the needs of families of infants discharged home with continuous oxygen therapy

clinical studies

The Needs of Families of Infants Discharged Home with Continuous Oxygen Therapy LORETTA Y. YOUNG, SRN, MSW, DIANNE E. CREIGHTON, PHD, AND REG S, SAUVE, MD

Forty-four parents of 48 infants who had been discharged home with continuous oxygen therapy described their experiences, needs, and resources in a semistructured interview. In addition, 20 professionals in contact with these infants were interviewed to determine their perceptions of discharge preparations, teaching, relief care, coordination of medical care, and expertise of community professionals regarding high-risk infants on oxygen. Both the professionals and parents reported a need for improved discharge teaching and community support services. Researchers concluded that individual needs must be considered in arranging supportive interventions, as needs vary across families, time, and geographic locations.

Newborns may require oxygen therapy for a variety of reasons, and some infants may continue to be oxygen-dependent for two years or more. Many infants re- quiring extended periods of supplemental oxygen have bronchopulmonary dysplasia, a chronic lung disease sometimes associated with mechanical ventilation of premature infants who suffered respiratory distress syndrome or other neonatal respiratory dis- o r d e r ~ . ' - ~ Less common reasons for long-term oxygen therapy in infants include primary apnea and cardiac problems. Children who are otherwise medically stable

Accepted: December 1987

May/June 1988 JOG"

may be discharged home while still on oxygen therapy, an option made possible by the availability of portable oxygen equipment, monitoring devices, and outpatient facilities4 The oxygen is generally administered from portable tanks through nasal cannulas, with portable liquid oxygen for those periods when the infant is outside the home (Figure 1). A reverse croupette may be used to maintain consistent oxygen concentrations during sleep.

Home-care oxygen therapy offers both economic and psycho- logic advantage^.^-^ Shortening the separation of family members from the newborn who has been critically ill may facilitate the pro- cess of forming emotional attach-

ment between the infant and family members. The naturalistic nur- turing and stimulation available at home is also preferable to hospital care for fostering cognitive and social development in the infant.

On the other hand, the experience of caring for an oxygen-dependent infant at home may have negative consequences for the family. Parents of infants receiving oxygen therapy at home may experience emotional stresses far in excess of those imposed by healthy newborns or by infants who have survived serious neonatal problems and their sequelae without the need for continued therapy.8 Family stresses have been identified as negatively associated with infant development

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igure 1. Mother with infant on home oxygen therapy.

and the quality of mother-infant a t t a ~ h m e n t . ~ * ' ~ F a m i l y variables also have been shown to predict the later intellectual development of premature infant^.^^"-'^ Social support, however, may have a moderating effect by helping these parents cope with ~ t r e ~ ~ . ~ * ~ ~ ~ ~ ~ ~ ~ ~ To date, the effects of stress and support on a group of high-risk infants

discharged home with oxygen therapy have not been explored.

METHODS ~~

This qualitative study assessed the needs of families of infants who were discharged home with oxygen as well as the perceptions of health professionals of the

needs of these families. For this study, needs are defined as practical, social, and emotional circum- stances that require courses of ac- tion.

Samples

The target group for the study included all infants discharged home with oxygen in Southern Al- berta, Canada, between 1977 and 1984. These infants were identified through the Perinatal Follow-Up Program at the Alberta Children's Hospital, a multidisciplinary, follow-up program that monitors the long-term progress of premature and other high-risk infants.

Home-care oxygen therapy offers many advantages for I both infants and parents.

Of 65 target families, 21 were excluded from this study due to the following reasons: death of the infant ( N = lo), infants lost to follow-up (N = 8), and noncom- pliance of the family ( N = 3). Forty-four families with 48 target infants participated (four families had two children home with oxygen). Most of the parents were Caucasian (N = 40) and married or in a stable common-law union at the time of the infant's discharge from the hospital (N = 42). Mean maternal age was 25.4 years (SD = 4.7) and mean maternal education was 11.8 years (SD = 2.8). For 18 parents, the target infant was a first-born child. At the time of the interview, mean age of the infants was 20.9 months, adjusted for pre- maturity (SD = 5.9).

Twenty health professionals who previously had contact with three or more infants home with oxygen also were interviewed. These professionals represented a variety of disciplines including nurses (N = 8), respiratory thera- pists (N = 6), and physicians (N

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= 3), as well as a physiotherapist (N = l), dietitian (N = l), and day homes coordinator (N = 1). A day homes coordinator administers a program of day care through which children are placed in ap- proved and regulated homes rather than larger centers.

