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Research Article|Articles in Press, 102319

The hidden psychosocial impact of caregiving with chronic haematological cancers: A qualitative study

Open AccessPublished:March 16, 2023DOI:https://doi.org/10.1016/j.ejon.2023.102319

      Highlights

      • A team approach to supportive interventions for caregivers of an individual with a CHM is required.
      • Carers value healthcare professionals' recognition of the caregiver's role.
      • Carers need continuous communication and accurate information throughout the disease journey.
      • Vulnerable carers needing targeted support should be actively identified.

      Abstract

      Purpose

      People living with a chronic haematological malignancy (CHM) are living longer due to the continued emergence of novel treatments. Their care is mostly delivered in an outpatient setting, and little is known about their experience of this disease trajectory. The aim of this qualitative study was to explore carers’ experiences, expressed needs and psychosocial vulnerability.

      Method

      In-depth interviews with a purposive sample of carers (n = 11) explored their experiences of caring for someone with a CHM and the impact it had on their lives. Reflexive thematic analysis guided data analysis.

      Results

      Two main themes were developed from the interview data: 1) restructured living, and 2) sustaining caring, with six subthemes: shrinking world, constant carer, healthcare professional support, needing information, particularly in the early days, peer support, and taking control.

      Conclusions

      Caregivers of patients with a CHM undergo a significant life change which is often invisible to others. Identifying carers at risk of psychosocial vulnerability and recognising the caregiver as a member of the care team are significant steps towards addressing the support needs of this population.

      1. Introduction

      Emerging in blood and lymph forming tissues, blood cancers (leukaemias, lymphomas, and myelomas) are collectively the fifth most common cancer grouping in developed countries (
      • Howell D.A.
      • McCaughan D.
      • Smith A.G.
      • Patmore R.
      • Roman E.
      Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—a qualitative study from the UK's Haematological Malignancy Research Network.
      ). Most blood cancers are incurable and typically follow a changeable trajectory of relapsing and remitting disease which is often unpredictable and requires varying treatments (
      • Howell D.A.
      • McCaughan D.
      • Smith A.G.
      • Patmore R.
      • Roman E.
      Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—a qualitative study from the UK's Haematological Malignancy Research Network.
      ). It is estimated that 60% of blood cancers are incurable and consist of more chronic or indolent diseases (e.g. chronic lymphocytic leukaemia (CLL), follicular lymphoma (FL), marginal zone lymphoma (MZL) and myeloma) (
      • Howell D.A.
      • McCaughan D.
      • Smith A.G.
      • Patmore R.
      • Roman E.
      Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—a qualitative study from the UK's Haematological Malignancy Research Network.
      ). These malignancies often have a slow presentation, in which symptoms may be vague and intermittent as commonly seen in benign, self-limiting conditions, particularly in older age groups, meaning that cancer is not always immediately suspected (
      • Howell D.A.
      • McCaughan D.
      • Smith A.G.
      • Patmore R.
      • Roman E.
      Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—a qualitative study from the UK's Haematological Malignancy Research Network.
      ). Haematological malignancies tend to differ from solid tumours in their prevalence among older people with additional complex medical needs, who over time become more fragile due to the nature of the disease, treatment and symptom burden (
      • Capodanno I.
      • Rocchi M.
      • Prandi R.
      • Pedroni C.
      • Tamagnini E.
      • Alfieri P.
      • Merli F.
      • Ghirotto L.
      Caregivers of patients with hematological malignancies within home care: a phenomenological study.
      ).
      Despite being incurable, many of these blood cancers are now managed as chronic conditions (
      • Howell D.A.
      • McCaughan D.
      • Smith A.G.
      • Patmore R.
      • Roman E.
      Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—a qualitative study from the UK's Haematological Malignancy Research Network.
      ). Some may be managed through a “watch and wait” protocol, in which interventions are considered at the time of disease progression or an increase in disease burden. With increasingly available treatments, many patients are living for long periods with conditions that were once considered incurable (
      • Caldwell E.
      Experiences of living with incurable haematological malignancy: a research portfolio [University of Edinburgh].
      ). However, this also heightens increased morbidity and further impact on quality of life. Other issues associated with CHMs include the challenge of living with unpredictability, which may result in psychosocial problems (
      • Howell D.A.
      • McCaughan D.
      • Smith A.G.
      • Patmore R.
      • Roman E.
      Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—a qualitative study from the UK's Haematological Malignancy Research Network.
      ).
      Living with a CHM frequently means living with a prognosis that is more often than not unpredictable. Caring for an individual with a diagnosis of a CHM often involves becoming part of the journey, supporting the patient right from diagnosis and decisions on treatment options to providing hands on care (
      • McCaughan D.
      • Roman E.
      • Smith A.
      • Patmore R.
      • Howell D.
      Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers.
      ). Carers are also expected to take on additional roles such as maintaining a level of optimism and hope (
      • Howell D.A.
      • McCaughan D.
      • Smith A.G.
      • Patmore R.
      • Roman E.
      Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—a qualitative study from the UK's Haematological Malignancy Research Network.
      ).
      There is little known about caregivers' experience in the context of CHMs. Previous research has identified carers’ role in shared decision making with the patient throughout the disease journey and they generally have higher information needs than the patient especially in relation to psychosocial information (
      • Rood J.A.J.
      • Nauta I.H.
      • Witte B.I.
      • Stam F.
      • van Zuuren F.J.
      • Manenschijn A.
      • Huijgens P.C.
      • Verdonck-de Leeuw I.M.
      • Zweegman S.
      Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: not “one-size-fits-all”.
      ). Furthermore, caregivers are interested in practical information such as finding financial resources to assist the patient, managing side effects of treatment and the possibility of other family members being diagnosed with cancer (
      • Gansler T.
      • Kepner J.
      • Willacy E.
      • Soloe C.
      • Rupert D.
      • Jarblum M.
      • Driscoll D.
      • Orr A.
      • Fitzgerald T.
      • Esparza A.
      Evolving information priorities of hematologic cancer survivors, caregivers, and other relatives.
      ).
      Carers tend to have elevated levels of psychological distress and poorer quality of life and carers of patients with an incurable malignancy report unmet needs in their daily activity (
      • George E.S.
      • Kecmanovic M.
      • Meade T.
      • Kolt G.S.
      Psychological distress among carers and the moderating effects of social support.
      ;
      • Wang T.
      • Molassiotis A.
      • Chung B.P.M.
      • Tan J.-Y.
      Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review.
      ). In addition, caregivers are frequently overlooked as being susceptible to vulnerabilities as often the patient is considered at the core of the healthcare system.
      Carers can experience considerably more unmet psychosocial needs than cancer patients (
      • Soothill K.
      • Morris S.M.
      • Harman J.C.
      • Francis B.
      • Thomas C.
      • McIllmurray M.B.
      Informal carers of cancer patients: what are their unmet psychosocial needs?.
      ). This is important, as unmet psychosocial needs in carers of cancer patients has been associated with poor physical and mental functioning (
      • Kim Y.
      • Carver C.S.
      Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship.
      ). It is known that disease-related information needs are the most commonly reported unmet needs of informal caregivers (
      • Wang T.
      • Molassiotis A.
      • Chung B.P.M.
      • Tan J.-Y.
      Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review.
      ). Unmet needs that are associated with caregivers' well-being are under-reported, as most research has generally focused more on patients' well-being. Support for informal caregivers is repeatedly reported as insignificant and the unmet needs of informal caregivers are often ignored and excluded from healthcare policy and planning (
      • Wang T.
      • Molassiotis A.
      • Chung B.P.M.
      • Tan J.-Y.
      Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review.
      ). An all-inclusive understanding of both patients with advanced cancer and informal caregivers’ unmet needs can enable healthcare professionals to develop evidence-based specific supportive interventions. Despite patient and family centred care being advocated by the World Health Organisation (WHO), structured needs assessments of informal caregivers remain an uncommon practice (
      • Wang T.
      • Molassiotis A.
      • Chung B.P.M.
      • Tan J.-Y.
      Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review.
      ).
      The problems for many carers are complex, and potential solutions need to be addressed (
      • Soothill K.
      • Morris S.M.
      • Harman J.C.
      • Francis B.
      • Thomas C.
      • McIllmurray M.B.
      Informal carers of cancer patients: what are their unmet psychosocial needs?.
      ). Distress commonly experienced by caregivers has the potential to be alleviated or avoided with appropriate psychosocial support. However, too often, access-to-care barriers interfere with caregivers receiving urgent support services. Formally supporting caregivers has the potential to improve caregiver mental and physical health, improve patient outcomes, and reduce the financial toll of care in the long-term (
      • Applebaum A.J.
      • Kent E.E.
      • Lichtenthal W.G.
      Documentation of caregivers as a standard of care.
      ).
      The aim of our study was to explore caregivers’ experience of caring for a person with a CHM.

