A qualitative meta-synthesis of evidence (meta-ethnography) exploring the personal experiences of gastrostomy tube in neurodegenerative diseases: a case of motor neurone disease

Lisiecka, Dominika; Kearns, Áine; Bourke, Fiona; Lawson, Ian T.; Muir, Cath

doi:10.1080/09638288.2021.1922518

Cited by 4 publications

(6 citation statements)

References 60 publications

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“…If a care recipient was able to eat orally it lessened the burden on FCs even if the oral diet was minimal (for example tastes only) (Green et al., 2019b; Mori et al., 2019). Receiving nutrition and hydration exclusively through enteral tube can have a negative psycho‐social impact on people with AN&H (Lisiecka et al., 2019) while continuation of oral diet may lead to a more positive experience (Lisiecka et al., 2021). Food has been recognized as having a much wider role than sustaining life, including emotional, cultural and traditional meaning (Aktas‐Polat & Polat, 2020).…”

Section: Discussionmentioning

confidence: 99%

“…Patient and public involvement (PPI) is an important element of empirical health research and considered as advantageous by the Cochrane Consumer Network for the production of relevant and accessible reviews (Park et al., 2020). Although reported as infrequent in published meta‐ethnographic studies (Park et al., 2020), the benefits of PPI have been noted in a recent meta‐ethnographic review exploring the personal experiences of gastrostomy tube in neurodegenerative diseases (Lisiecka et al., 2021). This current review also incorporated PPI to allow for multi‐perspectival interpretation of findings.…”

Section: Methodsmentioning

confidence: 99%

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A qualitative systematic review of family caregivers’ experiences of artificial nutrition and hydration at home: A meta‐ethnography

Lisiecka

Kearns

Bonass

2022

Intl J Lang & Comm Disor

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Background Artificial nutrition and hydration (AN&H) may be provided to individuals in the home environment, and family caregivers are often involved in the management of this intervention. This experience can have multiple consequences for families. Aims The aim of this meta‐ethnography is to explore and synthesize the personal experiences of family caregivers providing care to a person receiving home AN&H. Methods & Procedures A comprehensive search of the literature was conducted without any time limitations applied. Seven stages of meta‐ethnography were followed. Public and patient involvement was incorporated into the development of the line of argument synthesis in this review. This review is reported following the eMERGe guidelines and it was registered in PROSPERO. Main Contribution A total of 22 studies were included representing the experiences of 336 family caregivers. Two main themes emerged: (1) sink or swim, being thrown in at the deep end; and (2) professional support as a bedrock. The first theme represents the experiences from the very start of home AN&H when the family caregivers may be overwhelmed with the level of skills they have to acquire. With time, family caregivers perceived the benefits, but also the challenges, associated with managing home AN&H. If a person receiving home AN&H was able to continue with some oral intake, it had a positive impact on family caregivers’ experiences. The second theme represents the influence of professional support on the lived experience of family caregivers managing home AN&H. This support should be individualized, comprehensive, and co‐created with the family caregiver and the person receiving home AN&H. Conclusions & Implications This review concluded that caring for a person receiving home AN&H can be very challenging for family caregivers. Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to acquire skills, competence and confidence in this new role. Speech and language therapists are important members of this multidisciplinary team because they can facilitate a continuation of oral intake as appropriate. WHAT THIS PAPER ADDS What is already known on the subject AN&H has an impact not only on the person receiving it but also on the wider family and family caregivers. Healthcare professionals have a role in supporting people living with AN&H. What this paper adds to existing knowledge This review presents a rigorous qualitative evidence synthesis that adheres fully to the eMERGe guidance for reporting of meta‐ethnography. Within this meta‐ethnography a current caregiver was consulted during the creation of the line of argument synthesis to provide a unique perspective to the review process. This review synthesized the current body of evidence that explores the lived experience of home AN&H (any type) for family caregivers, identifies where professional support is required and highlights current gaps. What are the potential or actual clinical implications of this work? Family caregivers ...

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

A qualitative systematic review of family caregivers’ experiences of artificial nutrition and hydration at home: A meta‐ethnography

Lisiecka

Kearns

Bonass

2022

Intl J Lang & Comm Disor

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“…Though these interventions have the potential to extend survival, 10–13 they can also address the negative impact that functional losses have on pwMND quality of life 3 . In addition to the proposed benefits, the risks and burdens should also be considered during decision‐making 14,15 …”

Section: Introductionmentioning

confidence: 99%

“…3 In addition to the proposed benefits, the risks and burdens should also be considered during decision-making. 14,15 pwMND make decisions in the context of an often rapidly progressive disease with no hope of a cure. The risks and benefits associated with interventions are continually changing as the health threats presented by symptom progression escalate.…”

Section: Introductionmentioning

confidence: 99%

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Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis

White

O’Cathain

Halliday

et al. 2023

Health Expectations

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Background People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non‐invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions. Methods The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis. Findings Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision‐making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision‐making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change. Conclusion Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation. Patient or Public Contribution The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs).

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Accessing and Receiving Speech-Language Pathology Services at the Multidisciplinary Amyotrophic Lateral Sclerosis Clinic: An Exploratory Qualitative Study of Patient Experiences and Needs

Huynh,

Adams,

Barnett-Tapia

et al. 2024

J Speech Lang Hear Res

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Purpose: This study sought to explore how patients with amyotrophic lateral sclerosis (ALS) presenting with coexisting bulbar and cognitive impairments and their caregivers experienced the speech-language pathologist (SLP) services provided in multidisciplinary ALS clinics in Canada and identified their perceived needs for bulbar symptom management. Method: This qualitative study was informed by interpretive description. Seven interviews were conducted with patients with severe bulbar dysfunction or severe bulbar and cognitive dysfunction due to ALS or ALS-frontotemporal dementia, respectively, and/or their caregivers. Purposive sampling was used to recruit individuals with severe bulbar or bulbar and cognitive disease. Thematic analysis was used to analyze interview data. Results: Patients and caregivers reported difficulties with accessing and receiving SLP services at the multidisciplinary ALS clinic. These difficulties were further exacerbated in those with severe cognitive disease. Participants expressed a need for more specific (i.e., disease and service-related) information and personalized care to address their changing needs and preferences. Engaging caregivers earlier in SLP appointments was perceived as vital to support care planning and provide in-time caregiver education. Conclusions: This study highlighted the challenges experienced by patients and caregivers in accessing and receiving SLP services. There is a pressing need for a more person-centered approach to ALS care and a continuing need for education of SLPs on care provision in cases of complex multisymptom diseases within a multidisciplinary ALS clinic. Supplemental Material: https://doi.org/10.23641/asha.24069222

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A qualitative meta-synthesis of evidence (meta-ethnography) exploring the personal experiences of gastrostomy tube in neurodegenerative diseases: a case of motor neurone disease

Cited by 4 publications

References 60 publications

A qualitative systematic review of family caregivers’ experiences of artificial nutrition and hydration at home: A meta‐ethnography

A qualitative systematic review of family caregivers’ experiences of artificial nutrition and hydration at home: A meta‐ethnography

Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis

Accessing and Receiving Speech-Language Pathology Services at the Multidisciplinary Amyotrophic Lateral Sclerosis Clinic: An Exploratory Qualitative Study of Patient Experiences and Needs

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