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Rural families as resources for family members who are mentally ill: A call for nursing involvement
Rural Families As Resources for Family Members Who Are Mentally I11: A Call for Nursing Involvement Anthony Paul O'Brien The concept of R o o m i n g In, developed by country psychiatrist Mike Richardson, is presented as an exemplar of an innovative mental health family nursing concept and provides a context for the further evaluation of the nurse's role in family care. Rooming In involves the 24-hour voluntary care of a mentally ill person by a c l o s e friend or relative on the general hospital ward. This article d e s c r i b e s a descriptive, qualitative pilot research project conducted in a rural general hospital in New South Wales, Australia. Six family members, their mentally ill relatives, friends, and registered nursing staff were interviewed for the study. Data are presented as categories derived from the analysis of interview transcripts. Copyright © 1998 by W.B. Saunders Company
HE RURAL COASTAL town of Taree in New South Wales, where this pilot study of families in the Rooming In program was conducted, has a population of approximately 25,000 and a District Base General Hospital consisting of 140 beds. There is no psychiatric hospital in the district. The nearest one is located over 170 kilometres away. Rooming In involves the voluntary care of a mentally ill person by a close friend or relative who maintains a 24-hour vigil on the general hospital ward (Richardson, 1996). The Rooming In program, developed by country psychiatrist Mike Richardson, has enabled many mentally ill people to reside close to family and friends when they would previously have been transported by ambulance or with the police to a psychiatric hospital some considerable distance away. However, the Rooming In program raises many issues about the nurse's role in the care of patients and their family in the rural context. This article describes the family experience of caring for a mentally ill family member in a general hospital. Australia is a huge, arid country of 7,682,300 km 2 with a population of over 26 million projected for the year 2050. In the 1996 census there were 18,312,000 people living in Australia, most of them living in the 10 major cities and condensed into the southeastern corner; (Australian Embassy, 1997)
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only 15% of the people in Australia live in rural areas. Aboriginal and Torres Strait Islanders, make up 1-1/2% of all Australians, and about 60% of these people live in the cities and towns. Many of the other Aboriginal people live in rural and remote areas. (Australian Embassy, 1997). The majority of all families are of the type described by the Australian Bureau of Statistics as "couples with dependent children." However, a significant proportion (7.8%) of all families are one-parent families with dependent children (Australian Bureau of Statistics, 1994-1996). RURAL AREAS AND MENTAL ILLNESS
Recently, rural areas in Australia have received considerable national scrutiny in the context of the increasing suicide rate of young people. This attention has provided some indication of the need for mental health services in rural areas. The 1994
From the School of Health Sciences-Nursing and Midwifery, Palmerston North, New Zealand. Address reprint requests to Anthony Paul O'Brien, RPN, RGN, BA, med stud., School of Health SciencesNursing and Midwifery, Palmerston North, New Zealand. Private bag 11222. Copyright © 1998 by W.B. Saunders Company 0883-9417/98/1204-000653.00/0
Archives of Psychiatric Nursing, Vol. XII,No. 4 (August), 1998: pp 219-226
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New South Wales Report on Rural Suicide raised the following issues about mental illness: 1. There is a higher incidence of mental health problems in rural areas. 2. In rural areas mental illness is not readily identified and treated because there are fewer support services available. 3. There is greater denial about mental illness in rural communities, especially by men. 4. Rural people are less likely to approach services for referral and treatment because of a fear about confidentiality issues (Standing Committee on Social Issues, Report #7, 1994, pp.52-97). The deinstitutionalization movement, in full swing since the 1980s and triggered in Australia by the 1983 Richmond Report, has had a significant impact on the community. Particularly, an increasing number of people who are mentally ill and living in the community has placed an enlarging burden on the family unit and the entire community. Whereas this burden is one that demands a collective social response of caring and consideration, much of the responsibility for the caring has remained with the primary family unit. The deinstitutionalization approach has been characterized by early identification and assessment of people at risk of developing mental illness. Community and outpatient treatment, and early discharge after inpatient care together with community-based rehabilitation have been features of the deinstitutionalization process (Australian Health Ministers Advisory Council, 1989). Service provision for the mentally ill has mirrored this approach as witnessed by the proliferation of centers for rehabilitation and supervised and unsupervised group homes for persons with mental illnesses living in the community. Unfortunately, much of the availability of services is focused within the densely populated urban areas. Deinstitutionalization has provided many people who are mentally ill the same opportunities as so-called normal people in the community and has enabled them to feel as if they are once again valued members of society. However, service provision has not always matched the needs of the mentally ill person residing in the community. The literature related to nursing, the family, and the person with a mental illness within the family is small, and there is a paucity of published research
ANTHONY PAUL O'BRIEN
that focuses specifically on the rural situation. From a nursing perspective, this is particularly disconcerting when, in rural areas, the family is often the first to come to the aid of people who are mentally ill. Problems faced by people living in rural areas include a lack of resources available to people living with a mental illness, distance, and the likelihood that one who is mentally ill and in need of acute care will be transferred out of town. For instance, just getting in and out of the town can be difficult when there is only one bus a day or where there are no trains or taxi services. Of the literature available on family nursing, there is little addressing the use of family nursing in the care of the person with mental illness, especially in rural health services. The following authors were recognized as having contributed to clarifying issues related to a family nursing treatment focus, issues which, if addressed, could be seen as a basis for the rationale for establishing a Rooming In program: 1. The therapeutic importance of family nursing is not being realized in clinical practice (Saunders, 1997; Conlon, 1995; Yonge, 1989; Hughes, Joyce, & Staley, 1987). 2. There is an overemphasis on the dysfunctional family instead of the functioning family trying to cope with the adversity of mental illness (Axelrod, Geismar, & Ross, 1994; Veerman, 1994; Moriarty, 1990). 3. The definition of family nursing by nursing theorists is relatively unrefined (Whall, 1981; Friedmann, 1989). 4. The consumer view of what constitutes mental illness and the burden on family members trying to cope with mental illness has not been well articulated (Scheick, 1995; McShane, 1991, Davies, 1995; Grandine, 1995; Gerace, Camilleri, & Ayres, 1993; Jones, 1992; Barrowclough & Tarrier, 1987). 5. The issue of subjective and objective family burden and the impact on family functioning is well documented from a research perspective (Reinhard, 1994; Provencher, 1996; Thompson & Doll, 1982; Medland, 1994; Loukissa, 1995; Hill, 1995). 6. Family configuration has changed in recent decades and is now connected to different groups and individuals. These new connections include blended families, single parent
FAMILIES LIVING WITH MENTAL ILLNESS
families, same sex families, close friends, and lovers (Birley & Hudson, 1983; Bott, 1971). Richardson's Rooming In Program is one means of opening up new ground for family nursing by mental health and general nurses. This program enables the family to be involved in the process of care from the outset of treatment intervention. The program also acknowledges other care givers, such as lovers and friends.
