Caring burden and coping with haemodialysis: a qualitative study with family caregivers in Sri Lanka.

OBJECTIVE: The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context. DESIGN: Qualitative study with an exploratory design. SETTING: Family caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021. PARTICIPANTS: A purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis. RESULTS: The results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support. CONCLUSION: The results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained settings.

Nurse assistants' experiences of encountering patients in grief due to the death of a loved one - a qualitative study in municipal health and social care.

PURPOSE: The aim was to explore nurse assistants´ experiences of paying attention to and encountering patients receiving municipal health and social care, who are in grief due to the death of a loved one. METHODS: A qualitative study with focus group interviews (n = 6) was conducted with nurse assistants (NAs) (n = 28) in municipal health and social care (n = 5) in southern Sweden. The data were analysed inductively using qualitative content analysis. RESULTS: Three categories (1) Noticing changes in the patient, (2) Using different strategies to create a dialogue with the patient, (3) Experiencing challenges when encountering patients in grief, included eight sub-categories were identified. The result is captured in the theme of Having to be attentive to signs of grief after patients´ loss of loved ones, sensing the right time to approach and comfort, while having to cope with emotional challenges. CONCLUSIONS: The NAs encountered expressions of strong emotions from patients in grief, and even expressions of a desire to end their lives. Additionally, the NAs had to deal with their own emotions that were evoked when meeting patients in grief. These challenges indicate the need for enhanced conditions in the work culture, and improved training and supervision in health and social care.

A Philosophical Review of School Nursing Framed by the Holistic Nursing Theory of Barbara Dossey.

This article is a philosophical review of school nursing and its constructs framed by Barbara Dossey's holistic nursing theory. The author describes the application of holistic nursing theory within the school nurse's area of activity. The review suggests that holistic nursing theory can be applied in several areas of school nursing. School nurses have a multifaceted occupation that includes meetings with students, parents, and school staff. Barbara Dossey's holistic nursing theory offers the school nurse tools to deal with people's varied experiences, feelings, and needs.

Being Different but Striving to Seem Normal: The Lived Experiences of People Aged 50+ with ADHD.

This qualitative study explored the day-to-day life of people aged 50+ diagnosed with ADHD. A phenomenological-hermeneutical method was chosen for the analysis. Two themes including sub-themes were revealed. The first theme, Being different and trying to handle my inner self, concerned emotional self-regulation, emotional resilience, social skills, and personal resource management. The second theme, Trying to adapt to fit in with people around me, concerned relationships, work, and personal finances. The comprehensive understanding was interpreted as Being different but striving to seem normal.

Encounters with Persons Who Frequently Use Psychiatric Emergency Services: Healthcare Professionals' Views.

Encounters and interactions between healthcare professionals and patients are central in healthcare services and delivery. Encountering persons who frequently use psychiatric emergency services (PES), a complex patient group in a complex context, may be particularly challenging for healthcare professionals. The aim of the study was to explore healthcare professionals' experiences of such encounters. Data were collected via individual interviews (N = 19) and a focus group interview with healthcare professionals consisting of psychiatric nurses, assistant nurses, and physicians. The data were analyzed with qualitative content analysis. This study focused on the latent content of the interview data to gain a rich understanding of the professionals' experiences of the encounters. Two themes were identified: "Nurturing the encounter with oneself and colleagues for continuous, professional improvement" and "Striving for a meaningful connection with the patient". The professionals experienced their encounters with persons who frequently use PES as caring, professional, and humane processes. Prerequisites to those encounters were knowing and understanding oneself, having self-acceptance and self-compassion, and working within person-centered cultures and care environments.

Professionals' Perspective on Needs of Persons Who Frequently Use Psychiatric Emergency Services.

