PLOS ONE

RESEARCH ARTICLE

Exploring the unmet needs and experiences

of informal caregivers of patients with
end-stage kidney disease (ESKD) receiving
haemodialysis – a qualitative study
Michael Matthews ID*, Clare McKeaveney, Helen Noble, Joanne Reid

School of Nursing and Midwifery, Queen’s University Belfast, Belfast, United Kingdom

* mmatthews01@qub.ac.uk
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Background
Patients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple
OPEN ACCESS symptoms, which can present physical and emotional challenges for both patients and their
informal caregivers. Caregivers can experience anxiety, depression, and social isolation
Citation: Matthews M, McKeaveney C, Noble H,
Reid J (2024) Exploring the unmet needs and negatively impacting their overall wellbeing and resulting in caregiver burden. The needs of
experiences of informal caregivers of patients with this group of caregivers have been largely neglected, with little emphasis placed on support-
end-stage kidney disease (ESKD) receiving ive interventions that might assist and support them in their caring role.
haemodialysis – a qualitative study. PLoS ONE
19(5): e0302525. https://doi.org/10.1371/journal.
pone.0302525 Aim
Editor: Mabel Aoun, Faculty of Medicine, Saint- The aim of this study Is to explore the unmet needs and experiences of caregivers of
Joseph University, LEBANON patients with ESKD receiving haemodialysis, and to determine the components of a support-
Received: August 1, 2022 ive intervention.
Accepted: April 7, 2024
Design
Published: May 9, 2024
A qualitative study using semi-structured interviews (n = 24) with informal caregivers. An
Copyright: © 2024 Matthews et al. This is an open
interpretive qualitative framework was employed to generate a rich understanding of the
access article distributed under the terms of the
Creative Commons Attribution License, which unmet needs and experiences of caregivers. Data was analysed using thematic analysis.
permits unrestricted use, distribution, and Interviews were transcribed verbatim and data management was assisted through NVIVO
reproduction in any medium, provided the original
version 11.
author and source are credited.

Data Availability Statement: All relevant data are

Setting/Participants
within the manuscript.
Twenty-four informal caregivers were purposively recruited from two haemodialysis settings
Funding: The funding for this work was awarded to
MM from The Northern Ireland Kidney Research within Northern Ireland.
Fund (NIKRF Reference: R2544NUR), as part of a
PhD programme of study. The funders had no role Results
in study design, data collection and analysis,
decision to publish, or preparation of the Three themes were identified: (1) The negative impact of distress, anxiety, and isolation on
manuscript. caregivers due to their caregiving responsibilities (2) Inadequate information and knowledge

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

Competing interests: The authors have declared about the complexities of renal care (3) The benefits of spiritual beliefs, stress management
that no competing interests exist. and peer support in relieving the caregiving burden.

Conclusions
Caregivers of patients with ESKD receiving haemodialysis are at increased risk of physical
and psychological distress and burden arising from their caregiving role. The unpredictable
nature of ESKD and haemodialysis treatment negatively impacts the caregiver experience
and adds to the challenges of the role. The information needs of caregivers are not always
adequately met and they subsequently lack appropriate knowledge, skills, and guidance to
assist them in their caregiving role. Supportive interventions are essential for caregivers to
enhance their capability to deliver effective care and improve their quality of life.

