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Abstract
Objectives Carers of patients with high-grade primary malignant glioma (PMG) are known to face extraordinary challenges, as they care for patients with multiple profound and often devastating physical, cognitive and behavioural changes. This study aimed to understand the supportive and palliative care needs in this setting, with a particular focus upon care at the end-of-life, which has hitherto been neglected.
Methods This prospective qualitative study undertook in-depth interviews with 23 current and bereaved carers of adults with PMG. Carers were recruited from outpatient and inpatient services of two Australian metropolitan hospitals, including neurosurgery, oncology and palliative care. Thematic analysis was conducted by three independent researchers, using methods informed by grounded theory.
Results Carers described significant needs in relation to three distinct domains: the challenge of caring; the lack of support available to carers and the suffering of caring. The need for care coordination was highlighted as it may enable a series of recommendations for improved care, including: navigation between health providers, individualised, staged information; routine, proactive telephone needs-assessment and emotional support; and early routine integration of palliative care services.
Conclusions The results of this study shed new light on providing timely information and palliative care to support carers. We call for health services to reconsider the current medical model for this patient group, where patients are the centre of care, information and support, towards a more collaborative model which places carers and patients into a partnership.
- End of life care
- Supportive care
- Service evaluation
- Malignant glioma
- Carers
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People with high-grade primary malignant glioma (PMG) face a terminal prognosis and must negotiate profound and often devastating physical, cognitive and behavioural changes from an early stage of their illness.1 ,2 Clinically, they appear to have an illness course that is characterised by sudden acute deteriorations followed by periods when their condition plateaus, albeit at a lower level.3 Prognostication is not always straightforward, and some patients may live many months in a state of full dependency.
Patients with PMG are primarily managed through neurosurgery and oncology outpatient units in the specialised tertiary hospital setting.4 Referral to palliative care currently occurs sporadically and is routinely accessed late,3 ,5 despite patient's terminal prognosis and early high attendant care needs. Family members are frequently recruited to become informal carers at home, and are reported to experience significant burden and distress.1 ,6–8 Supportive and palliative care services therefore have an important role in supporting the needs of these carers.
Several recent reviews highlight the need for high-quality studies examining the supportive and palliative care needs of this patient cohort and their carers.9–12 Little attention has been given to carers’ needs during the palliative and bereavement phases.12 Thus, our understanding of the care needs across the whole illness trajectory and of the services needed to support patients and their carers remains limited..1 ,2 ,4 ,13
We hypothesised that carers of adults with PMG will have needs that are unaddressed by current models of care. This was explored, with specific aims to: (1) provide an in-depth exploration of the needs and concerns of people caring for patients with PMG, (2) develop greater understanding of these care needs during the patient's palliative illness phase and (3) obtain insight into bereaved family members’ experiences of caring for someone with PMG.
Methods
Context
This study was part of a larger project to develop a model of supportive and palliative care for this population, which also included an epidemiological retrospective cohort study, and qualitative data from patients and treating health professionals. An expert advisory group consisting of representation from all relevant medical stakeholder groups, including a consumer (past carer), provided oversight. The study was approved by relevant institutional human research and ethics committees.
Participants
Participants were current and bereaved carers of patients with PMG, defined as unpaid persons nominated by the patient as providing care. Carers were recruited from 1 September 2010 to 30 December 2011 from neurosurgery, oncology and palliative care services of two Australian metropolitan hospitals.
Current carers were approached to participate via the patients. Patient eligibility was sought from medical records of patients in attendance at outpatient clinics or inpatient units and confirmed with treating clinician. Consecutive eligible patients (PMG grades III–IV; conversant in English; able to provide informed consent) were approached in person by the researcher (AC, GM) to invite participation of their carer.
Bereaved carers of patients with PMG previously admitted to palliative care and oncology inpatient units from 1 July 2009 to 30 July 2010 were identified from the patient registry. Carer eligibility (6 months–3 years bereaved) was sought from review of patient databases and confirmed with the primary doctor previously responsible for care. Carers were then invited by letter to participate and those who expressed interest were contacted by phone.
