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 ‘Living in parallel worlds’ – bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study

2021 ◽  
pp. 026921632110017
Author(s):  
Cherith J Semple ◽  
Eilís McCaughan ◽  
Esther R Beck ◽  
Jeffrey R Hanna
Keyword(s):  
End Of Life ◽  
Psychosocial Adjustment ◽  
Family Life ◽  
Life Experience ◽  
Qualitative Interviews ◽  
Later Life ◽  
Support Service ◽  
Dependent Children ◽  
Bereaved Parents ◽  
Death Of A Parent

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents’ experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in ‘parallel worlds’ throughout the end of life period. In one world, ‘living in the moment’, cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as ‘intermitted glimpses that death is approaching’, shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly ‘falling off the cliff’; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

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

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)

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 Parental Concerns about the Future of Children with Autism: A Qualitative Study in Iran

2020 ◽  
Vol 11 (4) ◽  
pp. 739-746
Author(s):  
Fatemeh Ganjeh ◽  
Masoud Fallahi-Khoshknab ◽  
Forough Riahi ◽  
Eesa Mohammadi ◽  
Kourosh Zarea
Keyword(s):  
Qualitative Study ◽  
Developmental Stages ◽  
Life Experience ◽  
Research Priorities ◽  
Children With Autism ◽  
Well Being ◽  
Autism Spectrum ◽  
Life Transition ◽  
Structured Interviews ◽  
The Future

Introduction: Regarding the growing trend of autism spectrum disorder, the complex and lifelong nature of it and concerns of parents about the life experience and caring for an autistic child, especially with regard to their future life, to provide a suitable environment for the child to enjoy human rights in life is one of the research priorities in Iran. Therefore, this study aimed to explain parents' experiences in explaining their concerns about the future of the child in life. Materials and Methods: This qualitative study was performed on the parents of autistic children referred to Yas and Nahal rehabilitation centers in Arak and Ahvaz. A total of 8 parents of children with autism were enrolled in the study using purposeful sampling method. Data were collected by semi-structured interviews and field notes and analyzed using MAXQUDA10 software. Results:  The results of the data analysis have led to the emergence of three main categories "self-sufficiency and independency in life", "transition to adolescence" and "child education and learning", which outlines the different dimensions of parental concern related to the child in the future life. Discussion and Conclusion: Based on the results of this study, designing, organizing and implementing effective and efficient interventions in educational, therapeutic, rehabilitation, welfare, legal and social areas appropriate to the developmental stages of the child, with the aim of responding to the needs of people with autism spectrum disorders and their families are increasingly needed in the successful transition to the adulthood and  maintaining and promoting their well-being.

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 Consequences of ‘conversations not had’: insights into failures in communication affecting delays in hospital discharge for older people living with frailty

2020 ◽  
Vol 25 (4) ◽  
pp. 213-219 ◽  
Author(s):  
Sabi Redwood ◽  
Bethany Simmonds ◽  
Fiona Fox ◽  
Alison Shaw ◽  
Kyra Neubauer ◽  
...  
Keyword(s):  
Older People ◽  
End Of Life ◽  
Hospital Discharge ◽  
Acute Care ◽  
Health Care Professionals ◽  
Comparative Method ◽  
Care Hospital ◽  
Structured Interviews ◽  
Effective Discharge ◽  
Health And Social Care

Objectives Older people living with frailty (OPLWF) are often unable to leave hospital even if they no longer need acute care. The aim of this study was to elicit the views of health care professionals in England on the barriers to effective discharge of OPLWF. Methods We conducted semi-structured interviews with hospital-based doctors and nurses with responsibility for discharging OPLWF from one large urban acute care hospital in England. The data were analysed using the constant comparative method. Results We conducted interviews with 17 doctors (12 senior doctors or consultants and 5 doctors in training) and six senior nurses. Some of our findings reflect well-known barriers to hospital discharge including service fragmentation, requiring skilled coordination that was often not available due to high volumes of work, and poor communication between staff from different organizations. Participants’ accounts also referred to less frequently documented factors that affect decision making and the organization of patient discharges. These raised uncomfortable emotions and tensions that were often ignored or avoided. One participant referred to ‘conversations not had’, or failures in communication, because difficult topics about resuscitation, escalation of treatment and end-of-life care for OPLWF were not addressed. Conclusions The consequences of not initiating important conversations about decisions relating to the end of life are potentially far reaching not only regarding reduced efficiency due to delayed discharges but also for patients’ quality of life and care. As the population of older people is rising, this becomes a key priority for all practitioners in health and social care. Evidence to support practitioners, OPLWF and their families is needed to ensure that these vital conversations take place so that care at the end of life is humane and compassionate.