      2. Methods

      2.1 Design

      Caregivers of people living with a CHM were interviewed on their caring experience. The interview schedule (Table 1) used was informed by the results a scoping review exploring the meaning of psychosocial vulnerability in carers, in addition to the findings of a qualitative evidence synthesis (QES) exploring the experiences of caring for an individual with a CHM (
      • Cormican O.
      • Meskell P.
      • Dowling M.
      Psychosocial vulnerability among carers of persons living with a chronic illness: a scoping review.
      ;
      • Cormican O.
      • Dowling M.
      Providing care to people living with a chronic hematological malignancy: a qualitative evidence synthesis of informal carers' experiences.
      ). A PPI (public, patient involvement) panel was invited to review and provide feedback on the interview schedule.
      Table 1Interview guide.
      • What do you believe are issues experienced by carers of an individual with a CHM?
      • How has caring impacted on your life generally?
      • Do you believe your health and wellbeing is affected? In a negative or a positive way?
      • How do you cope on a daily basis?
      A descriptive qualitative approach was employed. This study is reported in accordance with the standards for reporting Consolidated criteria for reporting qualitative research (COREQ) (
      • Tong A.
      • Sainsbury P.
      • Craig J.
      Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.
      ) (Supplementary file).

      2.2 Ethical considerations

      Ethical approval was granted by the authors' University ethics committee (Ref: 2021.11.003 Amend 2203). Written consent was obtained from each participant prior to interview. In addition, participants’ names were not disclosed elsewhere and any information which could potentially identify a participant was removed from the interview transcripts. All participants were assigned pseudonyms to ensure anonymity.

      2.3 Inclusion criteria

      Inclusion criteria for this study were caregivers over the age of 18 years old, caring for an individual with CHM (defined as multiple myeloma (MM), Chronic Lymphocytic Leukaemia (CLL), Myelodysplastic syndrome (MDS) or indolent lymphoma) and willing and able to give informed consent.

      2.4 Recruitment and participants

      A number of strategies were used to recruit participants. The PPI panel assisted with recruitment through guidance on the best approaches to reach carers. A call for participants was made through the social media outlets of the Irish Cancer Society, Multiple Myeloma Ireland, CLL Ireland, Lymphoma and Leukemia Northern Ireland as well as MDS UK. Information about this study was also shared with a number of regional cancer support centres. Furthermore, healthcare professionals working nationwide with this cohort of patients were informed about this study. Purposive sampling was used. A total of 13 people contacted the first author expressing interest in participating. One person completed the consent form and the demographic information but failed to arrange a date for the interview despite being contacted on one further occasion. A second individual was also sent information about the study however failed to respond.

      2.5 Procedure

      All interviews were virtual via Zoom between March and June 2022 and undertaken by the first author, a female clinical nurse specialist in haematology and experienced qualitative researcher. Participants were given time prior to interview to consider participating and information was shared about the reason for the research and the clinical background of the interviewer. Interviews lasted approximately between 15 and 45 min. Debriefing with the second author (an experienced female qualitative researcher with a clinical background in haematology nursing) was carried out after each interview and focused on reflexive thoughts generated by the first author (
      • Finlay L.
      • Gough B.
      Reflexivity: A Practical Guide for Researchers in Health and Social Sciences.
      ).

      2.6 Data analysis

      The first author transcribed the interviews using Otter.ai to facilitate the transcription process. All transcripts were checked for accuracy before analysis. Reflexive thematic analysis (Braun and Clarke, 2019) guided data analysis which was managed using NVivo 12. Thematic analysis is a method for identifying, analysing and reporting themes within the data. Reflexive thematic analysis was considered appropriate as it can be used on a continuum of deductive or more inductive analytic processes (Braun and Clarke, 2021). We used reflexive thematic analysis as an inductive approach to code carers’ experience following repeatedly reading and re reading the data without trying to fit it into a pre-existing coding frame. Common themes were developed from initial codes by the first author. Following this, themes were then refined and clear definitions and names for each theme were formulated using an inductive approach by the first and second author. The final analysis and write up of the data were then completed, telling the story of the data within and across themes. The PPI were then invited to provide feedback on the final iteration of themes developed however they were not involved in the initial coding of the data or the theme development stage. Feedback from the PPI panellists who reviewed the findings conveyed their confidence that the themes developed conveyed the experiences of the carers of patients with a CHM. There were also suggestions made on how to best support the carer based on the findings from a health care professional perspective.

