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How a personal account contributes to nurse knowledge: Rachel's story

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Joan Livesley, BSc, MA, RSCN.

Lecturer, University of Salford

Story-telling is an important tool for nurses seeking to explore and discover the meanings of their own personal and professional experience and the experiences of those with whom they work.

Story-telling is an important tool for nurses seeking to explore and discover the meanings of their own personal and professional experience and the experiences of those with whom they work.

Consistent with reflection and reflective practice, stories can be recorded and analysed in a way that contributes to the development of new knowledge by exposing the tacit knowledge held by those who live through traumatic events.

To this end, Rachel's story reflects on the birth of her daughter, born with a congenital heart anomaly and fighting for her life. It communicates the conflicts, problems, complications and triumphs that arise when parents, children and hospital staff work together.

The story invites readers to consider the impact of their actions on those they seek to help and demonstrates how tenacity, tact, patience and compassion are fundamental components of nurses doing the right thing and achieving clinical effectiveness.

In most fiction, stories have a beginning, middle and end, but in real life such tidy elements are often missing. Real-life stories are seldom told in a strict order with clear chronological markers; they are bound by events that are symbolic and important (Berger, 1997). Real-life stories tend to focus on the unusual and the dramatic. They can be chaotic and confusing, but with the right analytical frameworks they can help to illuminate the hidden aspects of personal experience and help those who work with people in crisis to understand what really matters.

Stories can effectively place the experience of those who use hospital services at the centre of that service and contribute to achieving clinical effectiveness, more simply expressed by 'getting everything right' (RCN, 1996). They provide valid and important evidence for clinical decision-making (Koch, 1996).

I met Rachel through the course of my work when she was a first-year student nurse. She had left a career as a graphic designer to study for a diploma in nursing children. Over the next three years our relationship deepened into one of mutual respect and friendship. I became aware of Rachel's family history and the emotional turmoil she had experienced when her first baby was born with a congenital heart anomaly.

She was an incredible asset to the student group and helped us all to question some of the 'sacred cows' of our practice. We learned that some of the beliefs we held dear about caring for the parents of a sick child were not in fact helpful to parents. It became apparent that the only real experts in meeting the needs of parents with sick children are the parents themselves and we need to learn from them.

While I was familiar with the research into aspects of parents and children in hospital, it was nothing compared to Rachel's understanding.

This deeply personal reflection highlights the vital contribution that nurses can and do make to the care of parents during times of crisis. It communicates how fear and desperation coexist alongside self-blame, guilt and hope for recovery.

Individual nurses will determine the relevance of this story to their own practice in similar situations; in part this will depend on how they understand and give meaning to what is expressed. It will also depend on their understanding and awareness of the research with which the story is congruent.

Much has been published on the relationship between parents, mostly mothers, and nurses (see Savage and Callery, 2000). Rachel's story has particular resonance with the findings of Noyes' (2000) study, which sought to explore the experiences of mothers of children in one intensive care unit to determine if their physical and psychological needs were being met. Noyes' analysis of interviews with 10 mothers indicated that the needs of the children took priority over the needs of the parents, but that nurses would support parents when they were available to do so.

The support offered to Rachel and her husband had a significant impact on their ability to cope with the continuous painful events that unfolded as the extent of Sarah's problems became known. It was also crucial in helping them to develop and maintain their relationship with Sarah when they felt incapable of carrying out basic care.

In keeping with the mothers in Noyes (2000) study, Rachel's story offers a graphic account of the acute symptoms of stress that surrounded her daughters' plight. Rachel explains how she developed a heightened awareness of the behaviours of others and it is important that nurses remember the importance of body language and the potential for parents to draw conclusions from an attitude or tendency to avoid a particular child or situation. There is a need to consider giving information constantly on the child's progress.

The mothers in Noyes' (2000) study also allude to the notion of the baby becoming 'different' in the very technical surroundings that we may take for granted. It is essential that we remember how alien the hospital environment and procedures may appear to those who are unfamiliar with them. As Rachel's story indicates, the importance of everyday items such as clothes and a photograph make important differences. The story also highlights the importance of the ward culture being one that supports openness, enabling parents to express their feelings without fear of being judged harshly and encourages questions and comments.

Rachel's attempts to remain functional as a parent also resonate with Noyes' (2000) findings. Encouraging parents to engage in parenting activities such as touch and talk, as Rachel notes, can have a significant impact on the parents' ability to cope during times of crisis.

Collecting stories from parents and children has the potential to generate knowledge and understanding that will help us create environments and practices that continue to support and help people cope during times of crisis and enduring stress.

RACHEL'S STORY: 'THE NURSE HAD THROWN ME A LINE TO GRASP AND HOLD ON TO ...'
First reactions

I had my first experience of the NHS in 1994 when my firstborn daughter, Sarah, was delivered with undiagnosed major congenital heart abnormalities. When she was 15 days old she started to have feeding problems and was initially diagnosed with a twisted gut, a condition thought to be easily corrected with surgery. My nervous reaction was to laugh when the consultant gave my husband and I our daughter's diagnosis. My baby was in a life-or-death situation. Inwardly I felt anger, grief, shame and guilt.

Our daughter's plight became public knowledge. I was aware of whispers from family and friends who seemed to need to apportion blame to me or my husband.

Evaluation

I still do not know if the need to apportion blame is just a basic human need that arises when people are hurting. Confused, angry and in pain, my husband and I retreated into ourselves to conserve energy. We 'battened down the hatches' until our immediate situation became bearable and we had conserved enough energy to fight back.

