Parental Experiences Caring for Their Hospitalized Medically Fragile Infants: A Description of Grief, Stress, and Coping

2020 ◽  
pp. 084456212095412
Author(s):  
Lyndsay MacKay ◽  
Karen Benzies ◽  
Chantelle Barnard ◽  
Shelley Raffin Bouchal
Keyword(s):  
Multiple Stressors ◽  
Constructivist Grounded Theory ◽  
Physical And Mental Health ◽  
Structured Interviews ◽  
Medically Fragile ◽  
Face To Face ◽  
Parental Experiences ◽  
Primary Nursing ◽  
Holistic Understanding ◽  
And Coping

Background Advances in care have increased survival and improved outcomes of infants with complex and chronic diseases. These medically fragile infants require long-term hospitalization and depend on technology for survival. Parents of these infants experience stress and difficulties adapting to their parental role. Purpose To present an account of parental experiences as they provided care for their hospitalized medically fragile infant. Methods This study was part of a larger constructivist grounded theory study to provide a holistic understanding of the processes of care for medically fragile infants. For this sub-study, 21 parents of hospitalized medically fragile infants were recruited from a pediatric hospital in Western Canada. Parents participated in face-to-face, semi-structured interviews, which were transcribed and analyzed using initial and focused coding. Results Parents of hospitalized medically fragile infants grieved the loss of parenting a healthy infant, and they experienced multiple stressors. Parents utilized various coping strategies to manage their grief and stressors. Some parents were unable to cope, which exacted a heavy toll on their physical and mental health. Parents recommended psychological support, access to physical activity, primary nursing, and health system navigators. Conclusions Parental recommendations can inform the design of interventions for parents of hospitalized medically fragile infants.

scholarly journals What Do Australian Library and Information Professionals Experience as Evidence?

2017 ◽  
Vol 12 (1) ◽  
pp. 97 ◽  
Author(s):  
Ann Gillespie ◽  
Faye Miller ◽  
Helen Partridge ◽  
Christine Bruce ◽  
Alisa Howlett
Keyword(s):  
Public Library ◽  
Local Environment ◽  
Research Literature ◽  
Constructivist Grounded Theory ◽  
Structured Interviews ◽  
Face To Face ◽  
The Public ◽  
Information Professionals ◽  
Many Sources ◽  
Library Professionals

Abstract Objective – This article presents the findings of a project which established an empirical basis for evidence based library and information practice (EBLIP). More specifically, the paper explores what library and information professionals experienced as evidence in the context of their professional practice. Methods – The project consisted of two sub-studies. The public library sub-study was conducted using ethnography. Over a 5-month period, a member of the research team travelled to a regional public library on 15 occasions, staying between 3 and 4 days on each visit. The researcher observed, interacted, and became involved in the day-to-day activities of this library. These activities were recorded in a journal and added to the researcher’s insights and thoughts. Additionally, 13 face-to-face interviews with staff in positions ranging from the operational to the executive were conducted. The academic sub-study was conducted using Constructivist Grounded Theory. Semi-structured interviews were conducted either in person or via Skype, with 13 librarians from Australian universities. Interviewees were in a diverse array of roles, from liaison librarian to manager and library director. Results – The project found that the Australian academic librarians and the public librarians who participated in the project experienced six elements as evidence: observation, feedback, professional colleagues, research literature, statistics, and intuition. Each of these will be described and highlighted with examples from each of the two studies. Conclusions – The findings of this study revealed many similarities in the way that library professionals from both studies experienced evidence. Evidence was not hierarchical, with evidence from many sources being valued equally. In contextualizing evidence and applying to the local environment, library professionals were able to draw upon more than one source of evidence and apply their professional knowledge and experiences. In this way evidence was more nuanced.

scholarly journals Work productivity loss among rheumatoid arthritis patients in India: a qualitative study

2019 ◽  
Vol 3 (2) ◽  
Author(s):  
Avinash Jain ◽  
Amita Aggarwal ◽  
Jo Adams ◽  
Rachel E Jordan ◽  
Steven Sadhra ◽  
...  
Keyword(s):  
Productivity Loss ◽  
Work Productivity ◽  
Medical Sciences ◽  
Structured Interviews ◽  
Support Mechanism ◽  
Face To Face ◽  
Sanjay Gandhi Postgraduate Institute ◽  
And Coping ◽  
The Impact ◽  
Different Sources