PARTICIPANTS AND METHOD
The qualitative research method of in-depth interviewing (Minichiello, Aroni, Timewell, & Alexander, 1995) was used to gather information for the study. The research proposal and consent and information sheets were written and submitted to the Area Health Service Ethics Committee for consideration. Only minor changes to the information sheet and consent form were required in the context of simplifying the language. Participants were selected in consultation with the psychiatrist, who, when someone was being roomed in, would ask the family and the mentally ill patient if they would be interested in being interviewed. Families who agreed were then approached by the researcher who explained the research and left them with an information/consent form. The following day, or later on in the same day, the family member who was rooming in with the patient was approached to sign the consent to interview. Patients also provided their signed consent. Six patients were admitted to the general hospital ward over a 4-month period. The participants observed and interviewed in this study included all six patients, their relatives and friends who accompanied them to hospital, and three registered general nursing staff members. On two occasions, the entire family was involved in interviews. There were several hours of participant observation conducted, which involved the researcher sitting in on consultation interviews, sitting in the single bed hospital room, being present during nursing reports, and sitting in the corridor of the ward where patients were being roomed in. Questions asked of participants and patients were open-ended and generally followed the circumstances of (the patients') admission and what it was like, in the hospital and at home, (for family and friends) to care for someone who was mentally ill.
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Issues were followed up if they were felt to be of relevance to emerging themes. Data were analyzed in a constant, comparative mode through an open, axial, and selective coding process to improve the density and structural intensity of the categories (Strauss, 1987). An example of coding is provided below to clarify the process of data analysis. In one interview, the family member rooming in with the patient was asked a question about her family: What about her six children? The family member replied: So she worked. They lived with some family member somewhere, but it was oh, Ma and Pa, for a while. There are lots of stories in there that I can't remember, but Joan, also when she was younger was kicked out of school at 12 because something happened to her mother and she had to raise her sisters and brothers and they are all doing well now, like they're doctors.
This comment was open coded, history of mother doing it all. The code was then combined with other open codes of similar conceptual meaning to form the axial category of Lack of social system support. After subsequent interviews and comparison of open and axial codes, the major category of Caring Responsibilities was formed. CATEGORIES
Surviving Hospitalization: The Family When a person with mental illness is roomed in, their accompanying friend or relative is compelled to make a commitment to support the person for the duration of the admission. If the Rooming In caregiver has no family or other available social supports in the area, then the isolation experienced when providing care can be considerably increased. In some situations family members providing care in Rooming In may have to travel long distances, particularly when one relative lives away from the original family unit and someone from the family is in need of support. In this context the caregiver can be withdrawn from his or her own familiar social network to care for the person with mental illness who has been admitted to hospital. I think what happens in a situation like this that people in a family, it's like "I can't do it a g a i n . . . I have just done it." Like her family in Sydney have had turns recently because of the broken leg. I had no family member with me when all this was going on 'cause I was at home by myself and I know they didn't want her to go to the regional psychiatric hospital.., and well, there wasn't any time to be organizing who was going to come, so I was the most available at the time.
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When Rooming In, the person who is familiar with the patient has the advantage of knowing the patient's behavioral patterns, needs, moods, values, and beliefs, and attitudes toward self and others. This process of knowing the patient facilitates nursing care in the hospital. Caregivers can anticipate the need for nursing or medical intervention because they know the patient and can directly communicate with hospital staff. They are then better able to survive the hospital situation. Those Rooming In caregivers who do not tolerate the long hours involved in such an experience are relieved by nursing staff or other relatives. However, if this becomes an organizational problem and the patient's behavior deteriorates, the patient is transferred to the regional psychiatric hospital. Rooming In really requires committed people. If there has been a sudden decision to accompany a family member to a hospital for admission and the caregiver is not a close family member, then he or she quickly adjust to an alteration in lifestyle suiting the condition of the hospitalization experience--the culture of the hospital as opposed to the culture of the family. Caregiver: It's sudden; you don't get time to prepare. I thought I was coming here for 24 hours to begin with, then they explained it is 24-hour care.
The responsibility for care during hospitalization falls largely on the person who accompanies the patient. This caring experience within the general hospital is seen to be a positive experience. Surviving the hospital experience can be made easier for the patient and the family when they are together in a time of crisis. Being together as a family in a hospital means the nurse must work with the family as opposed to interacting solely with the patient. This process changes the nature of the nursing interaction. However, this new interaction, one with the family and the mentally ill person, can present nurses with different challenges, particularly if they are not yet comfortable with nursing people who are mentally ill. Nurses are faced with negotiating a different relationship in the hospital, that of the patient together with their friend or relative(s) residing in hospital. Caregiver: Well, I think it is better for them here because of the distance they'd have to go. I think it's kind of a
solution for them, and most of the ones that we have had. I think there has only been one that we have had any problem with, they have all been, um, it's benefited all around because we, it's easier on us in one way that the family is with them so we're not tied up with those patients, but also I think to have someone you know who is close with you all the time makes them calmer, and it's easier to treat them. They are more secure, and I think it is good for the family too, because they know what is going on with the patient and they also don't have to travel. Caregiver: I kind of feel relieved sometimes when she goes to sleep. I can actually leave the room. They're not coming in; it was like they weren't real sure how. What I noticed is, they don't seem sure how to approach me, the staff; they also didn't know how to approach Joan, and I remember it was, it must have been Saturday afternoon. Joan was still sort of aggressive, and she stood up and shook her finger, and the nurse actually went back, and I said, "It's OK; she is not going to hurt you, you know," and Joan was aware to be afraid of her was just really a waste of time.
