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Abstract

Background:

An essential component of residential hospice care is the provision of high quality palliative care. The perspectives of quality of care from palliative care patients and bereaved caregivers have increasingly been studied to guide quality improvements.

Aim:

The study aimed to explore the experiences and perceptions of bereaved caregivers of patients who died in residential hospice during the coronavirus disease-19 (COVID-19) pandemic to determine perceptions of quality of care, caregiver grief and bereavement, and the impact of the COVID-19 pandemic.

Design:

Qualitative exploratory study using secure, web-based semistructured interviews. Data were analyzed using thematic analysis.

Setting/Participants:

A total of 15 bereaved caregiver participants were recruited from two residential hospice sites in Ottawa, Ontario.

Results:

Participants identified several factors that impacted the quality of care in residential hospice, including the impact of the COVID-19 pandemic itself. The findings are presented in three main themes: (1) quality of residential hospice end-of-life care; (2) caregiver perceptions of their grief and bereavement; and (3) impact of the COVID-19 pandemic on hospice quality of care and caregiver bereavement.

Conclusions:

The COVID-19 pandemic had a significant impact on the patient and caregivers experience of hospice, including perception of quality of care and caregiver experience of grief and bereavement.

Introduction

The global coronavirus disease-19 (COVID-19) pandemic impacted health care systems and health care quality in numerous ways, including palliative and end-of-life care programs and services.¹ Studying the impact of the pandemic on quality of care, including palliative and end-of-life care, is critically important but difficult to measure. Specifically, the impact of the COVID-19 pandemic on the quality-of-care patients received at end of life in residential hospice and subsequent caregiver grief and bereavement is not known and further research is needed.

Hospice Care Ottawa is a community-based charitable organization which provides palliative and end-of-life programs and services, including residential hospice end-of-life care in Ottawa, Ontario. To guide quality improvement, palliative care quality standards within Ontario, Canada, were developed by The Ontario Palliative Care Network² and Health Quality Ontario.^3,4 Hospice Palliative Care Ontario⁵ is a provincial association that provides accreditation to hospices across Ontario to ensure the provision of high-quality hospice palliative care. To measure quality, patient and caregiver reported outcomes in palliative care through quantitative or qualitative research methods have increasingly been studied, and the importance of patient and caregiver voices and perspectives is becoming more widely recognized and described in the literature.^6–8 Palliative care quality, including residential hospice care quality, can be measured through population-based administrative datasets, clinical datasets, as well as perceptions of care quality as reported by patients and/or their caregivers.⁹ Important palliative care outcomes or metrics from the perspectives of patients or their caregivers are more difficult to measure and therefore less reported in the literature.⁹ Quantitative and qualitative studies have provided evidence that determining the perspectives of bereaved caregivers can identify priority areas for improvement in the quality of care provided to patients and their families in residential hospice.^10,11

Prolonged grief disorder (PGD) is a severe emotional response after a death that lasts longer than usual and causes functional or societal impairment.¹² The impact of the COVID-19 pandemic on bereaved caregivers of patients who died in acute care hospital has been well described, and studies published during the COVID-19 pandemic have suggested an increased risk of bereaved caregivers experiencing severe grief symptoms compared to prepandemic.^13,14 One study examined the prevalence of severe grief in family members who were bereaved during the COVID-19 pandemic and found that close to 30% experienced severe grief symptoms compared with prepandemic rates of 2%–3%.¹³ The risk of experiencing severe grief symptoms was increased regardless of the cause of death (COVID-19 death or non-COVID-19 death). Furthermore, a study of patients who died in hospital during wave 1 of the COVID-19 found decreased family in-person presence at the bedside for patients at end of life.¹⁴ Similarly, a national online survey of bereaved adults in the United Kingdom found that deaths in health care institutions during the COVID-19 pandemic were associated with being less able to visit in-person and being unable to “say goodbye as wanted.”¹⁵ The authors of these studies noted that the consequences of the reduction in in-person presence are unclear, but likely have implications on subsequent grief of bereaved caregivers and risk of development of PGD.¹²

The primary research aim of this qualitative study was to explore the experiences and perceptions of bereaved caregivers of patients who died in residential hospice during the COVID-19 pandemic to determine perceptions of quality of care, caregiver perceptions of their grief and bereavement, and the impact of the COVID-19 pandemic. In understanding the experiences and perceptions of bereaved caregivers, the study will identify priorities for quality improvement and guide development of grief and bereavement support programs during and beyond the COVID-19 pandemic.