Abstract Objective The aim was to explore the extent to which RA impacts work productivity in patients living with RA in India. Methods Face-to-face semi-structured interviews took place with 13 male and seven female patients attending outpatient clinics at Sanjay Gandhi Postgraduate Institute of Medical Sciences, India, living with RA. Patients who were currently working were recruited. Data were audio recorded, transcribed by an independent translation company and analysed using the framework method of thematic analysis. Results Four themes that explained patients’ experiences of coping with work whilst having RA were identified. These were as follows: balancing act of work and RA, in which participants expressed their day-to-day struggle of living with RA and coping at work; workplace adaptation after RA, in which participants shared insights into communicating with employers and their efforts to adapt at the workplace; support from others and information to manage RA and work, in which participants considered seeking support from different sources that would help them cope at work and understand RA; and wanting a better support mechanism, in which participants made recommendations that could help them to cope at work. Conclusion This is the first study to explore the impact of RA on patients’ work productivity in India. Patients might have different support needs compared with previous studies in other countries. Patients seem to be adopting additional coping strategies not addressed by current interventions or country systems, which might not be sufficient to support patients in remaining employed. Patients made future recommendations.

scholarly journals Transition outcomes for young people discharged from adolescent medium secure services in England: A qualitative study exploring adolescents’ and carers’ experiences

2021 ◽  
pp. 135910452110260
Author(s):  
Maria I Livanou ◽  
Marcus Bull ◽  
Rebecca Lane ◽  
Sophie D’Souza ◽  
Aiman El Asam ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Transition Process ◽  
Transition Management ◽  
Community Settings ◽  
Structured Interviews ◽  
Face To Face ◽  
Parental Experiences ◽  
Transition Outcomes ◽  
Adult Services

Background Young people in secure services present with multiple vulnerabilities; therefore, transition periods are especially challenging for this group. In this study, we followed up young people discharged from adolescent medium secure services to adult and community settings with the aim to explore transition experiences and outcomes. Methods Participants were recruited from 15 child and adult mental health services in England. We conducted qualitative semi-structured interviews with 13 young people, aged 18–19 years, moving from adolescent medium secure units 2–6 months post-transition, and five carers 1–3 months pre-transition. Thematic analysis was performed to identify predetermined or data-driven themes elicited from face-to-face interviews. Results The findings indicated poor transition outcomes for young people with the most severe mental health symptoms and those who committed serious offences. Three overarching themes were identified: (1) unsettling environmental factors within adult services; (2) experiences of transition management and preparation and (3) parental experiences of transition process and engagement with adult services. Conclusion The findings of this study indicate that young people and carers value ongoing involvement in the transition process by well-informed parallel care. They also highlight the need for a national integrative care model that diverges from the traditional ‘one-size-fits-all’ approach.

scholarly journals Patient Perceptions of the Impact of Treatment (Surgery and Radiotherapy) for Soft Tissue Sarcoma

Sarcoma ◽  
2019 ◽  
Vol 2019 ◽  
pp. 1-8 ◽  
Author(s):  
Lauren Hewitt ◽  
Rachael Powell ◽  
Kaan Zenginer ◽  
Catherine Coyle ◽  
Helen Murray ◽  
...  
Keyword(s):  
Soft Tissue ◽  
Soft Tissue Sarcoma ◽  
Information Needs ◽  
Postoperative Radiotherapy ◽  
Patient Perceptions ◽  
Structured Interviews ◽  
Face To Face ◽  
Framework Approach ◽  
And Coping ◽  
The Impact

Background and Objectives. Treatment for soft tissue sarcoma (STS) is challenging for patients. This study aimed to gain an in-depth understanding of patients’ experiences of STS treatment, including whether the sequence of treatment (preoperative or postoperative radiotherapy) influences patient perceptions. Methods. Face-to-face semi-structured interviews were conducted with nineteen patients who had been treated for STS with surgery and radiotherapy between 2011 and 2016. Topics discussed included perceptions of treatment, social support, and coping mechanisms. Qualitative, inductive, thematic analysis was conducted and structured using the Framework approach. Results. Treatment sequence itself did not appear to cause concern, but uncertainty regarding treatment and side effects could negatively impact participants. Social relationships and individual coping strategies influenced participants’ experiences of treatment. Conclusions. Participants’ perceptions of the treatment process varied; the experience was highly individual. It is important to ensure individual psychosocial and information needs are met. In particular, the removal of uncertainty regarding treatment is important in supporting patients undergoing treatment for soft tissue sarcoma.

