The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review

Gillespie, Jacqueline; Przybylak-Brouillard, Antoine; Watt, Christine L.

doi:10.1016/j.jpainsymman.2021.03.008

Cited by 13 publications

(27 citation statements)

References 53 publications

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“…In the literature, the need for information and the need for support are expressed as the most prominent needs by ICGs (Wang et al, 2018). Studies have reported that ICGs wished to be informed about various topics ranging from knowing about the CR's health condition to information concerning service availability (Docherty et al, 2008;Washington et al, 2011;Gillespie et al, 2021). They also expressed a need for support from family members, friends, and health care workers (Mollica et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

Exploring the Needs of Spousal, Adult Child, and Adult Sibling Informal Caregivers: A Mixed-Method Systematic Review

et al. 2022

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Informal caregivers (ICGs) provide care to their family or friends in case of an illness, disability, or frailty. The caregiving situation of informal caregivers may vary based on the relationship they have with the care recipient (CR), e.g., being a spouse or being an adult child. It might be that these different ICGs also have different needs. This study aims to explore and compare the needs of different groups of ICGs based on the relationship they have with their CR. We conducted a systematic review, performing a search in the databases PubMed, CINAHL, and PsycINFO. We included studies with qualitative, quantitative, or mixed-method study designs. We analyzed the data using the thematic analysis method. We included 22 articles (18 qualitative; 4 quantitative). The included articles reported the needs of ICGs taking care of a spouse (spousal ICGs), parent (adult child ICG), or sibling aged 18 years or above (adult sibling ICGs). We did not include other relationships due to the limited number of articles on these relationships. The most prominent needs reported by the spousal, adult child, and adult sibling ICGs were the need for information and need for support. The three groups differed in their needs as well. Adult child and adult sibling ICGs indicated a need to be acknowledged by the people around them for their role of carer, while they also needed to be seen as an individual having their own personal needs. Moreover, spousal ICGs indicated a unique need of redefining their role and relationship with their CR. Overall, the findings indicate that along with experiencing common needs, the investigated groups have unique needs as well. Knowing the needs of different groups of ICGs can help develop tailored solutions to improve the quality of life of the ICGs and their CR.Systematic Review Registration: [www.crd.york.ac.uk/prospero/], identifier [CRD42020188560].

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Section: Introductionmentioning

confidence: 99%

Exploring the Needs of Spousal, Adult Child, and Adult Sibling Informal Caregivers: A Mixed-Method Systematic Review

et al. 2022

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“…Embracing these communication skills would facilitate a patient- and carer-led consultation. Checking patient and carer/family information preferences and understanding (point 2) reflects recommendations in MND research [ 6 ] and may establish emotional readiness to receive information [ 7 , 8 ].…”

Section: Discussionmentioning

confidence: 99%

“…The clinical management of MND involves information provision, intervention recommendations, symptom management, and advance care planning. Information provision needs to be person-specific since the information preferences of persons living with MND and carers can vary in timing, depth, and topics [ 6 ]. Understanding patient and carer preferences for information and healthcare engagement may reduce the emotional cost of receiving information about disease course, prognosis, and early or unexpected interventions [ 7 , 8 ].…”

Section: Introductionmentioning

confidence: 99%

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Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

et al. 2022

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The growing body of information-seeking and decision-making literature in motor neurone disease (MND) has not yet explored the impact of health literacy. Health literacy relates to the skills people have to access, understand, and use health information and is influenced by motivation to engage with healthcare. We aimed to better understand how people affected by MND engage in healthcare by examining longitudinal interview data using the construct of health literacy. Semi-structured interviews were conducted with 19 persons living with MND and 15 carers recruited from a specialist MND clinic using maximum variation sampling. Transcripts were deductively coded using a framework of health literacy behaviours. The analysis used a matrix-based approach for thematic analysis of longitudinal data. People living with MND and carers sought nuanced information dependent on their priorities and attitudes. Information uptake was influenced by perceived relevancy and changed over time. Time allowed opportunity to reflect on and understand the significance of information provided. The findings indicate that persons living with MND and carers benefit when information and consultations are adapted to meet their communication needs. The results highlight the potential benefits of gaining an early understanding of and accommodating the communication needs, personal preferences, and emotional readiness for information for persons living with MND and their carers.

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“…Published reviews focusing on quality of care and quality of life ( 40 ), end-of-life management ( 41 ), and palliative care information needs of ALS patients ( 42 ) have also drawn attention to the importance of communication about end of life for people living with ALS. However, there is need for a structured, systematic, and evidence-informed approach to this communication ( 43 ).…”

Section: Introductionmentioning

confidence: 99%

Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence

et al. 2021

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Background: Communication about end of life, including advance care planning, life-sustaining therapies, palliative care, and end-of-life options, is critical for the clinical management of amyotrophic lateral sclerosis patients. The empirical evidence base for this communication has not been systematically examined.Objective: To support evidence-based communication guidance by (1) analyzing the scope and nature of research on health communication about end of life for amyotrophic lateral sclerosis; and (2) summarizing resultant recommendations.Methods: A scoping review of empirical literature was conducted following recommended practices. Fifteen health-related and three legal databases were searched; 296 articles were screened for inclusion/exclusion criteria; and quantitative data extraction and analysis was conducted on 211 articles with qualitative analysis on a subset of 110 articles that focused primarily on health communication. Analyses summarized article characteristics, themes, and recommendations.Results: Analysis indicated a multidisciplinary but limited evidence base. Most reviewed articles addressed end-of-life communication as a peripheral focus of investigation. Generic communication skills are important; however, substantive and sufficient disease-related information, including symptom management and assistive devices, is critical to discussions about end of life. Few articles discussed communication about specific end-of-life options. Communication recommendations in analyzed articles draw attention to communication processes, style and content but lack the systematized guidance needed for clinical practice.Conclusions: This review of primary research articles highlights the limited evidence-base and consequent need for systematic, empirical investigation to inform effective communication about end of life for those with amyotrophic lateral sclerosis. This will provide a foundation for actionable, evidence-based communication guidelines about end of life. Implications for research, policy, and practice are discussed.

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The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review

Cited by 13 publications

References 53 publications

Exploring the Needs of Spousal, Adult Child, and Adult Sibling Informal Caregivers: A Mixed-Method Systematic Review

Exploring the Needs of Spousal, Adult Child, and Adult Sibling Informal Caregivers: A Mixed-Method Systematic Review

Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence

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