Methods

Design

We used a qualitative, exploratory study design to explore the perspectives of bereaved caregivers at both Hospice Care Ottawa hospice sites: Maycourt Hospice and Ruddy-Shenkman Hospice. For the purposes of our study, a bereaved caregiver was defined as the primary contact for the person who was receiving hospice palliative care, identified as either power of attorney for personal care or substitute decision maker. Research ethics board approval was obtained from The Ottawa Health Science Network Research Ethics Board, as well as the Bruyère Continuing Care Research Ethics Board. This study is reported following the Consolidated Criteria for Reporting Qualitative Research guidelines.¹⁶

Population

Inclusion criteria for bereaved caregivers:

Bereaved caregiver of patients who died at either Hospice Care Ottawa residence site between September 2020 and February 2021. Participants had to be at least 18 years of age and English- or French-speaking.

Exclusion criteria for bereaved caregivers:

To eliminate the risk of coercion, potential bereaved caregiver study participants were excluded if clinician members of the research team (HM, DV) had provided direct clinical care to the patient and their caregiver.

Recruitment

Bereaved caregivers of patients who died in residential hospice were identified through the hospice patient database. Initial contact with potential study participants was made by members of the research team (HM, DV). All bereaved caregivers who were eligible and expressed a desire to participate in the study were scheduled for a virtual audio interview over Zoom due to local public health guidelines in the context of the COVID-19 pandemic.

Data collection

A purposeful sampling approach was utilized in the interest of including the experiences of a diverse range of participants.¹⁷ Drawing specifically on maximum variation sampling,¹⁷ bereaved caregivers reflected differences across a patients’ age, gender, language, diagnosis, length of admission, and time since death. Emphasizing a strong and situated understanding of each bereaved caregiver’s experience, and working iteratively and inductively, the study team worked toward data saturation across both hospice sites in Ottawa, Ontario.¹⁸ Correspondingly, constant comparison analysis¹⁹ was used to determine thematic saturation of the data.²⁰ After 15 interviews, we did not identify any new themes and we deemed that both data and thematic saturation were achieved.

Semistructured interviews were completed in February 2021. Members of the research team met to develop the interview guide. The guide was structured around Health Quality Ontario quality standards³ for palliative care and took into consideration current context, in particular the COVID-19 pandemic. The interview guide was further developed through discussions with community palliative care physicians, researchers with expertise in qualitative methods, and through conducting a literature review to explore salient concepts relevant to quality of palliative care, as well as grief and bereavement. A bereaved caregiver volunteer reviewed the preliminary interview guide, and their feedback was integrated. See Supplementary Appendix S1 for finalized interview guide.

Individual semistructured interviews allowed study participants to share their personal opinions, experiences, and emotional memories, which would be difficult to share using focus groups. Interviews were completed in either English or French based on the bereaved caregiver’s language of preference. English interviews were completed by one of two (HM, JM) members of the research team. Francophone interviews were conducted by a Francophone Master’s student. Field notes were collected by completing an interviewer form following each interview which allowed research members to reflect on key messages and observations of each interview.²¹ With participant consent, virtual interviews were audio recorded and transcribed verbatim by an external company who had signed confidentiality waivers. All potentially identifiable information were redacted from the transcript. Two interviews conducted in French were transcribed verbatim in French and subsequently translated into English for analysis by a translator certified by the Association of Translators and Interpreters of Ontario, Canada.

Data analysis

Drawing on an inductive thematic analysis, led by HM and JM, data pertaining to the experiences of bereaved caregivers of hospice were closely reviewed, coded, and categorized into recurring themes.^22,23 While thematic analysis varies considerably across qualitative studies,^24–27 this exploratory descriptive study focused on the perceptions and experiences of bereaved caregivers with the intention of creating a comprehensive coding framework.^24–27 Data analysis began with close readings of transcripts to gain a thorough understanding of the dataset. After reaching a common conceptualization of content, interview transcripts and preliminary codes/topic definitions were arranged into a coding framework and imported and utilized in a qualitative data analysis system NVivo V.12.

