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Clinical Investigations in Critical Care |

Caregiver Strain Associated With Tracheostomy in Chronic Respiratory Failure* FREE TO VIEW

Silvia Rossi Ferrario, PhD; Anna Maria Zotti, PhD; Sergio Zaccaria, MD; Claudio Ferdinando Donner, MD, FCCP
Author and Funding Information

*From the Psychology Unit (Drs. Rossi Ferrario and Zotti) and the Division of Pulmonary Diseases (Drs. Zaccaria and Donner), “S. Maugeri” Foundation, Rehabilitation Institute of Veruno, Italy.

Correspondence to: Silvia Rossi Ferrario, PhD, Psychology Unit, “S. Maugeri” Foundation, Rehabilitation Institute of Veruno, Via per Revislate 13, 28010 Veruno (Novara), Italy; e-mail: sferrario@fsm.it



Chest. 2001;119(5):1498-1502. doi:10.1378/chest.119.5.1498
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Published online

Study objectives: The aim of this study was to evaluate the psychological and psychosocial impact of tracheostomy on the caregivers of patients who have undergone tracheostomies.

Setting: Rehabilitation facility.

Participants: Sixty-three lay caregivers of inpatients and outpatients with various underlying diseases who have undergone tracheostomies.

Methods: At the beginning of the study, the 63 caregivers completed a previously validated questionnaire designed to assess the problems related to caring for patients with chronic diseases. Approximately 1 year later, 40 of the 63 caregivers completed the same questionnaire a second time. The results were analyzed statistically in order to investigate the caregivers’ perceptions of the factors associated with their own particular situation.

Results: The answers of the 40 subjects who completed the questionnaire twice revealed the existence of perceived strain persisting over time, which was greater in female caregivers and in those caring for patients who had had a tracheostomy for < 14 months. The younger caregivers (age < 59 years) and those caring for patients receiving nocturnal ventilation expressed a continuing need for information about the disease. Finally, the caregivers said that they, as well as their patients led very restricted personal lives.

Conclusions: Tracheostomy causes a substantial amount of caregiver strain, which should be taken into account when deciding on any treatment plan.

Tracheostomy for domiciliary mechanical ventilation or transtracheal oxygen therapy is a recognized therapeutic option in the treatment of chronic respiratory failure,13 but it may have a significant psychological and psychosocial impact on both the patients and their families. The few published studies mainly concern patients with neuromuscular diseases who have undergone tracheostomies: in a study of“ predominantly neuromuscular patients,” Bach4found that they reported significant problems in terms of speech, appearance, and comfort, and they preferred any noninvasive method of ventilatory support to tracheostomy. However, the results of another study indicate that such patients consider their posttracheostomy quality of life to be satisfactory.5

The studies of the caregivers of patients who have undergone tracheostomies have been limited to educational issues,6 and, to the best of our knowledge, no data are available regarding the strain perceived by the caregivers of patients whose underlying disease is not neuromuscular. However, as it is well known that the caregivers of patients with chronic diseases experience a high degree of distress,7 a similar situation may well exist in caregivers of patients who have undergone tracheostomies. Furthermore, tracheostomy places an additional burden on caregivers because of the need to be able to aspirate bronchial secretions correctly (in order to ensure the best possible local hygiene) and to manage any necessary mechanical ventilation equipment. Both of these are time-consuming activities that require technically competent caregivers, especially if the patient is not completely self-sufficient.

The aim of this study, which was approved by the scientific committee of our institute, was to identify the problems perceived by the caregivers of patients who have undergone tracheostomies.

Subjects

The study involved the lay caregivers of patients who had undergone tracheostomies because of chronic severe respiratory failure, mainly COPD, kyphoscoliosis, and phrenic nerve paralysis (Table 1 ). During the course of patient hospitalizations or outpatient hospital visits to our institute, all of the people who defined themselves as principal caregivers were approached by a clinical psychologist who explained the aim of the study and obtained their individual consent to participate in it. Of the 75 caregivers approached, 63 agreed to take part.

The personal and clinical characteristics of the patients were obtained from the computerized information system of the institute; none of the patients had been the subject of a short-term hospital admission in the 3 months preceding the enrollment of his/her caregiver into the study.