This study explores how professionals experience persons who frequently use psychiatric emergency services (PES) in terms of their needs in Sweden. The data comprise 19 semi-structured individual interviews and one focus group interview with healthcare professionals (i.e., assistant nurses, psychiatric nurses, intern physicians, and resident physicians), which are analyzed using qualitative content analysis. The overall findings suggest that persons who frequently use PES suffer from illness, unfavorable life circumstances, and inadequate care, which together emphasize the need for more sustainable support. The findings indicate that the professionals saw beyond illness-related needs and could also acknowledge patients' needs originating from social, existential, and care- and support-related aspects of life.

"The importance of awareness, support and inner strength to balance everyday life" - a qualitative study about women's experiences of a workplace health promotion program in human service organizations in Sweden.

BACKGROUND: In many European countries, women have a higher sickness absence rate than men. Women also report higher levels of work-life conflict, which has a negative impact on women's self-perceived health. Interventions studies on work-life balance literature are scarce. This research adds knowledge about work-life balance by examining female employees' experiences of a newly developed intervention program, the BELE program (Balance in Everyday Life Empowerment program), aiming to enhance the work-life balance and wellbeing of female employees. METHODS: All participants in the BELE program were included in the sample (n = 55) of the study. The methods used for gathering data were focus group interviews (n = 8) and semi-structured individual interviews (n = 8). A qualitative content analysis was used for the analyses. RESULTS: The results showed that a majority of the participants experienced a process of change for enhancement of wellbeing and balance in their everyday life when taking part in the BELE program. In the analyses, three main themes emerged. Reflecting and strengthening inner resource, Trying to change everyday patterns and habits and Experiencing more balance and well-being. CONCLUSIONS: The results point out the importance of awareness and reflection on everyday life to promote work-life balance and wellbeing. The BELE program was described as a wakeup call to one's own life and as an enhancer of empowerment processes and equality in the homes. Moreover, the results showed the need for health education in the workplace focusing on both work and private life to enhance balance and wellbeing among female employees'. The findings indicate that it is important to work at individual and group levels in work-life balance interventions and not merely at the organizational level or in the workplace setting.

Public health nurses' experiences of using interpreters when meeting with Arabic-speaking first-time mothers.

OBJECTIVES: The aim of this study was to investigate public health nurses' experiences of using interpreters when meeting with Arabic-speaking first-time mothers. DESIGN AND SAMPLE: An inductive qualitative design was used. Individual interviews were conducted with Swedish public health nurses (n = 11) with experience of working in child health care with interpreters when meeting with Arabic-speaking first-time mothers. MEASURES: Data were analyzed using qualitative content analysis. RESULTS: The analysis of the interviews resulted in one overarching theme: Having to accept and learn to incorporate interpreters when meeting with Arabic-speaking first-time mothers. Three subthemes were identified: (a) enabling an understanding of the situation of the mothers; (b) contributing to a trustful relationship; and (c) creating disturbing elements in the dialogue. CONCLUSIONS: Using interpreters optimized the conversation between the public health nurse and the Arab-speaking first-time mother; however, the complexity of using interpreters was also apparent.

Mental ill-health among adult patients at healthcare centres in Sweden: district nurses experiences.

BACKGROUND: Mental ill-health among the general population is increasing in Sweden. Primary Health Care (PHC) and Healthcare Centres (HCC), where district nurses (DNs) work, bear the basic responsibility for treatment of mental ill-health, while severe mental ill-health fall under the responsibility of psychiatric specialist care. The increased prevalence of mental ill-health in the community means that DNs increasingly encounter people with mental health problems - not least as a comorbidity. How well DNs are equipped to deal with mental ill-health is currently unclear. AIM: The purpose of this study was to explore district nurses' experience of encountering and dealing with mental ill-health among adult patients at healthcare centres. DESIGN: A qualitative explorative approach was used to capture the experiences of the phenomena under study. METHODS: Individual interviews were conducted with 10 DNs working at six HCCs. The interviews were transcribed and analysed by qualitative content analysis. RESULTS: The result emerged as several subcategories captured by three categories: (i) having competence - a prerequisite for feeling confident; (ii) nursing mental ill-health requires time and commitment; and (iii) working in an organisation without preparedness, encompassed by the synthesising theme; nursing mental ill-health requires specific competence and organisational support. CONCLUSION: Working as a DN requires formal and informal competence when encountering patients with complex health needs. The findings revealed that the DNs could feel insecure regarding how to deal with patients with mental ill-health due to lack of knowledge. Assessment of patients with mental ill-health is time- and energy-consuming and calls for improved teamwork at HCCs as well as effective collaboration with psychiatric specialist care and other care givers. The DNs responsibility to fulfil their work considering the increasing number of mental ill-health among people that seeks help at HCCs needs to be acknowledged and met by the PHC organisation.