Consecutively recruited current and bereaved carers were supplemented by purposive sampling to ensure representation across a series of variables including time caring, stage of treatment, distance from hospital and type of care provision. Written consent for carers was obtained at the time of interview.
Data collection
In-depth interviews were conducted by one investigator (AC) in the carer's preferred location (home, n=7; hospital, n=9; hospice, n=4; phone, n=3), until data saturation was reached. When possible, carers were interviewed alone, but for three interviews, the carer preferred the patient to be present. In these interviews, analysis was based only on carer reflections.
The interviews were semistructured around carers’ supportive and palliative care needs, beginning with a narrative account of their experiences since the patient's diagnosis. Initial interviews then followed a predefined guide to explore particular areas of interest not previously covered. This guide was piloted with the consumer on the study advisory to confirm the suitability of questions and interviewer style. The questions included in later interviews evolved according to the themes that were emerging in the analysis.
Theoretical framework and data analysis
Thematic analysis was based on an inductive process that allowed for themes to emerge ‘from the ground up’.14 The interviews were audio-recorded, transcribed verbatim, cross-checked for authenticity, and then thematically analysed by three investigators (JP, GM, AC) using a constant comparative approach.14 Transcripts were individually read, ‘open’ coded,15 and then emergent thematic features were collectively discussed, and refined, until agreement was reached.
Analysis was conducted simultaneously with data collection and emerging themes were explored in the interview process. Cross-case analysis16 enabled a thorough understanding of needs across different points of the illness (eg, diagnosis/end-of-life), sociodemographic features (rural/metropolitan) and differences by group (current/bereaved carers). When no new themes were found, saturation was considered to be achieved. Final themes were then developed and reviewed by investigators with feedback subsequently sought from the advisory group.
Results
Twenty-three carers (15 current and 8 bereaved) were interviewed (table 1), who were mostly spouses of patients with varying levels of disability (figure 1). They ranged in age from 27 years to 77 years (median 54 years). At the time of interview, patients being cared for by this cohort had survived between 1 month and 14 years (median 14 months). Fifteen carers had experienced some involvement with palliative care, and six were from regional/rural areas.
Characteristics of carers
Recruitment flow chart.
Carers described a situation whereby they felt they were required to care for a person with very specific needs and little support, information or preparation. They described great suffering through experiences of exhaustion, grief and isolation. Participants’ comments related to three distinct domains, forming a three-dimensional model of caring for someone with PMG (figure 2).
Model of primary malignant glioma (PMG) carers’ lived experience.
The challenge of caring
The enormity of the caring role
Carers described the physical and emotional enormity of providing care, which differed according to the patient's level of disability, but overall involved doing ‘everything’ (box 1). Constant availability to tend to patient needs was required: practical help with toileting, feeding, bathing and dressing; driving patients to required appointments; advocating for the patient; navigating the health system; making treatment decisions; managing medication schedules, and for some, tumour-related sequelae such as seizures. This was all undertaken while accepting new responsibilities previously shared with their partner; bearing financial strain as a single-income provider; and managing the reactions and emotions of concerned family and friends.
The challenge of caring
Theme 1: The challenge of caring in the context of PMG and the unique difficulties that this illness brings: constant caring tasks, behavioural and cognitive changes, unique illness trajectory and an uncertain yet poor prognosis.