On enrollment (time 1), the caregivers were briefly interviewed and asked to complete the family strain questionnaire (FSQ).8 Approximately 1 year later (time 2), they were asked to complete the same questionnaire again during an outpatient hospital visit or by mail. Only 40 of the original 63 caregivers actually completed the questionnaire twice. The reasons for the discrepancy were that 14 patients had died in the meantime, 4 patients had had their tracheostomy opening closed, and 2 patients had been followed up in hospitals nearer to their homes. Another three caregivers did not mail back the questionnaire.

Instrument

The FSQ8 was specifically designed to study caregiver distress and consists of the following:

  1. A personal card containing information about the age, education, employment, and marital status of the caregiver, their relationship with the patient, and the composition of the family;

  2. A brief interview relating to the patient’s disease/condition, leisure time activities, and socioeconomic resources;

  3. Two multiple choice questions concerning the caregiver’s perception of the psychosocial distress suffered by him/her and his/her patient as a result of the disease/condition (with particular reference to feelings of shame, irritation, burden, and reduced social contacts); and

  4. 47 dichotomous items assessing the following three factors derived from factorial analysis: (1) family strain (α, 0.91 [36 items]), including the subfactor “thoughts about death” (α, 0.61[ 3 items]); (2) family relationships (α, 0.72 [7 items]); and (3) knowledge of the disease (α, 0.60 [4 items]).

The items in the first factor refer to perceived emotional, psychophysical, and financial strain, the ability to cope with the disease, restrictions on personal and social life, and expectations. The items in the second factor concern the quality of family relationships, and the items in the third factor relate to the need for more information about the disease. In the case of the first and third factors, the higher the score, the greater the perceived strain and the need for information; in the case of the second factor, the higher the score, the better the quality of family relationships. For the purposes of the present study, the psychologist administering the questionnaire explicitly asked the caregiver to reply to the questions in relation to the specific condition of tracheostomy.

Validation of the Questionnaire

The FSQ has been validated in 296 subjects (218 women and 78 men; mean [± SD] age, 47.34 ± 13.7 years) who were caring for patients with different chronic diseases (eg, cancer, kidney failure, cardiac diseases, neurologic diseases, or COPD).8 The results of this validation showed that all of the subjects perceived a certain degree of psychophysical strain but also seemed to find adaptive coping resources: the mean score for the first factor was 14.66 ± 7.99 (theoretical range, 0 to 36), with the highest concentration of answers in the relatively low 9 to 11 range. Furthermore, when the subjects were divided into caregivers (the 51.2% of subjects who declared that they were primarily and constantly involved in caring for the patient) and noncaregivers (the 48.8% who declared they were only occasionally involved), the higher score of the caregivers compared to the noncaregivers (16.34 ± 8.64 vs 12.94 ± 6.91, respectively) indicated the ability of the FSQ to discriminate between these two categories. The mean score of 6.24 ± 1.32 for the second factor showed very good family relationships, whereas that for the third factor (2.98 ± 1.16) indicated a significant need for better knowledge of the disease. The scores for factors 2 and 3 were not influenced by age, gender, or educational level, but women and less educated subjects did have higher factor 1 scores.

Concurrent validity was measured using the Italian version of the Spielberger State-Trait Anxiety9questionnaire and an Italian depression questionnaire derived from the Beck Depression Questionnaire.10 Test-retest reliability was calculated by means of an unpublished pilot study of 10 caregivers of terminal cancer patients, who were retested 3 weeks after the first administration of the questionnaire. The correlations of the factors and the subfactor were all significant (p ≤ 0.01). As far as the present study is concerned, the Cronbach α values at time 2 were 0.92, 0.73, and 0.61, respectively, for factors 1, 2, and 3, and 0.39 for the subfactor. The test-retest reliability is shown in the “Results” section.

Statistical Analysis

Descriptive statistics and frequency distributions were generated in relation to the characteristics of both patients and caregivers. Test-retest reliability was computed using Pearson’s correlation coefficient. Analysis of variance for repeated measures was used to investigate the effect of gender, age, education, time since tracheostomy, and the need for nocturnal ventilation on the factor scores.

The characteristics of the final sample of 40 caregivers and patients are shown in Table 1.