An Improvement Program as a Way to Intensify Inter-Professional Collaboration in the Community for People with Mental Disabilities: A Follow-Up.

The aim of the study was to follow up inter-professional experiences of improvement work one year after a completed CII improvement program aiming at improve health care and social services for people with mental disabilities living in ordinary housing. This study was performed with a qualitative descriptive approach which employed six focus group interviews followed by a thematic analysis. The results revealed four themes; Self-awareness and insights; Behavior and actions in daily practice; Organizational cultures and subcultures; and Organizational practices, using Ken Wilbers' integral theory of four quadrants of realities as a holistic frame in the discussion.

Challenges to Improve Inter-Professional Care and Service Collaboration for People Living With Psychiatric Disabilities in Ordinary Housing.

The aim of this study was to describe health care- and social service professionals' experiences of a quality-improvement program implemented in the south of Sweden. The focus of the program was to develop inter-professional collaboration to improve care and service to people with psychiatric disabilities in ordinary housing. Focus group interviews and a thematic analysis were used. The result was captured as themes along steps in process. (I) Entering the quality-improvement program: Lack of information about the program, The challenge of getting started, and Approaching the resources reluctantly. (II) Doing the practice-based improvement work: Facing unprepared workplaces, and Doing twice the work. (III) Looking back--evaluation over 1 year: Balancing theoretical knowledge with practical training, and Considering profound knowledge as an integral part of work. The improvement process in clinical practice was found to be both time and energy consuming, yet worth the effort. The findings also indicate that collaboration across organizational boundaries was broadened, and the care and service delivery were improved.

Family caregivers experiences of formal care when caring for persons with dementia through the process of the disease.

BACKGROUND: Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated. AIMS: To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease. DESIGN: A qualitative approach with focus group interviews. METHODS: Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis. RESULTS: The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'. CONCLUSION: Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being.

Challenges Highlighted During Peer Supervision by Mental Health Nurses and Social Workers Recently Trained as Case Managers in Sweden.

This study looked at 13 mental health nurses and social workers who were recently trained as case managers (CMs) and the work-related challenges they faced in community mental health services. Data were collected during ten peer supervisions sessions. Participants expressed pride and enthusiasm about their new function as CMs, but they also acknowledged that their new position meant they had to confront existing systems and posed several challenges, including organizational hindrances, economic prerequisites, nominated administrators, role function, and model fidelity. We conclude that the existing organizations seemed to be unprepared to hold and facilitate more person-centered approaches, such as designating CMs. The model fidelity is important, but has to be flexible according to clients' daily state.

Shift work to balance everyday life - a salutogenic nursing perspective in home help service in Sweden.