      3. Findings

      Interviews with ten women and one man were undertaken. Two major themes with subthemes were developed: ‘Restructured Living’ and ‘Sustaining Caring’ (Table 2). Participants were caring for individuals diagnosed with multiple myeloma, CLL, MDS and indolent lymphoma. Most carers were spouses, living with the family member and over the age of 40. The majority of carers spent less than 4 h daily caring and the majority of patients had been diagnosed for at least 3 years (Table 3).
      Table 2Themes and additional illustrative quotes.
      ThemeQuotation
      Restructured Living: Shrinking Worldnobody realises the worry or the impact […] Well you always say to the outside world I am grand but then when he's at home. I know he's suffering. I know. There are side effects and the effects are impacting him and stuff like that. But we don't say it to people because it's better than the alternative....not having treatment you know […] I am conscious that my husband is at home everyday on his own so I come home straight instead of going out and gallivanting and having lunch or whatever. You know, you're just not … I am well trained. So you restrict or I've chosen to, to be home because here is almost no alternative. [P7; CLL]
      And they are where there's one thing about the invisible cancer but there's the invisible toll on little kids […] I'm not getting anybody, family or anybody out there to understand the severity of it because it's invisible. All I got was Ah sure, he looks great. […] like people say god you are looking great because they don't have that awful the grey washed out look that a lot of people do, and they're not necessarily losing their hair, depending where they are and what they're on […] You know, and there are times it can be a lonely place to be but there's also part of me that feels like that's life. [P1; CLL]
      Constant CarerI really want this thing, for things to work and go ahead with the … with the chemotherapy. It's a worry it's just an ongoing continuous worry we never stop worrying. I never stop worrying about her. God almighty, God help her she's gone through an awful lot […] If i went in on Monday now for example and then she gets her bloods tested and then you have to wait for the results of that for an hour and a half and then if she needs a blood transfusion you have to order that takes a long time. And it could be four in the afternoon before she is getting blood. Which means it'll be half 5 or close to 6 when the two of us go home and that doesn't help her. [P8; MDS]
      I think I suppose it does put strain on I think any caring role, you know, puts strain on relations with whoever is taking the burden on as opposed to others. […]I just drink a glass of wine in the evening,make the head go away. And so they're the, they're the am they're the two extremes of the good things that you do to cope with it. And then the other extreme was the bad thing and that it's like when you're tired and you should be going to bed early but your head is worried and your mind is like you know, you know is there a bottle of white wine in the fridge. Let me have a glass of that and I was trying put it out of my mind till I wake up in the morning, or in the morning wake up thinking about it. [P5; MDS]
      So I kind of like she would always be the number one that I go to, if I have a problem or an issue where if it's good news or bad news she would always be the first person to know and so when we were going through the treatments and the transplant, it was very much I had to kind of keep the poker face a lot and you know, kind of think very black and white about things. You know, I had to be very logical. And for me, that's hard because I'd be not dramatic, but I always think of the worst and you know, I would always you know, think of 10 bad things that could happen instead of the, the million good things that might happen. Yeah, so I had some very much put that hat on and be like, Okay, this is what's happening. This is how it's happening. This is what could happen. And it was just very robotic. I would say I had to kind of become in her presence and then in the background, kind of falling apart my own way. [P6; MM]
      […] coming to terms, the fact is kind of a long term illness. It's very rare that it goes away. Yeah. A small few that actually, you know, end up in that position. So I suppose that brings all its own implications then because it's something you have to learn to live with and cohabitate with do you know, it's always there in the background, but still get on with living as much as you can […] [P9; MM]
      We were very prepared. I was prepared for it coming back because I knew what it was and I knew what all the you know, the treatments that were out there, the new the novel treatments, I suppose and stuff. And like, I know what's coming along next. My husband doesn't, but I know what's coming next. I know how soon it can potentially come back […] in your head, not all the time, but on a fairly frequent basis is it going to come back? Has he got a lump? Is that lump I see or is that just you know, and you're watching for the lumps and then they come after I think four years […] [P7; CLL]
      Sustaining Caring: Needing information: Particularly in the Early DaysMy cousin is a Macmillan nurse in the UK. Okay, so we done all the research on NHL … my questions right in everything we did […] So he has this thing. She said what's called we call it CLL like a pet name. And I said, okay, and she was talking away about this and possible treatments and all the rest because his bloods were quite bad when he went in and next thing the two of us came out and […] said what the hell do I have? And I said something starting with C […] And then when it came to CLL I went to, I found the health unlocked forum which is a brilliant forum and I found CLL group within that. And then that led us to CLL Ireland and I've done all the research. […] [P7; CLL]
      And I am a person that likes to be transparent and likes to know things. So it was then very difficult for me after to get hold on someone to ask questions, even simple questions like what to put into his hospital bag when he went for the stem cell treatment. [..] I even went to my own GP and she tried to give advice of people that would be available to give me some information, you know, but it was just because of pandemic, the phone rang out everywhere. You know, trying to … So you know looking back I still don't think it was stupid what I did, because I just didn't know. […] I suppose confusion and where to go for information. You […] it was a very confusing time I suppose, even though you get information from the consultant, it was more technical than that could help you emotionally […] And I just tried to get through with reading, you know, going online and reading and logging onto the UK sites. [P10; MM]
      Healthcare Professional Support.His consultant is brilliant. And we went in she said you know what … She was talking about treatment because it had come back fairly aggressively. […] He had neutropenia there a number of months back and I had to give him the injections and stuff even that giving injections into the tummy you know. Do I look like somebody that is qualified to do that? (laughs) And, you know, I had to do it the last time as well. And like you're doing this thing, someone comes up to the house and shows you, do this now. And then you have to do it afterwards. […] he's back into […] in May. […] is fabulous. She's been really good to him and […] the clinical nurse, […] Lovely absolutely so supporting the first year. [P7; CLL]
      I have to say the nurses, the nurses in [Hospital name] that are on the CLL trial. They're brilliant. They're kind. They're thoughtful. (pause) They get it. (Crying, upset) […] Couldn't do it without nurses, whatever about the doctors they swan in and swan out. Those nurses keep it ticking go. So God bless them. […] Yeah cuz I said to them. Do I have to send him? I'm really scared that he's gonna get COVID. And they go okay, [..]. We understand that if you want to try something else, we'll do that but it would be good. If I made a promise to you. […] But you can pick up the phone and you can just say, look, what do I do? And they've never said no. So they've been terrific. Absolutely amazing […] I can relax because I know they've done their very, very best and they listen even though they think I'm mad. They listen and they understand [P1; CLL]
      Peer SupportI could be of support to someone I don't know I guess you know, when you help others are, yeah, you meet someone fora coffee or do a walk and talk and I could be in great form one day and someone else not in great form. And I could tell them strategies I use or they could do the same for me. You know, we'd have something in common, I suppose. To be there for each other. […] her husband was in his 50s and they were she was from Dublin. And he was on the early stages of multiple myeloma and her and I met a few times and another woman and her husband was […] age. And you know, it was just nice, and we'd have a coffee and a laugh. And sometimes they'd tell me books they are reading about like meditation or whatever to help them and you know, it was just really nice. And it was like you didn't feel so different. [P3; MM]
      Taking ControlEvery day is a blessing […] And that's what it's cup half full, half empty. […] So it's those things and making sure you don't drink alcohol, making sure you don't smoke. Make sure you don't do any of that crap. So you keep your head utterly focused on what you need to do. [P1; CLL]
      I wouldn't give into not working because that was my independence. That was yeah, you know my identity I suppose and I wasn't willing to give up even though on the flip side I was exhausted. [P3; MM]
      Table 3Caregiver demographics.
      Participant Name (Pseudonym)SexAgeCondition being care forRelationship to care recipientLiving CircumstancesProportion of working day spent caringAdditional SupportIs the care recipient receiving treatmentHow long since diagnosisWho is involved in care?LocationRural or UrbanAccess to own transportDistance from treatment CentreEmployment StatusAny Chronic IllnessDependentsReceipt of any SupportsArea of Life most impacted by diagnosis
      Patricia (1)F41–60CLLSpouseLives with family member>12 hYesOn Supportive treatment1–2 years agoDoctor and NurseEastRuralYes>50kmWorking reduced hours due to caring for someoneNoYesYesEmotional
      Laura (2)F61–80CLLSpouseLives with family member<4 hNoChemotherapy/Other Treatments>5 yearsDoctorEastUrbanNo<10kmRetiredYesNoNoSocial
      Emotional
      Psychological
      Clare (3)F18–40Multiple MyelomaSpouseLives with family member4–8 hNoChemotherapy/Other Treatments3–4 years agoDoctor and NurseEastUrbanYes>30kmEmployedYesYesYesSocial
      Emotional
      Geraldine (4)F61–80Multiple MyelomaSpouseLives with family member<4 hNoOn Supportive Treatment>5 yearsDoctor and NurseWestRuralYes>10–20kmEmployedNoNoNoEmotional
      Karina (5)F41–60MDSParentDoes not live with family member<4 hYesChemotherapy/Other treatments3–4 years agoDoctor and NurseWestUrbanYes>10–20kmEmployedNoYesNoUnknown
      Ruth (6)F18–40Multiple MyelomaParentDoes not live with family member<4 hYesOn Supportive Treatment4–5 years agoDoctor and NurseEastUrbanYes>30kmEmployedNoNoNoSocial
      Emotional
      Psychological
      Financial
      Lorraine (7)F61–80CLLSpouseLives with family member<4 hNoChemotherapy/Other treatment>5 years agoDoctor and NurseSouthRuralYes<10kmEmployedNoNoNoEmotional
      Psychological
      Financial
      Frank (8)M61–80MDSSpouseLives with family member8–12 hYesChemotherapy/Other treatments7–12 months agoDoctor and NurseEastRuralYes>30kmRetiredNoNoNoSocial
      Betty (9)F61–80Multiple MyelomaSpouseLives with family member<4 hYesChemotherapy/Other treatments>5 years agoDoctor and NurseEastRuralYes>50kmRetiredYesNoNoSocial
      Emotional
      Psychological
      Financial
      Tina (10)F41–60Multiple MyelomaSpouseLives with family member<4 hNoOn Supportive treatments1–2 years agoDoctor and NurseEastRuralYes<10kmEmployedNoNoNoSocial
      Sarah (11)F41–60Indolent LymphomaSpouseLives with family member<4 hYesOn Supportive treatments4–5 years agoDoctor and NurseWestRuralYes>30kmRetiredNoNoNoSocial

