Effects of a Home Respiratory Management Program for Patients with Amyotrophic Lateral Sclerosis

Moon Sook Hwang; Mi Kyung Lee; Jong Rye Song

doi:10.7475/kjan.2017.29.4.406

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Hwang, Lee, and Song: Effects of a Home Respiratory Management Program for Patients with Amyotrophic Lateral Sclerosis

Original Article

Korean J Adult Nurs 2017;29(4):406-418.

Published online: 9 August 2017

DOI: https://doi.org/10.7475/kjan.2017.29.4.406

Effects of a Home Respiratory Management Program for Patients with Amyotrophic Lateral Sclerosis

Moon Sook Hwang, Ph.D., APN^1,, Mi Kyung Lee, Ph.D., APN², Jong Rye Song, Ph.D., APN³

¹Department of Nursing Science, School of Oriental Medicine, Woosuk University, Wanju, Korea

²Department of Clinical Nursing, Samsung Medical Center, Seoul, Korea

³Department of Home Health Nursing, Aju University Hospital, Suwon, Korea

Corresponding author: Hwang, Moon Sook Department of Nursing Science, School of Oriental Medicine, Woosuk University, 443 Samyre-ro, Samyre-up, Wanju 55338, Korea. Tel: +82-63-291-1989, Fax: +82-63-291-1547, E-mail: msyellow45@hanmail.net

- This study was supported by the research fund in National Research Foundation of Korea(No: 2012R1A1A3013441)

Received 3 June 201724 July 2017 Accepted 26 August 2017

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Purpose

The purpose of this study was the evaluation of a Home Nursing Care based Respiratory Management Program (HHNbRMP) on health care ability, respiratory and psychological status and quality of life (QoL) of patients with Amyotrophic Lateral Sclerosis (ALS). The management program utilizes a home mechanical ventilator (HMV) in the home.

Methods

A non-randomized controlled experimental design was employed. HHNbRMP based on Cox's Interaction Model which includes cognitive assent (education, specialized medical care, case management), internal motivation (airway clearance, thoracic exercise, air accumulated exercise) and psychological response (meditation & active listening). These variables were measured first for a base line reading and then at four, twelve, and twenty-four weeks. The data were analyzed by t-test/ANOVA and Repeated Measures ANOVA/ANCOVA.

Results

Only respiratory difficulty among the variables showed a significant difference at twelve and twenty-four weeks (F=7.52, p=.009; F=7.58, p=.009).

Conclusion

The Home Health Nursing Management program was effective in managing respiratory difficulty. The patients were satisfied with this program. Applying this program tailored to patients’ condition, their respiratory health parameters would be improved.

Keywords: Home health nursing, Mechanical ventilators, Respiration, Psychology, Quality of life

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Figure 1.

Conceptual framework.

Table 1.

Contents of Home Health Nursing Care based Respiratory Management Program

Component	Purpose		Application method	Application strategy	Material
Cognitive assent	Education-offering the information		• Cognitive education: understanding of disease and importance of health pursuit: management (treatment, drug, risk factor etc.) • Technical education: self care, emergency coping ability	• Individual education •Demonstration •Practice education	• Education related booklets •Health diary
	Specialized medical care		• Identifying and monitoring of patients' status (especially, respiratory function) • Offering required medical care service: treatment and nursing care •Problem solving of medical problems by connecting to physicians and hospitals	• Direct nursing every per visit	• Treatment related materials
	Case management		• Coordinating the care for medical problem. • Developing the multidisciplinary linkage channel: physician-ventilator company-public health center-community resource •Developing the case management tool: notebook for self care and linkage tool & care path •Developing the care manual for caregivers and home care nurses	• Care path basis management • Coordination and linkage •Development of related material	• Care path • Linkage notebook for communication • Manual book for caregivers & nurses
Internal motivation	Respiratory exercise	Airway clearance for pneumonia prevention	• Suction of tracheal tube after percussion & vibration • Education and encouragement of cough assistor • Management of saliva: letting the saliva gauze or oral suction device application	• Upon suction •≥4 times per day	• Application to caregivers after education •Nurse's implementation
		Thoracic exercise for thoracic expansion	① Exercising arm: stretching outside arm with fixing by wrapping up shoulder joint and raising arm with fixing by wrapping up shoulder joint ② Squeezing thorax: massaging & slight pressing the lower & front thorax using both palm with adjusting expiration ③ Twitching thorax: pushing inside the upper & side thorax using both hands with adjusting the expiration and squeezing thorax with putting hand on back intercostal thorax & other hand front intercostal thorax with adjusting the expiration ④ Expanding thorax: lifting thorax using finger with adjusting the inspiration ⑤ Twisting trunk with putting one hand on lower thorax and the other hand wrapping the hip from the opposite direction ⑥ Stretching abdomen and hip muscle: bending the both knees toward chest for stretching back and lower putting the abdomen. ⑦ Finishing exercise: getting both legs and keeping comfortable posture	• Nurses: upon visiting •Family:≥1 per day	implementation upon visiting patients
		Air accumulated exercise for lung compliance	• If cough assist (+): ambu bagging with cough assist → suction → ambu bagging •If cough assist (-): ambu bagging with percussion/vibration → suction → ambu bagging ※ Ambu bagging method: 5~10 times to last 6 seconds per a cycle (1:E ratio 1:2)	• Upon suction
Psychological response	Meditation for mind control & relaxation		① Imaging diaphragm breathing with aroma oil ② Respiratory meditation by CD: 3~4 minutes and consecutively 3 times	•≥ Once per day	• CD for meditation • Aroma oil
	Active listening for emotional support		• Active listening and encouragement (patients and family) • Guide to joining the cafe concerned and activity	• Counseling •Visit by phone call	• Mediator (nurse)

