A Qualitative Study on Prehabilitation before Total Hip and Knee Arthroplasties: Integration of Patients’ and Clinicians’ Perspectives

To explore and integrate the perspectives of patients with hip and knee osteoarthritis (OA), their caregivers, and clinicians who are working with these patients about current preoperative rehabilitation (“prehab”) content and delivery. Participants were individuals with hip (n = 46) or knee OA (n = 14), their family caregivers (n = 16), and clinicians working with patients with hip/knee OA (n = 15). In semi-structured interviews and focus groups, participants answered questions regarding barriers to accessing prehab, gaps in prehab content, learning preferences, and delivery formats. Interviews were audiotaped and transcribed verbatim. Data were analyzed using Qualitative Description method. Four main themes were identified: (1) “I didn’t get any of that” discusses barriers in accessing prehab; (2) “I never got a definitive answer” highlights necessary information in prehab; (3) “better idea of what’s going to happen” emphasizes the positive and negative aspects of prehab; (4) “a lot of people are shifting to online” describes participants’ perspectives on online education. Our findings confirm the need for prehab education and the potential of online prehab education. The results inform the development of prehab educational modules based on users’ input.

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“How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

Journal of Parkinson s Disease ◽

10.3233/jpd-191884 ◽

2020 ◽

Vol 10 (4) ◽

pp. 1631-1642

Author(s):

Herma Lennaerts-Kats ◽

Anne Ebenau ◽

Maxime Steppe ◽

Jenny T. van der Steen ◽

Marjan J. Meinders ◽

...

Keyword(s):

Parkinson’S Disease ◽

Palliative Care ◽

Parkinson's Disease ◽

Qualitative Study ◽

Family Caregivers ◽

Interpretative Phenomenological Analysis ◽

Healthcare Professionals ◽

Structured Interviews ◽

Practice Nurses ◽

Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

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Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study

International Psychogeriatrics ◽

10.1017/s1041610219001017 ◽

2019 ◽

Vol 32 (2) ◽

pp. 255-265

Author(s):

Mayumi Nishimura ◽

Ayako Kohno ◽

Jenny T. van der Steen ◽

Toru Naganuma ◽

Takeo Nakayama

Keyword(s):

Qualitative Study ◽

End Of Life ◽

Family Caregivers ◽

Life Experience ◽

Central Position ◽

Structured Interviews ◽

Cultural Backgrounds ◽

Term Care ◽

Family Structures ◽

People With Dementia

ABSTRACTObjectives:To conceptualize a “good end of life” for people with dementia from the perspectives of bereaved family caregivers in Japan.Design and participants:A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.Results:From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a “Peaceful Death” while “Maintaining Personhood” at a “Preferred Place” allowing for feelings of “Life Satisfaction.” A “Preferred Place” emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, “Maintaining Personhood.” However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a “Preferred Place.”Conclusions:Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.TRIAL REGISTRATION NUMBEREthics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2)

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Living with Parkinson’s disease and connected to the duodopa pump: A qualitative study

Qualitative Research in Medicine & Healthcare ◽

10.4081/qrmh.2020.9427 ◽

2021 ◽

Vol 4 (3) ◽

Author(s):

Yolanda María Chacón Gámez ◽

Nikola Biller-Andorno

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Qualitative Study ◽

Family Caregivers ◽

Multimodal Approach ◽

Structured Interviews ◽

Advantages And Disadvantages

Parkinson’s Disease (PD) is a complex and heterogeneous disease that has a major impact on the lives of patients and their family caregivers. The duodopa pump is one of the treatments options for advanced PD. The experience of patients with this treatment is largely unexplored, however. This study is based on the experiences of patients with PD as well as their family caregivers using the pump. We take a multimodal approach that includes narrative semi-structured interviews and drawings. This methodology helps participants, particularly those with difficulty articulating themselves, express their experience with the disease and their perception of the treatment. We believe that the use of drawings complementing semi-structured interviews offers additional insights into the participants’ perception of PD and the pump. In this article we focus on the following topics: the participants’ perception of PD and the pump, the reasons for choosing the pump over alternatives, and the advantages and disadvantages of this treatment for patients and family caregivers. Our findings show that the participants consider PD as a complex and unpredictable disease that changed their lives and affect everyone differently, while the pump makes the disease less changeable and more manageable.