Introduction
Chronic kidney disease (CKD) has been recognised as a leading public health problem world-
wide with a high economic cost to healthcare systems [1]. CKD progresses along a five-stage
trajectory with Stage 5 being termed “end stage kidney disease” (ESKD) [2]. It occurs when the
glomerular filtration rate of the kidney is less than 15ml/min, and renal replacement therapy is
required in the form of either haemodialysis, peritoneal dialysis, or kidney transplantation [3].
Haemodialysis is the most common treatment modality [4]. While technological advances in
the delivery of haemodialysis treatment have contributed to the improved survival of patients,
quality of life of these patients is still much lower than that of the general population [5]. The
treatment burden of patients undergoing haemodialysis is associated with adverse clinical and
patient reported outcomes. These include non-adherence to medication regimens, and a
higher risk of hospitalisation and mortality [6,7]. In addition, a large percentage of patients
have a high co-morbidity burden and increased risk of physical, cognitive, and psychological
deterioration [8,9] which negatively impacts their ability to self-care [10]. The increasing frailty
and dependence on others experienced by this cohort of patients means that they are increas-
ingly reliant on informal caregivers to help manage this debilitating condition and support
them in their everyday lives [11].
Informal caregivers (hereafter referred to simply as “caregivers”) are unpaid volunteers
such as family members, close friends or neighbours who provide physical, emotional, finan-
cial, and social care for an individual with a chronic illness or disability [12]. Previous research
has indicated that tasks carried out by caregivers can include assistance with personal care
needs, support with mobility, medication management, preparation and management of die-
tary and fluid requirements, monitoring for complications and provision of emotional and
social support [13,14]. Caregivers of patients with ESKD undergoing haemodialysis may have
their own health and social care needs and in addition may be fearful, feel vulnerable, experi-
ence conflict with their other roles and responsibilities, feel overwhelmed by their responsibili-
ties and report unmet needs [15–17] The challenges of informal caring for patients with ESKD
receiving haemodialysis often negatively impacts caregivers’ physical and psychological wellbe-
ing, employment opportunities and social lives [18].
Despite growing recognition of the burden and adverse effects on caregivers in the provision
of care for individuals receiving haemodialysis, there has been consistently little acknowledge-
ment of their unmet needs and experiences [19]. In addition to this poor evidence-base, there is

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

no acknowledgement of their role or specific requirements in guidance produced by the Kidney

Disease Improving Global Outcomes (KDIGO) Controversies Conference [20], National Insti-
tute for Health and Care Excellence (2020) [21] or Renal Association Guidelines (2019) [22].
The negative impact of the responsibilities on this cohort of caregivers, coupled with the lack of
support and dearth of evidence relating to their needs and requirements, underscores the need
to understand their experiences and unmet needs, thus facilitating the development of a sup-
portive intervention. A pilot randomised controlled trial involving family caregivers of patients
with chronic kidney failure choosing not to be treated by dialysis or transplantation showed
that an enhanced psychosocial program, significantly reduced caregiver burden and anxiety
[23]. In the development of a supportive intervention for caregivers of patients with ESKD
undergoing haemodialysis, stakeholders should take account of the expressed support needs
and experiences of caregivers highlighted in this study. The aim of this study is to explore the
experiences and unmet needs of caregivers of patients with ESKD receiving haemodialysis and
how best they might be supported in their informal caregiving role.

Methods
Design
This was a qualitative study based within two renal units in Northern Ireland which in combi-
nation provides haemodialysis for approximately 140 patients. Patients undergoing home hae-
modialysis, which may involve a higher caregiver burden were not included in this research.
Further research focusing specifically on this subgroup of caregivers is needed to determine
how best to support this under-represented group. A broad interpretivist approach was
adopted as the data collected from caregivers needed to be subjective and reflect their experi-
ences in caring for patients with ESKD undergoing haemodialysis. The consolidated criteria
for reporting qualitative research (COREQ) (Tong et al 2007) [24] were used to ensure best
practice for reporting this study.

Participants
Purposive sampling was employed. Senior nurses who acted as clinical gatekeepers provided
patients with a caregiver a covering letter detailing the aim and objectives of the study and a
copy of the participant information sheet, so that it could be given to the caregiver. A contact
number was also provided allowing potential participants to contact the researcher if they had
any queries regarding the study, and to inform the researcher if they were willing to partici-
pate. The inclusion criteria included participants aged 18 years or over, who were able to give
informed consent, and who were nominated by the patient as their main carer and caring for a
patient living at home. Caregivers were excluded if they were unable to give informed consent,
were not the primary caregiver, were caring for a patient with a functioning kidney transplant
and patients being cared for in an inpatient setting.

Data collection
Semi-structured interviews were carried out by the corresponding author, MM, a PhD student,
in the informal caregivers’ homes using an interview schedule designed by the research team
as a prompt of key issues to explore (Table 1). To enhance validity of the interview schedule,
four pilot interviews were completed before exposing it to caregivers. Written informed con-
sent was obtained before each interview and the interviews were recorded digitally. Data was
collected between 23rd April 2021 and 09th September 2021. Data collection was completed

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

Table 1. Participant interview schedule.