BACKGROUND: Nurses in Sweden have a high absence due to illness and many retire before the age of sixty. Factors at work as well as in private life may contribute to health problems. To maintain a healthy work-force there is a need for actions on work-life balance in a salutogenic perspective. The aim of this study was to explore perceptions of resources in everyday life to balance work and private life among nurses in home help service. METHODS: Thirteen semi-structured individual interviews and two focus group interviews were conducted with home help service nurses in Sweden. A qualitative content analysis was used for the analyses. RESULT: In the analyses, six themes of perceptions of recourses in everyday life emerged; (i) Reflecting on life. (ii) Being healthy and taking care of yourself. (iii) Having a meaningful job and a supportive work climate. (iv) Working shifts and part time. (v) Having a family and a supporting network. (vi) Making your home your castle. CONCLUSIONS: The result points out the complexity of work-life balance and support that the need for nurses to balance everyday life differs during different phases and transitions in life. In this salutogenic study, the result differs from studies with a pathogenic approach. Shift work and part time work were seen as two resources that contributed to flexibility and a prerequisite to work-life balance. To have time and energy for both private life and work was seen as essential. To reflect on and discuss life gave inner strength to set boundaries and to prioritize both in private life and in work life. Managers in nursing contexts have a great challenge to maintain and strengthen resources which enhance the work-life balance and health of nurses. Salutogenic research is needed to gain an understanding of resources that enhance work-life balance and health in nursing contexts.

Challenges of Documenting Schoolchildren's Psychosocial Health: A Qualitative Study.

The aim of this study was to explore school nurses' experience of challenges related to documenting schoolchildren's psychosocial health in Sweden. Six focus group discussions were carried out. Areas for discussions included questions about situations, especially challenging to document as well as what constrains and/or facilitates documenting psychosocial health problem issues. Qualitative content analysis was used for interpreting the data. The analysis resulted in one overarching theme: having to do one's duty and being afraid of doing wrong; and three subthemes: uncertainty related to one's own ability, concerns related to future consequences, and strategies to handle the documentation. School nurses relying on their intuition and using a structured documentation model may increase the opportunities for a reliable documentation. To further develop their professional skills with regular, clinical supervision can be of great importance. This in turn may increase contributions to research and development for the benefit of schoolchildren's psychosocial health.

Best practice and needs for improvement in the chain of care for persons with dementia in Sweden: a qualitative study based on focus group interviews.

BACKGROUND: Persons with dementia receive health care and social services from a wide range of professional care providers during the disease trajectory, presenting risks of miscommunication, duplication and/or missed nursing interventions. Accordingly, the aim of this study was to investigate professional care providers' views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden. METHODS: The study had a qualitative design based on three focus group interviews. A strategic sample of 23 professional care providers was included. Data were subjected to content analysis based on the three stages of dementia (early, moderate, end-of-life). RESULTS: The results were divided into five categories: Diagnosis is a prerequisite for specialized dementia care, Creating routines in the chain of care, Competent staff a prerequisite for high-quality care, Day care facilitates transition in the chain of care and Next-of-kin participation is a prerequisite for continuity in the chain of care. It was clear that, according to the participants, best practice in dementia care in Sweden is not achieved in every respect. It appeared that transitions of care between different organizations are critical events which need to be improved. The further the disease progresses, the less collaboration there seems to be among professional care providers, which is when the next of kin are usually called upon to maintain continuity in the chain of care. CONCLUSIONS: The results indicate that, according to the care providers, best practice in terms of collaboration is achieved to a higher degree during the early stage of dementia compared with the moderate and end-of-life stages. Lack of best practice strategies during these stages makes it difficult to meet the needs of persons with dementia and reduce the burden for next of kin. These are experiences to be taken into account to improve the quality of dementia care. Implementation research is needed to develop strategies for best practice on the basis of national knowledge-based guidelines and to apply these strategies in the moderate and end-of-life stages.

International school children's health needs: school nurses' views in Europe.

Rapid globalization and the integration of national economies have contributed to the sharp rise in enrollment in international schools. How does this global nomadism affect international school children and their individual health needs? This study attempts to find an answer by interviewing 10 school nurses, with varying degrees of experience in international schools in Sweden, Germany, and Switzerland. Through qualitative semistructured interviews, the school nurses described that the international school children expressed common health needs similar to the ones faced by children in other school settings. However, children in the international schools expressed additional context-specific health needs related to their transient lifestyle, such as language and cultural difficulties, emotional distress, vulnerability, homesickness, alienation, and increased physical health needs related to their expatriate lifestyle. These factors often present a challenge for the school nurse whose profession is to interpret the child's health needs, which may be obscured by cultural diversity.