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Challenges in Access to Support Resources for Diabetic Patients: A Qualitative Study in Deprived Areas of Iran

Chronic Illness ◽

10.1177/17423953211049438 ◽

2021 ◽

pp. 174239532110494

Author(s):

Arezoo Shahsavari ◽

Fatemeh Estebsari ◽

Foroozan Atashzadeh-Shoorideh ◽

Mahnaz Ilkhani

Keyword(s):

Type 2 Diabetes ◽

Content Analysis ◽

Qualitative Study ◽

Family Caregivers ◽

Diabetic Patients ◽

Structured Interviews ◽

Healthcare Organizations ◽

Support Resources ◽

Deprived Areas

Objectives This study aimed to identify the perceptions of challenges in access to diabetes-related support resources among patients with type 2 diabetes and their family caregivers. Methods This qualitative study was conducted with 18 patients with type 2 diabetes and nine of their family caregivers, using the conventional content analysis method, in 2020 in Lorestan Province, Iran. The participants were selected through purposive sampling and the process continued until the data was saturated. Thirty semi-structured interviews, carried out from February to April 2020, were used to collect the data; they were analyzed using Graneheim and Lundman’s content analysis (2004). Results The study showed two main categories of structural challenges (subcategories: shortage of skilled professionals and defects in executive processes) and destructive inefficiencies (subcategories: service bottlenecks, uncertain support, and irresponsibility of medical team), indicating the dimensions of the participants’ perceptions of barriers to support. Discussion The findings of the study showed that barriers relating to the structure and function of healthcare organizations were among the most important challenges perceived by patients with diabetes when pursuing their care. However, there may be other barriers that have not been addressed due to the lack of support resources in deprived areas and the lack of awareness of patients.

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Patient and clinician experiences of a computerised cognitive battery for use after concussion: a preliminary qualitative study

Brain Impairment ◽

10.1017/brimp.2020.14 ◽

2020 ◽

pp. 1-16

Author(s):

C. Macleod ◽

L. J. Surgenor ◽

W. Levack ◽

J. Hackney ◽

A. Theadom ◽

...

Keyword(s):

Qualitative Study ◽

Cognitive Testing ◽

Qualitative Description ◽

Future Research ◽

Structured Interviews ◽

Neuropsychological Battery ◽

Negative Experiences ◽

Select Group ◽

Clinician Experiences ◽

Neurological Research

Abstract Objective: The Cognition Battery of the National Institute of Health (NIH) Toolbox for Assessment of Neurological and Behavioural Function is a computerised neuropsychological battery recommended for clinical practice, neurological research and clinical trials. We investigated the utility of the NIH Toolbox Cognition Battery (NIHTB-CB) for people with concussion. Methods: In this small qualitative study, semi-structured interviews were conducted with five adults with concussion who were participating in a larger study using the NIHTB-CB. Three clinician participants and two cultural advisors familiar with the tool were also interviewed. Interview transcripts were analysed using a general thematic approach and qualitative description. Results: Participants described both positive and negative experiences with the NIHTB-CB and using qualitative description, their experiences were organised into three broad themes: (1) using technology for cognitive testing made sense, (2) there were some cultural relevance questions and (3) cognitive testing after concussion could have challenges. They were positive about the computerised format and range of domains assessed for the concussion context but identified the contextual relevance of some content as having potential to impact on performances. Conclusion: This was a small study examining the experiences of a select group of participants, but nevertheless does suggest a need for future research validating the NIHTB-CB for use in different cultural and clinical contexts.

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Perceptions, beliefs, and needs of Japanese people with knee osteoarthritis during conservative care: A qualitative study

10.21203/rs.3.rs-558422/v1 ◽

2021 ◽

Author(s):

Daisuke Uritani ◽

Akane Ikeda ◽

Toru Shironoki ◽

Kentaro Matsubata ◽

Yuto Mutsura ◽

...