Experiences associated with informal caregiving
Interviewer: Tell me about your caring role? For example, Prompts: Specific tasks for example personal care needs,
tell me about the person you care and what you do for them medications, food and fluid requirements, monitoring loved
on a daily basis? one’s well-being, liaising with healthcare professionals,
managing hospital appointments, how many hours per day
you provide care, age of person caring for.
Interviewer: Tell me how your loved one responded to Prompts: Does the patient talk about their condition and the
being diagnosed with ESKD and commencing need to attend hospital three times a week, does the patient
haemodialysis? expects you to take over and manage their condition or do
they assume some responsibility for their own well-being.
Interviewer: What are your experiences caring for your Prompts: Desire to provide good care, feelings of burden,
relative/friend? stress, confusion, hopelessness, overwhelmed (physical and
psychological considerations), relationship with partner/
friend.
Interviewer: Can you describe the positive aspects of your Prompts: Sense of achievement, personal growth and
caring role? development, feeling of giving something back to someone,
personal satisfaction.
Interviewer: What new skills do you think you have Prompts: Being organised, time management, flexibility,
acquired in carrying out your caring role, and where did good communication skills, empathetic understanding, and
you learn these skills? adaptability to changing situations. Healthcare professionals
(hospital/community based), peers, family, friends, internet,
books.
Interviewer: How has the caring role impacted on your own Prompts: Changes in family relationships, personal/
life and that of other close family members? professional life balance, restrictions in social life.
Interviewer: What challenges or difficulties might you Prompts: Assisting with daily care needs, care needs on
encounter when carrying out your caring duties? return from dialysis, getting opportunity to speak with staff
in dialysis unit/GP surgery, dealing with complications.
Interviewer: How do you cope with the challenges Prompts: Speak with other family members, seek
associated with your caregiving role? professional help, make time for yourself.
Interviewer: Looking back at the duration of you caring Prompts: Changes in state of health of patient, changes in
role, can you tell me if you have seen a change in the level of physical and psychological demands.
care you are required to provide?
Supportive Mechanisms
Interviewer: Can you tell me about any types of support/ Prompts: Formal support from health and social services,
assistance you receive? GP, hospital consultants (renal or other), online support
services, informal support (friends, neighbours, family
support groups, other renal informal carers), support groups.
Interviewer: Focusing on the support from healthcare Prompts: Various members of the MDT team
professionals, can you outline to me which members of the
healthcare team provides which support?
Interviewer: Tell me about any specific information or Prompts: What was most helpful, what was least helpful?
advice about caring for someone with ESKD receiving What information would you have liked, was the
haemodialysis you have received? information/advice easily available/accessible,
Interviewer: Can you outline to me if you feel you have a Prompts: Physical, psychological, and emotional care need
good understanding of the needs of your loved one so you requirements.
can care for them properly.
Interviewer: Can you outline to me anything you do to care Prompts: Things to manage stress such as meeting friends,
for yourself or provide relaxation? sitting service, help from other family members, smoking,
alcohol, excessive eating.
Interviewer: Thinking back to when you started your caring Prompts: From experience what would help future carers,
role, what would you have found useful or would have been assist them in their caring role. Practical care needs
of benefit to you at this time? (medication, diet and fluids), psychological/emotional
support (strategies to manage stress, anxiety, depression,
feelings of despair), social support (useful resources, support
mechanisms), and spiritual support
Interviewer: If support was to be offered to informal carers Prompts: face-to-face, telephone, DVD, web-based /
maybe in terms of a structured programme, how do you combination of these methods, written information,
think it should be delivered? individually or as a patient/carer dyad.

https://doi.org/10.1371/journal.pone.0302525.t001

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

when data saturation was reached, and no new information or themes were being uncovered
[25]. Field notes were not recorded.

Ethics
Ethical approval was granted by the West of Scotland Research Ethics Service (20/WS/0056)
on 3rd April 2020, who granted permission for the study to be completed in Northern Ireland.
Sponsorship for the study was obtained from Queen’s University, Belfast. Governance
approval was gained from the Research and Governance Offices, Northern Health and Social
Care Trust (NT20-2740230-04) on 1st July 2020, and Belfast Health and Social Care Trust
(20003HN-SS) on 16th April 2021. The study was conducted in compliance with Good Clinical
Practice Guidelines [26].