Procedure

Semistructured interviews were developed to elicit information regarding the practical and social/ emotional needs of families. Inter- views addressed four main areas of need: 1) the nature and quality of information given before and after discharge from the hospital, 2) parental concerns, 3) parents’ social/emotional experiences, and 4) practical and emotional resources used.

Interviews were conducted by one of the authors and lasted ap- proximately 90 minutes. Forty-two mothers and two fathers were involved. The sessions took place either at the family’s home, in the hospital, or by telephone. Inter- views with the professionals took place within the hospital setting.

RESULTS

Parents’ Perceptions

The adequacy of information provided to parents was explored. Most parents appeared to under- stand their infants’ needs for oxygen in terms of the infants’ lung problems (N = 39). However, parents did not appear to have a complete understanding of the impact on other body systems. Only one mother mentioned the importance of the oxygen to a t least three of the following systems: lungs, heart, brain, and growth. Thirty-five parents mentioned fewer than two of these systems.

Parents would have preferred to have been informed at discharge

about how long supplemental oxygen would be necessary. Medical professionals, however, may not be able to provide estimates in individual cases. The study sample required oxygen for one year on average (2 = 11.3 months), but this estimate is low, because some infants were still on oxygen at the time of the interview. Also, the high variability for duration of oxygen administration (SD = 5.9 months) demonstrates the diffi- culty in predicting the duration of oxygen therapy for individual infants, at least on the basis of these data.

Most parents felt adequately prepared by hospital staff for having their infants home with oxygen (N = 35). These parents felt they could cope with the equipment but felt less prepared to handle emergency situations with their infants. Cardiopulmonary resuscitation teaching was generally felt to be helpful, although 12 parents noted that this instruction was rushed or absent. Such concerns generally were voiced by rural families with difficult access to emergency treatment.

Parents’ most serious concerns at the time of infant discharge were the infants’ health and weight gain and the mobility of the oxygen equipment (Table 1). One parent said, “I was scared s h e might get a cold or high tempera- ture. She would then be cranky, causing extra stress on her heart.” Another asked, “What if something happened to the tube or the tank during the night and reduced the oxygen supply?” Another mother, who had become dependent upon the hospital monitoring systems, expressed her uncer- tainty by saying, “Unlike the hospital, we have no blood gases, only color to judge on.” In addition, some parents expressed the fear of sudden infant death syndrome.

At the time of discharge, some parents thought that mobility of

Table 1. Parental Concerns (N = 44)’

Number of Parents

Infant health Infant weight gain Mobility of oxygen Parenting skills In-home relief Interaction with infant Relatives Work involved Level of stress Siblings Infant’s temperament Infant’s appearance

35 15 74 7 6 5 5 5 4 4 4 1 -

Some parents reported more than one concern.

the oxygen equipment would be a problem (N = 14), but later, these parents found that they experienced few restrictions when using the portable oxygen cylinders. When asked about the discharge period, few parents related signifi- cant concerns about in-home relief, their parenting skills, or the possible effect of the infant’s special needs on nuclear family members, relatives, and friends.

Parents were requested to identify practical and emotional resources available at and after discharge. Many preparations for their infants’ homecomings were necessary, but eleven mothers reported that no one helped them with these tasks. Special preparations included obtaining and setting up the oxygen equipment and payments: preparing a separate, clean, well-ventilated room for the infant; learning about physiotherapy, medications, and how to monitor oxygen levels; and arranging for special relief care. Early parental concerns about the oxygen equipment decreased after in-home instruction by the community respiratory technologist.

Parents also identified deficiencies in the practical and emotional resources provided by professionals. Regular medical monitor-

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Table 2. Satisfaction with Personal Supports

Number of Parents

Very Somewhat Somewhat Very No Source Satisfied Satisfied Dissatisfied Dissatisfied ResDonse

Spouse 34 3 4 3 0 Family 28 11 3 1 1 Friends 20 15 8 1 0 Community 17 11 10 5 1 Other 14 3 1 0 26

ing by outpatient teams was adequate according to the majority of parents (N = 42). Duplication of services, delay in initial contacts, and nonsupportive staff were some of the shortcomings in medical follow-up noted by some parents (N = 15). Within the community, parents particularly valued the availability and support of the respiratory technologists. Parents were disappointed with community health nurses’ lack of knowl- edge about the oxygen equipment and about the development implications of long-term oxygen administration. Twenty parents reported that they believed that community resources for families of infants home with oxygen were inadequate.