The enormity of caring role
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“For me it was a massive upheaval… my life did a complete turnaround.” (C14)
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“It's all changed. Everything's changed.” (C2)
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“From that moment [of diagnosis], everything was different… As the seizures progressed, she started losing more of her abilities – she lost the ability to eat, to drink, to stand, to walk. Her sanitary needs were done by me, everything was done by me.” (C3)
The challenges brought about by the particularities of PMG – neuro-cognitive changes and the unique illness trajectory
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“We have lots of fights continually, because she thinks she's right. ‘No, you can't put your hand in the flame,’ ‘Yes I can.’ Stuff like that. There's no rationalisation behind it; two and two do not make four. That's the most frustrating thing about it.” (C3)
The complexity of living with the unspoken future
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“We're realistic enough, we know one day this thing will creep up on us and that's it – but you don't want to hear that, you want to keep going and tracking on until such time as well, it goes wrong I suppose.” (C6)
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“I would have liked it if [the oncologist] had said to [the patient], “This is what you need now and I want you to get into the program… Just to be in the system much earlier than when you land in the system…” (BC6)
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“I think to be in contact with palliative care at the early stages would be something positive for everybody… Because then when you want something you've got a specialist person that's got the knowledge to be able to talk to the family about what's happening.” (C12)
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“I think a lot of people have no idea what they're up against… I know that sometimes it's cruel for medical staff to have to tell you how it is but I think you just can't hide that stuff from people.” (C13)
The challenges brought about by the particularities of PMG—neurocognitive changes and the unique illness trajectory
Neurocognitive problems were reported to be a significant cause of concern for carers who described difficulty and frustration in managing personality changes; diminished insight and inhibitions; and impulsive, erratic, inappropriate or aggressive behaviour changes.
Such changes and the additional particularities of the PMG illness trajectory were recognised to cause carers significant burden. The rapidity of change from ‘normal’ state to crisis following the cancer diagnosis and each period of recurrence was always unexpected. Despite being told of the patients’ poor prognosis, the uncertainty and unpredictable deteriorations often meant carers felt unprepared for their role.
The complexity of living with the unspoken future
Trying to negotiate hope in the face of increasing deterioration caused an emotional burden for carers who were committed to caring, without any indication of how long it must be sustained. The complexity of this was reflected in the discrepancy of views between carer groups regarding the need for early referral to palliative care. Bereaved carers almost universally reported the benefits of referral to palliative care, and felt that information about these services should be introduced early in the patient's illness.
Conversely, current carers who had not yet had contact with palliative care often reported they didn't think they needed help, and didn't want to think about it until it was necessary. They instead, emphasised the importance of always maintaining hope. Current carers who were interviewed while the patient was in a palliative care unit however, reported relief that the patient was being cared for and wondered why ‘no-one had told them’ about palliative care. Thus it was apparent carers ‘don't know what they need to know’, but with hindsight, felt it would have been better to have been prepared and supported ahead of time.
The lack of support available to carers
Lack of care coordination and continuity
Carers described the absence of a central, clearly identified contact person who was responsive, reliable and available (box 2). Necessary coordination tasks identified by carers that were unfulfilled included: providing a point of contact within the treating hospital; assisting in navigation through community and hospital settings; providing information; and being a familiar presence who was aware of the whole person when there was frequently little continuity of medical care. Many bereaved carers noted community palliative care provided these tasks later in the illness.
The lack of support available to carers
Theme 2: Lack of emotional support, coordination, information, preparation and routine services provided to manage the challenges of caring in the context of PMG.
Lack of care coordination & continuity
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I had nobody to talk to, no contact, I didn't know what to do.”(C14)
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“We were just being handballed around. No one was going to take responsibility and tell us what we had to do.”(BC8)
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“There's no continuity, there's no one doctor. She spent a month remembering the doctor's name from last visit. And then when we get there and it's not him.” (C12)
Lack of individualised information
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“I wish somebody had have sat down and said to me, ‘Do you want to know why your husband's acting like that, or why he doesn't want to have a wash?’ And I would have said, ‘Yes, I do want to know.’ But you have to get a bit of a shove.” (BC2)
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“You actually need an interpreter to be with you, you kind of need that middle person… That go to person like a librarian, who can say, ‘This is the information you need.’ You'd hit the next bump in the road and every time was different and every time I hit that bump I just didn't have that ‘go to’ person to ask.” (BC6)
Lack of preparation
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“I certainly needed help with the physical management, like even finding out that you could put a tap at the end of the urinary bottle so it wouldn't spill everywhere… Things like that I think ‘The things you learn!’ It sounds so obvious, but if you don't need to know, how would you ever know?” (BC5)
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We weren't informed about having seizures… The doctors had said if you fall unconscious then someone should call an ambulance…. No mention about length of time of seizures, you know, at what point is too long?” (BC8)
Lack of emotional support
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“You need someone who is consistent and persistent in contacting you as the carer, and for want of a better word, the victim, of what's going on –because you not only live through it, but you have to tolerate it, and keep going with a smile on your face” (BC6)
Inconsistency of service provision
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‘When we got into the public that's when everything became so much more manageable – we were getting a lot more services and, we just felt it was better managed- a lot more cohesive – ‘we were much better informed.’ (C10)
Lack of individualised information
Carers emphasised the inadequacy of resources provided to support them in their caring role. Written information was scarcely given, and never individualised. Consistently identified gaps included: what to expect over the patient's illness; how specific tumour-related sequelae manifest; where to seek additional help if required; specific seizure information; practical tips for caring and strategies for managing behavioural and personality changes. Carers stressed the importance of understanding the relationship between patient's behavioural changes with the site of their tumour. Overall carers noted that often their needs for information differed with those of the patient and changed over the patient's illness.