Table 2 shows the overall time 1 and 2 mean scores of all of the caregivers for the three factors of family strain, family relationships, and knowledge of the disease, as well as for the subfactor of thoughts about death. There was no significant difference between the two factor 1 scores; the test-retest correlation was 0.69 (p < 0.01). All of the caregivers showed a medium degree of strain, which tended to persist at the same level 1 year later. However, this level was higher than that found in the questionnaire validation sample (14.66 ± 7.99). There was also no difference between the two factor 3 scores: the test-retest correlation of 0.38 (p < 0.05) showed that the caregivers continued to need more information about the disease over time. No test-retest correlation was found in the case of factor 2, which could perhaps be expected given the variability that generally characterizes relationships over time. The test-retest scores relating to the thoughts-about-death subfactor had a correlation of 0.48 (p < 0.01), and the item analysis revealed that caregivers thought about their patients’ death (57%) but did not want to talk about it (85%).

Possible Interfering Variables

The analysis of variance results (Table 3 ) showed that only gender influenced the score of factor 1, that only age and the need for nocturnal ventilation influenced the score of factor 3, that time since tracheostomy only had a tendency to affect the score of factor 1, and that education had no effect on the scores of any of the factors. In particular, female caregivers had significantly higher factor 1 scores than their male counterparts at both time 1 and time 2. The caregivers aged less than the median value of 59 years, and those caring for patients requiring nocturnal ventilation had higher factor 3 scores. Those caring for patients who had undergone tracheostomies for < 14 months tended to have a higher factor 1 score.

Other Perceived Characteristics of Caregiver Status

In order to confirm the presence of some of the features characterizing the perceptions of caregivers at time 1, we made a further item analysis at time 2. The most interesting results of this second analysis were that most of the caregivers (84%) said that their patients experienced some kind of psychosocial distress (eg, embarrassment because of the tracheostomy, a reduction in social contacts because of shame, or a feeling of being a burden on the family), but only 12 caregivers said that they had similar problems themselves (eg, shame, feelings of disgust, or distress caused by some symptoms). The caregivers’ leisure time appeared to be characterized by restricted social relationships (77.5% hardly ever saw friends; and 87.5% almost never went to social meeting places such as bars, restaurants, or cultural circles) and restricted outdoor leisure activities (> 75% never went to the cinema, went walking, went cycling, etc). Finally, 77% of the caregivers declared that they had religious beliefs, and 94.7% said that they felt better when they cared for their patients.

On the basis of our data, it seems that the greatest strain is felt by female caregivers and by those caring for patients who have undergone tracheostomies for < 14 months, and it seems that this perception persists over time. Previous studies have highlighted the fact that female caregivers of patients with chronic diseases are more susceptible to strain,1113 but there are no published reports concerning the specific effect of time since tracheostomy.

A second finding is that chronicity does not seem to reduce the need for more information about the disease, particularly in the case of caregivers aged < 59 years (who may be more sensitive to seeking new treatment possibilities) and those who care for patients requiring nocturnal ventilation, who have to face the potential technical difficulties arising from machine dysfunctions. Finally, the fact that caregivers think about their patient’s death but do not want to talk about it suggests that their caregiving is permeated by fear.

It is hardly surprising that the caregivers acknowledged the fact that they lead a very restricted personal life, but it is interesting to note that they said they felt better when caring for their patients. This is a finding that also has been reported by other authors,1415 some of whom have suggested that caregivers attempt to counteract the distress caused by an unchangeable situation by investing it with a positive meaning.

It is also interesting to note that the caregivers felt that their patients experienced more psychosocial distress than they did. However, it is worth remembering that the embarrassing aspects and social stigma of a disease not only represent a further cause of restricted or conflicting relationships for the patient, but that these effects are also likely to be passed on to the caregiver.16 In addition to their persistently felt sense of strain, the declared need for continuous education expressed by the caregivers strongly suggests that periodic briefings aimed at reassuring them and helping them to cope with the realities that they will have to face should form part of the process leading to any programmed tracheostomy.

This study has a number of limitations. One is that the patients themselves were not interviewed, and so we do not know their own opinions concerning their own and their caregivers’ problems. Furthermore, we do not have any pretracheostomy data and, therefore, cannot say to what extent the distress of the caregivers may have been the result of the increasing disability related to the progression of the disease. However, it is interesting to note that, during the interviews, many of the caregivers expressed a sense of intolerance toward their patients, and so it may be that the general situation rather than disease progression and possible loss was uppermost in their minds. Some of the wives expressed a sense of disgust concerning the physical proximity of their partner who had undergone the tracheostomy. Sleeping together and exchanging gestures of affection were seen as a source of severe distress because of the tracheostomy, and this also led to a sense of guilt because they declared that they had good marital relations.