Qualified baby-sitting services in the home were noted to be a desirable community resource. Many parents admitted that they had denied the need for such relief at the time of discharge but added that later requests for funding for caregiving support services were delayed substantially. Funding for baby-sitting and homemaking services was available during the period under study through the Handicapped Children’s Services of the Alberta government. Locat- ing personnel to provide either service was the responsibility of the parent. Some parents who lived in small towns or in rural areas, found locating personnel for relief extremely difficult. One mother echoed the concerns of

such parents: “No one wanted to care for her. They were scared and did not want to be held responsi- ble if something should happen.” Many parents advocated the availability of a pool of trained baby- sitters that offer less costly services than the services provided by trained homemakers.

Parents expressed different opinions on the need for support from other families with similar experiences. Eighteen of the 23 urban families would have preferred practical support, such as baby-sitting services but fewer wanted parent-to-parent (N = 10) or parent group (N = 11) support. All 6 participants who lived in smaller towns would have been in- terested in having a support group at the time of their infants’ discharge, while 12 of the 15 parents who lived in more isolated rural areas, would have preferred individual parent-to-parent contact.

Among the available sources of personal (social/emotional) support, the majority of parents re- garded spousal support as the most helpful (Table 2). Addition- ally, more than half the sample was satisfied with the support provided by extended family members. Parents said that support was provided by people “just being there” (N = 30), “listening” (N = 27), “helping” (N = 13), and “baby-sitting” (N = 12).

Parents were asked to review their emotional experiences during the time their infants were on

oxygen. The parents recalled mixed emotions when they first brought their infants home, using such phrases to describe the experiences as “calmly anxious” or “excited and apprehensive.” A few parents described strong feelings such as “scared to death” or ”relief not to be torn apart as a family.” When asked to rate their anxiety levels, few parents reported feeling “extremely anxious” (N = 5), and most parents were “somewhat anxious” (N = 21) or “very anxious” (N = 11). Seven of these parents reported that they were “not anxious.”

Intrapersonal changes (feelings about self), interpersonal changes (relationship between self and others), and changes in attitude to parenting also were explored. Most parents reported that intrapersonal changes were positive, including increased self-confidence, emotional strength, and competence (N = 32). Negative personal changes such as depres- sion, a sense of inadequacy, and loneliness were reported by the others (N = 10). In contrast, interpersonal effects tended to be pre- dominantly negative, with 30 parents indicating a loss of friends, less time for friends, and changing lifestyles. Social changes that were positive included a greater sense of closeness to a spouse or friend. Participants’ attitudes toward parenting tended not to be affected by the experience with this infant (N = 19), but some parents reported positive changes in attitudes such as increased appreciation that children are precious and im- provement in parenting skills (N = 17). Those parents experiencing negative changes in their attitudes toward parenting reported that they became possessive, resented a lack of free time, or had decided not to have any more children (N = 8).

Asked whether this experience had affected other family mem-

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bers, nine parents reported no effect. Some parents indicated that their spouses were affected (N =23). Some reported that extended family members experienced effects (N = 22), but fewer parents felt that siblings were affected (N = 12). Interestingly, 23 parents reported feeling that, overall, family relationships were enhanced through the experience; this was especially true for those parents whose infants needed oxygen for less than one year.

Professionals’ Perceptions

All 20 health professionals identified deficiencies in the amount, availability, and/or nature of information given to parents both at the time of discharge and during the outpatient management period. The majority stressed that families needed more information regarding services following discharge, the special nutritional needs of these infants, the impact on personal and family life of caring for an infant discharged home with oxygen, and the approximate period of oxygen administration. Recommen- dations were proposed that more time be spent on discharge teaching and planning.

Only 7 of the 20 health professionals felt that both medical and community support were adequate. All professionals recommended improving coordination of services between the hospital and community. Such services include chest physiotherapy, monitoring the oxygen levels, monitoring drug therapy, dietary counseling, and emergency care. Addi- tional services for the family may include social work counseling, arranging in-home care relief, and assisting with alternative plans of care.

Professionals also emphasized the need for additional training

regarding the developmental needs of infants home with oxygen. Expertise has improved in general, but the need for in-service training of community-based, health-care providers was reported by all 20 professionals to be of some urgency.

Relief services were deemed important by all the professionals. These practitioners reported that many parents do not initially make use of relief services but stressed that the availability of such services should continue. The professionals recommended easier access to public funds for assistance in the payment of baby-sitting relief and related costs. Like parents, the professionals also reported a shortage of trained personnel who are comfortable in assuming care of an infant with continuous oxygen. In addition, the need for supportive group and/or parent-to-parent contact was supported by more than half of the professionals interviewed.