Being in the hospital with the patient for long periods of time was exhausting for this participant. She had become very tired from the need to be in constant company of the client. The perceived reluctance of general nursing staff to enter into the zone of the patient who was being roomed in added to the participant's concern that the nursing staff did not appear to know what they were doing for a person who had been admitted for mental illness.
Caring Responsibilities Family members Rooming In have identifiable caring responsibilities for their family member or friend. Some of these involve assisting and encouraging the patient to adhere to prescribed medical treatment and parameters of care; supervision of fluid and food intake; helping with showering and other hygiene issues; safety observations outlined by nurses managing the care environment; and most importantly, being a friend in time of crisis. The family member who is better able to assist the nurses in the care of the family member or close friend is one who, with some explanation, is clearly able to comprehend the treatment process; who is familiar with the patient's patterns of behavior, beliefs, and values; and who has been adequately oriented toward routines and functions. Caregiver: Um, maybe just in understanding, well, I think if someone has had a good background mad schooling, I think they are able to take in what the doctor is saying, naturally more, um, they understand and you can get through it more quickly with them.
FAMILIES LIVING WITH MENTAL ILLNESS
Part of the caring responsibility for families in this study was related to the care receiver or friend being medicated and to learning what actions and side effects the medications produce. It is conceivable that the longer one cares for someone who is prescribed antipsychotic or antidepressant medication and the more that the caregiver has to do with administering and monitoring of the effects of the drugs, the more they learn about the therapeutics and side effects of the drug. As one participant explained when talking about his partner's medication regime, Caregiver: Yeah, um, I know the signs and symptoms very, very good, and I know what medications to give her and I know when it's time to call for medical help. The unconditional commitment of love and time that a caregiver has for the care receiver can mean longer periods out of hospital for the person with mental illness. Family support in a rural area for these participants meant getting as much knowledge from nurses and doctors about what services and help were available to assist in the management of their mentally ill friend or relative. However, in the absence of knowledge about the availability of support mechanisms, which in a country area are limited, one family caregiver stated, Caregiver: Country people support each other, they all close in on the family and come in and help. You put your own life on hold. It can go and jump while you are closing onto the one that needs the help, that's what country people do. Not like in the city; you are a lost soul.
Impact on Family Life Learning to live with the illness for the participants in this study meant having to consciously accept that their family member was mentally ill. In the words of one informant, "life is all out of whack." In one case, the caregiver had been able to monitor medication changes during an exacerbation of his partner's depressive illness. However, when the illness and its constant care became exhaustive, he succumbed to having his partner admitted to the Rooming In Program. This admission to hospital enabled the psychiatrist to stabilize his partner's medication. Having to provide a round-the-clock surveillance for acute episodes of mental illness drains the emotional
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reserves of the family unit. One patient explains the impact on and concern about family life: Care receiver: I felt my mind kept going, racing, and I thought, What's the point in being here when you can't help yourself? And, urn, I knew I had a lot to live for, but then that didn't, there was no help in thinking that way, because I couldn't think that way. I couldn't think clearly and I mean, urn, I mean, I worried about my husband, how he was going to cope. I was worried about my parents. I mean, my parents had to look after my children. I worried about my children, and I mean Sky (daughter). I haven't really bonded with her because in a way I feel like I blame her, because if I didn't have her, I wouldn't be in this predicament. And that's how I felt, you know, I felt really down and that, I thought I should have stayed with two children. That's how it got. I mean, I do love her, but I'm not bonding. Being able to stay in touch with her family was integral to this patient's recovery. However, she was anxious about their health and safety, and this factor affected her ability to take time out from being a fully functioning family member. Time out from family responsibilities was an essential component of the recovery process, and being in hospital separate from home and family responsibilities enabled this to occur. DISCUSSION
It is possible to make a few simple recommendations for nursing care of the family based on what participants have had to say in this study. If the family is involved in the care of the family member in a hospital, then nurses should 1. Provide comfortable accommodation and services for family members and friends caring for the person in hospital 2. Involve the family in all consultations and care decisions from the outset of the admission to hospital, including discharge 3. Not just drop in on family and friends in an " A r e you O K ? " capacity! Nurses should take a proactive role to ensure that family needs are being met and that the caregiver is not burning out 4. W h e n mental status improves, involve the patient in all family meetings 5. Value what the family member has to say about patient behavior, because he or she is often the most reliable source of information 6. Followup the family after discharge with assertive community care