Nevertheless, although our questionnaire has some limitations because of the unbalanced factorial distribution of its items, it has quite good psychometric properties, is suitable for clinical practice, and appears to be a useful instrument for screening the perceived strain of caregiving as well as some other aspects of it.

Abbreviation: FSQ = family strain questionnaire

Table Graphic Jump Location
Table 1. Characteristics of Final Sample of Caregivers and Patients*
* 

Values given as mean ± SD or No. unless otherwise indicated. All of the patients were receiving long-term transtracheal oxygen therapy.

 

Mixed connective tissue/congenital myopathy.

Table Graphic Jump Location
Table 2. FSQ Factor and Subfactor Scores*
* 

NS = not significant.

 

Significance level of Pearson’s correlation.

Table Graphic Jump Location
Table 3. Variables Influencing the Caregivers’ Scores on Two Factors of the FSQ*
* 

Values given as mean ± SD, unless otherwise indicated.

 

Interaction.

We are grateful to Giovanna Omarini and Roberta Fornara for their help with the data management and statistical analysis, to George Cremona for his comments and suggestions, and to Kevin Smart for assisting in the preparation of the final text.

Bertrand, A, Milane, J, Dufranc, P (1985) Traitement au long cours de l’insuffisance respiratoire chronique par ventilation endotrachéale à domicile chez 118 patients tracéotomisés.Rev Mal Respir2,91-95. [PubMed]
 
Dudeffant, P, Manier, G, Gbikpi-Benissan, G, et al Devenir des insuffisants respiratoires chroniques traités à domicile par trachéotomie et ventilation assistée.Rev Mal Respir1985;2,145-150. [PubMed]
 
Zaccaria, S, Zaccaria, E, Zanaboni, S, et al Home mechanical ventilation in kyphoscoliosis.Monaldi Arch Chest Dis1993;48,161-164. [PubMed]
 
Bach, JR A comparison of long-term ventilatory support alternatives from the perspective of the patient and caregiver.Chest1993;104,1702-1706. [CrossRef] [PubMed]
 
Lissoni, A Tracheostomy and mechanical ventilation in ventilatory failure of patients with neuromuscular disease.Monaldi Arch Chest Dis1995;3,232-234
 
Fisher, DA Long-term management of the ventilator-dependent patient: levels of disability and resocialization.Eur Respir J Suppl1989;7,651s-54s. [PubMed]
 
Covinsky, KE, Goldman, L, Cook, EF, et al The impact of serious illness on patients’ familiesJAMA1994;272,1839-1844. [CrossRef] [PubMed]
 
Rossi Ferrario, S, Bacchetta, M, Omarini, G, et al Il Family Strain Questionnaire: una proposta per il Caregiving assessmentPsicologia della Salute1998;2/3,119-127
 
Lazzari, R, Pancheri, PSTAI. Questionario di autovalutazione dell’ansia di stato e di tratto. 1980; Organizzazioni Speciali. Firenze, Italy:.
 
Bertolotti, G, Zotti, AM, Michielin, P, et al A computerized approach to cognitive behavioral assessment: an introduction to CBA-2.0 primary scalesJ Behav Ther Exp Psychiatry1990;21,21-27. [CrossRef] [PubMed]
 
Zarit, SH, Todd, PA, Zarit, JM Subjective burden of husbands and wives as caregivers: a longitudinal study.Gerontologist1986;26,260-266. [CrossRef] [PubMed]
 
Knight, RG, Devereux, RC, Godfrey, HPD Psychosocial consequences of caring for a spouse with multiple sclerosis.J Clin Exp Neuropsychol1997;19,7-19. [CrossRef] [PubMed]
 
Weitzenkamp, DA, Gerhart, KA, Charlifue, SW, et al Spouses of spinal cord injury survivors: the added impact of caregiving.Arch Phys Med Rehabil1997;78,822-827. [CrossRef] [PubMed]
 