Keyword(s):

Qualitative Study ◽

Japanese Patients ◽

Interview Data ◽

Evidence Based ◽

Theory Approach ◽

Structured Interviews ◽

Japanese People ◽

Extensive Experience ◽

Conservative Care ◽

Knee Oa

Abstract Background Patients’ perceptions and beliefs of disease could be influenced by their lifestyle and culture. Although it is important to understand their perceptions and beliefs toward disease to prevent and manage osteoarthritis (OA) through conservative care, this topic has not been investigated in Japanese people with knee OA. Therefore, this qualitative study aims to clarify how Japanese patients with knee OA experience and perceive their symptoms and disabilities, and how they face them during conservative care.Methods Participants were recruited by purposive sampling. Face-to-face, semi-structured interviews were conducted with nine patients (2 men and 7 women, mean age, 74.3±5.5 years) with knee OA until data saturation was reached. Interview data comprised participants’ accounts of particular personal experiences of living with knee OA, including their perceptions and attitudes toward knee OA-related symptoms and disabilities. Two physiotherapists (one with extensive experience conducting qualitative studies) and four physiotherapy students conducted the interviews. Recorded interview data were transcribed verbatim in Japanese. Data analysis, including developing a coding scheme, was conducted based on a grounded theory approach. Results Six categories were extracted from the data: “self-analysis on the cause of knee OA,” “difficulties in daily life due to knee symptoms,” “psychological barrier,” “how to deal with knee pain and difficulty in moving,” “importance of connecting with others,” and “information considered useful to cope with knee OA.” Japanese patients with knee OA desired evidence-based information and to connect with other people in the same situation to solve problems related to their condition. Conclusions To address patients’ concerns, medical professionals should carry out careful interviews and obtain information regarding patients’ past experiences, and understand their experiences related to knee OA. Symptoms and difficulties experienced by patients with knee OA should be managed by evidence-based information integrating their perceptions and beliefs toward knee OA.

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‘It all depends!’: A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers

Palliative Medicine ◽

10.1177/0269216319845794 ◽

2019 ◽

Vol 33 (7) ◽

pp. 802-811 ◽

Cited By ~ 9

Author(s):

Katrin Gerber ◽

Barbara Hayes ◽

Christina Bryant

Keyword(s):

Decision Making ◽

End Of Life ◽

Family Caregivers ◽

Terminally Ill ◽

Qualitative Description ◽

Place Of Death ◽

Care Hospital ◽

Structured Interviews ◽

Terminally Ill Patients ◽

End Of Life Decision

Background: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life. Aim: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death. Design: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description. Setting/participants: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia. Results: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences. Conclusions: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

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Gynaecologists’ views on the management of Vaginal Vault Prolapse: A qualitative study

Pakistan Journal of Medical Sciences ◽

10.12669/pjms.38.3.5215 ◽

2022 ◽

Vol 38 (3) ◽

Author(s):

Omaema Al-Baghdadi ◽

Christian Barnick ◽

Garima Srivastava ◽

Hassan Elbiss

Keyword(s):