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This small pilot study has shed important light on the issues involved in general hospital admission for mental illness, particularly in the context of the Rooming In Program and especially from the perspective of the relatives, friends, and patients involved in the program. The threat of having to travel to the regional psychiatric hospital, the dislocation from family and familiar surroundings, being alone without extended family support, and having children cared for by others when in the hospital were all important factors related to this rural hospitalization experience. Knowing how to reduce family stress during hospitalization is critical if the family is to provide the constant company that Rooming In requires. This is a key role for nurses working in the general hospital environment. Family and friends providing care for the person during the admission supported the patient in taking prescribed medications, kept them company, comforted them as only family and friends can, and monitored the patient's behavior. They also assisted in keeping the patient compliant with the treatment regimen set out by medical staff. Because they are in the constant company of the patient during hospitalization and have the added value of previous experience in the management of unpredictable or impulsive behavior at home, family and friends facilitated a constant dialogue between family, nursing, and medical staff. The company they provided in the hospital reduced the impact of being hospitalized for a mental illness on the patient and brought other family and friends closer to the treatment encounter. Assessment information regarding compliance with treatment, mental status, behavioral problems associated with the disorder and manifested in the clinical presentation during hospitalization are critical factors in the care and treatment of the patient when in the hospital. Furthermore, preillness comparisons, which can be made more accurately by family and friends than nursing and medical staff, are also of paramount importance during the clinical process. Rooming In facilitated these comparisons. One suggested clinical approach for nurses working in this type of rural caring situation in a general hospital is to incorporate a systems approach to family therapy: This would need to be included in the education of general nurses who are involved in the caring of the patient. The nurse who is familiar
ANTHONY PAUL O'BRIEN
with the concept of families operating through systemic transactional patterns may develop an awareness of the problems inherent in some families. Minuchin (1974) suggests, that we can then begin to understand the transactional patterns underpinning the whole family system. In some families, these interactional patterns could be detrimental to the healing of the patient because of the family investment in maintaining the status quo. In others, the dysfunctional pattems may be maintaining the illness behavior. Knowing something about family dynamics and the nature of family interactional patterns could assist the nursing process. A nurse who is unaware of family dynamics and behavior patterns at the time of admission to the hospital ward may be inadvertently caught up in the family process, particularly if he or she has not been trained to be sensitive to certain potential family areas of conflict. Change in family systems, as Crago (1996) suggests, requires patience (change takes time to take root), flexibility (the ability to step out of the predictable role and do something different), and a faith in the potential goodness and creativity of the system within which one is operating. The commitment of care on the part of family is significant during the acute phase of the relative's mental illness, and long-term care presents a challenge of different proportions to the family because of its ongoing nature. Family and friends supporting a mentally ill person during Rooming In, are subject to additional stress, and should, therefore, be assessed regularly for their continued ability to provide the care required in a Rooming In situation, especially when they may have had a stressful and tiring encounter before hospitalization. The emotional strength and resources of family and friends have a direct impact on the continuity of care required to keep the patient from being transferred to the regional psychiatric hospital some 170 km away. CONCLUSION
This pilot study has opened up fertile ground for further research into nursing the rural family who are faced with the burden of mental illness. Particularly those using general hospital Rooming In Programs. Family and friends can provide care for the person in hospital and at home by supporting medication regimens, keeping the patient company, comforting him or her as only family and friends
FAMILIES LIVING WITH MENTAL ILLNESS
can, and m o n i t o r i n g behavior. F a m i l y and friends can also assist in keeping the patient c o m p l i a n t with the treatment r e g i m e n set out by the medical staff. Being in the constant c o m p a n y of the patient during hospitalization, with the benefit of experience in the m a n a g e m e n t of unpredictable or impulsive behavior exhibited by the family m e m b e r at home, can facilitate the provision of quality shared care and a continual dialogue b e t w e e n n u r s i n g and medical staff. A s s e s s m e n t information regarding patient compliance with treatment, m e n t a l status, and behavioral problems associated with the disorder and manifested in the clinical presentation during hospitalization are critical factors in the care and treatm e n t of the patient w h e n in the hospital. Additionally, preillness comparisons, which can be m o r e accurately m a d e b y family and friends than n u r s i n g and medical staff, are of critical importance during the clinical process before and after discharge. M e n t a l health nurses i n v o l v e d in the shared care of a person with m e n t a l illness will find the additional resource of the family of great benefit in caring for the patient.
ACKNOWLEDGMENTS
I would like to acknowledge the families and friends of people admitted under the Rooming In program, the patients who allowed me to interview them, the nurses who were involved, and Mike Richardson. Editorial review was provided by Lesley Batten.
REFERENCES Australian Social Trends. (1994-1996). Australian Bureau of Statistics, unpublished Census of Population and Housing data. Commonwealth Government, Canberra. Australian Embassy. (1997). Web Site. Available: http:// www.austemb.org/ and http://www.anstemb.org/people.htm. Australian Health Ministers' Advisory Council. (1989). Mental Health Discussion Paper. Canberra: Australian Government Publishing Service: Author. Axelrod, J., Geismar, L., & Ross, R. (1994). Families of chronically mentally ill patients. Health and Social Work, 19(4), 270-278. Barrowctough, C. & Tarrier, N. (1987). In Patmore, C. (Ed.) Living with mental Illness: innovations in services.
London: Helm. Birley, J. & Hudson, B. (1983). Theory and Practice of Psychiatric Rehabilitation. In Watts, N.E & Bennett, D.H. (Eds.) The Family and the Social Network and Rehabilitation. Sydney: John Wiley and Sons, Ltd.