      3.1 Restructured living

      This theme represents the upheaval a diagnosis of a CHM brings on carers' lives. Their ‘restructured living’ led to a shrinking world; the experience of an invisible cancer and the restrictions it brings in terms of socialising and other activities in addition to others' misunderstandings of the disease. Furthermore, carers were relentlessly living under the threat of relapse and being a constant carer. Constant caring led to never-ending worrying and advocating on behalf of the patient.

      3.1.1 Shrinking world

      Carers often felt confined within the limitations of the illness. Behaviours and social activities were often curbed due to the nature of the disease and the need to “protect” the patient from potential harm or exposure to pathogens. Carers expressed others’ misunderstandings of their rationale for the need to protect, due the invisibility of the disease.I have no social life anymore. Like I used to enjoy an odd pint and I don't go to the pub anymore. Well, I know covid has had a big impact on a lot of things. You know I used to go for the pint with my friends now and again and I probably would have continued to do that if covid hadn't happened except for the fact they I just can't get leave her on her own anymore. [P8; MDS]I most certainly watch now to avoid a lot of people you know, to make sure I'm not getting an infection, not to pick up anything that I could bring home. So you constantly watch out where you're going, you're planning a lot more, you know. [P10; MM]I would just call them your awareness of things like it just being very careful when I'm out anywhere because of somebody living with it. I'm just so careful that I'm not bringing back anything that would, you know, put him at risk. [P11; Indolent Lymphoma]
      Carers sensed that the impact of the diagnosis on the patient and their lives was constantly misunderstood. It was an endless presence involving learning to adapt and live with the invisibility and the isolation associated with being a carer.One of the key things that I would think is that’s on an emotional or a kind of a mental level is I think it's very hard for cancer free people to understand, you know, for the patient themselves for those around them […] what does that mean is it a cancer is it really cancer is it especially with kind of MDS and all these sorts of things. And then the word cancer maybe isn't used as much in there kind of is confusion. So I think it's a harder one for patients and carers to understand would be just for me, it's something that's definitely I noticed more than then with others […]. [P5; MDS]
      Often the patient does not look like a ‘typical’ cancer patient, therefore others frequently perceived the patient as looking well which also contributed to misunderstanding. This added to carers' frustrations as the diagnosis had consumed their lives and yet was so well concealed from others.There was the was the emotional thing. And again, around family not really understanding. I suppose I felt it I felt fairly isolated, I would say for a long time. [P2; CLL][…] the fact that physically, the person still looks the same. It was difficult to say to people that yeah, he has cancer, and their reply was he looks fine. So there was that aspect of it. [P4; MM]
      Other aspects of the ‘shrinking world’ included changing relationships. The diagnosis consumed all aspects of life including relationships with family and friends. Many changes were also due to carers' persistent concern for their relative.It changed our relationship like you it put a lot of stress because the uncertainty of day to day like, I guess […] We had no family time at all ya and that was really stressful and then caused so many arguments between [us] […] I go to like you know, swimming and all that or go out and I see all the couples and stuff like that and that was that's been very hard. I suppose […] doesn't come with me to those things […] And I guess you are like, being honest, like sexually like like that.. The physical is not there. I suppose it was because he's not up to it … […] We're more like friends. You know, like it just changes [P3; MM].

