, but more recent studies describe its increase. However, there are few studies in which people narrate their experiences from surviving. OBJECTIVE: The aim of this study was to elucidate meanings of people's lived experiences of surviving an OHCA with validated myocardial infarction (MI) etiology, 1 month after the event. METHODS: A purposive sample of 2 women and 9 men was interviewed between February 2011 and May 2012. A phenomenological hermeneutical method was used for analysis, which involved 3 steps: naive reading and understanding, structural analysis, and comprehensive understanding. RESULTS: There were 2 themes, (1) returning to life and (2) revaluing life, and five subthemes, (1a) waking up and missing the whole picture, (1b) realizing it was not time to die, (2a) wondering why and seeking explanations, (2b) feeling ambiguous in relations, and (2c) wondering whether life will be the same. All were constructed from the analysis. CONCLUSIONS: Surviving an OHCA with validated MI etiology meant waking up and realizing that one had experienced a cardiac arrest and had been resuscitated. These survivors had memory loss and a need to know what had happened during the time they were dead/unconscious. They searched for a reason why they experienced an MI and cardiac arrest and had gone from being "heart-healthy" to having a lifelong illness. They all had the experience of passing from life to death and back to life again. For the participants, these differences led to a revaluation of what is important in life.

People's experiences of suffering a lower limb fracture and undergoing surgery.

AIMS AND OBJECTIVES: To describe people's experiences of suffering a lower limb fracture and undergoing surgery, from the time of injury through to the care given at the hospital and recovery following discharge. BACKGROUND: There is a lack of research on people's experiences of suffering a lower limb fracture and undergoing surgery - from injury to recovery. DESIGN: A qualitative approach was used. METHODS: Interviews with nine participants were subjected to thematic content analysis. RESULTS: One theme was expressed: from realising the seriousness of the injury to regaining autonomy. Participants described feelings of frustration and helplessness when realising the seriousness of their injury. The wait prior to surgery was a strain and painful experience, and participants needed orientation for the future. They expressed feelings of vulnerability about being in the hands of staff during surgery. After surgery, in the postanaesthesia unit, participants expressed a need to have control and to feel safe in their new situation. To mobilise and regain their autonomy was a struggle, and participants stated that their recovery was extended. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: Participants found themselves in a new and unexpected situation and experienced pain, vulnerability and a striving for control during the process, that is, 'from realising the seriousness of the injury to regaining autonomy'. How this is managed depends on how the patient's needs are met by nurses. The nursing care received while suffering a lower limb fracture and undergoing surgery should be situation specific as well as individual specific. The safe performance of technical interventions and the nurse's comprehensive explanations of medical terms may help the patient to feel secure during the process.

Meanings of being received and met by others as experienced by women with fibromyalgia.

Fibromyalgia (FM) is a common chronic pain syndrome that mostly affects middle-aged women. Our aim with this study was to elucidate meanings of being received and met by others as experienced by women with FM. Interviews with a narrative approach were conducted with 9 women. We analyzed the transcribed interviews with a phenomenological hermeneutical interpretation. The findings revealed two themes: being seen as a malingerer and being acknowledged. Meanings of being received and met by others, as experienced by women with FM, can be understood as a movement between the two perspectives. When they were acknowledged, their feelings of security and trust increased, but the women could not rely on this because others received and met them in such an unpredictable manner.

Risk factors among people surviving out-of-hospital cardiac arrest and their thoughts about what lifestyle means to them: a mixed methods study.

BACKGROUND: The known risk factors for coronary heart disease among people prior suffering an out-of-hospital cardiac arrest with validated myocardial infarction aetiology and their thoughts about what lifestyle means to them after surviving have rarely been described. Therefore the aim of the study was to describe risk factors and lifestyle among survivors. METHODS: An explanatory mixed methods design was used. All people registered in the Northern Sweden MONICA myocardial registry between the year 1989 to 2007 who survived out-of-hospital cardiac arrest with validated myocardial infarction aetiology and were alive at the 28th day after the onset of symptoms (n = 71) were included in the quantitative analysis. Thirteen of them participated in interviews conducted in 2011 and analysed via a qualitative manifest content analysis. RESULTS: About 60% of the people had no history of ischemic heart disease before the out-of-hospital cardiac arrest, but 20% had three cardiovascular risk factors (i.e., hypertension, diabetes mellitus, total cholesterol of more or equal 5 mmol/l or taking lipid lowering medication, and current smoker). Three categories (i.e., significance of lifestyle, modifying the lifestyle to the new life situation and a changed view on life) and seven sub-categories emerged from the qualitative analysis. CONCLUSIONS: For many people out-of-hospital cardiac arrest was the first symptom of coronary heart disease. Interview participants were well informed about their cardiovascular risk factors and the benefits of risk factor treatment. In spite of that, some chose to ignore this knowledge to some extent and preferred to live a "good life", where risk factor treatment played a minor part. The importance of the support of family members in terms of feeling happy and having fun was highlighted by the interview participants and expressed as being the meaning of lifestyle. Perhaps the person with illness together with health care workers should focus more on the meaningful and joyful things in life and try to adopt healthy behaviours linked to these things.