Lack of preparation
The limited preparation by the health system to assist carers to effectively undertake their role was emphasised. They felt unsure of how to enlist support after-hours, often defaulting to emergency departments for simple advice. Carers were particularly dissatisfied with the lack of preparation at key transitionary points such as at diagnosis, at discharge following surgery, or following tumour progression. At such times, although recognising the constraints of busy clinics, carers felt they required better preparation to appropriately care for the patient.
Lack of emotional support
There was typically no routine emotional support provided to carers (or patients), and if it was offered, the demands of the caring role made access difficult. Carers reported support was needed to: validate experiences and legitimise concerns; assist with everyday caring and decision-making; provide strategies; and have their grief heard. Carers suggested an ‘online buddy system’ or a telephone ‘lifeline’ might be an accessible format to fill the void of face-to-face support. This was particularly important during bereavement, when carers report immense loneliness in their grief.
Inconsistencies of service provision
Carers reported inequity in service provision, where some had access to the full range of supports available, and others, very little. Those who lived in regional or remote areas emphasised the lack of services available to support them and some relocated to the city for significant periods to receive treatment or required services. Inadequate communication with local medical teams about the patient's treatment plan was also recognised by rural carers.
Bereaved carers in particular, advocated the need for more timely access to community support services, often referring to long waiting times for respite, which exceeded the patient's prognosis. Access to inpatient palliative care was reported by some carers to be restricted, due to the uncertainty of a glioma prognosis with few hospices that could offer extended care. They felt that nursing or aged care homes were inappropriate places of care for patients with glioma and were deeply distressed if patients were required to move from an inpatient palliative care environment to a nursing home.
The suffering of caring
Relentlessness of caring
Carers described the impact of undertaking their role and responding to the difficulties as ‘relentless’, but did so with a continued sense of loyalty (box 3). The lack of choice in accepting the role, the inability to share the caring load, and the limited time for themselves was a continual struggle as carers persisted in prioritising the patient's needs above their own. Carers with young families spoke of the ‘massive upheaval’ to their family, as children were often left to ‘fend for themselves’.
The suffering of caring
Theme 3: Exhaustion, grief, bewilderment, guilt, sadness and loneliness that results from caring in the context of PMG, exacerbated by the unique challenges that this illness brings and the lack of support provided.
Relentlessness of caring
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“Occasionally it overcomes you… It's relentless, it's nothing but relentless.” (C3)
Loneliness of caring
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“You get glimpses of the old Jack, but he feels different to me…I feel like I've already lost him.” (C2)
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“Of course I couldn't talk to her about it [dying], because she didn't have the words to deal with the impact of what I'd be telling her. She couldn't express her rage, grief, her desperation. So I wasn't sure whether she did know [she was dying], or she didn't.” (BC4)
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“Death is like divorce in a sense; you had a huge network of friends and all of a sudden you've lost your left arm and you've lost everybody that goes with that left arm and it's horrid.” (BC6)
The ongoing suffering for bereaved carers
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“I apologised and said, ‘You have to go [to hospital], I can't do this anymore.’ And then he wouldn't talk to me, and it was really hard…The promise was he'd stay at home for as long as possible, and I just couldn't go another minute.” (BC6)
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“It's funny but the more time passes, the more I need support… I'm floundering still… but I don't have anyone who wants to listen.” (BC2)
The suffering of caring
While current carers reported feeling helpless, they frequently downplayed their distress. Bereaved carers however, were able to openly verbalise their own depression, their feelings of inadequacy in caring, and the toll it exacted upon their physical health.