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Bott, E. (1971). Family and Social Network, (2nd ed). London: Tavistock Publications. Conlon, M. (1995). Interaction analysis: A therapeutic tool. British Journal of Nursing, 4(11), 1269-72. Crago, H. (1996). Topic 3--Systems Theory. Department of Health Studies, Armidale: The University of New England Printery, N.S.W. Australia. Davies, B. (1995). Windows on the family. The Canadian Nurse, October, 37-41. Friedmann, M.L. (1989). The concept of family nursing. Journal of Advanced Nursing, 14, 211-216. Gerace, L.M., Camilleri, M., & Ayres, L. (1993). Sibling perspectives on schizophrenia and the family. Schizophrenia Bulletin, 19(3), 637-647. Grandine, J. (1995). Embracing the Family. The Canadian Nurse. October, 31-36. Hill, J. (1995). Who cares: A survey of carers for the mentally ill. Final report to the Commonwealth Department of Human Services and Health on a project conducted under a Human Services and Health Research and Development Grant (RADGAC), June 6, Commonwealth Government Printers, Canberra. Hughes, L., Joyce, B., & Staley, M.A. (1987). Does the family make a difference? Journal of Psychosocial Nursing, 25(8), 9-13. Jones, S.L. (1992). The family as an advocate for the mentally ill. Archives of Psychiatric Nursing, 6(3), 145-156. Loukissa, D.A. (1995). Family Burden in Chronic Illness: A review of research studies. Journal of Advanced Nursing, 2•(2), 248-255. McShane, R.E. (1991). Family theoretical perspectives and implications for nursing practice. Family Theoretical Perspectives, 2(2) 210-219. Medland, J. (1994). Conflict resolution in families. Journal of the HEIA, 1(1), 7-10. Minuchin, S. (1974). Families and Family Therapy. Cambridge, Mass: Harvard University Press. Minichiello, V., Aroni, R., Timewell, E., &Alexander, L. (1995). In Depth Interviewing. Sydney: Longman Australia Pty Ltd. Moriarty, H.J. (1990). Key issues in the family research process: Strategies for nurse researchers. Advanced Nursing Science, 12(3), 1-14. Provencher, H.L. (1996). Objective Burden among primary caregivers of persons with chronic schizophrenia. Journal of Psychiatric and Mental Health Nursing, 3(3), 181-187. Reinhard, S.C. (1994). Perspectives on the family's caregiving experience in mental illness. IMAGE: Journal of Nursing Scholarship. 26(1), 70-74. Richardson, M.E. (1996). Rooming In: An alternative to involuntary detention. Australian and New Zealand Journal of Psychiatry, 30, 236-269. Saunders, J. (1997). Walking a mile in their shoes in a symbolic interaction for families living with severe mental illness. Journal of Psychosocial Nursing and Mental Health Services, 35(6), 8-13, 45-46.
Scheick, D.M. (1995). Therapeutic insight: From family to practice. Journal of Psychosocial Nursing, 33(7), 31-33. Standing Committee on Social Issues. (1994). Suicide in rural
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New South Wales (Report No. 7) New South Wales, Australia: NSW Government Publishers. Author. Strauss, A.L. (1987). Qualitative Analysis for social scientists'. San Francisco: Cambridge University press. Thompson, E.H. & Doll, W. (1982). The burden of families coping with mental illness: An invisible crisis. Family Relations: Journal of Applied Family and Child Studies, 3•(3), 379-388. Veerman, J.W. (1994). Family stress, family functioning and emotional/behavioural problems following child psychi-
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attic problems, European Child and AdoIescent Psychiatry, 4(1), 21-31. Whall, A.L. (1981). Nursing theory and the assessment of families. Journal of Psychiatric Nursing and Mental Health Services, 19, 30-36. Yonge, O.J. (1989). Nurses and patients perceptions of constant care in an acute care psychiatric facility: A descriptive qualitative study. Unpublished doctoral thesis. University of Alberta (Canada).
HE RURAL COASTAL town of Taree in New South Wales, where this pilot study of families in the Rooming In program was conducted, has a population of approximately 25,000 and a District Base General Hospital consisting of 140 beds. There is no psychiatric hospital in the district. The nearest one is located over 170 kilometres away. Rooming In involves the voluntary care of a mentally ill person by a close friend or relative who maintains a 24-hour vigil on the general hospital ward (Richardson, 1996). The Rooming In program, developed by country psychiatrist Mike Richardson, has enabled many mentally ill people to reside close to family and friends when they would previously have been transported by ambulance or with the police to a psychiatric hospital some considerable distance away. However, the Rooming In program raises many issues about the nurse's role in the care of patients and their family in the rural context. This article describes the family experience of caring for a mentally ill family member in a general hospital. Australia is a huge, arid country of 7,682,300 km 2 with a population of over 26 million projected for the year 2050. In the 1996 census there were 18,312,000 people living in Australia, most of them living in the 10 major cities and condensed into the southeastern corner; (Australian Embassy, 1997)
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only 15% of the people in Australia live in rural areas. Aboriginal and Torres Strait Islanders, make up 1-1/2% of all Australians, and about 60% of these people live in the cities and towns. Many of the other Aboriginal people live in rural and remote areas. (Australian Embassy, 1997). The majority of all families are of the type described by the Australian Bureau of Statistics as "couples with dependent children." However, a significant proportion (7.8%) of all families are one-parent families with dependent children (Australian Bureau of Statistics, 1994-1996). RURAL AREAS AND MENTAL ILLNESS
Recently, rural areas in Australia have received considerable national scrutiny in the context of the increasing suicide rate of young people. This attention has provided some indication of the need for mental health services in rural areas. The 1994
From the School of Health Sciences-Nursing and Midwifery, Palmerston North, New Zealand. Address reprint requests to Anthony Paul O'Brien, RPN, RGN, BA, med stud., School of Health SciencesNursing and Midwifery, Palmerston North, New Zealand. Private bag 11222. Copyright © 1998 by W.B. Saunders Company 0883-9417/98/1204-000653.00/0
Archives of Psychiatric Nursing, Vol. XII,No. 4 (August), 1998: pp 219-226
219
220
New South Wales Report on Rural Suicide raised the following issues about mental illness: 1. There is a higher incidence of mental health problems in rural areas. 2. In rural areas mental illness is not readily identified and treated because there are fewer support services available. 3. There is greater denial about mental illness in rural communities, especially by men. 4. Rural people are less likely to approach services for referral and treatment because of a fear about confidentiality issues (Standing Committee on Social Issues, Report #7, 1994, pp.52-97). The deinstitutionalization movement, in full swing since the 1980s and triggered in Australia by the 1983 Richmond Report, has had a significant impact on the community. Particularly, an increasing number of people who are mentally ill and living in the community has placed an enlarging burden on the family unit and the entire community. Whereas this burden is one that demands a collective social response of caring and consideration, much of the responsibility for the caring has remained with the primary family unit. The deinstitutionalization approach has been characterized by early identification and assessment of people at risk of developing mental illness. Community and outpatient treatment, and early discharge after inpatient care together with community-based rehabilitation have been features of the deinstitutionalization process (Australian Health Ministers Advisory Council, 1989). Service provision for the mentally ill has mirrored this approach as witnessed by the proliferation of centers for rehabilitation and supervised and unsupervised group homes for persons with mental illnesses living in the community. Unfortunately, much of the availability of services is focused within the densely populated urban areas. Deinstitutionalization has provided many people who are mentally ill the same opportunities as so-called normal people in the community and has enabled them to feel as if they are once again valued members of society. However, service provision has not always matched the needs of the mentally ill person residing in the community. The literature related to nursing, the family, and the person with a mental illness within the family is small, and there is a paucity of published research