Analysis
Data from the recorded semi-structured interviews was transcribed verbatim, checked for
accuracy against the original audio files and read several times [27]. A thematic content analy-
sis was carried out as outlined by King and Horrocks (2010) [28]. This method of analysis
defines themes as recurrent and distinctive features of participants’ accounts, characterising
perceptions and/or experiences which the researcher sees as relevant to the research question.
This approach was chosen as it aligns with the interpretivist approach of the study, whereby
the researcher aimed to interpret and understand caregivers’ experiences of caring for patients
with ESKD receiving haemodialysis and gain the views of healthcare staff regarding the devel-
opment of a supportive intervention. During the process of thematic analysis, data was ana-
lysed to identify common themes and group recurring themes occurring in the data. Data
coding was completed by MM and checked by the co-authors. Data management was assisted
by using NVivo version 11 (QSR 2015) [29]. As data analysis could have reflected personal
bias, reflexivity increased the credibility and rigor of the research findings. Rigor was main-
tained ensuring that all conclusions made in the research were dependable and transparent.
An audit trail was kept detailing problems encountered during the study and measures put in
place to resolve these issues [30].

Results
Twenty-four semi-structured interviews were conducted with caregivers between April 2021
and September 2021. Participants age ranged from 35–86 years (mean age = 66). Fourteen
female and ten male caregivers, all of white ethnicity participated in the interviews which lasted
from 55 to 95 minutes in duration (mean = 70 minutes). In-person face-to-face interviews
(n = 15) and virtual interviews (n = 9) were completed using videoconferencing software.
These latter were offered to allow social distancing in response to the COVID-19 pandemic.
All participants approached participated in the research. No repeat interviews were carried
out, and no transcripts were returned to participants for comment or correction. Additional
details about the participants are presented in Table 2. Three overarching themes were gener-
ated from the interview data and are presented below. A thematic schema has been included to
visually represent the connection and relationship between themes and sub-themes Fig 1. The-
matic schema showing connection between themes and sub-themes.

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

Theme 1. The negative impact of distress, anxiety, and isolation on

caregivers due to their caregiving responsibilities
Caregiving had a negative impact on the emotional and psychological well-being of the care-
givers’ participating in the study. They reported that they felt overwhelmed by the responsibili-
ties of their care giving role, that they had lack of time for themselves, and that they
experienced feelings of inadequacy and isolation. This first theme was hence comprised of
three sub-themes which are explored below: feelings of being overwhelmed, feelings of isola-
tion and feelings of distress and anxiety.

Sub-theme 1. Feelings of being overwhelmed

Firstly, caregiving was shown to have a negative impact on the participants’ emotional and psy-
chological well-being as they tried to juggle personal, household, and professional roles, which

Table 2. Profile of informal caregivers who participated in the semi-structured interviews.

Participant Gender of Ethnicity Age of informal Informal caregiver Informal caregiver and Occupation of Interview type
identification informal caregiver relationship to patient patient living together informal caregiver
caregiver
IC-001 Female White 69 Friend No Retired Face to face
IC-002 Female White 57 Daughter Yes Domestic Assistant Face to face
IC-003 Female White 55 Mother Yes Housewife Face to face
IC-004 Female White 51 Daughter Yes Unemployed Video
conferencing
IC-005 Female White 75 Wife Yes Retired Video
conferencing
IC-006 Female White 35 Friend No Carer Video
conferencing
IC-007 Male White 61 Husband Yes Civil servant Face to face
IC-008 Female White 74 Wife Yes Retired Video
conferencing
IC-009 Female White 77 Wife Yes Retired Video
conferencing
IC-010 Male White 61 Husband Yes Unemployed Face to face
IC-011 Male White 78 Partner Yes Retired Video
conferencing
IC-012 Female White 80 Wife Yes Retired Face to face
IC-013 Male White 49 Brother No Business Owner Face to face
IC-014 Female White 41 Granddaughter Yes Nurse Video
conferencing
IC-015 Male White 34 Son Yes Unemployed Face to face
IC-016 Female White 56 Wife Yes Classroom assistant Face to face
IC-017 Male White 32 Son Yes Taxi driver Face to face
IC-018 Female White 59 Daughter Yes Bookkeeper Face to face
IC-019 Male White 67 Husband Yes Retired Video
conferencing
IC-020 Female White 46 Daughter No Teacher Video
conferencing
IC-021 Male White 64 Daughter No Retired Face to face
IC-022 Male White 74 Husband Yes Retired Face to face
IC-023 Male White 54 Son Yes Unemployed Face to face
IC-024 Female White 86 Wife Yes Retired Face to face
https://doi.org/10.1371/journal.pone.0302525.t002

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

Fig 1. Thematic schema showing connection and relationship between themes and sub-themes.
https://doi.org/10.1371/journal.pone.0302525.g001

led to them feeling overwhelmed. These competing demands for their time and energy resulted
in caregivers being unable to fulfil their many roles to the best of their ability and it was diffi-
cult if not impossible for caregivers to make time for themselves.