Overall, professionals indicated that caring for an infant on home oxygen therapy was undoubtedly an emotionally and physically stressful undertaking for parents. Community-based professionals, in particular, reported that spousal support was minimal in many families. The need for greater involvement of fathers in the routine care and medical follow-up of their infants was indicated. The professionals suggested that greater involvement could lead to increased confidence in fathers regarding their abilities to care for their infants.

Most parents found that they were restricted from social activities while their infants received home oxygen therapy. As a result, some professionals suggested that a recreation therapist advise parents about meeting their own social/emotional needs through lei- sure activities.

DISCUSSION

The semistructured, interview method was selected to obtain a wide range of data on issues rele- vant to the needs of parents of infants discharged home on oxygen. The perceptions of parents and professionals were the focus of in- terest. All parents identified concerns about caring for an infant home on oxygen, but the concerns parents recalled from the time of discharge differed from later concerns. At the time of the infant’s discharge from the hospital, parents expected not to want relief care; but over the course of time, relief care became an area of need for almost all parents. Profes- sionals stressed continued monitoring of parents’ changing needs.

Parental needs for social I and emotional support vary.

At discharge, parents tended to be concerned about the mobility of the oxygen equipment at home and on outings. However, as parents learned to manage the equipment, this issue seemed to re- solve. Parents were comfortable with the medical equipment, but the responsibility of resuscitating an infant in distress was a common worry, and parents were grateful for their training in cardiopulmonary resuscitation. How- ever, several parents reported that this training was not adequate. Rural families, especially, were concerned about the need to im- prove discharge preparation, as access to emergency services is more difficult for these families.

Both parents and professionals expressed the need for improved coordination between community resources and the larger, regional care center. Additionally, both groups identified gaps in the

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training of community-health professionals.

The type of social/emotional support sought was related to geographic location. Rural families preferred one-to-one support from another parent or family. In smaller urban centers, parents preferred group support. Perhaps because a parent support group al- ready existed in the urban center, parents in the city emphasized the need for other types of support such as a baby-sitting service. Par- ents and professionals alike gave high priority to spousal support. However, some mothers appeared to be facing the stresses of parenting alone. As a result, professionals assisting in the establishment of support services need to be aware of differing needs.

Generally, parents did not describe excessive anxiety at the time of discharge. Most parents were satisfied with family support, and many were able to identify positive family changes while family members coped with the experience of having an infant home on oxygen. Social lives were com- promised, but close friendships became closer. Mothers also reported that they developed increased self-confidence and emotional strength and became better parents. Those few parents who did not cope well with this experience were most in need of supportive intervention.

Limitations

Results must be interpreted with consideration of the study’s limitations. These limitations include the following:

0 The semistructured format of the interview tools may have offset potential effects of different interview methods (telephone versus in-person interviews), which were not analyzed because of small numbers.

0 Reliability and validity of the in-

terview tools were not evalu- ated.

0 Social desirability may have biased responses, but com- ments critical of current health- care practices were still given.

0 Part of the interview relied on recall by parents of concerns perceived at an earlier date (the time of the infant’s discharge).

Recommendations

A future study could use a pro- spective method to monitor changes in parents’ perceptions over time. Additionally, study of a similar age cohort would reduce the effect of changing medical technologies as experienced by this sample of infants over a wide span of time.

NURSING IMPLICATIONS

In the past, many oxygen-dependent infants have spent pro- longed periods in hospitals. In- creasingly, health-care professionals have believed that the home is the most appropriate en- vironment for the infant despite ongoing needs for supplemental oxygen. However, individual and family stresses resulting from caring for an infant on oxygen in the home may create a negative envi- ronment. Parents need preparation and support to make the experience positive for their infants and themselves.

The quality of discharge preparation is important. Adequate cardiopulmonary resuscitation teaching, particularly for families with limited access to emergency services, could serve to alleviate anxiety at the time of discharge. Discharge teaching on infant health, nutrition, growth, and development should begin well before discharge. In addition, information sent home in written form could anticipate changing needs such as the need for community

Technological advances imply the need for ongoing in-service education for nurses.

resources and support services. After discharge, well-informed, community-based nurses can make information available to parents on an ongoing basis. Coordination between community resources and the hospital is crucial to quality service delivery. Nurses should also remember that offering indi- vidually tailored service to different families is important when preparing the infants and parents for discharge and in offering follow-up care.