Qualitative Study ◽

Large Scale ◽

Vaginal Surgery ◽

Vaginal Vault Prolapse ◽

Qualitative Description ◽

University Hospital ◽

Vaginal Vault ◽

Structured Interviews ◽

Vault Prolapse ◽

Creative Commons

Objective: This study examined gynaecologists’ experience and views on the management of vaginal vault prolapse (VVP) using laproscopic sarcocolpopexy (LSCP) versus open sarcocolpopexy (OSCP). Methods: In a qualitative study conducted at the University of Surrey and Homerton University Hospital, UK, from 2016 to 2017, semi-structured interviews were conducted with 15 consultants experienced in minimal access surgery or urogynecology. Interviews were recorded and transcripts were analyzed using the qualitative description (QD) approach. Results: Eight broad themes emerged: VVP management, LSCP for management of VVP, OSCP and vaginal surgery with or without mesh use in VVP management, laparoscopic training and support as well as surgeons’ attitude towards LSCP. All participants acknowledged the importance of LSCP in the management of post-hysterectomy VVP as benefits outweighed risks in their view. OSCP was considered suitable in very specific circumstances. Vaginal surgery could be an excellent alternative to OSCP bearing in mind long-term efficacy and sexual activity in young women. Most participants agreed with national recommendations to avoid use of mesh in vaginal surgery for VVP and expressed the view that it should be done in specialised centres by trained surgeons who do such operations. Conclusions: This study showed that the acceptability of LSCP was dependent on participants’ experience and consideration of the balance between patient’s goals and potential risks. It provides useful guidance for future large-scale projects. doi: https://doi.org/10.12669/pjms.38.3.5215 How to cite this:Al-Baghdadi O, Barnick C, Srivastava G, Elbiss HM. Gynaecologists’ views on the management of Vaginal Vault Prolapse: A qualitative study. Pak J Med Sci. 2022;38(3):---------. doi: https://doi.org/10.12669/pjms.38.3.5215 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Explain the Experience of Family Caregivers Regarding Care of Alzheimer's Patients: A Qualitative Study

Frontiers in Psychology ◽

10.3389/fpsyg.2021.699959 ◽

2021 ◽

Vol 12 ◽

Author(s):

Hadis Ashrafizadeh ◽

Mahin Gheibizadeh ◽

Maryam Rassouli ◽

Fatemeh Hajibabaee ◽

Shahnaz Rostami

Keyword(s):

Content Analysis ◽

Qualitative Study ◽

Family Caregivers ◽

Personal Growth ◽

Structured Interviews ◽

Term Care ◽

Care Experience ◽

Four Dimensions ◽

Data Saturation

Introduction: Due to the long-term and progressive nature of Alzheimer's disease, these patients need caregivers who will be responsible for their long-term care and who may then experience an increasing burden related to the progressive disease course, so it is important to understand the experiences of caregivers. The aim of this study was to explain the experience of family caregivers regarding care of Alzheimer's patients.Methods: The present qualitative study employed a conventional content analysis approach and was conducted in Iran in 2020. This research was done through in-depth and semi-structured interviews with 11 qualified caregivers enrolled in a purposive sampling method. Interviews continued until data saturation. Data analysis was performed simultaneously with data collection. Interviews were recorded, transcribed and analyzed through Graneheim and Lundman style content analysis and data management was done with MAXQDA software. In order to achieve the accuracy and validity of the study, the Four-Dimensions Criteria (FDC) by Lincoln and Guba, credibility, dependability, confirmability, and transformability were considered and used.Results: A total of 11 caregivers with mean age and standard deviation 48, ±26.12 participated in the study. The acquired data were put in two main categories of “burnout and exhaustion” with six subcategories and “excellence and personal growth” with three subcategories.Conclusion: In this study, we found that perceptions of caregivers' role were not the same among study participants, who experienced both positive and negative dimensions of care provision to AD patients. The care experience has a spectrum that, in some people, leads to positive outcomes such as growth. A major part of caregiver challenges is related to the burden of caregiving strain and the erosive nature of the disease. Therefore, health planners should identify the challenges, pain and suffering of caregivers and seek to address them through appropriate strategies.

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“Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study

BMC Palliative Care ◽

10.1186/s12904-019-0493-7 ◽

2019 ◽

Vol 18 (1) ◽

Cited By ~ 2

Author(s):

Jennifer Im ◽

Susanna Mak ◽

Ross Upshur ◽

Leah Steinberg ◽

Kerry Kuluski

Keyword(s):

Heart Failure ◽

Older Adults ◽

Qualitative Study ◽

End Of Life ◽

Family Caregivers ◽

Structured Interviews ◽

Serious Illness ◽

Alternative Approaches ◽

Understanding Of Illness ◽

End Of Life Communication

Abstract Background Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers. Methods In a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data. Results Four themes were identified in the context of participants’ understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members. Conclusion The findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life.

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