Table 2.

Detail of included studies.

Study	Aim	Trajectory areas covered	Methodology	Data collection method	Participants (number, type)	Details of participants	Analysis	Results (themes)	Quality score
Galvin et al.18 Ireland	To explore the journey from first problem symptoms to diagnosis from the perspective of informal caregivers providing care to people with ALS	First symptoms, diagnosis	Thematic analysis	‘SSI’ – only single qualitative question asked	74 caregivers	Caregivers (n = 74) Age Mean: 55.7 (SD: 12.82) Range: 25–76 years Sex Male 23 (31.1%) Female 51 (68.9%) Relationship to the patient Spouse/partner 53 (71.6%) Son/daughter 15 (20.3%) Parent 2 (2.7%) Sibling 3 (4.1%) Friend 1 (1.4%) Lives with patient Yes 60 (81.1%) No 14 (18.9%) Principal economic status Working for payment or profit 32 (43.2%) Unemployed 4 (5.4%) Looking after family/home 16 (21.6%) Retired 19 (25.7%) Unable to work due to permanent sickness or disability 3 (4.1%) In general, would you say your health is Excellent 14 (18.9%) Very good 20 (27.0%) Good 26 (35.1%) Fair 9 (12.2%) Poor 5 (6.8%) Do you have any long-term illness, health problems or disability? Yes 39 (52.7%) No 35 (47.3%) Patients (n = 74) – N.B. not included in the study Age Mean: 65.16 (SD: 9.74) Range: 43–87 years Sex Male 45 (60.8%) Female 29 (39.2%) Site of onset: Bulbar 21 (28.4%) Spinal 51 (68.9%) Thoracic/respiratory 2 (2.7%) Time from symptom onset to diagnosis Mean: (months) 15.72 (SD: 11.04) Range: 1–56 months Median: 12 IQR: 8–22		Two main themes were identified: (1) problem signs and symptoms (A) noticing and (B) reaction; (2) interaction with the health services.	31
O’Brien et al.19 UK	To explore the personal perspectives of the diagnostic experience for people with ALS/MND and their family carers identifying issues that could impact positively or negatively on these experiences	Diagnosis	Thematic analysis	Narrative interviews	24 patients, 28 carers (18 current, 10 former)	Former carers: 6 female, 4 male Time since bereavement: 2 months to 7 years Current patients: 16 female, 9 male Age at diagnosis – 30–84 MND type – 3 PBP, 14 limb, 5 bulbar (−1 carer), 1 PMA, 1 PLS		Themes: symptom onset, experiences within primary care, diagnostic delays, communication of the diagnosis and responding to the diagnosis	33
Hugel et al.20 UK	To explore issues surrounding a new diagnosis for patients diagnosed with MND at a large regional neurosciences centre in the Northwest of England	Diagnosis		SSI	13 patients	9 male, 4 female Mean age: 64 (range: 33–79) 4 bulbar, 9 limb onset Median time from symptom onset to diagnosis = 8 months (range: 3–60 months)	Interpretive phenomenological analysis (IPA)	The major themes identified in descending order were ‘Family/carers’, ‘Communication of the diagnosis’, ‘Reaction to the diagnosis’, ‘Physical difficulties’, ‘Time before diagnosis’, ‘Information’, ‘Future’, ‘Coping with the diagnosis’ and ‘Formal support’.	33
O’Brien and Clark21 UK	To understand how personal spirituality and religious faith might help those living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) cope with their impending death	Emotional adjustment	Thematic analysis	Unsolicited narratives (internet and print-published)	54 patients	Age at diagnosis: 21–77		Our findings reveal that religious faith sustains and helps people to avoid despair, and personal spirituality helps them make sense of what is happening to them.	30
Ozanne et al.22 Sweden	To illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis	Emotional adjustment	Qualitative content analysis	SSI	13 spouses	Participating spouses were 38–87 years old (median: 68 years), and all lived with the ill person. The range of disease duration was 2–13 years		Main theme: struggling for meaning at the end of a dark tunnel Theme 1: feeling limited and isolated in the proximity of death (four subthemes) Theme 2: finding meaning despite the proximity of death (four subthemes)	30
Bolmsjo23 Sweden	To investigate the experiences of patients with ALS regarding their existential life situation.	Emotional adjustment	Hermeneutic	SSI	8 patients	6 female, 2 male Age range: 53–84		Five headings: experiences concerning meaning and guilt, experiences concerning relations, experiences concerning diagnosis and information, experiences concerning physical inability, experiences concerning dying with dignity and respect for the person	25
Foley et al.24 Ireland	To further our understanding of what loss means to people with ALS and how people with ALS exert control in their care in response to loss	Emotional adjustment		Qualitative interviews	34 patients	17 female, 17 male Age: 37–81 Duration since symptom onset 4 months to 13 years (average: 31 months) 27 lived with family, 7 alone or in care facility	Grounded theory	Headings: meaning of loss in ALS, exerting control over healthcare services	33