      3.1.2 Constant carer

      Becoming a carer for those living with a CHM meant continuously being ‘switched on’ to caring. The role is multi-faceted and although the threat of relapse is always on carers' mind, the additional responsibilities of being a carer also involve constantly advocating for the patient.He doesn't want to know. He doesn't want to know that stuff. But I will say to him if I was worried […] I actually did consider about a month ago to speak with someone I really need help … it's probably the first or second time in my life that I need speak to someone. […] this is a life changing diagnosis because of the fact that there is no end game as far as the … [P7; CLL]
      Carers also had concerns about aspects of the patient's vulnerabilities that no one else could see or relate to, compounding additional worries.…And so emotionally, you take on what your partner … the stresses of your partner […] It’s curtailed my life. [P7; CLL]So I think once in a while, it would be interesting for the doctors to talk maybe every three months or so to a carer to see their side you know, because we have a different … because we live with the people 24 hours we have a different outlook on it. [P10; MM]
      Constant worrying had a negative impact on carers and led to a strain on their mental and physical health, often overwhelming them.Trying to get out in and out of the hospital every day for the chemotherapy is difficult. The cancer diagnosis has added worry to the situation really worry and worry I suppose is worse than anything else because I know I just worry all the time about it. She is never never … out of my mind. [P8; MDS]And I have to go to counselling, because I got really down and I was trying to cope […] sometimes […]says, like, Please, God […] I am going that be here for that and like, oh, that just breaks my heart (tearful). Like I just, it's like I stopped like it's like, I swear, I feel like something's choking me when he says those things because that's really hard to hear, I suppose […] I try not to cry because I don't want him to. [P3; Multiple Myeloma]
      Carers also struggled with their emotions and worked at hiding these from the patient.[….] would depend on me sometimes and he talked to me about his worry, you know, and then I guess I would try and hold it all together. But I kind of was angry about that too, because I was struggling myself. But I couldn't turn to […]. I felt because he was going through his stuff and he had an enough. Yeah and mentally and physically he was going through all his thing whereas I was when you're going through it I guess mentally and physically … [P3; MM]
      Carers’ priority was advocating and protecting the patient, but for some, they recognised their need to adjust to the role of being a constant carer.I would have been quite down and then I found kind of when everything was not over, but when she was successfully on maintenance therapy, I had to kind of go to the doctor and have a chat with my own doctor about my own kind of mental health. I just felt I was kind of in a bit of a dark place myself, and I don't know if it was through kind of the trauma of mams situation. That's the only way I can kind of connect the dots to it, you know. [P6; MM]
      A coping method employed by some involved knowing the management plan and using it as a safety net.That’s my life. It has to be very, very disciplined. Because there's a lot of linchpins that can fall down if I'm not doing what I need to do. [P1; CLL]While there was treatment going on, we knew we're on a certain path. There was no kind of markers to be reached. There was blood to come down. There was no tests to be done. And we knew the path we were on and then I suppose when that stopped, I think the two of us said well what now?! [P4; MM]
      Another aspect of the ‘constant carer’ role was reaching a level of acceptance in relation to the diagnosis. Carers gradually accepted that it was a persistent condition, much like a chronic disorder, that needed to be maintained and managed and it would never be cured.It's a forever thing […] But it was just you know, it's something that's constantly there in your life and it's constantly in in your mind. [P7; CLL]Even now, it’s every day it's there […] I think it just does your head in the negative basis. You know it’s a permanent thought that’s there. You know, there's no there's no switching off from us. [P4; MM][…] it's just the kind of longevity of it that it's not finite. It's again, you know, it's like, it's always going to be there, you know [P5; MDS]
      Being a constant carer was also living with the fear of relapseI would have been worried I've always worried about relapse, and there was relapse. [P2; CLL][…] I suppose knowing that it's never going to go I guess, you know, the way with throat cancer or breast cancer, you kinda know, okay, it's going to be removed and then there's a lot of hope that that's it, you know, like that you're not going to go relapse again. Whereas with multiple myeloma because it's so it's there. It's and you can relapse but there's it's never going to go away. [P3; MM][…] the thought of will it come back or, you know, there's always that, you know, you're waiting you're waiting. [P6; MM]

      3.2 Sustaining caring

      The caring role in CHM can last for many years through diagnosis and potential disease relapse. The trajectory of CHMs has changed; patients are living with their diagnosis as a chronic incurable condition for many years. For the carer it is frequently demanding, both physically and mentally, and can often be overwhelming. Health care support is of significant importance to carers and there is high value placed on provision of their advice and consolation. In addition to this, informational support, especially in the early days of diagnosis, enabled carers to maintain some level of control, especially when faced with a diagnosis that often is considered rare with scant information available. Another important component of sustaining caring identified was peer support; seeking out support groups either online or in person provided a level of empowerment for carers to help others as well as a means of comfort in recognising that they are not alone in the situation.

      3.2.1 Needing information: particularly in the early days

      In order to cope with the new diagnosis, many carers actively prepared themselves by seeking out information. Carers needed to feel some level of control and sought information from peers and resources within the community.[…] we were told that my husband had non-Hodgkin’s lymphoma, so we were kind of prepared for that. And then then when we went in to see his consultant, it turned out he had CLL, so we didn't have a clue … I had done all this research. [P7; CLL]
      Some carers felt excluded when the patient received all the information and it was difficult to obtain relevant information.[…] it's all about the patient to make sure the patient is wrapped in cotton wool but of course the carer has questions as well because a lot of things are just not clear to the carer or how to handle situations […] You know I that was one of the only opportunities I was able to ask questions but because of us trying to take it all in on and what he had got you know, you wouldn't have the time to ask the questions because we didn't understand it really altogether. [P10; MM]
      The lack of information available at diagnosis made it difficult for carers to understand the condition and the rarity of it.Am well, I suppose it's the lack of information initially. That's what I would have probably experienced because it's the first time that I ever heard of multiple myeloma. And you know, we were … with other cancers there's a lot more information out there. Am but when I was Googling mad, you know, trying to figure out what this was or how could we deal with it, there was, you know, very kind of different information out there and a lot of it was kind of mainly from the States, I thought as well. There was very little from kind of the Irish perspective. [P6; MM]