scholarly journals GPs’ decisions about prescribing anticipatory medicines at the end of life: a qualitative study

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X702809
Author(s):  
Ben Bowers ◽  
Kristian Pollock ◽  
Sam Barclay ◽  
Stephen Barclay
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
End Of Life ◽  
Thematic Analysis ◽  
Symptom Management ◽  
Symptom Relief ◽  
Structured Interviews ◽  
Family Experiences ◽  
Decision Making Processes ◽  
Purposive Sample

BackgroundGPs have a central role in decisions about prescribing anticipatory medications (AMs) to help control symptoms at the end of life. Little is known about GPs’ decision-making processes in prescribing AMs and the subsequent use of prescribed drugs.AimTo explore GPs’ decision-making processes in the prescribing and use of AMs for patients at the end of life.MethodA qualitative interpretive descriptive enquiry with a purposive sample of 13 GPs working across one English county. Data was collected in 2017 via semi-structured interviews and analysed inductively using Braun and Clarke’s thematic analysis.ResultsThree themes were constructed from the data: 1) ‘Something we can do’: AMs were a tangible intervention GPs felt they could offer to provide symptom relief for patients approaching death. 2) ‘Getting the timing right’: the prescribing of AMs was recognised as a harbinger of death for patients and families. GPs preferred to prescribe drugs weeks before death was expected, while recognising this meant that many prescribed AMs were never used. 3) ‘Delegating care while retaining accountability’: GPs relied on nurse to assess when to administer drugs and keep them updated about their use.ConclusionGPs view AMs as key to symptom management for dying people. AMs are routinely prescribed even though they are often not used. In order to feel comfortable delegating care, GPs need regular access to nurses and trust in their skills to administer drugs appropriately. Patient and family experiences of AMs, and their preference for involvement in decision-making about their use warrant urgent investigation.

The enactment stage of end-of-life decision-making for children

2018 ◽  
Vol 17 (2) ◽  
pp. 165-171
Author(s):  
Jane Elizabeth Sullivan ◽  
Lynn Heather Gillam ◽  
Paul Terence Monagle
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Medical Intervention ◽  
Process Time ◽  
Decision Making Process ◽  
Structured Interviews ◽  
Bereaved Parents ◽  
Process Factors ◽  
End Of Life Decision ◽  
Life Decision

AbstractObjectivesTypically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors’ and parents’ roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents’ experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process.MethodsA qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed.ResultsTwenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child’s condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people’s actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention.Significance of resultsA novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician’s support for parents as they care for their child.

Common dedication to facilitating good dying experiences: Qualitative study of end-of-life care professionals’ attitudes towards voluntary assisted dying

2019 ◽  
Vol 33 (6) ◽  
pp. 562-569 ◽  
Author(s):  
Sarah-May Blaschke ◽  
Penelope Schofield ◽  
Keryn Taylor ◽  
Anna Ugalde
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Policy Development ◽  
Sampling Strategy ◽  
Assisted Dying ◽  
Life Care ◽  
Structured Interviews ◽  
Moral Philosophies

Background: Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals’ role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered. Aim: To explore end-of-life care professionals’ attitudes towards voluntary assisted dying 6 months prior to vote on legalization. Design: Qualitative study using textual data collected through semi-structured interviews. Purposive sampling strategy used to collect a broad representation of perspectives. Audio-recorded interviews were transcribed verbatim and subjected to qualitative descriptive analysis techniques. Participants: A total of 16 health professionals with experience in caring for people with life-limiting illness. Results: Participants reported two overarching positions grounded in differing moral philosophies with compelling arguments both for and against legalization of voluntary assisted dying. A third and common line of argument emerged from areas of shared concern and uncertainty about the practical consequences of introducing voluntary assisted dying. While a diversity of opinion was evident, all participants advocated for more public education and funding into end-of-life care services to make high-quality care equitable and widely available. Conclusion: Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care.

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