scholarly journals The nurse without a nurse: the antecedents of presenteeism in nursing

BMC Nursing ◽  
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Mohammad Mehdi Mohammadi ◽  
Nahid Dehghan Nayeri ◽  
Shokoh Varaei ◽  
Arezoo Rasti
Keyword(s):  
Content Analysis ◽  
Qualitative Content Analysis ◽  
Physical And Mental Health ◽  
Structured Interviews ◽  
Face To Face ◽  
Content Analysis Method ◽  
Study Population ◽  
Limited Power ◽  
Health Complications ◽  
Insufficient Knowledge

Abstract Background Presenteeism describes the state in which staff who lack the conditions for being present at work and need rest and leave for various reasons (such as illness, low spirits, fatigue, etc.) are present at the workplace. Due to the lack of knowledge about the antecedents of presenteeism in nurses and the context-based nature of this concept, the present study was conducted to explain the reasons for presenteeism in nurses. Methods This qualitative study was performed using the qualitative content analysis method. The study population consisted of 17 nurses working in different wards of hospitals. In this regard, data were collected from February to June 2020 using individual, face-to-face, in-depth, semi-structured interviews and were analyzed using qualitative content analysis. Results The nurse without a nurse was a category introduced as an antecedent of presenteeism. In this respect, nurses experienced limited power, injustice, compulsory presence, inadequate structural facilities, damaged professional identity, manager-nurse disconnect, insufficient knowledge, physical and mental health complications, job stress, job burnout, multitasking, and impaired communication. Conclusion The nurse, who has been responsible for caring, supporting, advising, advocating, and educating the patient, has now been left without a nurse. In other words, not nursing the nurse has given rise to the emergence of presenteeism. It is recommended that the results of this study be used in making health policies. The results of this study can make nurses’ voices heard by health leaders and managers. A voice that has never been heard as it deserves.

scholarly journals How meeting centres continue to support people affected by dementia: report on UK COVID-19 impact

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Shirley Evans ◽  
Jennifer Bray ◽  
Dawn Brooker
Keyword(s):  
Social Adjustment ◽  
Social Engagement ◽  
Well Being ◽  
Structured Interviews ◽  
Content Type ◽  
Face To Face ◽  
People With Dementia ◽  
Coping Model ◽  
The Uk ◽  
And Coping

Purpose Because of COVID-19 restrictions, Meeting Centres (MCs) for people affected by dementia in the UK ceased to meet physically but continued to provide remote support. The aim was to understand the extent to which MCs were able to operate when physical meetings were not possible and how they achieved particularly in relation to the adaptation and coping model and practical, emotional and social adjustment. Design/methodology/approach Semi-structured interviews and focus groups were conducted with people affected by dementia, staff, volunteers, managers and trustees from MCs. Data were collected on the type and quantity of contact MCs had with people affected by dementia during lockdown. Data were coded and mapped against adaptation and coping strategies, i.e. practical understanding and empowerment, optimising emotional well-being and opportunities for social engagement. Findings A range of remote approaches, both technological (e.g. using online platforms) and non-technological (e.g. newsletters and post) were implemented alongside limited face-to-face contact. Regular MC activities were adapted using the different approaches. It was possible to map all the adaptation and coping model support strategies to the activities delivered in this way. MCs were able to adapt rapidly to continue to support people to adjust to change. Social implications Moving forward, combining approaches (usual MC and remote) means person-centred support could be optimized, addressing social isolation and reaching those who cannot attend MCs. Originality/value This paper offers new insight into the extent to which community-based support for people with dementia can continue when face-to-face contact is not possible because of COVID-19.