Nurses' time schedule for HHNbRM=1~2 weeks: every week → 3~12 weeks: every other weeks → 13~24 weeks: every 1 month; education for offering information on every visit.

Table 2.

Homogeneity Test for Patients' and Caregivers' Characteristics (N=42)

Characteristics			Categories	Exp. (n=20)	Cont. (n=22)	x² or t	p
Characteristics			Categories	n (%) or M± SD	n (%) or M± SD	x² or t	p
Patients	General	Gender	Male	11 (55.5)	17 (77.3)	2.34	.126
		Gender	Female	9 (45.0)	5 (22.7)
		Age (year)	＜45	14 (70.0)	16 (72.7)	0.04	.845
			≥45	6 (30.0)	6 (27.6)
				60.00±9.94	58.32±11.22	0.51	.611
		Religion	No	5 (25.0)	8 (36.4)	0.63	.426
		Religion	Yes	15 (75.0)	14 (63.6)
		Marital status	Married	18 (90.0)	18 (81.8)		.665^†
		Marital status	Others	2 (10.0)	4 (18.2)
		Economic status	＜4 millions won	18 (90.0)	22 (100.0)		.221^†
		Economic status	≥4 millions won	2 (10.0)	0 (0.0)
		Family living with	Spouse	19 (95.0)	18 (81.8)		.187^†
		Family living with	Parents or others	1 (5.0)	4 (18.2)
		Health insurance	General Insurance	17 (75.0)	16 (76.2)	0.08	1.000
		Health insurance	Social Insurance	3 (15.0)	5 (23.8)
	Disease related	Paralytic type	Bulbar type	8 (42.1)	7 (36.8)	0.11	.740
		Paralytic type	Limb type	11 (57.9)	12 (63.2)
		Diagnosed age	Under 45 years	14 (70.0)	15 (70.7)	0.01	.920
		Diagnosed age	Over 45 years	6 (30.0)	6 (28.6)
		Months passed af	ter diagnosis	77.35±62.36	63.14±61.72	1.74	.463
		Ventilator type	Volume type	11 (55.0)	15 (68.2)	0.77	.380
		Ventilator type	Pressure type	9 (45.0)	7 (31.8)
		Functional status		0.31±3.15	0.42±0.47	0.94	.352
Care givers		Gender	Male	5 (25.0)	2 (9.1)		.229^†
		Gender	Female	15 (75.0)	20 (90.9)
		Age (year)	Under 45	2 (10.0)	3 (13.6)		.897^†
		Age (year)	45~65	18 (80.0)	19 (86.4)
		Religion	No	6 (30.0)	6 (27.3)	0.04	.845
		Religion	Yes	14 (70.0)	16 (72.7)
		Marital status	Married	19 (95.0)	16 (72.7)		.096^†
		Marital status	Others	1 (5.0)	6 (27.3)
		Relation to patient	Spouse	15 (75.0)	14 (63.6)	0.63	.426
		Relation to patient	Others	5 (25.0)	8 (36.4)
		Health condition	Good	5 (25.0)	5 (23.8)	0.50	.778
			Average	8 (40.0)	7 (31.8)
			Poor	7 (35.0)	10 (45.5)
		Type of external aid	Long term care insurance	7 (35.0)	4 (18.2)	1.56	.460
			Caregiver's support	9 (45.0)	12 (54.5)
			Others	4 (20.0)	6 (27.3)
		Ability of health care	Self-care ability	4.18±0.51	4.44±0.42	1.81	.077
		Ability of health care	Emergency coping ability	14.20±2.40	15.27±1.80	1.63	.113

^† Fisher's exact test; Exp.=experimental group; Cont.=control group; ALS=amyotrophic lateral sclerosis

Table 3.