HM and JM consensus coded four transcripts (chosen at random) and met to discuss and share their codes until a consistent level of consensus across codes was established. The coding framework was then adjusted based on shared meaning and coding frequency within the transcripts. Afterward, the remaining transcripts were coded by HM. Following coding of all transcripts, the research team met to review all coded quotes to ensure rich rigor, credibility, and meaningful coherence in how the coding framework and analysis unfolded.^26,27

Findings

A total of 15 semistructured interviews were conducted over Zoom audio. The mean duration of interviews was 46.22 minutes and ranged between 26.25 and 58.07 minutes. The final number of participants included 15 bereaved caregivers. There was an approximately even number of bereaved caregivers of patients who died at each Hospice Care Ottawa residential hospice site: Maycourt Hospice (8) or Ruddy-Shenkman Hospice (7) (Table 1). Of the 15 bereaved caregivers, 3 were Francophone and 12 Anglophone. Of the 3 Francophone participants, 2 were interviewed in French at their request. In addition, the caregiver relation to the deceased patient included 6 spouses, 6 children, 1 friend, and 2 nieces/nephews. The mean age of patients was 79 years (standard deviation [SD] = 12.7), and the average length of stay (days) at hospice was 17. The average elapsed time of patient death to interview with bereaved caregiver was 114 days.

Table 1.

Characteristics of the 15 Participants Included in the Study

Variable	N
Gender
Female	12
Male	7
Language
Anglophone	12
Francophone	3
Caregiver Relationship
Spouse/partner	6
Child	6
Friend	1
Niece/nephew	2
Hospice Site
Maycourt Hospice	8
Ruddy-Shenkman Hospice	7
Condition of deceased family member
Cancer	9
Noncancer	6

Three predominant themes were identified in the data: (1) quality of residential hospice end-of-life care; 2) caregiver perceptions of their grief and bereavement; and (3) impact of the COVID-19 pandemic on hospice quality of care and caregiver bereavement.

Quality of residential hospice end-of-life care

Caregivers described their hospice experience with regards to the quality of care the patient received. This theme includes two subthemes:

Building of trust and genuine care by hospice staff and volunteers

There was a common sentiment that one of the most valued parts of hospice was the very quick building of trust with hospice staff, which allowed caregivers to accompany the patient at hospice rather than have to worry about their safety, physical needs, or comfort as this was being looked after by the hospice staff and volunteers.

“We knew it was going to happen, it was put in an understandable way, and for me it was – it was the best time of my life… we were there most of the day, every day, and I could go back home, I could sleep, I wouldn’t have to worry about what’s going to go on.” – RS2

Caregivers appreciated and valued the care provided at the hospice and stated that hospice staff seemed to care for the patient in a way that was genuine and more than just the duties of their job at the hospice.

“And every day that I went there she was immaculate. She looked so fresh and cleaned. And everything was just so perfect that it made you feel you’re doing, as a caregiver, everything you possibly can to make her comfortable, you know.” – M19

“The number one was how sweet everybody was and how caring they were, and how genuine. It wasn’t put on. It was a genuine feeling of they really did care. And that’s the only thing I can really say that they … You know, it was almost over the top, you know. I didn’t expect that.” – M19

Communication by hospice staff with patients and caregivers

Caregivers commonly felt that hospice staff communicated well with patients and families, that their questions were answered, and they had all the information they needed. Some bereaved caregivers, however, described concerns around communication of treatment plans, inadequate information sharing, and language barriers impacting care.

“We had a plan we had agreed on for treatments at home and I was clear that we had to keep the same plan and the plan was changed without telling me. So, maybe they had very good reasons for that there (hospice), otherwise, I do not dispute the merits of the decisions, but this conversation should have been very clear with the caregivers.” – RS10

One caregiver felt that inadequate information sharing ultimately led them to miss important parts of the patient’s end-of-life journey and death at hospice.

