Patients and carers experience of living with a complex neurological and palliative diagnosis

Draper, Ana; Day, Emma; Garrood, Elizabeth; Smith, Philip E.

doi:10.1080/13576275.2013.820177

Cited by 6 publications

(5 citation statements)

References 16 publications

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“…3,[5][6][7] Carers of people living with long-term neurological conditions are likely to experience caregiving as intensive or 'relentless' and may be critical of services where they feel that the emotional implications of caring for someone who will die of their condition are not properly recognised or supported. [8][9][10] Specific challenges have been associated with end of life care for people with neurological conditions and their carers and families, including living with complex conditions and uncertain disease trajectories, the lack of a distinct dying phase for some conditions and poor access to palliative care services. 11 Given that long-term neurological conditions are characterised by change and deterioration, people living with such conditions and their families engage with multiple health and care service systems.…”

Section: Introductionmentioning

confidence: 99%

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

et al. 2020

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Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life. Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions. Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions. Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context. Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers’ roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living. Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

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Section: Introductionmentioning

confidence: 99%

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

et al. 2020

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“…Whilst this fact can be explained by the presence of communication problems and negative emotions on the side of the people with ataxia, the fact that friends and relatives do not usually suffer from speech problems could mean that additional pressures are contributing to this, such as not wanting to socialise without the person with ataxia. The validity of this assumption would have to be investigated with further qualitative research, but mirrors to some degree the "loss of freedom" theme described by Draper et al 19 , which emerged from their interviews with carers of people with fast progressing neurological disorders, such as motor neuron disease or multiple system atrophy. Our data thus suggest that, in view of the importance of social interactions for mental wellbeing, family dynamics would be important to discuss with health professionals in order to maximise quality of life for those living with people with ataxia without exacerbating their feelings of isolation further.…”

Section: Other Challengesmentioning

confidence: 99%

“…Overall, provision that was viewed as not having met people's needs included mostly generic services such a GPs, A&E or social work rather than those where professionals have a higher level of experience with ataxia and how to manage it, such as neurologist and the various AHPs. Knowledge and understanding of rare disorders in health and social care professionals (HCPs), or the lack thereof was a key theme highlighted as problematic in the study of the lived experience of patients with progressive neurological problems and their carers 19 .…”

Section: Support Providedmentioning

confidence: 99%

“…A further significant knowledge gap concerns the carers, family and friends of people with ataxia. Support provided to the family of those with progressive neurological conditions is important to provide general every day support and also to facilitate effective intervention 19 . Yet, whilst a number of studies have focused on carers of patients with slow and fast progressing neurological disorders such as Parkinson's disease, multiple sclerosis, dementia as well as motor neuron disease, Huntington's disease and multiple system atrophy [20][21][22][23] , no reports exist, to our knowledge, that investigate the challenges faced by carers, family and friends of people with ataxia and thus how to support them effectively.…”

Section: Introductionmentioning

confidence: 99%

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Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study

et al. 2021

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Background: Progressive ataxias are complex disorders that result in a wide variety of symptoms. Whilst we currently have a relatively good understanding of the symptom patterns associated with the various types of ataxia, and how these diseases progress over time, their impact on the person with ataxia is less well understood. In addition, little is known about how carers, friends and families are affected by them. This paper aims to provide preliminary information on the presence and impact of medical symptoms and day-to-day challenges on people with ataxia and their friends and relatives. Method: Data were extracted from a survey by Ataxia UK for their members. The views of 366 people with ataxia and 52 friends and relatives are reported. Data were analysed for the entire groups, as well as for the three most common ataxia types represented in the sample, Friedreich’s ataxia, inherited ataxia (excluding Friedreich’s ataxia), and cerebellar ataxia of unknown cause. Results: The survey confirmed the symptom patterns described in previous research, but further showed that the impact of these symptoms can vary across ataxia populations. Similar findings were observed for day-to-day challenges. Friends and relatives experienced similar challenges to people with ataxia, indicating that support provided has to consider those supporting people with ataxia as well as the patient. Respondents also highlighted limitations in terms of accessing support services, and not all services were able to cater fully to their specific needs. Conclusion: This study begins to provide information that can be used in further research to explore the needs of people with ataxia and their carers, friends, and relatives. Such research will support treatment trial design, ensuring patients’ needs are considered, help to tailor support services to their needs, and ensure health care professionals have the necessary skills to fully address them.

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Section: Introductionmentioning

confidence: 99%

Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study

Lowit¹,

Greenfield²,

Cutting³

et al. 2023

healthopenres

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Background: Progressive ataxias are complex disorders that result in a wide variety of symptoms. Whilst we currently have a relatively good understanding of the spectrum of symptoms associated with the various types of ataxia, and their progression over time, their impact on the person with ataxia is less well understood. In addition, little is known about how carers, friends and relatives are affected by them. This paper aims to provide information on the presence and impact of medical symptoms and day-to-day challenges on people with ataxia and their friends and relatives. Method: Data were extracted from a survey by Ataxia UK done for their members. The views of 366 people with ataxia and 52 friends and relatives are reported. Data were analysed for the entire group, as well as for the three most common ataxia types represented in the sample, Friedreich’s ataxia, inherited ataxia (excluding Friedreich’s ataxia), and cerebellar ataxia of unknown cause. Results: The survey confirmed the symptom patterns described in previous research, but further showed that the impact of these symptoms can vary across ataxia populations. Similar findings were observed for day-to-day challenges. Friends and relatives experienced similar challenges to people with ataxia, indicating that support provided has to consider those supporting people with ataxia as well as the patient. Respondents also highlighted limitations in terms of accessing support services, and not all services were able to cater fully to their specific needs. Conclusion: This study begins to provide information that can be used in further research to explore the needs of people with ataxia and their carers, friends, and relatives. Such research will support treatment trial design, ensuring patients’ needs are considered, help to tailor support services to their needs, and ensure health care professionals have the necessary skills to fully address them.

show abstract

Patients and carers experience of living with a complex neurological and palliative diagnosis

Cited by 6 publications

References 16 publications

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study

Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study

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