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that focuses specifically on the rural situation. From a nursing perspective, this is particularly disconcerting when, in rural areas, the family is often the first to come to the aid of people who are mentally ill. Problems faced by people living in rural areas include a lack of resources available to people living with a mental illness, distance, and the likelihood that one who is mentally ill and in need of acute care will be transferred out of town. For instance, just getting in and out of the town can be difficult when there is only one bus a day or where there are no trains or taxi services. Of the literature available on family nursing, there is little addressing the use of family nursing in the care of the person with mental illness, especially in rural health services. The following authors were recognized as having contributed to clarifying issues related to a family nursing treatment focus, issues which, if addressed, could be seen as a basis for the rationale for establishing a Rooming In program: 1. The therapeutic importance of family nursing is not being realized in clinical practice (Saunders, 1997; Conlon, 1995; Yonge, 1989; Hughes, Joyce, & Staley, 1987). 2. There is an overemphasis on the dysfunctional family instead of the functioning family trying to cope with the adversity of mental illness (Axelrod, Geismar, & Ross, 1994; Veerman, 1994; Moriarty, 1990). 3. The definition of family nursing by nursing theorists is relatively unrefined (Whall, 1981; Friedmann, 1989). 4. The consumer view of what constitutes mental illness and the burden on family members trying to cope with mental illness has not been well articulated (Scheick, 1995; McShane, 1991, Davies, 1995; Grandine, 1995; Gerace, Camilleri, & Ayres, 1993; Jones, 1992; Barrowclough & Tarrier, 1987). 5. The issue of subjective and objective family burden and the impact on family functioning is well documented from a research perspective (Reinhard, 1994; Provencher, 1996; Thompson & Doll, 1982; Medland, 1994; Loukissa, 1995; Hill, 1995). 6. Family configuration has changed in recent decades and is now connected to different groups and individuals. These new connections include blended families, single parent
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families, same sex families, close friends, and lovers (Birley & Hudson, 1983; Bott, 1971). Richardson's Rooming In Program is one means of opening up new ground for family nursing by mental health and general nurses. This program enables the family to be involved in the process of care from the outset of treatment intervention. The program also acknowledges other care givers, such as lovers and friends.
PARTICIPANTS AND METHOD
The qualitative research method of in-depth interviewing (Minichiello, Aroni, Timewell, & Alexander, 1995) was used to gather information for the study. The research proposal and consent and information sheets were written and submitted to the Area Health Service Ethics Committee for consideration. Only minor changes to the information sheet and consent form were required in the context of simplifying the language. Participants were selected in consultation with the psychiatrist, who, when someone was being roomed in, would ask the family and the mentally ill patient if they would be interested in being interviewed. Families who agreed were then approached by the researcher who explained the research and left them with an information/consent form. The following day, or later on in the same day, the family member who was rooming in with the patient was approached to sign the consent to interview. Patients also provided their signed consent. Six patients were admitted to the general hospital ward over a 4-month period. The participants observed and interviewed in this study included all six patients, their relatives and friends who accompanied them to hospital, and three registered general nursing staff members. On two occasions, the entire family was involved in interviews. There were several hours of participant observation conducted, which involved the researcher sitting in on consultation interviews, sitting in the single bed hospital room, being present during nursing reports, and sitting in the corridor of the ward where patients were being roomed in. Questions asked of participants and patients were open-ended and generally followed the circumstances of (the patients') admission and what it was like, in the hospital and at home, (for family and friends) to care for someone who was mentally ill.
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Issues were followed up if they were felt to be of relevance to emerging themes. Data were analyzed in a constant, comparative mode through an open, axial, and selective coding process to improve the density and structural intensity of the categories (Strauss, 1987). An example of coding is provided below to clarify the process of data analysis. In one interview, the family member rooming in with the patient was asked a question about her family: What about her six children? The family member replied: So she worked. They lived with some family member somewhere, but it was oh, Ma and Pa, for a while. There are lots of stories in there that I can't remember, but Joan, also when she was younger was kicked out of school at 12 because something happened to her mother and she had to raise her sisters and brothers and they are all doing well now, like they're doctors.
This comment was open coded, history of mother doing it all. The code was then combined with other open codes of similar conceptual meaning to form the axial category of Lack of social system support. After subsequent interviews and comparison of open and axial codes, the major category of Caring Responsibilities was formed. CATEGORIES
Surviving Hospitalization: The Family When a person with mental illness is roomed in, their accompanying friend or relative is compelled to make a commitment to support the person for the duration of the admission. If the Rooming In caregiver has no family or other available social supports in the area, then the isolation experienced when providing care can be considerably increased. In some situations family members providing care in Rooming In may have to travel long distances, particularly when one relative lives away from the original family unit and someone from the family is in need of support. In this context the caregiver can be withdrawn from his or her own familiar social network to care for the person with mental illness who has been admitted to hospital. I think what happens in a situation like this that people in a family, it's like "I can't do it a g a i n . . . I have just done it." Like her family in Sydney have had turns recently because of the broken leg. I had no family member with me when all this was going on 'cause I was at home by myself and I know they didn't want her to go to the regional psychiatric hospital.., and well, there wasn't any time to be organizing who was going to come, so I was the most available at the time.