Loneliness of caring
Carers frequently reported they had lost their support network, who had ‘dropped off’ while they were consumed by the daily tasks of caring. The sense of isolation was made worse by the subtle cognitive changes which often occurred, yet were unnoticed by others. Such changes meant the nature of their loving relationship was different, and carers were now facing a new phase of life effectively alone. The nature of such changes often meant patients would refuse help from people other than their carer. Likewise carers reported trying to ‘uphold face’ and protect the patient from outside judgement. Carers of those patients with such profound changes commonly reflected on their grief for the loss of the person they loved, for their former relationship and ‘pre-caring life’. The demands of caring under these circumstances were compounded by having to ‘make allowances’ for the differences.
The ongoing suffering for bereaved carers
Despite reflecting on some moments of joy and good humour in caring; overall there was much grief, and this was sustained into bereavement. Bereaved carers spoke of the long ‘catch-up’ period after the patient died, in which they finally had time and space to process the immense losses. They spoke of their sadness at missed opportunities for sharing meaningful goodbyes, which they had expected at their partner's impending death, but were not possible in the setting of cognitive failure. They ruminated over regrets about care, particularly when the patient who expressed a wish to remain at home, had died in hospital. Some carers still felt distressed by ‘unanswered questions’ about the patient's illness, attributing behavioural changes to the person being different, rather than recognising such changes as tumour-related sequelae.
Discussion
This study is among the first to investigate the needs of carers in the setting of PMG across all phases of the illness trajectory including after the death of their loved one. These end-of-life needs have not previously been fully delineated, and the current study sheds new light on providing timely information and palliative care to support carers. Building on previous research which has primarily focused on information and support needs,17–20 carers’ suggestions for current service provision were sought to inform the development of a future model of supportive and palliative care.
The challenge and opportunity of current carer distress
The lived experience described by the carers highlights that the way services are provided and the limited focus on carers’ needs may exacerbate the level of distress and burden felt. Figure 2 illustrates the carer experience, which is influenced by the specific challenges of PMG and the lack of support and preparation to undertake this role. The possibilities suggested by this finding are that improvements to service delivery are likely to improve the well-being of carers, and in turn, the quality of life of patients who are often dependent on their families when faced with this challenging disease.
The carers’ experience in this study supports Cassell's argument that suffering can indeed sometimes be made worse by medicine,21 and the goal of medicine in the context of high-morbidity disease may need to be less disease driven, instead more focused on alleviating suffering.22 Improvements to service delivery therefore need to place greater emphasis on responding to the behavioural aspects of the disease and the particularities of the PMG illness course, which exacerbated the carers’ suffering and created a particular set of needs not shared by all cancer carers.
These particularities described by the carers, stem largely from the sudden unanticipated deteriorations and early changes in cognition and personality, profoundly altering the very essence of the patient as individual. This finding supports previous research which highlights the challenges carers experience when patients undergo neurocognitive and functional changes.23–26 Indeed some of these needs may be more closely aligned with those caring in the setting of neurodegenerative disease.27 ,28 Moreover, as cognitive changes, functional deficits and social issues are reported to contribute to high service utilisation in PMG,13 carers’ needs for assistance in these areas require attention if patients are to remain at home for prolonged periods of the illness course.
Despite the variety of carers representing many different stages along the patient's illness trajectory, there was much commonality to the needs expressed. The exception to this was around the timing of information and referral to palliative care, an issue previously recognised to need resolution.5 Bereaved carers recognised, with hindsight, the need for proactive information and early integration of palliative care before crises occurred, whereas current carers did not know what to expect so just reacted by requesting services as crises arose. These current carers were committed to maintaining hope with the possible poor future outcomes not considered until no longer able to be ignored.