Kinney, JM, Stephens, MAP Hassles and uplifts of giving care to a family member with dementia.Psychol Aging1989;4,402-408. [CrossRef] [PubMed]
 
Kramer, BJ Gain in the caregiving experience: where are we? What next?Gerontologist1997;37,218-232. [CrossRef] [PubMed]
 
Medalie, JH The patient and family adjustment to chronic disease in the home.Disabil Rehabil1997;19,163-170. [CrossRef] [PubMed]
 

Figures

Tables

Table Graphic Jump Location
Table 1. Characteristics of Final Sample of Caregivers and Patients*
* 

Values given as mean ± SD or No. unless otherwise indicated. All of the patients were receiving long-term transtracheal oxygen therapy.

 

Mixed connective tissue/congenital myopathy.

Table Graphic Jump Location
Table 2. FSQ Factor and Subfactor Scores*
* 

NS = not significant.

 

Significance level of Pearson’s correlation.

Table Graphic Jump Location
Table 3. Variables Influencing the Caregivers’ Scores on Two Factors of the FSQ*
* 

Values given as mean ± SD, unless otherwise indicated.

 

Interaction.

References

Bertrand, A, Milane, J, Dufranc, P (1985) Traitement au long cours de l’insuffisance respiratoire chronique par ventilation endotrachéale à domicile chez 118 patients tracéotomisés.Rev Mal Respir2,91-95. [PubMed]
 
Dudeffant, P, Manier, G, Gbikpi-Benissan, G, et al Devenir des insuffisants respiratoires chroniques traités à domicile par trachéotomie et ventilation assistée.Rev Mal Respir1985;2,145-150. [PubMed]
 
Zaccaria, S, Zaccaria, E, Zanaboni, S, et al Home mechanical ventilation in kyphoscoliosis.Monaldi Arch Chest Dis1993;48,161-164. [PubMed]
 
Bach, JR A comparison of long-term ventilatory support alternatives from the perspective of the patient and caregiver.Chest1993;104,1702-1706. [CrossRef] [PubMed]
 
Lissoni, A Tracheostomy and mechanical ventilation in ventilatory failure of patients with neuromuscular disease.Monaldi Arch Chest Dis1995;3,232-234
 
Fisher, DA Long-term management of the ventilator-dependent patient: levels of disability and resocialization.Eur Respir J Suppl1989;7,651s-54s. [PubMed]
 
Covinsky, KE, Goldman, L, Cook, EF, et al The impact of serious illness on patients’ familiesJAMA1994;272,1839-1844. [CrossRef] [PubMed]
 
Rossi Ferrario, S, Bacchetta, M, Omarini, G, et al Il Family Strain Questionnaire: una proposta per il Caregiving assessmentPsicologia della Salute1998;2/3,119-127
 
Lazzari, R, Pancheri, PSTAI. Questionario di autovalutazione dell’ansia di stato e di tratto. 1980; Organizzazioni Speciali. Firenze, Italy:.
 
Bertolotti, G, Zotti, AM, Michielin, P, et al A computerized approach to cognitive behavioral assessment: an introduction to CBA-2.0 primary scalesJ Behav Ther Exp Psychiatry1990;21,21-27. [CrossRef] [PubMed]
 
Zarit, SH, Todd, PA, Zarit, JM Subjective burden of husbands and wives as caregivers: a longitudinal study.Gerontologist1986;26,260-266. [CrossRef] [PubMed]
 
Knight, RG, Devereux, RC, Godfrey, HPD Psychosocial consequences of caring for a spouse with multiple sclerosis.J Clin Exp Neuropsychol1997;19,7-19. [CrossRef] [PubMed]
 
Weitzenkamp, DA, Gerhart, KA, Charlifue, SW, et al Spouses of spinal cord injury survivors: the added impact of caregiving.Arch Phys Med Rehabil1997;78,822-827. [CrossRef] [PubMed]
 
Kinney, JM, Stephens, MAP Hassles and uplifts of giving care to a family member with dementia.Psychol Aging1989;4,402-408. [CrossRef] [PubMed]
 
Kramer, BJ Gain in the caregiving experience: where are we? What next?Gerontologist1997;37,218-232. [CrossRef] [PubMed]
 
Medalie, JH The patient and family adjustment to chronic disease in the home.Disabil Rehabil1997;19,163-170. [CrossRef] [PubMed]
 
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