scholarly journals Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study

2020 ◽  
Author(s):  
Mehrnaz Ahmadi ◽  
Mahin Gheibizadeh ◽  
Maryam Rassouli ◽  
Abbas Ebadi ◽  
Marziyeh Asadizaker ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Health Care Providers ◽  
Healthcare Providers ◽  
Thalassemia Major ◽  
Stressful Situation ◽  
Care Providers ◽  
Structured Interviews ◽  
Factors Affecting ◽  
Face To Face ◽  
And Coping

Background: Uncertainty leads to a stressful situation in patients with thalassemia major that can dramatically affect their psychosocial coping ability, treatment process and disease outcomes, and reduce patients' quality of life. As one of the important factors affecting the health of thalassemia patients, understanding the concept of uncertainty is of major importance to health care providers especially nurses as the first line of exposure to these patients. The present study aimed to explore the experiences of uncertainty in patients with thalassemia major. Materials and Methods: The present qualitative study was conducted through in-depth face-to-face semi-structured interviews held with 18 patients with major thalassemia selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analyzed with conventional content analysis method of Landman and Graneheim using MAXQDA10 software. Results: Two main themes, including 'living in the shadow of anxiety' and 'coping with uncertainty' emerged from patients’ experiences of illness uncertainty of thalassemia. 'Living in the shadow of anxiety' included four categories of 'fear of complications', 'contradictory views on treatment', 'unknown future' and 'stigma'. 'Coping with uncertainty' included three categories of 'spiritual coping', 'psychosocial coping' and 'knowledge acquisition'. Conclusion: According to the results of this study, uncertainty is a major psychological stress in patients with thalassemia major. Healthcare providers should therefore consider the challenges and concerns faced by patients and, through utilizing appropriate training and communicational practices, plan interventions and strategies to empower patients for coping with uncertainty.

scholarly journals “Putting your own oxygen mask on first”: a qualitative study of siblings of adults with anorexia or bulimia

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Jannike Karlstad ◽  
Cathrine F. Moe ◽  
Mari Wattum ◽  
Ragni Adelsten Stokland ◽  
Berit S. Brinchmann
Keyword(s):  
Eating Disorders ◽  
Qualitative Study ◽  
Constructivist Grounded Theory ◽  
Adult Women ◽  
Theory Approach ◽  
Structured Interviews ◽  
Oxygen Mask ◽  
Core Category ◽  
The Family ◽  
And Coping

Abstract Background In families where one of the siblings has an eating disorder (ED), research indicates that the siblings without eating disorders (EDs) experience insufficient care and negative changes in family life. The illness then takes up a great deal of space within the family. Support from the siblings without EDs is considered to be important for the recovery of the sibling with ED. A key issue is how to involve siblings without EDs in treatment and establish what kind of support they themselves need. A majority of the research on EDs and family has focused on children and adolescents with EDs. The aim of this study is to expand knowledge about the experiences and coping strategies of sisters and brothers of adult women with anorexia nervosa or bulimia nervosa. Methods This qualitative study used a constructivist grounded theory approach. Individual semi-structured interviews were conducted with 10 sisters and brothers (aged 20–31 years). They were recruited from eating disorders and general psychiatrics units and from user organisations for patients with eating disorders within Norway. An iterative process of data collection, coding and analysis was employed in order to generate a theory about these participants’ experiences and strategies. Results The core category is “put your own oxygen mask on first”. It indicates that the siblings realize that they need to take care of themselves first, in order to be able to stay involved with their sister with the ED. The three subcategories; “taking a new role”, “distancing” and “adapted care” describe how the siblings handle their situation as the relatives of adult sisters with an ED. The siblings without ED became more responsible and independent and assumed a caregiving role. They downplayed their own needs to reduce their parents’ burden. This new role became difficult to fulfil and the siblings experienced that over time they needed more distance. Eventually, they developed a more manageable way of caring for their sister. Conclusions The findings suggest that the ED challenged the boundaries within the family. The siblings without ED assumed a caregiver role, gradually leading to exhaustion and the need to distance from the sister with the ED, to take care of themselves.

scholarly journals Telling Our Stories: Resilience during Resettlement for African Skilled Migrants in Australia

2021 ◽  
Vol 18 (8) ◽  
pp. 3954
Author(s):  
Lillian Mwanri ◽  
Leticia Anderson ◽  
Kathomi Gatwiri
Keyword(s):  
Cultural Values ◽  
South Australia ◽  
Qualitative Inquiry ◽  
Structured Interviews ◽  
Face To Face ◽  
Health And Wellbeing ◽  
African Migrants ◽  
Cultural Expectations ◽  
The Social ◽  
Resilience Factors