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When Rooming In, the person who is familiar with the patient has the advantage of knowing the patient's behavioral patterns, needs, moods, values, and beliefs, and attitudes toward self and others. This process of knowing the patient facilitates nursing care in the hospital. Caregivers can anticipate the need for nursing or medical intervention because they know the patient and can directly communicate with hospital staff. They are then better able to survive the hospital situation. Those Rooming In caregivers who do not tolerate the long hours involved in such an experience are relieved by nursing staff or other relatives. However, if this becomes an organizational problem and the patient's behavior deteriorates, the patient is transferred to the regional psychiatric hospital. Rooming In really requires committed people. If there has been a sudden decision to accompany a family member to a hospital for admission and the caregiver is not a close family member, then he or she quickly adjust to an alteration in lifestyle suiting the condition of the hospitalization experience--the culture of the hospital as opposed to the culture of the family. Caregiver: It's sudden; you don't get time to prepare. I thought I was coming here for 24 hours to begin with, then they explained it is 24-hour care.
The responsibility for care during hospitalization falls largely on the person who accompanies the patient. This caring experience within the general hospital is seen to be a positive experience. Surviving the hospital experience can be made easier for the patient and the family when they are together in a time of crisis. Being together as a family in a hospital means the nurse must work with the family as opposed to interacting solely with the patient. This process changes the nature of the nursing interaction. However, this new interaction, one with the family and the mentally ill person, can present nurses with different challenges, particularly if they are not yet comfortable with nursing people who are mentally ill. Nurses are faced with negotiating a different relationship in the hospital, that of the patient together with their friend or relative(s) residing in hospital. Caregiver: Well, I think it is better for them here because of the distance they'd have to go. I think it's kind of a
solution for them, and most of the ones that we have had. I think there has only been one that we have had any problem with, they have all been, um, it's benefited all around because we, it's easier on us in one way that the family is with them so we're not tied up with those patients, but also I think to have someone you know who is close with you all the time makes them calmer, and it's easier to treat them. They are more secure, and I think it is good for the family too, because they know what is going on with the patient and they also don't have to travel. Caregiver: I kind of feel relieved sometimes when she goes to sleep. I can actually leave the room. They're not coming in; it was like they weren't real sure how. What I noticed is, they don't seem sure how to approach me, the staff; they also didn't know how to approach Joan, and I remember it was, it must have been Saturday afternoon. Joan was still sort of aggressive, and she stood up and shook her finger, and the nurse actually went back, and I said, "It's OK; she is not going to hurt you, you know," and Joan was aware to be afraid of her was just really a waste of time.
Being in the hospital with the patient for long periods of time was exhausting for this participant. She had become very tired from the need to be in constant company of the client. The perceived reluctance of general nursing staff to enter into the zone of the patient who was being roomed in added to the participant's concern that the nursing staff did not appear to know what they were doing for a person who had been admitted for mental illness.
Caring Responsibilities Family members Rooming In have identifiable caring responsibilities for their family member or friend. Some of these involve assisting and encouraging the patient to adhere to prescribed medical treatment and parameters of care; supervision of fluid and food intake; helping with showering and other hygiene issues; safety observations outlined by nurses managing the care environment; and most importantly, being a friend in time of crisis. The family member who is better able to assist the nurses in the care of the family member or close friend is one who, with some explanation, is clearly able to comprehend the treatment process; who is familiar with the patient's patterns of behavior, beliefs, and values; and who has been adequately oriented toward routines and functions. Caregiver: Um, maybe just in understanding, well, I think if someone has had a good background mad schooling, I think they are able to take in what the doctor is saying, naturally more, um, they understand and you can get through it more quickly with them.
FAMILIES LIVING WITH MENTAL ILLNESS
Part of the caring responsibility for families in this study was related to the care receiver or friend being medicated and to learning what actions and side effects the medications produce. It is conceivable that the longer one cares for someone who is prescribed antipsychotic or antidepressant medication and the more that the caregiver has to do with administering and monitoring of the effects of the drugs, the more they learn about the therapeutics and side effects of the drug. As one participant explained when talking about his partner's medication regime, Caregiver: Yeah, um, I know the signs and symptoms very, very good, and I know what medications to give her and I know when it's time to call for medical help. The unconditional commitment of love and time that a caregiver has for the care receiver can mean longer periods out of hospital for the person with mental illness. Family support in a rural area for these participants meant getting as much knowledge from nurses and doctors about what services and help were available to assist in the management of their mentally ill friend or relative. However, in the absence of knowledge about the availability of support mechanisms, which in a country area are limited, one family caregiver stated, Caregiver: Country people support each other, they all close in on the family and come in and help. You put your own life on hold. It can go and jump while you are closing onto the one that needs the help, that's what country people do. Not like in the city; you are a lost soul.