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

“You don’t get a chance to sit down all evening. . . prepare dinner, get pills, get her ready
and assist her to bed, and then you have to prepare for the next day, while trying to make
time for your husband and children. My husband is very understanding . . .. and because
you are so exhausted, I feel I’m not giving things my 100%, but I am giving my best to
everything . . . my husband, my mother my children, my job and of course I’m last, I’ve no
time to call my own. . ..” (IC-020)

Sub-theme 2. Feelings of isolation

Secondly the issues of isolation that arose in terms of the significant time commitment
required by caring frequently led to participants describing the need to be constantly attentive
to the person being cared for. The participants reported feelings of isolation and loneliness
connected to the disconnection from family members and friends which further contributed
to their emotional and psychological distress.

“It’s impossible to organise anything, the caring role just consumes your whole life. . ., he is
constantly on my mind, first thing in the morning, last thing at night. We might plan to do
something in the short window we have outside of dialysis days and then on the days he is not
for dialysis he is so weak and tired, that plans have to be cancelled. It could all get you down
very easily”. (IC-08).

Sub-theme 3. Feelings of distress and anxiety

Participants expressed psychological distress and anxiety due to fear and uncertainty about the
future care of their loved one. Caregivers recognised their loved one had no clear illness trajec-
tory and little guidance from healthcare professionals which they found frightening. Caregiv-
ers were under no illusion, as time goes on, they too will experience decline in health, given
the unrelenting nature of their caregiving role resulting in a lot of unanswered questions, add-
ing to their anxiety.

“I worry about if the time comes that I am no longer able to care for him. . ..and with me get-
ting older and having my own health problems. . .. that worries me very much, who will look
after him and who will care for him? he is so very dependent on me” (IC-003).

Caregivers were particularly distressed when they witnessed their loved one experiencing
the adverse effects of dialysis such as extreme lethargy, nausea, and muscle cramps. In the
meantime, they could do little to alleviate the suffering.

“I feel so sorry for [name] my wife when she returns home from dialysis, she is just completely
washed out and fit for nothing, and this all causes extra stress, deciding if you need to contact
the doctor or even the ambulance. I have no background in anything medical, I don’t under-
stand why there is no-one could speak to you even to say yes or no . . .. give you advice on this”
(IC-013).

A further pressing concern that caused distress and anxiety for many caregivers was the
financial implications of their caring role. Caregivers found financial support difficult to
access, dependent on complex eligibility criteria and associated with restrictions on employ-
ment which further limited their ability to manage the financial burden.

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

“I really feel carers should be financially rewarded, I had to give up a well-paid job to meet the
care needs of my father, after the completion of laborious forms I am now in receipt of some
benefits, but it in no way compensates my previous wage. I am continually dipping into my
savings”. (IC-023).

Poor lifestyle choices such as comfort eating and not taking regular exercise were symptom-
atic of the participants’ response to stressful caregiving situations. In the longer-term caregiv-
ers were aware that these behaviours may have a detrimental effect on their well-being and
further impact their ability to provide care. In response to feeling overwhelmed by these feel-
ings, participants expressed an interest in being able to access a web-based health promotion
link and/or being signposted to a facility where they could engage in activities to promote
physical activity and healthier eating choices.

“I know I’m not doing myself any favours and am aware of the problems that could present
resulting from a sedentary lifestyle and unhealthy eating. It’s difficult to leave here to take
part in a fitness class. What would be good would be a link where you could log on to get infor-
mation on healthier food choices and even an exercise or fitness session which you could take
part in at home”.

Theme 2. Inadequate information and knowledge about the

complexities of renal care
As the participants attested, taking on new practical roles and responsibilities proved challeng-
ing due to a lack of information and knowledge. Such responsibilities came from assisting with
personal care needs and managing food and fluid requirements, to the administration of medi-
cations and additional household tasks which caused caregivers to feel overwhelmed. These
issues are explored across this theme through the following four core elements: inadequate
medication management knowledge, difficulties in providing personal care needs, inadequate
knowledge of the renal diet and poor knowledge of the complexities of renal care.
Firstly, participants reported that medication management was a complex task requiring
physical and cognitive effort to order, collect, organise store and administer medications cor-
rectly. These tasks imposed substantial responsibility and practical difficulties on caregivers,
adding significantly to their level of burden such as concern that they could forget to adminis-
ter medication which might negatively impact on the health of their loved one.