“So afterwards, I was like burned out and then I had to, say, take three days off and during those three days, [Patient] died. So then I wasn’t told about her condition, which was getting worse and worse, you know. And that, I was so … I was not near her when she passed away. So you can imagine my dismay.” – RS10

Some caregivers described language barriers while receiving care at the hospice. For example, the care of a unilingual Francophone patient. However, the caregiver did not raise this concern with hospice staff at the time because they felt the patient was otherwise receiving excellent care.

“No, it’s because we put aside all our socio-cultural needs…and we put all the focus of our efforts on [Patient]. Me, the only thing that mattered to me wasn’t me, it was [Patient]. So how she felt about the services that were offered. Then since the services were very high quality, then language was secondary.” – RS10

Caregiver perceptions of their grief and bereavement

Bereaved caregivers described their experiences and factors which impacted their grief and bereavement, in addition to those directly relating to the COVID-19 pandemic. This theme includes four subthemes: (1)

Balancing patient care with caregiver needs and emotions

Caregivers frequently described pushing their own individual needs and emotions aside, including anticipatory grief and noted that all of their energy was put toward being there and taking care of the patient. They often described being willing to sacrifice their own cultural and religious needs while visiting the hospice.

“Me, the only thing that mattered to me wasn’t me, it was [Patient].” – RS10

(2)

Experience of loss and death at hospice

Bereaved caregivers described their hospice experience as an extremely stressful life event and the experience of grief was difficult for most participants.

“OK, it’s been very heartbreaking. I loved her very much, OK, then the loss of her presence. I’m like on a desert island.” – RS10

“When somebody passes … everything in your life is done.” – RS5.

(3)

Presence or absence of bereaved caregiver at time of patient death at hospice

There were strong narratives by bereaved caregivers about whether they were there at the time of death.

Concordance with the patient’s preference on whether the caregiver was present brought comfort to caregivers.

“But she chose not to pass away whenever you were there, so she wanted to do this her own way, you know. And that was very comforting. So I was quite content after talking to [physician] because I was upset that I wasn’t there.” – M19

“Do I give her the chance to die because I’m not in the room, I’ve been here all day and I’ve not given her a chance for me to leave, and give her the option of passing when I’m not there”…“We weren’t even home two hours and I knew when they called, she’d already died.” – RS8

(4)

Hospice supports for bereaved caregivers

Most bereaved caregivers had declined participation in formal hospice grief and bereavement support programs. Caregivers described multiple reasons, which included that they felt they could deal with it best on their own, they figured other people had it worse than them, and that what they were going through was expected and not pathological; therefore, they did not require formal support from hospice bereavement support programs.

“Everything I’m experiencing I think is normal. It’s not like I want to kill myself or anything like that. I’m just very sad. And I don’t even know what supports they could help with…” – M03

We got a few pamphlets to understand if we needed more mental help. Sorry but I’m a strong person so [laughs] I just put those aside. I didn’t read through them to tell you the truth [laughs]. – RS5

Two bereaved caregivers had participated in formal bereavement supports offered by the hospice and found them to be helpful.

“I spoke to a grief counsellor and she was helpful. Basically, all I wanted was just to unload on somebody, you know, and just to vent a bit. Get it off my chest I guess.” – M16

Impact of the COVID-19 pandemic on hospice quality of care and caregiver bereavement

Bereaved caregivers described several factors related to the COVID-19 pandemic that impacted hospice quality of care and bereavement. This theme includes two subthemes: (1)

COVID-19 policies and procedures impacting patient and caregiver experience and quality of care. Bereaved caregivers were in general quite understanding that policy changes due to the COVID-19 pandemic were necessary and that hospice staff were doing the best they could under the circumstances. Bereaved caregivers described the pandemic as not necessarily having a direct impact on patient care, but negatively impacting the hospice experience of patients and their caregivers. COVID-19 policies and procedures, including limits on visitors and strict requirements of visitors and caregivers to wear personal protective equipment, were described by caregivers as one of the main negative things about their hospice experience. Specifically, caregivers described the pandemic policies and procedures as emotionally difficult, strict, and frustrating.