Difference in Respiratory and Psychological Status, Wholistic Status and Ability of Health Care between Groups according to the Time Intervals (N=42)

Variables	Categories		Exp. (n=20)	Cont. (n=22)	t	p	After 12 wks			After 24 wks
Variables	Categories		M± SD	M± SD	t	p	Source	F	p	Source	F	p
Respiratory status	etCO₂	Pretest	28.04±6.30	29.89±5.92	0.98	.346	Group	1.91	.176	Group	1.55	.222
		Post 4 wks	28.04±6.30	29.89±5.92	0.95	.346	Time	1.84	.184	Time	1.08	.335
		Post 12 wks	26.59±7.06	28.55±5.60	0.96	.342	G∗T	0.07	.937	G∗T	0.16	.814
		Post 24 wks	27.00±8.83	27.76±5.57	0.34	.740
	RD	Pretest	8.40±2.26	6.05±3.58	2.57	.014	Group	7.52	.009	Group	7.58	.009
		Post 4 wks	7.05±3.30	3.73±3.63	3.09	.003	Time	0.29	.714	Time	0.15	.914
		Post 12 wks	5.79±4.14	5.00±4.18	0.60	.553	G∗T	1.56	.220	G∗T	1.43	.241
		Post 24 wks	6.58±3.19	4.05±3.91	2.18	.036
Psychological status	Anxiety	Pretest	1.82±0.70	1.77±0.78	0.19	.850	Group	0.01	.942	Group	0.02	.884
		Post 4 wks	1.81±0.69	1.68±0.81	0.57	.572	Time	1.08	.349	Time	0.84	.480
		Post 12 wks	1.65±0.88	1.82±0.74	0.66	.513	G∗T	1.13	.334	G∗T	1.20	.325
		Post 24 wks	1.74±0.69	1.92±0.67	0.80	.427
	Depression	Pretest	1.88±0.62	2.11±0.50	1.34	.188	Group	0.08	.782	Group	0.01	.979
		Post 4 wks	1.54±0.45	1.68±0.57	0.91	.371	Time	3.08	.058	Time	2.18	.108
		Post 12 wks	1.85±0.51	2.03±0.65	0.99	.329	G∗T	0.02	.979	G∗T	0.04	.991
		Post 24 wks	1.82±0.65	2.06±0.61	1.17	.248
Wholistic status	QoL	Pretest	4.04±2.27	3.83±2.12	0.31	.759	Group	0.04	.851	Group	.0.04	.852
		Post 4 wks	4.09±4.14	4.14±2.26	0.07	.946	Time	0.31	.734	Time	0.55	.650
		Post 12 wks	3.98±2.15	4.14±1.83	0.25	.808	G∗T	0.57	.568	G∗T	0.64	.592
		Post 24 wks	4.06±1.66	4.10±1.81	0.07	.947

Exp.=experimental group; Cont.=control group; wks=weeks, etCO₂=expiratory tidal CO₂,; RD=respiratory difficulty; QoL=quality of life; G∗T=Group∗Time.

Table 4.

Difference of Caregivers' Ability of Health Care between Groups according to Time Intervals (N=42)

Variables	Categories	Exp. (n=20)	Cont. (n=22)	t	p	After 12 wks			After 24 wks
Variables	Categories	M± SD	M± SD	t	p	Source	F	p	Source	F	p
Self care ability	Pretest	4.18±0.51	4.44±0.42	1.81	.077	Group	0.71	.405	Group	0.43	.515
	Post 4 wks	4.49±0.41	4.46±0.44	2.42	.020	Time	1.40	.253	Time	1.01	.372
	Post 12 wks	4.31±0.73	4.43±0.41	0.51	.618	G∗T	1.03	.347	G∗T	1.05	.357
	Post 24 wks	4.42±0.73	4.42±0.46	1.59	.124
Emergency coping ability	Pretest	14.20±2.40	15.27±1.80	1.63	.113	Group	0.54	.467	Group	0.93	.341
	Post 4 wks	13.00±1.98	13.55±1.53	0.10	.921	Time	0.01	.988	Time	0.49	.998
	Post 12 wks	14.16±1.61	14.14±1.11	0.04	.972	G∗T	0.81	.451	G∗T	0.49	.689
	Post 24 wks	13.17±2.09	13.16±2.54	0.01	.991

Exp.=Experimental group; Cont.=Control group; wks=weeks; G∗T=Group∗Time.

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