This quandary for current carers of wanting to be prepared, yet not wanting to think about palliative care before they ‘need it’ highlights the complexity of negotiating negative information26 and reconciling “hope and pain”29 when faced with terminal illness. The need for hope in this setting has indeed been recognised.20 ,30–32 The implications for carers of simply maintaining hope, namely precluding access to palliative care and associated supports, has not been previously raised. Negotiation with hope through provision of information and support is clearly an important task. Developing a routine and consistent therapeutic relationship with the carer is paramount, allowing discussions to occur in a way that is paced and individual to each carer's needs, enabling anticipation and planning for likely events, and thereby pre-empting crises before they arise.8 ,23 ,31
Recommendations for opportunities to intervene
The current findings point to care coordination associated with increased carer support, as a key opportunity for intervention and alleviation of the suffering of PMG carers. While care coordination itself does not stand alone in improving the lived experience for carers, other opportunities to intervene could be facilitated through the ongoing supportive relationship between a care coordinator and the patient and their carer. Care coordination can enable key tasks such as the provision and communication of staged, individualised information; a routine, proactive telephone needs-assessment for carers in the community including those in rural areas; a greater acknowledgement and support of the carer role from the health system; improved opportunities for accessing emotional support; and an earlier streamlined integration with palliative care to facilitate proactive support for carers.
Some of these recommendations have indeed been recognised internationally as priority areas in government policy detailing support for informal carers.33–36 The Australian National Carer Strategy34 endorses the importance of involving carers in health service models and improving their access to respite, information and support. This study provides robust evidence for how these priorities should be enacted in the setting of PMG and points to the necessity of greater resource allocation to support the particular needs highlighted. Recommendations from this study should be brought together with the views of patients and their healthcare professionals to fully delineate a service model, and examine its efficacy in a future investigation.
Limitations
A third of those approached for study inclusion in both carer groups declined to participate or never responded, which may introduce some bias. However, the reasons for refusal were noted, and these did not suggest a common concern, in particular it did not appear that fear of being distressed was a frequent reason for refusal. The interview population was also restricted to those speaking English for pragmatic reasons such as required resources involved in translation. This limits the generalisability of findings to broader cultural groups.
Conclusion
This study reveals that carers of people with PMG have distinct supportive and palliative care needs which differ from those of other cancer trajectories, and which are unsupported by current models of care. Carers are relied upon by the health system to provide the care required by patients in the community, but receive limited formal assistance to undertake the role. The results of this study call for health services to reconsider the current medical model for this patient group, where patients are the centre of care, information and support, towards a more collaborative model which places patients and carers into partnership. Care coordination is expected to play a formative role in enabling service changes to alleviate the significant suffering of carers.
References
Footnotes
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Acknowledgements We would like to acknowledge the time and expertise of the study advisory group who ensured the methodology, results and interpretation of findings were clinically grounded: Ros Aylot, Amanda Bolleter, Dr Dianne Clifton, Dr Jeremy Couper, Dr Michael Dally, Prof Mark Rosenthal, Dr Peter Sherwen and Jane Staker.
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Contributors JP developed the study concept, secured funding, and led the implementation of project and associated data analysis, interpretation of findings. JP, GM and AC undertook all the data collection and analysis. AC wrote a first draft of the manuscript, alongside JP. All authors regularly met as a steering group to contribute to all phases of the project including the interpretation of findings and writing of the current manuscript. JP is the study guarantor.
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Funding This study was supported by the Victorian Cancer Agency of the Victorian State Government Department of Health (EO109_29).
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Competing interests None.
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Ethics approval Ethical approval was provided by the Alfred Health Human Research and Ethics Committee (116_10) and governance approval was obtained from St Vincent's Hospital Research Governance Unit (100-10). Informed written consent was obtained from all participants and verbally reviewed at the beginning of each interview.
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Provenance and peer review Not commissioned; externally peer reviewed.