Locock and Brown25 UK	To explore attitudes to peer support among people with motor neurone disease (MND) and their family carers	Accessing services	Secondary analysis of two studies: Thematic analysis	Narrative interviewing with semi-structured prompting	48 patients, 22 carers	(data from original two papers) Brown study: Age range: 39–85 9 male, 4 female 2 PBP, 1 PMA, 2 PLS, 8 ALS Locock study: 35 people with MND, 11 family carers		Two overarching themes: valuing camaraderie and comparison, and choosing isolation	31
O’Brien et al.26 UK	Qualitative aim: to elucidate potential barriers to the uptake of such care (social services homecare) by analysing qualitative data from a larger sample of patients and carers than recruited by previous studies	Accessing services	(Mixed methods) Thematic analysis	Narrative interviews	24 patients, 28 carers (18 current, 10 former)	See O’Brien et al.19 (above)		Themes: entitlement, normality, care provision, understanding, putting off care, impact on carers	31
O’Brien et al.27 UK	To obtain the views of people with MND and family carers regarding multi-disciplinary team (MDT) working	Accessing services	Thematic analysis	Narrative interviews	24 patients, 18 family carers, 10 former carers	See O’Brien et al.19 (above)		Themes: having a single point of access, specialist knowledge and skills, saving time and energy, regular follow-up, valued members of the MDT, working together as a team.	26
Bakker et al.28 Netherlands	To explore the needs and value of case management according to patients with amyotrophic lateral sclerosis (ALS), their spousal caregivers and healthcare professionals in the context of multi-disciplinary ALS care	Accessing services	Thematic analysis	SSI	SSI: 10 patients, 10 carers, 10 HCPs Focus group (6 patients, 4 carers, 10 HCPs)	Patients 3 female, 7 male Age range: 51–74 years (mean age: 61 years) Disease duration: 0.6–66 months (mean: 28.5 months) All were married and had children		Two main themes: ‘needs for and receptiveness to case management’ and ‘appreciated aspects of case management’	33
Foley et al.29 Ireland	To identify key psychosocial processes that underpin how people with motor neurone disease engage with healthcare services.	Accessing services		Qualitative interviews	34 patients	Age: 37–81 17 female, 17 male Disease duration: ranging 4–169 months (average 31 months) Geographical location: rural (n = 19), semi-urban (n = 5) and urban (n = 10) Onset type: spinal (26), bulbar (6), respiratory (2)	Grounded theory	Key categories (control, reassurance, resignation and trust)	36
O’Brien and Preston30 UK	Little is known regarding the inpatient care received by patients. Our objective was to address this by exploring the experience of hospitalisation following a diagnosis of motor neurone disease from the perspective of family carers of those diagnosed with the illness	Accessing services	Secondary analysis of two qualitative studies (based on Locock and Brown)	Original studies used narrative-style interviews	10 bereaved carers (Study 1) 10 bereaved carers (Study 2*) 3 current carers (Study 1) *N.B. 2 of these are same as 2 bereaved carers from Study 1	Bereaved carers Study 1: 7 female, 3 male Time from bereavement – 2 months to 7 years Bereaved carers Study 2: 6 male, 3 female Time from bereavement – 5 months to 3 years 3 months Current carers from Study 1: 2 male, 1 female Disease duration 8 months to 30 months		Headings: lack of knowledge, basic care, reluctance for admission, final memories	32
O’Brien31 UK	To investigate the views of people at different stages in the progression of MND concerning their desire for information about their illness and to identify whether there was any pattern to information seeking among people with MND	Decision-making/information seeking		SSI	7 patients	4 female, 3 male Age range: 57–75 (mean: 66) 4 limb onset, 3 bulbar Time from diagnosis to interview 3–50 months (mean: 17 months)	IPA	Three types of information seeker: active seekers, selective seekers, information avoiders. Media coverage and unscreened information.	33
Burchardi et al.32 Germany	To explore how discussions about living wills are undertaken	Decision-making/information seeking		SSI	15 HCPs, 15 patients	Age (in years) Average 59 (43–78) Sex n (%) Male 10 67 Female 5 33 Marital status n (%) Single 1 (7) Married 13 (86) Widowed 1 (7) Education (German) n (%) High school (Hauptschule/Realschule) 11 (73) College (Abitur) 3 (20) Unknown 1 (7) Working profile n (%) Still working 2 (13) Incapable of working 10 (67) Retired 3 (20)	Grounded theory	Headings: Physicians’ and patients’ view of living wills, physicians’ and patients’ assessment of living wills, conditions for information and discussions about living Wills, appropriate time to discuss end-of-life care and living wills	33