“Like you know, I had to wear the mask…I mean, like I’m COVID-free. I’ve had nine COVID tests, so like enough. And I just want to like hug my dad and kiss my dad, kind of deal. So again, they were a little strict on that front. I understand why. Still not easy to deal emotionally, right? Like brain and heart aren’t always aligned.” – M03

Furthermore, bereaved caregivers described frustrations with specific COVID-19 pandemic policies and procedures, including the need for a COVID-19 negative swab prior to admission to hospice which delayed patient transfer and admission to hospice for end-of-life care.

“You know, that could have been faster, but there still had to be discussions with (Hospice) and then [Patient] had to pass yet another test for COVID, to make sure it wasn't positive.” – M10

(2)

COVID-19 hospice policies and procedures increasing burden placed on caregivers and impact on grief and bereavement

The pandemic increased the burden of care placed on caregivers in multiple ways both before and after the patient’s hospice admission. There were fewer informal caregivers available to help with patient care at home in the community and once admitted to hospice, there were limited caregivers and family members allowed to visit the hospice due to COVID-19 visitor restrictions. Furthermore, due to COVID-19 policies, there were no private spaces at hospice in which caregivers could go to retreat, reflect, or take a break, as these spaces were closed to visitors.

“Yes, as far as I'm concerned, say, personally, I'm a practicing Christian with a touch of Buddhism. So this is … there was no place in the hospice that I could go to and this is very normal with the covid there, it was one of the impacts of the covid, that I could rarely go to a place where I could retreat.” – RS10

Caregivers described several COVID-19 factors impacting their grief and bereavement during the pandemic; the impact of hospice COVID-19 policies and procedures, limited ability to engage in cultural or religious practices during COVID-19, limits on gathering for funeral ceremonies, and limited bereavement support programs.

“the COVID thing screwed everything up. I know that they were trying their best at the hospice. They were trying to follow provincial guidelines. But I think a little bit more compassion could have been had.” – M03

“It's just really in terms of personal support, not being able, family members, siblings, not being able, there was just one who got to go see him. So, that, I'm sure for some people, it was difficult, but it's out of the hospice’s control, I mean it's not… it would really only be that which I really found to be disappointing there, but that was the period we were going through, so there's not much we can do about it.” – M10

Discussion

The current study uniquely explored the perspectives of bereaved caregivers of patients who died in residential hospice during the COVID-19 pandemic which has not been previously reported in the literature. Building on previous mixed methods research, which included limited qualitative comments from the CaregiverVoice survey,¹¹ our study used a detailed semistructured interview to explore the perspectives of bereaved caregivers on quality of care in residential hospice. Bereaved caregivers described hospice staff building trust, providing genuine care, and communicating well in most instances with patients and their caregivers.

Previous research has described an association between the COVID-19 pandemic and increased grief severity, which is a risk factor for PGD.¹³ No previous studies have explored the grief and bereavement of caregivers of patients who died in residential hospice during the COVID-19 pandemic. Bereaved caregivers in our study commonly described being aware of hospice bereavement programs and acknowledged how grief was strongly affecting their lives. Furthermore, caregivers described not knowing what kind of grief support they needed and what supports hospice bereavement programs could help with. Bereaved caregivers most often had not engaged in formal hospice bereavement support programs, which is consistent with previous studies in which less than ten percent of bereaved caregivers with grief symptoms were interested in participating in formal hospice bereavement support programs.²⁸ Although few bereaved caregivers in the current study had participated in formal hospice bereavement support programs, those that did found them to be quite helpful and most would likely have benefited. Given that a significantly higher percentage of bereaved caregivers experienced more severe grief symptoms during the pandemic, as previously described in the literature, there is an urgent need for resources to support bereaved caregivers during and beyond the COVID-19 pandemic.¹³ Consequently, hospice bereavement support programs should be normalized and benefits discussed with caregivers at the time of residential hospice admission.

Furthermore, the current study explored the perspectives of bereaved caregivers on the impact of the COVID-19 pandemic on residential hospice quality of care. Bereaved caregivers described several factors related to the pandemic that significantly impacted residential hospice care quality. Widespread visitor restrictions occurred across health care systems,¹ and the literature describes that visitors generally adhered to and accepted the restrictions, despite known consequences to patient care.²⁹ Bereaved caregivers in the current study were generally quite understanding of residential hospice pandemic policies and procedures, including visitor restrictions and the need for caregivers to wear personal protective equipment, but described how it negatively impacted patient care and their hospice experience. In addition, bereaved caregivers described a general sense that the hospice staff were doing their best under the circumstances of the pandemic and generally felt that any conversation or advocacy to attempt to change COVID-19 policies or procedures, including visitor restrictions, would not lead to hospice policy change.