“Trying to manage and administer tablets is so challenging, he is on so many tablets for renal,
diabetes, heart failure. My daughter suggested a blister pack, but that wouldn’t work with the
phosphate binders to be taken at specific times and the changing dose of warfarin”. I have to
write myself notes to make sure I don’t forget to give tablets at the prescribed time. {Name}
hates taking tablets and would never ask for them but then his memory isn’t always the best
anyway”. (IC-006).

Secondly caregivers explained how personal care and toileting were particularly stressful
caregiving tasks. Participants wanted reassurance sufficient to know that what they were doing
was correct, particularly in terms of protecting skin integrity. The mobility of patients was
often reduced, and many had to spend long periods resting in bed. One participant (IC-011)
repeatedly emphasised having received no guidance on skincare and described how:

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

“You hear so much about people developing pressure sores, especially on their bottom, I’m not
even sure what to look for, or what I could do to help prevent this happening, some informa-
tion about this would have been useful, but it was never forthcoming, I just do what I think is
best”. (IC-011).

Physical changes to the home environment such as the installation of a stair lift, a wet room
or the provision of additional toileting equipment were felt by participants to be contributions
that would assist them in their caregiving role. While some caregivers were awaiting an assess-
ment by an occupational therapist, most caregivers had received no input from occupational
therapy or were unaware of the support that these healthcare professionals could offer them.
The participants also reflected a need for awareness and knowledge of what support voluntary
organisations could provide and how contact could be made with these organisations.

“We are continually struggling at home, neither of us are getting any younger and (name) is
just losing the power in his legs. My GP eventually made a referral to the occupational thera-
pist, but God knows how long the waiting list is, so in the meantime you just have to struggle
on. The GP surgery or renal unit told me they couldn’t provide a wheelchair but didn’t say
where I could get one. Then just by chance a friend of a friend said you get them from the Brit-
ish Red Cross, you just have to make a donation, why could nobody have told me that, I was
distracted didn’t know what I was going to do, but thank God, they sorted me out”.

Thirdly caregivers reported that the provision of personal care and medication manage-
ment was further compounded by frustration with the different components of the renal diet.
Participants had little knowledge of the purpose of the diet and the overall significance of the
diet in managing the patient’s condition. Many caregivers were also supporting patients with
other co-morbid conditions such as diabetes and heart failure, conditions which also necessi-
tated dietary and fluid restrictions. The participants reported that their loved ones sometimes
brought home information sheets on how to manage dietary and fluid requirements, but oth-
ers had never received such literature. Moreover, the caregivers were unable to confirm if this
meant their loved ones were not reviewed by the dietician or if they discarded or left the infor-
mation sheets behind them.

“I can understand dietary and fluid restrictions for the diabetes and heart failure, but for kid-
ney disease I have no idea, how can you deal with all these special requirements when prepar-
ing one single meal. I’m at a loss as to what the information sheet means, you end up
bombarded with sheets on diet and fluids and just end up so confused, the dietician really
needs to make contact with me, so I have it clear in my mind what I’m supposed to be doing, I
have a lot of questions”. (IC-011).

In terms of the fourth and last element of this theme that addresses caregivers’ lack of
knowledge, participants demonstrated limited understanding of some of the complexities of
renal care such as how to care for a fistula or haemodialysis catheter. Fistulas and haemodialy-
sis catheters are essential lifelines for patients and the means by which blood is carried to a hae-
modialysis machine. Caregivers reported that they realised the importance of keeping the site
of the fistula or haemodialysis catheter clean. However, they were unaware of the potential
complications that might present, how to recognise these complications and what to do in an
emergency if the fistula or haemodialysis catheter started to bleed. This led to additional stress.

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

“I regularly check his fistula to see if it bleeds, but don’t know what else I should be looking for,
I take the plasters off but am always terrified of the thing bleeding, what would I do then, I
would have to contact an ambulance”. (IC-023).

These limitations in the face of the complexity of renal care were further exacerbated by the
limited opportunities to speak to medical or nursing staff about fluctuating patient symptoms.
The caregivers were often left worrying about the seriousness of symptoms and felt that they
had to learn to identify when they could deal with these problems themselves or whether they
had to seek professional assistance.