Care managers' view of family influence on needs assessment of older people.

Research has shown that families experience poor involvement in needs assessment of older people while little is known about municipal care managers' views of family participation. The aim was to explore how municipal care managers view families' participation in and influence on needs assessment of older people receiving public home help. Individual interviews (n=26) were conducted with care managers (n=5) about their previously conducted needs assessments (n=5-6). As a complement, a focus group interview with care managers (n=9) from nine different municipalities was conducted. All interviews were analysed using a qualitative content analysis. The results revealed the overarching category, 'Having to establish boundaries towards family influence and at the same time use them as a resource', which encompassed five principal categories. How family participation was viewed and handled during the needs assessment process seemed determined by the way care managers set boundaries for their professional responsibility. Their views revealed both distancing and strengthening attitudes. The distancing attitude dominated, in particular towards family members who were not perceived as having any legal rights to be considered, even though their participation was an important resource. To follow legislation and municipal guidelines of allocation of public home help to avoid reprimands caused a need for self-protection. The care managers seemed pressed by demands from organizations and families, and in this competition, the family lost out. Adherence to organizational developed patterns of handling legislation and guidelines were prioritized. Because family members often are older and assist in providing care, family participation in the needs assessment of older help recipients needs further societal support.

Family members' experience of participation in the needs of assessment when their older next of kin becomes in need of public home help: a qualitative interview study.

BACKGROUND: The policy that older people should be able live in their own homes in spite of extensive care and social service needs means that close family members are increasingly involved in help provision. Ways must be found to facilitate their situation. Their participation in the needs assessment of their next of kin may be crucial. OBJECTIVES: The aim of the study was to illuminate close family members' experience of having an older next of kin becoming in need of public home help, their participation in the needs assessment procedure and the decisions about their next of kins' public home help. PARTICIPANTS: The sample was 27 close family members (mean age 63, range 42-93 years) chosen by their older needs-assessed next of kin. METHODS: An interview using a thematic interview guide formed an everyday dialogue jointly constructed by the interviewer and the interviewee. Thereafter an interpretative content analysis was conducted on the transcribed interviews. RESULTS: One overarching category was illuminated: "Feeling disconfirmed or confirmed in the needs assessment, when feeling pressed by the responsibility and struggling to balance the needs of the family." Four principal categories with sub-categories were derived: (1) Experiencing existential ruminations and the need to help. (2) Help giving and receiving as a difficult balance between needs. (3) Feeling overlooked or acknowledged as having an influence on the needs assessment. (4) Hopes about the home help being fulfilled or dashed. CONCLUSION: The findings imply that the main focus is on the help seeker, overlooking the contribution of family members representing and providing help. A more holistic needs assessment approach is required with a framework and working methods that involve and support the family as a whole.

Older persons' experience of being assessed for and receiving public home help: do they have any influence over it?

The aim of this qualitative study was to explore older persons' experience of participation in and influence on decisions about public home help/care when undergoing needs assessment and receiving public home help. A purposive sample of 28 home help recipients over the age of 75 were selected. Data were collected by means of in-depth interviews. A content analysis revealed one overarching category: 'Having to be satisfied, adjust, and walk a fine line when balancing between needs and available help'; and three principal categories: Balancing the comfort and guilt--receiving help from the family at the limits of their capacity; 'A necessary evil'--balancing feelings and resources against having no choice but to accept; Incorporating the home help into daily life to gain a sense of continuity. The findings indicate that older persons have difficulties coping and adapting to their new life situation and have no actual influence over the decisions about their home help. The officer told them what was available. This implies a need to pay attention to the frail persons' mental state in the needs assessment and to ensure adequate understanding of information. Further, it suggests that the needs assessment and the home help officer should to a larger extent focus on individual needs as a whole, involve and encourage the older person to strengthen his or her sense of being in control.