Previous research exploring the experiences of bereaved relatives during the COVID-19 pandemic noted that it was very important for caregivers and relatives to be given the chance or opportunity to visit and “say goodbye” at the end of life.³⁰ Similarly, bereaved caregivers in our study described the significant impact of residential hospice visitor restrictions during the pandemic, specifically the emotional burden of having to choose which visitors would be allowed to visit in-person and being the one to inform other friends or family members that they would not be allowed to visit at end of life.

Strengths and limitations

Bereaved caregivers were the central focus of this study, and patient perspectives were not included; therefore study results may not reflect patient perceptions and experiences. In addition, we recruited the primary caregiver of patients who died in residential hospice and not additional close family members who might have different perspectives. Data and thematic saturation were achieved after 15 interviews, and quotations selected in the manuscript were those from a smaller number of participants because they were the richest in quality. Given the small number of study participants, bias in the selection of study participants could have impacted the study findings. The current study offers important insights and experiences, which may be translatable, but are not generalizable to other health care sites and settings.

Our study’s focus on the central and unique perspective of bereaved caregivers highlights the central value of familial caregivers in addressing quality of care and grief and loss experiences. Our study is strengthened by the use of purposeful sampling, specifically including two hospice sites, Francophone study participants (n = 3), diverse bereaved caregiver relationships to the patient (spouse, child, friend, niece/nephew), varying hospice length of stay, as the bereaved caregiver experiences would differ. Moreover, this study uniquely captured the experiences and perspectives of bereaved caregivers of patients who died in residential hospice during the COVID-19 pandemic.

Conclusion

The COVID-19 pandemic impacted palliative and end-of-life care programs and services across Canada and provided a timely opportunity to explore the perceptions of bereaved caregivers of patients in residential hospice on quality of care, grief and bereavement, and the impact of the COVID-19 pandemic in residential hospice. Given high rates of severe grief symptoms during the COVID-19 pandemic, bereaved caregivers may have benefited from participation in hospice bereavement support programs. Our study findings address a gap in the literature by exploring perspectives of bereaved caregivers on the impact of the COVID-19 pandemic on grief and bereavement and help guide bereavement support programs. Decision makers must continuously evaluate and carefully consider the impact of pandemic policies and procedures in residential hospice on patient care, as well as caregiver grief and bereavement.

Footnotes

Acknowledgments

The authors acknowledge Hospice Care Ottawa, Champlain HCCSS, Karen Sylvester (bereaved caregiver volunteer).

Authors’ Contributions

D.V., H.M., J.M., and P.G. made a substantial contribution to the concept or design of the work or acquisition, analysis, or interpretation of data. D.V., H.M., J.M., and P.G. drafted the article or revised it critically for important intellectual content. D.V., H.M., J.M., and P.G. approved the version to be published. D.V., H.M., J.M., and P.G. have participated sufficiently in the work to take public responsibility for appropriate portions of the content.

Funding Information

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: University of Ottawa, Faculty of Medicine, Office of Social Accountability—Social Accountability Postgraduate Trainee Grants and Awards Program 2021.

Author Disclosure Statement

No competing financial interests exist.

Supplementary Material

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Quality of Care during the COVID-19 Pandemic: A Qualitative Exploration of Bereaved Caregivers’ Experiences at a Hospice Residence

Abstract

Background:

Aim:

Design:

Setting/Participants:

Results:

Conclusions:

Introduction

Methods

Design

Population

Recruitment

Data collection

Data analysis

Findings

Quality of residential hospice end-of-life care

Caregiver perceptions of their grief and bereavement

Impact of the COVID-19 pandemic on hospice quality of care and caregiver bereavement

Discussion

Strengths and limitations

Conclusion

Footnotes

Acknowledgments

Authors’ Contributions

Funding Information

Author Disclosure Statement

Supplementary Material

References

Supplementary Material