Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis
Abstract 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...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2023-08-01
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| Series: | Health Expectations |
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| Online Access: | https://doi.org/10.1111/hex.13786 |
| _version_ | 1827761617585045504 |
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| author | Sean White Alicia O'Cathain Vanessa Halliday Liz Croot Christopher J. McDermott |
| author_facet | Sean White Alicia O'Cathain Vanessa Halliday Liz Croot Christopher J. McDermott |
| author_sort | Sean White |
| collection | DOAJ |
| description | Abstract 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). |
| first_indexed | 2024-03-11T10:15:30Z |
| format | Article |
| id | doaj.art-2ac93d1985744b819a8957c9e6a8ee81 |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-03-11T10:15:30Z |
| publishDate | 2023-08-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-2ac93d1985744b819a8957c9e6a8ee812023-11-16T08:25:35ZengWileyHealth Expectations1369-65131369-76252023-08-012641418143510.1111/hex.13786Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesisSean White0Alicia O'Cathain1Vanessa Halliday2Liz Croot3Christopher J. McDermott4Neurosciences Department, Faculty of Medicine Dentistry and Health The University of Sheffield Sheffield UKSchool of Health and Related Research (ScHARR) The University of Sheffield Sheffield UKSchool of Health and Related Research (ScHARR) The University of Sheffield Sheffield UKSchool of Health and Related Research (ScHARR) The University of Sheffield Sheffield UKNeurosciences Department, Faculty of Medicine Dentistry and Health The University of Sheffield Sheffield UKAbstract 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).https://doi.org/10.1111/hex.13786amyotrophic lateral sclerosisdecision‐makinggastrostomymotor neuron diseasequalitativeventilation |
| spellingShingle | Sean White Alicia O'Cathain Vanessa Halliday Liz Croot Christopher J. McDermott Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis Health Expectations amyotrophic lateral sclerosis decision‐making gastrostomy motor neuron disease qualitative ventilation |
| title | Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis |
| title_full | Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis |
| title_fullStr | Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis |
| title_full_unstemmed | Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis |
| title_short | Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis |
| title_sort | factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation a qualitative evidence synthesis |
| topic | amyotrophic lateral sclerosis decision‐making gastrostomy motor neuron disease qualitative ventilation |
| url | https://doi.org/10.1111/hex.13786 |
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