Hagena et al.33 UK	To identify what information and support MND patients and their carers want and to determine whether there were barriers to taking part in	Accessing services, decision-making/information seeking	Not reported	Phase 1: focus groups Phase 2: postal questionnaires Phase 3: focused interviews	Phase 1: Phase 2: 18 patients Phase 3: 6 patients, 4 carers	Phase 1: 5 patients (4 female/1 male, age range: 59–84, time since diagnosis 1–6 years) 5 carers (3 female/2 male, 3 partners/2 children) 3 bereaved carers (2 F/1 M, all partners) Phase 3: 6 patients (5 F/1 M, age range: 46–78, time since diagnosis 8 months to 7 years) 4 carers (1 F/3M, all partners)	Not reported	Needs: information needs immediately after diagnosis, ongoing support and information needs, psychosocial support needs, barriers to taking part in support programmes	24
Hogden et al.34 Australia	To explore carer participation in decision-making, to identify carer roles, and determine the facilitators and barriers to carer participation in decision-making for ALS multi-disciplinary care	Decision-making/information seeking	Thematic analysis	SSI	8 carers	Relationship to patient Spouse = 5 Child = 2 Parent = 1 Duration of care (months) Range: 6–96 Mean: 40 Age (years) Range: 33–76 Mean: 56 Gender Male = 3 Female = 5 Employment status Working full-time = 4 Working part-time = 1 Not working/retired = 3		Three themes: Carer’s roles, facilitators of carer participation in decision-making and barriers to carer participation in decision-making	35
Hogden et al.35 Australia	To explore patient experiences of ALS and to identify factors influencing their decision-making in the specialised multi-disciplinary care of ALS	Decision-making/information seeking	Thematic analysis	SSI	14 patients	Age at interview (years) Mean: 60.5 (range: 40–77) Time from diagnosis to interview (months) Mean: 32.07 (range: 2–93) Gender Male 7 (50%) Female 7 (50%)		Decision-making was influenced by three levels of factors, i.e., structural, interactional, and personal.	35
Stavroulakis et al.36 UK	To explore the decision-making process leading up to gastrostomy insertion from the perspective of the patients and their informal carers	Decision-making/information seeking, Starting specific treatments	Retrospective qualitative exploration	SSI	10 patients, 8 carers	Patients: 3 male, 7 female Mean age: 67.1 (range: 42–91) 7 bulbar, 3 limb onset Mean duration of disease from onset to time of gastrostomy 26.5 months (range: 13.2–60.9)		Four headings: Factors triggering gastronomy decision (prolonged, tiring and effortful meals; the task of food preparation; choking and aspiration; weight loss) Factors delaying gastronomy decision (reluctance to give up oral feeding, uncertainty over the disease trajectory, not realising the potential benefits, negative perceptions of gastrostomy). Reflections on timing. Information to support decision-making.	34
Lemoignan and Ells37 Canada	To better understand the experience of decision-making about assisted ventilation for ALS patients	Decision-making/information seeking, starting specific treatments	Phenomenological approach	SSI	9 patients (one interviewed twice). Some (unclear how many) had carer also participating	3 female, 6 male Age range: 43–72 5 married, 3 divorced, 1 widowed 5 university educated, 2 college, 1 high school, 1 unknown 3 bulbar onset, 6 spinal Months since diagnosis: 16–132 Months since respiratory failure: 2–52 5 using NIV, 1 using LTMV, 1 using NIV and LTMV, 1 using neither		Six themes: the meaning of the intervention, the importance of context, the importance of values, the effect of fears, the need for information, adaptation to or acceptance of the intervention	33
Stavroulakis et al.38 UK	This study explores the experience of gastrostomy insertion from the perspective of the patients and their informal carers	Starting specific treatments	Thematic analysis	SSI	10 patients, 8 carers	See Stavroulakis et al.36 (above)		Three main themes: challenges of gastrostomy, benefits of gastrostomy, education on gastrostomy feeding/management	34
