scholarly journals A qualitative study of bereaved relatives’ end of life experiences during the COVID-19 pandemic

2021 ◽  
pp. 026921632110042
Author(s):  
Jeffrey R Hanna ◽  
Elizabeth Rapa ◽  
Louise J Dalton ◽  
Rosemary Hughes ◽  
Tamsin McGlinchey ◽  
...  
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Member ◽  
Social Care ◽  
Life Experiences ◽  
Physical Contact ◽  
Clear Understanding ◽  
Structured Interviews ◽  
Global Pandemic ◽  
Health And Social Care

Background: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families’ needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. Aim: To explore relatives’ experiences and needs when a family member was dying during the COVID-19 pandemic. Design: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. Setting/participants: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. Results: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member’s condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of ‘saying goodbye’ in a pandemic. Conclusions: Health and social care professionals can have an important role in mitigating the absence of relatives’ visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to ‘say goodbye’.

scholarly journals Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037483
Author(s):  
Holly Standing ◽  
Rebecca Patterson ◽  
Mark Lee ◽  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Information Sharing ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Care ◽  
Hospital Admissions ◽  
Sufficient Information ◽  
Life Care ◽  
Health And Social Care

ObjectivesTo explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.DesignQualitative study using interviews and focus groups.SettingHealth and Social Care Services in the North of England.Participants71 participants, 62 health and social care professionals, 9 patients and family members.ResultsFour key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well—paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.ConclusionsEPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

scholarly journals Understanding the relationship transitions and associated end of life clinical needs of young adults with life-limiting illnesses: A triangulated longitudinal qualitative study

2016 ◽  
Vol 4 ◽  
pp. 205031211666642 ◽  
Author(s):  
Bridget Johnston ◽  
Divya Jindal-Snape ◽  
Jan Pringle ◽  
Libby Gold ◽  
Jayne Grant ◽  
...  
Keyword(s):  
Young Adults ◽  
Young Adult ◽  
Qualitative Study ◽  
End Of Life ◽  
Thematic Analysis ◽  
Significant Others ◽  
Evidence Base ◽  
Clear Understanding ◽  
Structured Interviews ◽  
Relationship Transitions

Background: Care of young adults with life-limiting illnesses can often be complex due to the fact that they are growing and developing within the continuing presence of their illness. There is little research conducted nationally and internationally, which has examined the life issues of young adults or taken a longitudinal approach to understand such issues over a period of time. Aim: To gain clear understanding of one particular and pertinent life issue—relationship transition—occurring in the context of being a young adult with a life-limiting illness and the clinical needs arising from this. Design: This was a triangulated, longitudinal, qualitative study involving young adults with life-limiting illnesses and their significant others, namely, family members and healthcare professionals. Semi-structured interviews were conducted with participants and analysed using thematic analysis. Clinical case note reviews were also carried out. Setting/participants: A total of 12 young adults (aged between 17 and 23 years) from 2 hospices and 22 nominated significant others participated in a total of 58 interviews. Results: Thematic analysis revealed 4 main themes and 11 subthemes. The main themes were ‘Dependence dichotomy’, ‘In it together’, ‘Biographical uncertainty’, and ‘Conserving integrity’. These themes helped to establish the nature of relationship transitions that the young adult participants from the study experienced and additionally allowed insight into their possible needs at their end of life. Conclusion: This study has identified the nature of relationship transitions pertinent to young adults and has highlighted associated end of life clinical needs. This study can influence further research into the transitions and end of life needs of this particular patient group receiving palliative care, while informing the lacking evidence base which exists internationally.

scholarly journals ‘Don’t forget the children’: a qualitative study when a parent is at end of life from cancer

2021 ◽  
Author(s):  
Eilís McCaughan ◽  
Cherith J. Semple ◽  
Jeffrey R. Hanna
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Life Experience ◽  
Psychosocial Support ◽  
Structured Interviews ◽  
Funeral Directors ◽  
Bereaved Parents ◽  
Health And Social Care ◽  
Death Of A Parent ◽  
The Future

Abstract Purpose Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (< 18 years old), with requirement for support from professionals. The aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. Methods This is an interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs) (n32) and funeral directors (n23). Data were analysed thematically and triangulated. Results Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life and (4) preparing for the future. Conclusions Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is ‘well enough’ to parent enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals.

scholarly journals ‘Don’t Forget the Children’: A Qualitative Study When a Parent Is at End of Life From Cancer

2021 ◽  
Author(s):  
Eilis McCaughan ◽  
Cherith J Semple ◽  
Jeffrey R Hanna
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Life Experience ◽  
Psychosocial Support ◽  
Structured Interviews ◽  
Funeral Directors ◽  
Bereaved Parents ◽  
Health And Social Care ◽  
Death Of A Parent ◽  
The Future

Abstract Purpose: Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (<18 years old); with requirement for support from professionals. This aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. Methods: An interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs), (n32) and funeral directors (n23) Data were analysed thematically and triangulated.Results: Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope, and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life, and (4) preparing for the future.Conclusions: Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is ‘well enough’ to parent, enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals.

scholarly journals Occupational therapists’ experiences of enabling people to participate in sport

2020 ◽  
pp. 030802262097394
Author(s):  
Deborah Bullen ◽  
Channine Clarke
Keyword(s):  
Qualitative Study ◽  
Occupational Therapy ◽  
Thematic Analysis ◽  
Social Care ◽  
Occupational Therapists ◽  
Phenomenological Approach ◽  
Scope Of Practice ◽  
Local Populations ◽  
Care Services ◽  
Health And Social Care