“This all causes extra stress, it’s just a stress, deciding if you need to contact the doctor or even
the ambulance. I have no background in anything medical, I don’t understand why there is
no-one could speak to you even to say yes or no . . .. give you advice on this” (IC-013).

Furthermore, caregivers reported the need for tailored educational programs involving
input from healthcare professionals using language which was easy to comprehend. When a
loved one starts haemodialysis caregivers may require information related to the haemodialysis
treatment, whereas over-time the information needs may change to manage the complications
arising from the haemodialysis treatment. Participants concurred that there was a need for
specific educational programs which would meet their ever-changing knowledge and informa-
tion needs in caring for a patient with ESKD on haemodialysis.

“The information you need to provide proper care changes all the time, what information was
useful to me when {name} started dialysis is no longer beneficial now two years later. What-
ever the technicalities are, healthcare workers need to bear in mind they are talking to the lay-
man, but look, this is where it was. We stepped in. This is where it is. And now it’s doing that.
We’re good. Simple language is the only way” (1C-007).

Theme 3. The benefits of spiritual beliefs, stress management and

peer support in relieving the caregiving burden
Participants acknowledged the positive elements associated with their caring role. They
highlighted the importance of adopting a positive attitude and focusing more on these positive
aspects which helped them deal with challenges and stressful situations to provide ongoing
motivations to sustain them in their role. The factors associated with influencing a more posi-
tive caregiving experience are discussed through consideration of three sub-themes: spiritual
beliefs, peer support and stress management through mind body practices,

Sub-theme 1. Spiritual beliefs

Participants highlighted the importance of adopting a positive attitude and focusing on the
encouraging aspects of their caring role. Caregivers acknowledged the positive elements asso-
ciated with informal care provision which included the development of a closer relationship
with their loved one. Caregivers developed a stronger affiliation with their spiritual beliefs
through faith and prayer, both of which provided ongoing motivation to sustain their caregiv-
ing role. There is no cure for ESKD, and many patients are too unwell to be considered for a
kidney transplant. In this context spiritual beliefs became significant, and faith and trust pro-
vided some optimism and hope for the future. For some the sense of being part of a religious

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

community offered caregivers a sense of belonging with several finding great comfort when
people said to them “I’ll remember you in my prayers”.

“I have a very close church family, there is genuine concern for each other. . .. . ., this means a
lot. I make the biggest effort to go to church each Sunday, this sustains me for the remainder of
the week. On the odd occasion I cannot get to church there are numerous phone calls to see if
everything is ok, that just shows how close the church family is”. (IC-005).

Sub-theme 2. Peer support

Participants acknowledged the valuable role of peer support providing a mechanism whereby
they could receive guidance, empathetic understanding, and helpful tips from informal carers
who had been/or were in a similar caregiving situation as themselves, thus helping them adjust
and adapt to their informal caregiving situation.

“In addition to the support of healthcare professionals, having the opportunity at the same
time having the chance to speak to someone who has been through this is just as important, so
they can share their experiences . . .. what works and what doesn’t. (IC-019).

Sub-theme 3. Stress management through mind body practices

Caregivers often admitted that they struggled to make time for themselves which resulted in
increased stress and anxiety. They deal with this in a variety of ways including mind body prac-
tices such as mindfulness, meditation and counselling. Participants reported that such prac-
tices could help reduce some of the stress associated with informal care provision.

“I am a long-term practitioner of meditation and mindfulness, which helps me deal with the
stress of my caring role, I feel this would benefit others because without this I do not know
what state I would be in” (IC-011).

Discussion
While the impact of informal caregiving can take its toll on informal caregivers, there are also
positive aspects associated with the informal caregiving role. Firstly, participants conveyed the
feeling of how being a caregiver had a negative impact on their physical, psychological, and
social lives, contributing to a high level of caregiver burden. The concept of caregiver burden is
multidimensional and is the result of multiple responsibilities including managing dietary and
fluid requirements, medication management, dealing with haemodialysis related complica-
tions and attending to personal care requirements and household duties. But at the same time,
caregivers identified positive aspects in how caregiving provided them an opportunity to
strengthen connections with their loved one, and a correlating sense of fulfilment from com-
mitting to care.
The findings from the current study concur with recent systematic reviews into caregiving
in a range of settings, not just the haemodialysis setting. They have identified that caregivers of
patients with multimorbidity and those of patients with cancer experienced significant care-
giver burden which compromised their overall health and wellbeing [31,32]. They likewise
concur with those systematic reviews which have considered caregiving in a range of different
renal settings including haemodialysis, peritoneal dialysis, renal transplantation and those