Gysels and Higginson39 UK	This paper compares the experience of breathlessness in cancer, COPD, heart failure and MND, four conditions sharing heavy symptom burdens, poor prognoses, high breathlessness rates and palliative care needs	Starting specific treatments (symptom)	Thematic analysis	SSI and participant observation	48 patients, 10 with MND	Patients 1 female, 9 male Age range: 24–77 (median 42)		Framework applied: the nature of breathlessness, label, timeline, cause, treatment/coping with breathlessness, treatment/coping with MND, consequences	33
Greenaway et al.40 UK	To identify factors associated with decisions made by patients with amyotrophic lateral sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study	Decision-making/information seeking, starting specific treatments	Thematic analysis	SSI	21 patients	8 female, 13 male Age range: 41–76 Intervention: 4 NIV, 16 gastrostomy, 1 NIV and gastrostomy		Three main themes: (1) patient-centric factors (including perceptions of control, acceptance and need, and aspects of fear); (2) external factors (including roles played by healthcare professionals, family, and information provision); and (3) the concept of time (including living in the moment and the notion of ‘right thing, right time’).	33
Ando et al.41 UK	To qualitatively explore how people with MND experience NIV and how this changes over time as the illness progresses	Starting specific treatments		Multiple SSI over 12 months	5 patients	Gender: Male 4, Female 1 Age: Mean: 59 years, Range: 51–75 years Illness duration: Median 29 months Range: 23–237 months Onset type: bulbar 3, limb 2 Months with NIV: Mean: 13 months, Range: 12–14 months Relationship to caregiver: Spouse/partner 3, friend 1, sibling 1	IPA	Three superordinate themes emerged: experiences of NIV, influence on attitudes and perceived impact of NIV on prognosis.	33
Sundling et al.42 Sweden	To describe the patients with ALS and their caregivers’ experiences of non-invasive positive pressure ventilation	Starting specific treatments	Qualitative content analysis	In-depth interviews	7 patients, 8 caregivers	Patients: Age range: 45–75 years All living at home and had been on home ventilation for a period of 3–15 months using the ventilator daily for 2 h up to 20 h (median: 12) Carers: Age range: 40–74 years 8 partners 3 employed, 1 working as carer, 4 retired		Three main themes emerged: ‘Getting to know the ventilator’, ‘Embracing the ventilator’ and ‘Being on a ventilator on a 20 h-24 h basis’	32
Baxter et al.43 UK	To assess whether patient use of non-invasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden	Starting specific treatments	Thematic analysis	Qualitative interviews (and scores – mixed methods)	16 family carers	Patient ages: 1 = under 60, 6 = 60–69, 9 = 70+ Onset: 1 bulbar, 2 respiratory, 13 limb 14 partner, 1 child, 1 other family member		Two headings: carer perceptions regarding the impact of NIV; carer perceptions regarding the source of burden (role change and patient needs, difficulty having time away, acceptance of professional help, timing of equipment and supportive services).	33
Baxter et al.44 UK	To examine the experiences of patients with motor neurone disease and their carers following the recommendation to use non-invasive ventilation (NIV)	Starting specific treatments	Thematic analysis	SSI	20 patients, 17 carers	Patients: 5 female, 15 male Mean age: 67 17 married/partnership, 1 divorced, 2 widowed 16 limb onset, 3 bulbar, 1 respiratory NIV usage: 13 regular, 3 low, 4 non-user		Perceived barriers, perseverance, perceived benefits	27
Baxter et al.45 UK	To describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation	Starting specific treatments, end of life	Thematic analysis	SSI	9 family carers, 15 HCPs	Carers: 8 partners, 1 child (of people with MND) (Patients: 7 limb onset, 2 bulbar, 1 respiratory)		9 key themes: 1. Unexpected speed of deterioration 2. Hospitalisation versus dying at home 3. Attempts to resuscitate 4. Decision-making regarding the withdrawal of NIV 5. Peaceful final moments 6. Turning off the machine 7. Professional uncertainty regarding the use of NIV 8. Positive impacts of NIV use 9. Concerns regarding NIV use	30
Siewers et al.46 Norway	To explore patients’, family carers’ and health professionals’ experiences with using mechanical insufflation – exsufflation (MI-E) in amyotrophic lateral sclerosis (ALS) in the home setting	Starting specific treatments	thematic content analysis, as described by Malterud	SSI	5 patients, 3 carers, 3 HCPs	1 female, 4 male Age range: 43–81		We identified several themes related to patients and their carers’ experiences with using the MI-E device: trust and confidence, learning to use the device, individualised use of MI-E and perceived effects.	33