Introduction In response to growing demands on health and social care services there is an emphasis on communities addressing the needs of local populations to improve lives and reduce inequalities. Occupational therapists are responding to these demands by expanding their scope of practice into innovative settings, such as working with refugees, the homeless and residents of nursing homes, and within sport and leisure environments. The benefits of sport are widely acknowledged, and this paper argues that occupational therapists could play a pivotal role in enabling people to participate. Method This qualitative study drew on a phenomenological approach and used interviews and thematic analysis to explore five occupational therapists’ experiences of enabling people to participate in sport. Findings Findings revealed that participants demonstrated the uniqueness of occupational therapy when enabling people to participate in sport and practised according to their professional philosophy. There were opportunities to reach wider communities and promote the value of occupational therapy by collaborating with organisations, but there were also challenges when working outside of traditional settings. Conclusion The study emphasises the unique skills occupational therapists can bring to this setting. It highlights opportunities to expand their practice, to forge new partnerships in sports and leisure environments, and to address the national inactivity crisis.

scholarly journals The importance of a room with a view for older people with limited mobility

2018 ◽  
Vol 19 (4) ◽  
pp. 273-285 ◽  
Author(s):  
Charles Musselwhite
Keyword(s):  
Older People ◽  
Design Methodology ◽  
Social Care ◽  
Structured Interviews ◽  
Content Type ◽  
Limited Mobility ◽  
Human Element ◽  
Health And Social Care ◽  
Vantage Points ◽  
Practical Implications

Purpose The purpose of this paper is to examine how older people who are almost entirely housebound use a view from their window to make sense of the world and stay connected to the outside space that they cannot physically inhabit. Design/methodology/approach Semi-structured interviews with 42 individuals were carried out who were living at home, were relatively immobile and had an interesting view outside they liked from one or more of their windows. Findings The findings suggest that immobile older people enjoy watching a motion-full, changing, world going on outside of their own mobility and interact and create meaning and sense, relating themselves to the outside world. Practical implications Findings suggest that those working in health and social care must realise the importance of older people observing the outdoors and create situations where that is enabled and maintained through improving vantage points and potentially using technology. Originality/value This study builds and updates work by Rowles (1981) showing that preference for views from the window involves the immediate surveillance zone but also further afield. The view can be rural or urban but should include a human element from which older people can interact through storytelling. The view often contains different flows, between mundane and mystery and intrigue, and between expected and random.

scholarly journals Facilitating integrated delivery of services across organisational boundaries: Essential enablers to integration

2017 ◽  
Vol 80 (5) ◽  
pp. 302-309
Author(s):  
Stephanie Best
Keyword(s):  
United Kingdom ◽  
Qualitative Study ◽  
Service Provision ◽  
Social Care ◽  
Occupational Therapists ◽  
Leadership Communication ◽  
The United Kingdom ◽  
Health And Social Care ◽  
Integration Of Services ◽  
Integrated Delivery

Introduction Integrating services is a key tenet to developing services across the United Kingdom. While many aspects of integration have been explored, how to facilitate integration of services remains unclear. Method An exploratory qualitative study was undertaken in 2015 to explore occupational therapists’ perceptions on integrating service provision across health and social care organisational boundaries. The views of practitioners who had experienced integration were sought on a range of aspects of integrating services. This paper focuses on the facilitators for delivering integration and the essential enablers are identified. Findings Numerous factors were noted to facilitate integration and three essential enablers were highlighted. Leadership, communication and joint education were recognised as playing a central role in integrating services across organisational boundaries; without these three essential enablers, integration is liable to fail. Conclusion Integration is a process rather than an event; continued emphasis will be required on leadership, communication and joint education to progress integration achievements made to date.

Effectiveness of Educational Programs on Palliative and End-of-life Care in Promoting Perceived Competence Among Health and Social Care Professionals

2021 ◽  
pp. 104990912110385
Author(s):  
Kelly Tsz Ching Wong ◽  
Amy Yin Man Chow ◽  
Iris Kwan Ning Chan
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Social Workers ◽  
End Of Life Care ◽  
Social Care ◽  
Self Care ◽  
Perceived Competence ◽  
Educational Programs ◽  
Life Care ◽  
Health And Social Care

Background: There is a growing need for palliative care for patients near the end of life and their caregivers. Palliative and end-of-life care (EoLC) education are recommended for all health care (e.g., physicians, nurses, and allied health practitioners) and social care professionals (e.g., social workers) to ensure the quality of services. However, less attention has been afforded to generic, in contrast to specialized, EoLC education. This study evaluated the effectiveness of a series of short-term generic EoLC educational programs for health and social care professionals. Method: A pre-post survey design was adopted, focusing on different EoLC core competences. Results: Significant improvement was observed in all perceived competences after the educational programs, regardless of participants’ occupation or EoLC experience. Perceived competence in self-care was rated significantly higher than all other competences prior to the programs. Healthcare professionals rated significantly higher on competence in symptom management than social workers. Scores on communication skill and self-care competences were significantly higher following longer (i.e., 16-24 hours) than shorter (i.e., 4-8 hours) programs. Conclusion: Generalist palliative/EoLC educational programs may enable health and social care professionals to refresh and extend their knowledge and skills and enhance their perceived competence in providing EoLC. Further research on generalist palliative/EoLC education is needed to examine the impact of continuing training on professionals’ actual practice in EoLC and palliative care.

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