      3.2.2 Healthcare professional support

      Having a good relationship with one or more health care professionals enabled carers experience some acknowledgement for their caring role. It also permitted them to validate their experience and to feel that they had someone to seek support from.I remember going to my doctor in July and I said I can't do this and she's like […], and she said you need to get like help, like I'm scared for you. I've gone back to on to counselling […], it was amazing. She had everything done like we were had an appointment within the first two weeks of arriving back here. Yes. And we've had like, if I could say anything like the support service for [...] has been fantastic. Like we've been very lucky. […] I spoke to the doctors and the nurses and I was like can I please take the kids into see him? They were brilliant. They were like yeah, no problem as long as they're not sick of course come in. [P3; MM]
      Carers also sought out additional health care professional support from cancer charities and found it beneficial.I got the answer off the cancer nurses. I had to ring the cancer nurses. […] I say the Irish Cancer nurses they were brilliant. They really … they probably were mesmerized. They were brilliant (laughs). Yeah, that's so … a simple step to step guide or something. [P10; MM]There is good support there like. I went down to a meeting in the Cancer Support Unit in […] I mean, some of the girls had said to me, and […] my husband, he didn't really want to go down to it. […] You went down in the morning, you got your treatment. You know, you went in there on the day ward the girls were absolutely lovely. […] And they were all so nice and so pleasant and so good to us. If you had an issue or anything was annoying you, you could ring them … ring in and say this that … to give you a bit of advice, this that and the other and it put your mind at ease, because yeah, because I remember at the beginning when he got treatment. Oh he went in and he got this list and the tablets needed to be taken when he came home. You know, it's part of the treatment. Sure, I hadn't a clue, I was up and down with this list … I didn't have a clue, but once it was on a list for me, I could follow it. You know I could. [P11; Indolent Lymphoma]
      Some carers commented on staffing having a major impact on health care professional support and it often resulted in a break of continuity of patient care. Communication between the carer and each member of the healthcare team involved in the patient's care was important and it was vital that the carer was considered a member of this team to avoid ambiguity and ensure that everyone knew where they stood in their role in the patient's care.I think the role of the CNS slash ANPs is invaluable […] And if, if they are absent or moved somewhere else or out or whatever else, it the information vacuum that exists in the absence of you know, clinical nurse specialists or ANP is massive because you only need to see if things are going well … you only need to see the consultant or the you know, thing you have an appointment once a once in a while, and I suppose the kind of continuity of care that happens as a result of those [P5; MDS]Like, do you know the doctors and the nurses were very good with mam at kind of explaining things and going through things step by step. [P6; MM]

      3.2.3 Peer support

      Seeking out and finding others going through the experience was crucial for carers. Not only did it make them feel less isolated but also helped them feel supported and gain access to further information and resources.[…] it's lovely to meet other carers who are in a similar … you don't feel you don't feel unsure, you know, you're not the only one out there. [P9; MM]
      Support groups provided a vital source of peer support, but with the COVID 19 pandemic were restricted to virtual meetings. Nonetheless, carers still viewed virtual meetings of benefit.The CLL Ireland site is great. It's and it's great for people who are going to be you know, newly diagnosed. They said it would have been much I would have felt much more….Somebody sort of looking out for me had that been there when, when my husband was diagnosed. So I think it's great for people now, but it's also great for me now, like knowing that was there and that you can you can just see people who are going through the same things that you're going through and the same worries. […] So I went on his behalf and became friends with a number of the women they're getting, so that's great as well, we have that, you know, on a daily basis, there's something you know, in the WhatsApp group, you know, where we're just back and forth. And before COVID we did meet. We met once or twice a year. [P2; CLL]I suppose the support group that's here, even though it’s all by zoom at the moment and like, we've met lovely people there and even though it's mainly the patients that come to the meeting, I take comfort from the fact that they're all looking so well. [P4; MM]

      3.2.4 Taking control

      All carers interviewed attempted to maintain some level of control in order to cope. Different techniques used included trying to be ‘present’ as much as possible, engaging in enjoyable activities considered part of the carer's own identity, focusing on personal health and wellbeing, planning something to look forward to and using distraction.It's just keeping each other going and trying to focus on something that's positive that's coming up. And I suppose, like I do, I do feel at times you have to push yourself to do something because if I go ahead and do something well, then that'll encourage [...] to also go ahead to do something. [P4; MM]I have young children who are great at distracting and you know, you do all of that and I exercise I'd run and I try and get swimming and things like that. [P5; MDS]