Akiyama et al.47 Japan	To explain the experiences of caregivers of patients with amyotrophic lateral sclerosis (ALS) receiving invasive ventilation in Japan	Starting specific treatments		SSI	12 primary caregivers	10 female, 2 male Mean age: 56.1 years 9 spouses, 2 parents, 1 child	Grounded theory	Caregivers tried to ‘find a meaning in prolonging life,’ which represented a core category. Two subcategories relate directly to the core category. These were ‘hesitation and regret over the decision’ and ‘feeling of being supported’. Each subcategory had four internal dimensions: ‘uncertainty of the future’, ‘communication’, ‘maintaining their own life’ and ‘support’	33
Veronese et al.48 Italy	To identify how the decision of a tracheostomy was taken by the patients, and collect qualitative information from family carers about the end-of-life phase of ALS patients who died after being tracheostomised and mechanically ventilated, looking in particular at the possibility of the prediction of the end of life in these patients and the possible involvement of specialist palliative care	Starting specific treatments, end of life	Content analysis (thematic)	SSI	19 family caregivers	11 spouses, 7 children, 1 paid carer who lived alone with the patient for 5 years The interviews were performed after a mean period of 2.8 years after the patients’ death (range: 6 months to 7 years) (Patients: 9 male, 10 female Mean age: 57 (range: 30–72) Mean survival from diagnosis 24 months (range: 16–156)		There were two main areas that could be seen from the interviews: the ‘process of consent’ to the tracheostomy and the ‘predictability of deterioration at the end of life’	29
Herz et al.49 Australia	To explore the experiences and perceptions of carers and former carers of people with MND with emphasis on the later stages of the disease	End of life	Thematic analysis	Focus groups	11 carers (3 current, 8 former)	Current carers: 1 female, 2 male One aged <35, one 36–45, one 76–85 2 partner, one child (of person with MND) two 0–6 months since diagnosis, 1 >12 months since diagnosis Former carers: 6 female, 2 male 2 aged 36–45, 2 aged 46–55, 4 aged 56–65 4 partners, 2 children, 2 de facto carers two 0–12 months since death, two 13–24 months since death, four 25–36 months		Headings: role of the general practitioner, role of the MNDA, unremitting care, emotional cost to the carer, need for respite, accessing help, love, suspension of needs, trapped and drowning, financial burden, access to palliative care, return to living	30
Rosengren et al.50 Sweden	To describe patients’ experiences of living with ALS in the end-of-life situations	End of life	Qualitative content analysis	Written narratives (autobiographies)	4 patients	4 female, 0 male		The categories suffering, meaningfulness and experiences of a limited life were identified as describing patients’ understanding of living with ALS.	28
Ray et al.51 Australia	To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end-of-life care	End of life	Supplementary analysis (secondary analysis)	Interview and observational data	18 family caregivers (Australia) 11 family caregivers (England)	Ratio male: female = 1.4:1 All carers were partners except 1 (who was child of person with MND)		Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND.	33
Bentley and O’Connor52 Australia	To examine the perceptions of end-of-life experiences of family carers of people with MND in Western Australia (WA) to identify unmet needs and gaps in end-of-life support for people with MND and their family carers	End of life	Thematic analysis	SSI	12 bereaved carers	Gender: Male 5, female 7 Relationship to deceased Spouse/partner 11 Child 1 Age 45–49 (2) 50–59 (0) 60–69 (8) 70–79 (2) Place of death: home 8, hospital 2, hospice 1, residential facility 1 Time from diagnosis to death Less than 1 year (4) 1–2 years (3) 2–3 years (4) 3–4 years (–) More than 4 years (1) Time bereaved 3–6 months (7) 7–12 months (3) 12–15 months (2)		The themes identified can be summarised into three main areas: accessing support, accessing information and feeling prepared.	35
Whitehead et al.53 UK	To explore the experiences of people with motor neurone disease (MND), current and bereaved carers in the final stages of the disease and bereavement period	End of life, bereavement	Thematic analysis	Narrative interviews	24 patients, 28 carers (18 current, 10 former)	See O’Brien et al.19 (above)		Themes: anxieties, end-of-life decision-making and advance care planning, services as the end-of-life stage, impact on carers, euthanasia	33