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

patients who are managed conservatively [33–35]. The current study further contributes to the
existing knowledge base by eliciting novel findings relating to what caregivers feel would
improve their caregiving experience, whilst considering the views of healthcare professionals
on the components of a supportive intervention to educate and support caregivers in their car-
ing role.
The perceived lack of input in terms of practical, psychological, social, and emotional support
from healthcare professionals and family members or friends further exacerbated the difficulties
caregivers experienced. Like this study, family caregivers caring for patients with heart failure
have also identified poor support from healthcare professionals as a major challenge. This had a
negative impact on the ability of family members and friends to provide safe care while coping
with the varied demands of the caregiving role [36]. Difficulty in obtaining a broad range of
information needs from healthcare professionals was identified in our study which contributed
to the uncertainty and stress experienced by caregivers. There was a need for care related infor-
mation as well as information about services and available support i.e., in terms of finances. This
phenomenon was akin to the experience of caregivers in other countries where dissatisfaction
with healthcare providers in terms of information provision resulted in greater caregiver burden
and a subsequent reduction in caregivers’ psychological wellbeing [37,38].
Despite the challenges and burden experienced by caregivers in this study, findings also
show dimensions to facilitate positivity and motivation to continue informal care provision.
These include the development of closer caring relationships, commitment to provide care,
and the opportunity to reciprocate care. Spiritual beliefs also constituted an important moti-
vating factor for informal caregiving. Previous research in the field of dementia and cancer
concurs that reciprocity, family duty and filial obligation are frequently cited motives for infor-
mal care provision [39–41]. Across different cultures such as South Africa, China and Brazil
the reasons for providing informal care are similar to filial obligation and reciprocity empha-
sising commonalities across different cultures [42–44]. The increasing evidence to indicate the
benefits of positive aspects of informal caregiving further highlights the need for further
research into developing a supportive intervention which includes strategies to foster a more
positive caregiving experience. The findings from this research will be used to inform future
adaptation of practice and supportive intervention development targeting informal caregiver’s
specific needs.

Strengths and limitations

The strength of this study is its account of the phenomenon of caregivers caring for a person
with ESKD receiving haemodialysis, through the views and experiences of carers using semi-
structured interviews. The research has provided a rich description of their daily experiences
and unmet needs, highlighting the challenges and difficulties as well as the more positive
aspects of informal care provision in this cohort of patients. This study provides a foundation
upon which to develop the components of a supportive intervention. However, despite the rig-
orous research design, all participants were from a white ethnic origin. It was not possible,
therefore, to compare different ethnic groups which limit the generalisability of the findings.
The participants came from two haemodialysis settings within Northern Ireland. This con-
strained the transferability of findings to populations outside Northern Ireland given the diver-
sity of the delivery of healthcare in other settings and cultures.

Conclusion
This qualitative research study highlights the high level of burden, unmet practical needs and
lack in psychological support given the complexity of experiences for caregivers of patients

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PLOS ONE Exploring the unmet needs and experiences of informal caregivers of patients receiving haemodialysis

with ESKD undergoing haemodialysis. The expectations and demands of caregivers of this
patient group continue to grow as the numbers of people with multiple co-morbidities
accepted unto haemodialysis increases year on year. The findings from this study identifies
opportunities in terms of practical, psychological, and social support. In doing so healthcare
providers might now have the opportunity to develop and implement a suitable intervention
to facilitate a more positive caregiving experience through the provision of knowledge, skills
and assistance to facilitate the demands of their caregiving responsibilities, enabling them to
perform their caring role more effectively.

Acknowledgments
The authors would like to thank the informal caregivers who participated in the semi-struc-
tured interviews.

Author Contributions
Conceptualization: Michael Matthews, Helen Noble.
Data curation: Clare McKeaveney.
Funding acquisition: Michael Matthews, Helen Noble, Joanne Reid.
Investigation: Michael Matthews.
Methodology: Michael Matthews, Helen Noble, Joanne Reid.
Project administration: Michael Matthews.
Resources: Michael Matthews.
Supervision: Clare McKeaveney, Helen Noble, Joanne Reid.
Writing – original draft: Michael Matthews.
Writing – review & editing: Michael Matthews, Clare McKeaveney, Helen Noble,
Joanne Reid.

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