Downloaded from http://spcare.bmj.com/ on December 30, 2014 - Published by group.bmj.com
Research
Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis Hikari Ando,1 Biswajit Chakrabarti,2 Robert M Angus,2 Rosanna Cousins,1 Everard W Thornton,3 Carolyn A Young4
1
Department of Psychology, Liverpool Hope University, Liverpool, UK 2 Chest Centre, Aintree University Hospital, Liverpool, UK 3 School of Psychology, University of Liverpool, Liverpool, UK 4 The Walton Centre for Neurology and Neurosurgery, Liverpool, UK Correspondence to Professor Carolyn A Young, The Walton Centre NHS Foundation Trust, Lower Lane, Fazakerley, Liverpool L9 7LJ, UK; carolyn. [email protected] Received 21 March 2013 Revised 21 August 2013 Accepted 5 September 2013 Published Online First 4 October 2013
To cite: Ando H, Chakrabarti B, Angus RM, et al. BMJ Supportive & Palliative Care 2014;4:50–56.
50
ABSTRACT Objective Although non-invasive ventilation (NIV) can promote quality of life in motor neuron disease (MND), previous studies have disregarded the impact of progression of illness. This study explored how patients’ perceptions of NIV treatment evolve over time and how this was reflected in their adherence to NIV. Methods Five patients with MND (male=4, mean age=59 years), from a bigger cohort who were prospectively followed, had multiple postNIV semistructured interviews, covering more than 12 months, along with ventilator interaction data. The transcribed phenomenological data were analysed using qualitative methodology. Results Three themes emerged: experience of NIV, influence on attitudes and perceived impact of NIV on prognosis. The ventilator interaction data identified regular use of NIV by four participants who each gave positive account of their experience of NIV treatment, and irregular use by one participant who at interview revealed a negative attitude to NIV treatment and in whom MND induced feelings of hopelessness. Conclusions This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.
INTRODUCTION Non-invasive ventilation (NIV) has been acknowledged to improve quality of life among individuals with motor neuron disease (MND).1–3 While there is a lack of consensus on how to define ‘quality of life’, it is agreed that it is multidimensional and subjective.4 To date cited improvements in quality of life through NIV treatment in MND have largely been measured quantitatively and while
demonstrative of improvement, such methodology does not provide any detailed idiographic account of the patient perspective. Although a few qualitative studies have been conducted that explore experiences of the ventilator of patients with MND5–7 none have observed patient experiences longitudinally. Since NIV prolongs survival without slowing disease progression, long term users of NIV face coping with increasingly severe disability, which may alter their perceptions of NIV. Previous studies exploring the long term experience of NIV in other diseases report positive and negative impacts. On one hand, NIV is seen to sustain life, improve physical symptoms and give active life.8–10 On the other hand, the treatment is perceived to cause inconvenience, make patients vulnerable to technology, and to serve as a reminder of physical deterioration and increased reliance on others.8–10 The primary aim of this study was to qualitatively explore how people with MND experience NIV and how this changes over time as the illness progresses. Furthermore, adherence to NIV treatment as determined by ventilator data was monitored to determine whether the qualitative findings were reflected in the pattern of equipment usage. NIV treatment benefits survival if it is used for more than 4 h per night11; this level of engagement with the treatment was used as a marker in this study. METHODS This study was part of a larger 3-year longitudinal, prospective study of NIV treatment in MND from National Health Service (NHS) neurology and respiratory outpatient
Ando H, et al. BMJ Supportive & Palliative Care 2014;4:50–56. doi:10.1136/bmjspcare-2013-000494
Downloaded from http://spcare.bmj.com/ on December 30, 2014 - Published by group.bmj.com
Research clinics in Liverpool, UK. An invitation to take part in the study was made to 35 patients diagnosed with MND based on El Escorial criteria12 at the time of referral for ventilation. Exclusion criteria included symptoms of cognitive or behavioural dysfunction. Participants were followed up every 3 months from the time of referral for pulmonary assessment until their death, or withdrawal from research. Participants
Inclusion criteria for this study were survival on NIV treatment for more than 12 months, and the availability of continuous ventilator interaction data. Five patients from the main study met these criteria. The characteristics of the participants, including their relationship to their caregiver, are provided in table 1. All participants were living with their primary caregiver. Data collection Semistructured interviews
Semistructured interviews were employed for this study to allow the researchers to be flexible in exploring any interesting and relevant issues mentioned by participants.13 The interview schedule was developed by a multidisciplinary team: a neurology consultant, Table 1
The characteristics of the participants Participants (n=5)
Gender Male Female Age Mean Range Illness duration Median Range Onset type Bulbar Limb Nocturnal pulse oximetry time spent
Research
Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis Hikari Ando,1 Biswajit Chakrabarti,2 Robert M Angus,2 Rosanna Cousins,1 Everard W Thornton,3 Carolyn A Young4
1
Department of Psychology, Liverpool Hope University, Liverpool, UK 2 Chest Centre, Aintree University Hospital, Liverpool, UK 3 School of Psychology, University of Liverpool, Liverpool, UK 4 The Walton Centre for Neurology and Neurosurgery, Liverpool, UK Correspondence to Professor Carolyn A Young, The Walton Centre NHS Foundation Trust, Lower Lane, Fazakerley, Liverpool L9 7LJ, UK; carolyn. [email protected] Received 21 March 2013 Revised 21 August 2013 Accepted 5 September 2013 Published Online First 4 October 2013
To cite: Ando H, Chakrabarti B, Angus RM, et al. BMJ Supportive & Palliative Care 2014;4:50–56.