Solomon and Hansen54 USA	To explore the unique lived experiences of one patient who died at home and her family members, and to interpret how dying at home influenced patterns of bereavement for this patient’s family	End of life, bereavement	(Thematic analysis)	In-depth telephone interviews	1 patient, her husband and 3 children	Patient: 78-year-old white female, diagnosed 6 months prior to death Husband 79 years old Children 52–58 years old	Benner’s interpretative phenomenological approach	Paradigm case: the meaning of being at home (exemplars – driving her own course, not being a burden). Themes contributing to a successful death: patient characteristics, family characteristics, support, emotions, time, aspects of the healthcare team	32
Aoun et al.55 Australia	The aim of this study was to explore the experiences of MND family carers from their time as a carer of their spouse through to their bereavement	Bereavement	Thematic analysis	Semi-structured interviews	16 bereaved family carers	13 female, 3 male All partners of MND patients Age range: 53–81 (mean: 65) Beareaved between 1–4 years (mean: 27.5 months) Patient age range: 50–82 (mean: 65) Length of time to obtain initial diagnosis 1–12 months (mean: 5.8 months) Time from diagnosis to death 3 months to 6 years (mean: 22 months) All 16 offered palliative care		Five themes – the work of family carers, the change in relationship from spouse to family carer, family caring as a series of losses, coping mechanisms of family carers and supportive and palliative care experiences of family carers. The six participants who met the criteria for prolonged grief disorder accessed palliative care at a later stage in the disease trajectory.	34
Penrod et al.56 USA	To illustrate variations in caregiving trajectories as described by informal family caregivers providing end-of-life care	Trajectories		Unstructured interviews	46 caregivers (10% ALS) 1 ALS case study	ALS case study: 38-year-old female caring for husband	Grounded theory	The unifying theme of end-of-life caregiving is ‘seeking normal’ as family caregivers worked towards achieving a steady state, or sense of normal during their caregiving experiences.	29
Shipley57 USA	Aim 1 was to document the life patterns of family caregivers of ALS patients exhibited through the nurse researcher/ALS family caregiver process of health as expanding consciousness (HEC). Aim 2 was to integrate the life patterns of individual family caregivers of ALS patients into a thematic pattern of the whole representing the ALS caregiving experience across all caregiving families	Trajectories		SSI	8 family caregivers	4 female, 4 male Age range: 27–85 4 working full time, 4 retired 7 partners, 1 child 8 white ethnicity	Hermeneutic dialectics	Nine patterns: (1) suspicions emerge but ALS diagnosis is delayed, (2) support that helps the caregiver, (3) support can make caregiving more difficult, (4) looking towards the future, (5) adaptations from ALS, (6) obstacles to the caregiving role, (7) caregiver respite, (8) focus of others and (9) strategies aiding the caregiving role. The nurse researcher/ALS family caregiver process that was revealed in this research study was (1) establishing a time and place for the nurse researcher and ALS caregiver to form a relationship, (2) developing a bond with each ALS caregiver, (3) creating an atmosphere which allows the caregiver and nurse complete freedom to express themselves openly, (4) offering a sense of timelessness for insights about the ALS caregiving experience and (5) transformation as the nurse researcher and ALS family caregiver came together to find meaning in the chaotic experience of family caregiving for an ALS patient.	35
Harris et al.8 England	To explore the meaning of living with uncertainty for people diagnosed with MND	Throughout illness trajectory	Hermeneutic (interpretive) phenomenological project	Semi-structured interview	Four people with MND	Recruited from the MNDA Care Centre in northwest England; inclusion criteria were accepted diagnosis of MND (all types), above age 18, had been receiving care and treatment for 3–6 months. Individuals were excluded if they were deemed unable to provide informed consent	Interpretive description	Three aspects of the illness trajectory of MND: (1) body failing prematurely and searching for answers, (2) body deterioration and responses to care, (3) body nearing its end and needing to talk	33

SD: standard deviation; MND: motor neurone disease; IQR: interquartile range; HCPs: healthcare professionals; COPD: chronic obstructive pulmonary disease; MNDA: Motor Neurone Disease Association ; SSI: semi-structured interview; PBP: progressive bulbar palsy; PMA: progressive muscular atrophy; PLS: primary lateral sclerosis; LTMV: long-term mechanical ventilation; MI-E: mechanical in-exsufflation.