Nurses need to continually up- date professional expertise because of the many technological advances associated with the care of high-risk infants. In-service education for nurses regarding the health, nutrition, and development of infants receiving oxygen is indicated. Also, nurses who assist in the establishment of support services need to be aware of differing needs. Families may require individual, group, or parent-to- parent contact and support. Also, ways of fostering the involvement of an unsupportive spouse may need to be developed. Nurses caring for these families need to be able to identify the individuals who feel trapped, lonely, and isolated by the experience of having an infant home on oxygen therapy.

Additionally, nurses can facilitate the organization of a pool of trained baby-sitters to provide relief care. Help in accessing funds and locating and training appropriate personnel for relief may become necessary.

CONCLUSIONS

This qualitative study examined a group of 44 parents and 20 pro-

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fessionals reporting on the experiences of families while caring for their infants on continuous oxygen therapy at home. Parents indicated a need for improved access to information about the care and development of their infants, both in preparation for and after discharge from the hospital. Parental needs varied a n d included t h e need for social/emotional support and for qualified baby-sitting services.

ACKNOWLEDGMENTS

Funds were provided for this project through the Department of Pe- diatrics, University of Calgary in Al- berta, Canada. The assistance provided by Heather Christianson in data handling is gratefully acknowledged.

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3. Sauve, R.S., and N. Singhal. 1985. Long-term morbidity of infants with bronchopulmonary dysplasia. Pediatrics 76:725-33.

4. Koops, B.L., S.H. Abman, and R.J. Accurso. 1984. Outpatient management and follow-up of bronchopulmonary dysplasia. Clin. Perinatol. 11:lOl-22.

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Low flow oxygen therapy in infants. Arch. Dis. Child. 58:795-98.

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8. Abman, S., F. Accurso, and B. Koops. 1984. Experience with oxygen in the management of infants with bronchopulmonary dysplasia. Clin. Pediatr. (Phila) 23:471-76.

9. Bee, H.L., K.E. Barnard, S.J. Eyres, et al. 1982. Prediction of IQ and language ski l l from perinatal status, child performance, family characteristics, and mother-infant interaction. Child Dev.

10. Crockenberg, S.B. 1981. Infant irri- tability, mother responsiveness, and social support influences on the security of infant-mother at- tachment. Child Dev. 52:857-65.

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12. Drillien, C.M. 1964. Thegrowth and development o f the prematurely born infant. Edinburgh: Living- stone.

13. Escalona, S.K. 1982. Babies at dou- ble hazard: Early development of infants at biologic and social risk. Pediatrics 70:670-76.

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6~294-304.

Address for correspondence: Loretta Young, SRN, MSW, Department of So- cial Work, Alberta Children’s Hospital, 1820 Richmond Road, S.W., Calgary, Alberta, Canada T2T 5C7.

Loretta Young is a social worker at the Peri- natal Follow-Up Clinic at Alberta Children’s Hospital, in Calgary, Alberta, Canada. Ms. Young is a member of the Association of Perinatal Social Workers and the American Academy of Pediatrics.

Dianne Creighton is senior psychologist at the Alberta Children’s Hospital Department of Psychology in Calgary, Alberta, Canada. Dr. Creighton is a member of the Psycholo- gists’ Association of Alberta, the Society for Research in Child Development, and the American Academy of Pediatrics.

Reg S. Sauve is an associate professor of pediatrics and community health in the Fac- ulty of Medicine, University of Calgary, and director of the Perinatal Follow-up Program at Alberta Children’s Hospital in Calgary, Al- berta, Canada. Dr. Sauve is a member of the Canadian Pediatrics Societv and the Ameri-

and S.’ Tetzchner. 1982. A longitu- can Academy of Pediatrics..

ATTENTION CHILDBIRTH EDUCATORS

The International Childbirth Education Association (ICEA) will hold a Basic Teacher Education Workshop in Des Moines, Iowa, August 5-7,1988. The workshop is directed to those who wish to become childbirth educators or perinatal instructors, nurses of all educational backgrounds, and other health-care providers who work with childbearing families. The registration fee for the three- day conference is $1 70 for ICEA members and $1 90 for nonmembers. A $20 discount is available for anyone who registers before July 5. In addition, three full scholarships are available to those who teach outreach clients. Scholarships will be awarded on a firstcome, first-served basis. For more information, contact ICEA, P.O. Box 20048, Minneapolis, MN 55240-0048; or call (612) 854-8660.

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the needs of families of infants discharged home with continuous oxygen therapy

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