      4. Discussion

      This study provides an understanding of the lives of caregivers of individuals diagnosed with a CHM. The findings illuminate their risk of psychosocial vulnerability. Carers live with the burden of the illness, and reorganise their lives on constant alert and worry.
      The diagnosis is isolating resulting in many changes to carers’ lives including limiting their social life due to the fear of infection for their loved one, particularly during the COVID-19 pandemic. This self-imposed isolation can lead to loneliness, compounding psychosocial issues and vulnerability. Loneliness is commonly experienced among caregivers, limits their discretionary social contacts and may contribute to hopelessness (
      • Gray T.F.
      • Azizoddin D.R.
      • Nersesian P.V.
      Loneliness among cancer caregivers: a narrative review.
      ). Approaches identified in the literature to overcome loneliness include group interventions or activities such as support groups (
      • Gray T.F.
      • Azizoddin D.R.
      • Nersesian P.V.
      Loneliness among cancer caregivers: a narrative review.
      ). Some of the carers in our study did utilise these supports but for others it was not an option due to work, other family commitments and the need for respite from others to attend meetings. In addition, in Ireland, there are no known current support groups for patients or carers with lymphoma or MDS.
      Constant caring was a feature of carers' lives; this meant that the carer must always be ‘switched on’. The demands experienced by carers are all encompassing and include physical, social, emotional, financial and psychological challenges (
      • Barlund A.S.
      • André B.
      • Sand K.
      • Brenne A.-T.
      A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer.
      ). Our study also highlights the significant impact of the COVID19 pandemic on carers. The findings reveal the additional strain placed on carers due to the isolation, worry of infecting their family members, lack of support services available (and transition to online forums) and the difficulty in accessing health care professionals. Other research has reported on the impact of COVID19 on carers of individuals with a malignancy (
      • Butow P.
      • Havard P.E.
      • Butt Z.
      • Juraskova
      • Sharpe L.
      • Dhillon H.
      • Beatty L.
      • Beale P.
      • Cigolini M.
      • Kelly B.
      • Chan R.J.
      • Kirsten L.
      • Best M.
      • Shaw J.
      The impact of COVID-19 on cancer patients, their carers and oncology health professionals: a qualitative study.
      ; Edge et al., 2021). The fear of infecting loved ones with COVID19 experienced by carers in our study is not unique to haematological malignancies; however it further contributes to their risk of psychosocial vulnerability. In addition, many patients with hematologic malignancies are at risk of not producing antibodies after two doses of the mRNA SARS-CoV-2 vaccines. A substantial subset of vaccinated blood cancer patients may be at high risk of breakthrough COVID-19 infections (
      • Greenberger L.M.
      • Saltzman L.A.
      • Senefeld J.W.
      • Johnson P.W.
      • DeGennaro L.J.
      • Nichols G.L.
      Antibody response to SARS-CoV-2 vaccines in patients with hematologic malignancies.
      ); this places additional stress on both patients and caregivers.
      Worrying was constant for all caregivers interviewed in our study, with younger carers expressing most distress. All carers interviewed lived with the threat of relapse and spoke of the impact of caring on their mental and emotional health, including the exacerbation of certain conditions, the development of chronic conditions and the deterioration in their mental health. This is not a new finding to caring for someone with a cancer diagnosis. Long-term caregiving in cancer has been associated with higher levels of depression and decline in physical health (
      • Junkins C.C.
      • Kent E.
      • Litzelman K.
      • Bevans M.
      • Cannady R.S.
      • Rosenberg A.R.
      Cancer across the ages: a narrative review of caregiver burden for patients of all ages.
      ). Despite the negative impact that caregiving can have on the carer, it is reported that few caregivers use psychosocial services across the blood cancer trajectory (
      • Jim H.S.L.
      • Quinn G.P.
      • Barata A.
      • Cases M.
      • Cessna J.
      • Gonzalez B.
      • Gonzalez L.
      • Koskan A.
      • Montiel-Ishino F.
      • Pidala J.
      Caregivers' quality of life after blood and marrow transplantation: a qualitative study.
      ). Furthermore, in agreement with our findings, a recent study with a similar population of carers of patients with a myeloproliferative neoplasm (incurable blood disorder) reported that psychosocial challenges associated with the diagnosis was one of the most important needs for the caregiver (
      • Rossau H.K.
      • Kjerholt M.
      • Brochmann N.
      • Tang L.H.
      • Dieperink K.B.
      Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): a qualitative study.
      ). This relates to support with coping, morbidity and death and with the struggle associated with the symptoms patients experience with the disorder (
      • Rossau H.K.
      • Kjerholt M.
      • Brochmann N.
      • Tang L.H.
      • Dieperink K.B.
      Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): a qualitative study.
      ).
      A variety of coping mechanisms were identified by carers in our study. Coping mechanisms and acceptance are unique to each individual carer; some caregivers in our study employed strategies such as staying present and living in the moment. Reaching a level of acceptance and seeking out the positive influence the diagnosis had on their relationship, such as appreciating the time together and developing another level of intimacy, were found to help their coping. Similarly, lymphoma and leukaemia caregivers report increased emotional connections and strengthened relationships as a result of caregiving (
      • Fisher C.L.
      • Mullis M.D.
      • Kastrinos A.
      • Wollney E.
      • Weiss E.S.
      • Sae-Hau M.
      • Bylund C.L.
      “Home wasn't really home anymore”: understanding caregivers' perspectives of the impact of blood cancer caregiving on the family system.
      ).
      Also sustaining to constant caregiving was healthcare professional support. Most participants in our study spoke about this being crucial and a positive component to their caregiving journey, especially when caregivers felt considered part of the ‘team’. A lack of acknowledgement for the caregiver or appreciation for their input often leads to carers feeling overlooked, emotionally exhausted and unimportant (
      • Payne J.B.
      • Dance K.V.
      • Farone M.
      • Phan A.
      • Ho C.D.
      • Gutierrez M.
      • Chen L.
      • Flowers C.R.
      Patient and caregiver perceptions of lymphoma care and research opportunities: a qualitative study.
      ). In addition, of significant relevance was one caregiver's effort to highlight that they are with the care recipient on a daily basis therefore know when the recipient is well or struggling. Health care professionals need to remain cognisant of the role caregivers play in the patient's care and the impact that carers have on the patient's wellbeing (
      • Payne J.B.
      • Dance K.V.
      • Farone M.
      • Phan A.
      • Ho C.D.
      • Gutierrez M.
      • Chen L.
      • Flowers C.R.
      Patient and caregiver perceptions of lymphoma care and research opportunities: a qualitative study.
      ). Suggestions made by our PPI panel on how best to support carers in this situation include formulating information packs specifically for the carer, when a patient is diagnosed. This was seen to be beneficial as often when the patient is diagnosed it can be difficult to remember all the details of the conversations with doctors and to subsequently reiterate it to others. Suggestions for inclusion in the pack included some basic exercises in breathing, meditation, mindfulness that a carer could use, and information on available support groups, websites and cancer support centres.
      The findings suggest that psychosocial vulnerability in this population is a consequence of significant change in carers' lives due to the nature of a diagnosis of a CHM. The constant reminder of the incurable nature of the disease led to worry, fear, isolation and loneliness. The COVID 19 pandemic also greatly affected carers’ behaviour and attitudes. In order to sustain the continuous level of caring required for people living with a CHM, it is vital that carers are recognised as essential participants of the care team. In addition, it is vital that carers experiencing psychosocial vulnerability are identified and appropriate supports offered. A blood cancer diagnosis comes with indefinite uncertainty with regards to mortality, treatment options and information. Enhanced psychological, logistical and support resources are crucial to assist carers (
      • Kastrinos A.L.
      • Fisher C.L.
      • Mullis M.D.
      • Wollney E.
      • Sae-Hau M.
      • Weiss E.S.
      • Bylund C.L.
      A lifespan approach to understanding family caregiver experiences of a blood cancer diagnosis.
      ).

      5. Conclusion

      Carers of patients with a CHM undergo a significant life change which is often invisible to others. Patients are living longer with CHMs and receiving multiple lines of treatment which increases caregivers’ burden over time. Identification of the carer who is at risk of psychosocial vulnerability and recognition of the caregiver as a member of the care team are significant steps towards addressing the support needs of this population.

      6. Limitations

      Our study is limited by a small sample, despite recruitment strategies in place for four months. We also experienced difficulty with accessing lymphoma carers which may have had an impact on our findings. While the sample is diverse in terms of age, only one male participant was interviewed and no carers from a minority ethnic background were included. In addition, our study participants were a self-selected sample following recruiting via gatekeepers and charity and advocacy groups. Those who felt unsupported or did not access these groups for a variety of reasons have not contributed towards our findings.

      CRediT authorship contribution statement

      Orlaith Cormican: Conceptualization, Methodology, Validation, Formal analysis, Investigation, Resources, Writing – original draft, Project administration. Maura Dowling: Formal analysis, Writing – review & editing, Supervision.

      Declaration of competing interest

      No conflict of interest has been declared by the authors.

      Acknowledgements

      We would like to thank CLL Ireland, Multiple Myeloma Ireland, MDS UK, The Lymphoma and Leukemia Northern Ireland and the Irish Cancer Society for sharing details of our study. We would especially like to acknowledge the nursing gatekeepers involved in recruitment to this study as well as our PPI panel.