Impact on Family Life Learning to live with the illness for the participants in this study meant having to consciously accept that their family member was mentally ill. In the words of one informant, "life is all out of whack." In one case, the caregiver had been able to monitor medication changes during an exacerbation of his partner's depressive illness. However, when the illness and its constant care became exhaustive, he succumbed to having his partner admitted to the Rooming In Program. This admission to hospital enabled the psychiatrist to stabilize his partner's medication. Having to provide a round-the-clock surveillance for acute episodes of mental illness drains the emotional
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reserves of the family unit. One patient explains the impact on and concern about family life: Care receiver: I felt my mind kept going, racing, and I thought, What's the point in being here when you can't help yourself? And, urn, I knew I had a lot to live for, but then that didn't, there was no help in thinking that way, because I couldn't think that way. I couldn't think clearly and I mean, urn, I mean, I worried about my husband, how he was going to cope. I was worried about my parents. I mean, my parents had to look after my children. I worried about my children, and I mean Sky (daughter). I haven't really bonded with her because in a way I feel like I blame her, because if I didn't have her, I wouldn't be in this predicament. And that's how I felt, you know, I felt really down and that, I thought I should have stayed with two children. That's how it got. I mean, I do love her, but I'm not bonding. Being able to stay in touch with her family was integral to this patient's recovery. However, she was anxious about their health and safety, and this factor affected her ability to take time out from being a fully functioning family member. Time out from family responsibilities was an essential component of the recovery process, and being in hospital separate from home and family responsibilities enabled this to occur. DISCUSSION
It is possible to make a few simple recommendations for nursing care of the family based on what participants have had to say in this study. If the family is involved in the care of the family member in a hospital, then nurses should 1. Provide comfortable accommodation and services for family members and friends caring for the person in hospital 2. Involve the family in all consultations and care decisions from the outset of the admission to hospital, including discharge 3. Not just drop in on family and friends in an " A r e you O K ? " capacity! Nurses should take a proactive role to ensure that family needs are being met and that the caregiver is not burning out 4. W h e n mental status improves, involve the patient in all family meetings 5. Value what the family member has to say about patient behavior, because he or she is often the most reliable source of information 6. Followup the family after discharge with assertive community care
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This small pilot study has shed important light on the issues involved in general hospital admission for mental illness, particularly in the context of the Rooming In Program and especially from the perspective of the relatives, friends, and patients involved in the program. The threat of having to travel to the regional psychiatric hospital, the dislocation from family and familiar surroundings, being alone without extended family support, and having children cared for by others when in the hospital were all important factors related to this rural hospitalization experience. Knowing how to reduce family stress during hospitalization is critical if the family is to provide the constant company that Rooming In requires. This is a key role for nurses working in the general hospital environment. Family and friends providing care for the person during the admission supported the patient in taking prescribed medications, kept them company, comforted them as only family and friends can, and monitored the patient's behavior. They also assisted in keeping the patient compliant with the treatment regimen set out by medical staff. Because they are in the constant company of the patient during hospitalization and have the added value of previous experience in the management of unpredictable or impulsive behavior at home, family and friends facilitated a constant dialogue between family, nursing, and medical staff. The company they provided in the hospital reduced the impact of being hospitalized for a mental illness on the patient and brought other family and friends closer to the treatment encounter. Assessment information regarding compliance with treatment, mental status, behavioral problems associated with the disorder and manifested in the clinical presentation during hospitalization are critical factors in the care and treatment of the patient when in the hospital. Furthermore, preillness comparisons, which can be made more accurately by family and friends than nursing and medical staff, are also of paramount importance during the clinical process. Rooming In facilitated these comparisons. One suggested clinical approach for nurses working in this type of rural caring situation in a general hospital is to incorporate a systems approach to family therapy: This would need to be included in the education of general nurses who are involved in the caring of the patient. The nurse who is familiar
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with the concept of families operating through systemic transactional patterns may develop an awareness of the problems inherent in some families. Minuchin (1974) suggests, that we can then begin to understand the transactional patterns underpinning the whole family system. In some families, these interactional patterns could be detrimental to the healing of the patient because of the family investment in maintaining the status quo. In others, the dysfunctional pattems may be maintaining the illness behavior. Knowing something about family dynamics and the nature of family interactional patterns could assist the nursing process. A nurse who is unaware of family dynamics and behavior patterns at the time of admission to the hospital ward may be inadvertently caught up in the family process, particularly if he or she has not been trained to be sensitive to certain potential family areas of conflict. Change in family systems, as Crago (1996) suggests, requires patience (change takes time to take root), flexibility (the ability to step out of the predictable role and do something different), and a faith in the potential goodness and creativity of the system within which one is operating. The commitment of care on the part of family is significant during the acute phase of the relative's mental illness, and long-term care presents a challenge of different proportions to the family because of its ongoing nature. Family and friends supporting a mentally ill person during Rooming In, are subject to additional stress, and should, therefore, be assessed regularly for their continued ability to provide the care required in a Rooming In situation, especially when they may have had a stressful and tiring encounter before hospitalization. The emotional strength and resources of family and friends have a direct impact on the continuity of care required to keep the patient from being transferred to the regional psychiatric hospital some 170 km away. CONCLUSION
This pilot study has opened up fertile ground for further research into nursing the rural family who are faced with the burden of mental illness. Particularly those using general hospital Rooming In Programs. Family and friends can provide care for the person in hospital and at home by supporting medication regimens, keeping the patient company, comforting him or her as only family and friends
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can, and m o n i t o r i n g behavior. F a m i l y and friends can also assist in keeping the patient c o m p l i a n t with the treatment r e g i m e n set out by the medical staff. Being in the constant c o m p a n y of the patient during hospitalization, with the benefit of experience in the m a n a g e m e n t of unpredictable or impulsive behavior exhibited by the family m e m b e r at home, can facilitate the provision of quality shared care and a continual dialogue b e t w e e n n u r s i n g and medical staff. A s s e s s m e n t information regarding patient compliance with treatment, m e n t a l status, and behavioral problems associated with the disorder and manifested in the clinical presentation during hospitalization are critical factors in the care and treatm e n t of the patient w h e n in the hospital. Additionally, preillness comparisons, which can be m o r e accurately m a d e b y family and friends than n u r s i n g and medical staff, are of critical importance during the clinical process before and after discharge. M e n t a l health nurses i n v o l v e d in the shared care of a person with m e n t a l illness will find the additional resource of the family of great benefit in caring for the patient.
ACKNOWLEDGMENTS
I would like to acknowledge the families and friends of people admitted under the Rooming In program, the patients who allowed me to interview them, the nurses who were involved, and Mike Richardson. Editorial review was provided by Lesley Batten.
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