50
ABSTRACT Objective Although non-invasive ventilation (NIV) can promote quality of life in motor neuron disease (MND), previous studies have disregarded the impact of progression of illness. This study explored how patients’ perceptions of NIV treatment evolve over time and how this was reflected in their adherence to NIV. Methods Five patients with MND (male=4, mean age=59 years), from a bigger cohort who were prospectively followed, had multiple postNIV semistructured interviews, covering more than 12 months, along with ventilator interaction data. The transcribed phenomenological data were analysed using qualitative methodology. Results Three themes emerged: experience of NIV, influence on attitudes and perceived impact of NIV on prognosis. The ventilator interaction data identified regular use of NIV by four participants who each gave positive account of their experience of NIV treatment, and irregular use by one participant who at interview revealed a negative attitude to NIV treatment and in whom MND induced feelings of hopelessness. Conclusions This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.
INTRODUCTION Non-invasive ventilation (NIV) has been acknowledged to improve quality of life among individuals with motor neuron disease (MND).1–3 While there is a lack of consensus on how to define ‘quality of life’, it is agreed that it is multidimensional and subjective.4 To date cited improvements in quality of life through NIV treatment in MND have largely been measured quantitatively and while
demonstrative of improvement, such methodology does not provide any detailed idiographic account of the patient perspective. Although a few qualitative studies have been conducted that explore experiences of the ventilator of patients with MND5–7 none have observed patient experiences longitudinally. Since NIV prolongs survival without slowing disease progression, long term users of NIV face coping with increasingly severe disability, which may alter their perceptions of NIV. Previous studies exploring the long term experience of NIV in other diseases report positive and negative impacts. On one hand, NIV is seen to sustain life, improve physical symptoms and give active life.8–10 On the other hand, the treatment is perceived to cause inconvenience, make patients vulnerable to technology, and to serve as a reminder of physical deterioration and increased reliance on others.8–10 The primary aim of this study was to qualitatively explore how people with MND experience NIV and how this changes over time as the illness progresses. Furthermore, adherence to NIV treatment as determined by ventilator data was monitored to determine whether the qualitative findings were reflected in the pattern of equipment usage. NIV treatment benefits survival if it is used for more than 4 h per night11; this level of engagement with the treatment was used as a marker in this study. METHODS This study was part of a larger 3-year longitudinal, prospective study of NIV treatment in MND from National Health Service (NHS) neurology and respiratory outpatient
Ando H, et al. BMJ Supportive & Palliative Care 2014;4:50–56. doi:10.1136/bmjspcare-2013-000494
Downloaded from http://spcare.bmj.com/ on December 30, 2014 - Published by group.bmj.com
Research clinics in Liverpool, UK. An invitation to take part in the study was made to 35 patients diagnosed with MND based on El Escorial criteria12 at the time of referral for ventilation. Exclusion criteria included symptoms of cognitive or behavioural dysfunction. Participants were followed up every 3 months from the time of referral for pulmonary assessment until their death, or withdrawal from research. Participants
Inclusion criteria for this study were survival on NIV treatment for more than 12 months, and the availability of continuous ventilator interaction data. Five patients from the main study met these criteria. The characteristics of the participants, including their relationship to their caregiver, are provided in table 1. All participants were living with their primary caregiver. Data collection Semistructured interviews
Semistructured interviews were employed for this study to allow the researchers to be flexible in exploring any interesting and relevant issues mentioned by participants.13 The interview schedule was developed by a multidisciplinary team: a neurology consultant, Table 1
The characteristics of the participants Participants (n=5)
Gender Male Female Age Mean Range Illness duration Median Range Onset type Bulbar Limb Nocturnal pulse oximetry time spent