Background: Emigration to Australia by people from Africa has grown steadily in the past two decades, with skilled migration an increasingly significant component of migration streams. Challenges to resettlement in Australia by African migrants have been identified, including difficulties securing employment, experiences of racism, discrimination and social isolation. These challenges can negatively impact resettlement outcomes, including health and wellbeing. There has been limited research that has examined protective and resilience factors that help highly skilled African migrants mitigate the aforementioned challenges in Australia. This paper discusses how individual and community resilience factors supported successful resettlement Africans in Australia. The paper is contextualised within a larger study which sought to investigate how belonging and identity inform Afrodiasporic experiences of Africans in Australia. Methods: A qualitative inquiry was conducted with twenty-seven (n = 27) skilled African migrants based in South Australia, using face-to-face semi-structured interviews. Participants were not directly questioned about ‘resilience,’ but were encouraged to reflect critically on how they navigated the transition to living in Australia, and to identify factors that facilitated a successful resettlement. Results: The study findings revealed a mixture of settlement experiences for participants. Resettlement challenges were observed as barriers to fully meeting expectations of emigration. However, there were significant protective factors reported that supported resilience, including participants’ capacities for excellence and willingness to work hard; the social capital vested in community and family support networks; and African religious and cultural values and traditions. Many participants emphasised their pride in their contributions to Australian society as well as their desire to contribute to changing narratives of what it means to be African in Australia. Conclusions: The findings demonstrate that despite challenges, skilled African migrants’ resilience, ambition and determination were significant enablers to a healthy resettlement in Australia, contributing effectively to social, economic and cultural expectations, and subsequently meeting most of their own migration intentions. These findings suggest that resilience factors identified in the study are key elements of integration.

scholarly journals PARE0023 ORAL HEALTH IN RHEUMATOID ARTHRITIS: LISTENING TO PATIENTS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1297.2-1297
Author(s):  
J. Protudjer ◽  
C. Billedeau ◽  
C. Stavropoulou ◽  
A. Cholakis ◽  
R. Schroth ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Oral Health ◽  
Periodontal Disease ◽  
Oral Care ◽  
Structured Interviews ◽  
Face To Face ◽  
Oral Health Education ◽  
To Receive ◽  
Latent Content

Background:Rates of periodontal disease and tooth loss are increased in rheumatoid arthritis (RA). Periodontal disease may exacerbate RA inflammation and complicate RA care. Understanding factors that contribute to the increased burden of periodontal disease in RA is critical to improving oral health and possibly arthritis outcomes. People with RA may have unique needs and/or barriers to maintain oral health.Objectives:To determine from people with RA what are their experiences and perceptions about their oral health, their most important questions relating to oral health, and how they wish to receive oral health information.Methods:Semi-structured interviews were conducted with RA patients. Recorded interview transcripts underwent iterative content analysis. Transcripts were initially reviewed to develop a coding guide. Latent content, or larger themes, were then applied to the transcripts. Constructs were considered saturated when no new themes were identified with subsequent interviews. We report identified themes with representative quotes.Results:Interviews with 11 RA (10[91%] female; all on RA medication) averaged 19 minutes (range 8-31 minutes) and were mostly conducted face-to-face. Many believed RA medication contributed to dry mouth. Most participants had not previously considered other links between oral health and RA. Themes identified included the need for complicated oral health routines, barriers of cost and access to dental care, and shame relating to oral health (Table 1). Participants preferred to receive oral health education from their rheumatologists or dentists over printed or online resources.Conclusion:RA patients have unique needs relating to oral health and report poor oral quality of life. Strategies to optimize oral health in RA may include educational tools for optimizing oral self-care appropriate for RA, and improved access to oral care professionals who are aware of the needs of arthritis patients.Disclosure of Interests:Jennifer Protudjer: None declared, Corrie Billedeau: None declared, Chrysi Stavropoulou: None declared, Anastasia Cholakis: None declared, Robert Schroth: None declared, Carol Hitchon Grant/research support from: UCB Canada; Pfizer Canada

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