      Appendix A. Supplementary data

      The following is the Supplementary data to this article:

      References

        • Applebaum A.J.
        • Kent E.E.
        • Lichtenthal W.G.
        Documentation of caregivers as a standard of care.
        J. Clin. Oncol. 2021; 39: 1955-1958https://doi.org/10.1200/JCO.21.00402
        • Barlund A.S.
        • André B.
        • Sand K.
        • Brenne A.-T.
        A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer.
        BMC Palliat. Care. 2021; 20: 7https://doi.org/10.1186/s12904-020-00705-y
        • Butow P.
        • Havard P.E.
        • Butt Z.
        • Juraskova
        • Sharpe L.
        • Dhillon H.
        • Beatty L.
        • Beale P.
        • Cigolini M.
        • Kelly B.
        • Chan R.J.
        • Kirsten L.
        • Best M.
        • Shaw J.
        The impact of COVID-19 on cancer patients, their carers and oncology health professionals: a qualitative study.
        Patient Educ. Counsel. 2022; 105: 2397-2403https://doi.org/10.1016/j.pec.2022.01.020
        • Caldwell E.
        Experiences of living with incurable haematological malignancy: a research portfolio [University of Edinburgh].
        • Capodanno I.
        • Rocchi M.
        • Prandi R.
        • Pedroni C.
        • Tamagnini E.
        • Alfieri P.
        • Merli F.
        • Ghirotto L.
        Caregivers of patients with hematological malignancies within home care: a phenomenological study.
        Int. J. Environ. Res. Publ. Health. 2020; 17https://doi.org/10.3390/ijerph17114036
        • Cormican O.
        • Dowling M.
        Providing care to people living with a chronic hematological malignancy: a qualitative evidence synthesis of informal carers' experiences.
        Semin. Oncol. Nurs. 2022; 151338https://doi.org/10.1016/j.soncn.2022.151338
        • Cormican O.
        • Meskell P.
        • Dowling M.
        Psychosocial vulnerability among carers of persons living with a chronic illness: a scoping review.
        Int. J. Nurs. Pract. 2021; (n/a(n/a))e13024https://doi.org/10.1111/ijn.13024
        • Finlay L.
        • Gough B.
        Reflexivity: A Practical Guide for Researchers in Health and Social Sciences.
        Blackwell Science, 2003
        • Fisher C.L.
        • Mullis M.D.
        • Kastrinos A.
        • Wollney E.
        • Weiss E.S.
        • Sae-Hau M.
        • Bylund C.L.
        “Home wasn't really home anymore”: understanding caregivers' perspectives of the impact of blood cancer caregiving on the family system.
        Support. Care Cancer. 2021; 29: 3069-3076https://doi.org/10.1007/s00520-020-05811-4
        • Gansler T.
        • Kepner J.
        • Willacy E.
        • Soloe C.
        • Rupert D.
        • Jarblum M.
        • Driscoll D.
        • Orr A.
        • Fitzgerald T.
        • Esparza A.
        Evolving information priorities of hematologic cancer survivors, caregivers, and other relatives.
        J. Cancer Educ. 2010; 25: 302-311https://doi.org/10.1007/s13187-009-0034-9
        • George E.S.
        • Kecmanovic M.
        • Meade T.
        • Kolt G.S.
        Psychological distress among carers and the moderating effects of social support.
        BMC Psychiatr. 2020; 20: 154https://doi.org/10.1186/s12888-020-02571-7
        • Gray T.F.
        • Azizoddin D.R.
        • Nersesian P.V.
        Loneliness among cancer caregivers: a narrative review.
        Palliat. Support Care. 2020; 18: 359-367https://doi.org/10.1017/S1478951519000804
        • Greenberger L.M.
        • Saltzman L.A.
        • Senefeld J.W.
        • Johnson P.W.
        • DeGennaro L.J.
        • Nichols G.L.
        Antibody response to SARS-CoV-2 vaccines in patients with hematologic malignancies.
        Cancer Cell. 2021; 39: 1031-1033https://doi.org/10.1016/j.ccell.2021.07.012
        • Howell D.A.
        • McCaughan D.
        • Smith A.G.
        • Patmore R.
        • Roman E.
        Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—a qualitative study from the UK's Haematological Malignancy Research Network.
        PLoS One. 2022; 17e0263672https://doi.org/10.1371/journal.pone.0263672
        • Jim H.S.L.
        • Quinn G.P.
        • Barata A.
        • Cases M.
        • Cessna J.
        • Gonzalez B.
        • Gonzalez L.
        • Koskan A.
        • Montiel-Ishino F.
        • Pidala J.
        Caregivers' quality of life after blood and marrow transplantation: a qualitative study.
        Bone Marrow Transplant. 2014; 49: 1234-1236https://doi.org/10.1038/bmt.2014.118
        • Junkins C.C.
        • Kent E.
        • Litzelman K.
        • Bevans M.
        • Cannady R.S.
        • Rosenberg A.R.
        Cancer across the ages: a narrative review of caregiver burden for patients of all ages.
        J. Psychosoc. Oncol. 2020; 38: 782-798https://doi.org/10.1080/07347332.2020.1796887
        • Kastrinos A.L.
        • Fisher C.L.
        • Mullis M.D.
        • Wollney E.
        • Sae-Hau M.
        • Weiss E.S.
        • Bylund C.L.
        A lifespan approach to understanding family caregiver experiences of a blood cancer diagnosis.
        Palliat. Support Care. 2022; 20: 22-29https://doi.org/10.1017/S1478951521000389
        • Kim Y.
        • Carver C.S.
        Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship.
        J. Cancer Survivorship : Res. Pract. 2019; 13: 749-758https://doi.org/10.1007/s11764-019-00794-6
        • McCaughan D.
        • Roman E.
        • Smith A.
        • Patmore R.
        • Howell D.
        Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers.
        BMJ Open. 2022; 12e050816https://doi.org/10.1136/bmjopen-2021-050816
        • Payne J.B.
        • Dance K.V.
        • Farone M.
        • Phan A.
        • Ho C.D.
        • Gutierrez M.
        • Chen L.
        • Flowers C.R.
        Patient and caregiver perceptions of lymphoma care and research opportunities: a qualitative study.
        Cancer. 2019; 125: 4096-4104https://doi.org/10.1002/cncr.32401
        • Rood J.A.J.
        • Nauta I.H.
        • Witte B.I.
        • Stam F.
        • van Zuuren F.J.
        • Manenschijn A.
        • Huijgens P.C.
        • Verdonck-de Leeuw I.M.
        • Zweegman S.
        Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: not “one-size-fits-all”.
        Psycho Oncol. 2017; 26: 2040-2047https://doi.org/10.1002/pon.4414
        • Rossau H.K.
        • Kjerholt M.
        • Brochmann N.
        • Tang L.H.
        • Dieperink K.B.
        Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): a qualitative study.
        J. Clin. Nurs. 2022; 31: 909-921https://doi.org/10.1111/jocn.15944
        • Soothill K.
        • Morris S.M.
        • Harman J.C.
        • Francis B.
        • Thomas C.
        • McIllmurray M.B.
        Informal carers of cancer patients: what are their unmet psychosocial needs?.
        Health Soc. Care Community. 2001; 9: 464-475https://doi.org/10.1046/j.0966-0410.2001.00326.x
        • Tong A.
        • Sainsbury P.
        • Craig J.
        Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.
        Int. J. Qual. Health Care. 2007; 19https://doi.org/10.1093/intqhc/mzm042
        • Wang T.
        • Molassiotis A.
        • Chung B.P.M.
        • Tan J.-Y.
        Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review.
        BMC Palliat. Care. 2018; 17: 96https://doi.org/10.1186/s12904-018-0346-9