From this experience I have come to understand that blank responses, anger or untenable behaviour by parents in similar situations can actually be a sign of desperation or a reaction to what they think others are thinking. I now believe it is important for nurses to ask parents how they would wish any enquiries about their child to be dealt with.

A life-and-death crisis

Sarah was transferred to another hospital by ambulance. On that journey her health deteriorated rapidly. She arrived in a life-and-death crisis and was encased in an incubator, naked but for her nappy.

Evaluation

Our relationship with our daughter felt immediately distanced. The incubator presented a real physical barrier, but her diagnosis created a mental barrier and our feelings of disappointment and guilt created an emotional one. I was her mother, she was my new baby, and I should have been able to protect her, but I could not.

Our baby's survival depended totally on the knowledge and skills of the medical staff. I was rendered - and felt - useless. I grew reluctant to touch my baby lest my touch should interfere with the monitoring equipment and readings. The distance I felt grew within a short time. I refused to answer calls from well-wishers, delegating them to my husband. I could concentrate only on our daughter and her survival.

I feel it is imperative to include parents at each stage, to help them to understand their own feelings and encourage them to touch their child, to use their voice to comfort their child, to use the sense of smell in order to get close and get to know their son or daughter. In other words, to help them to parent their child.

A nurse intervenes

I'm so grateful to the nurse who, shortly after we were given our baby's diagnosis, whisked me away to a room with a breast-pump, saying: 'You'll want to keep up your milk supply. It's the one thing you can do to help her.' Being able to help gave me a modicum of solace and helped me to connect to the baby in the glass box.

Shortly afterwards another mother entered the room with a baby feeding at her breast. I remember I wanted to hit her as she questioned me about my baby despite the curtain between us. I wanted to tell her to mind her own business. Thankfully my numbness and remaining sanity prevented me doing so.

Evaluation

The nurse who directed me to the breast pump had thrown me a line to grasp and hold on to. It gave me a purpose - breast-feeding made me irreplaceable in the midst of all that technology and the medical know-how necessary for our daughter's survival.

I was desperate to understand Sarah's progress. I learnt to memorise the numerous medical discussions. I became adept at eavesdropping on hand-overs and astute at reading the body language of staff. I developed a heightened awareness of my senses that, like a sixth sense, awoke in times of danger.

Over time I would question the nurses and subsequently became more and more dependent on the knowledge and goodwill of all of the team.

It was the compassion, kindness, dedication and caring from the nurses for our baby, me and my husband that carried us through. They acted as advocates for our baby and us. They quickly became friends and confidantes. They helped us to understand the situations of other families in the unit that we found difficult.

The nurses helped us to cope with relatives bringing healthy babies on to the ward. And they helped us understand why people took photographs of their children, while we watched our own daughter struggling for her life. We found other people's jocularity offensive.

We could not understand why other parents were not with their dying child when they had agreed with a do-not-resuscitate order. They helped us to understand. We were grieving, we were raw, and we had become judgemental.

I now know the importance of helping parents to maintain some aspect of control, of ensuring they are involved in decision-making and to help them maintain a degree of cohesiveness within their family structure. Simply helping them to be involved and stressing how important they are to their child will help this.

Time to explain

We told it as it was and we said what we meant. Why make small talk when your daughter's life is threatened? The nurses took the time to explain what was happening in the different situations we saw around us. They were kind, never implying it was none of our business but choosing, rather, to help us see things from another point of view and help us make sense of what was going on.

They acknowledged our concerns and our distress. They hugged us when our daughter was fighting for her life, they cried with us; they gently wiped away their tears when she was losing ground. They made helpful suggestions, such as taping a photograph of our baby to the top of the incubator in order to remind everyone that she was part of a family. I think we needed this reminder most of all.

Then, just when we thought we had found the strength to fight with our daughter, just when we thought she could win this huge battle, a little voice would creep inside my head and cause more confusion. Was I asking too much? Was I causing her too much pain? If she were a pet, would not the kindest thing be to let her go? I entertained real but bizarre thoughts about the financial situation. How much was her care costing? Who was paying? Was this fair when the same amount of money could be used to help so many more children in other countries?

It is essential that nurses working with parents in crisis refrain from making judgements about how they react and behave. I was deeply touched by the nurses' personal involvement, deeply touched by their tears. To care means much more than simply to care for the physical; the nurses who cared for us demonstrated their expertise in this area.

Getting better

As our baby's health stabilised the consultant decided to wean her off the paralysing drugs. I suddenly felt really tired and needed to rest at last.

Later, when I returned to the unit, everyone was gathered around our daughter's cot. I inquired as to their concern and, as I did, Sarah opened her eyes for the first time. Her nurse acknowledged the fact that my voice prompted my daughter to wake up. That moment is emblazoned on my memory for eternity, intact and clear regardless of time.

From then on, she seemed to make progress overnight. Proper clothes made her appear human again. Moving her to a cot was a big step forward.

Evaluation

We saw these as massive steps towards keeping her. We could start to rest at last. Some time afterwards, when we could cuddle her in the rocking chair, wires permitting, even in our immense joy we still felt guilty. Having made good relations with other parents on the ward we were painfully aware of their struggle to hold on to their own children.

Moving to the baby unit

Finally, Sarah was discharged on to the baby unit and I was offered the opportunity to bath her. I confided to the ward manager that I couldn't possibly do that. I felt incapable. I was grateful that he took time out of his busy managerial schedule to help me bath her and help us re-establish the real relationship between mother and baby.

Evaluation

The nurses who worked with us gave so much of themselves for me and my family - far beyond the remit of their job descriptions. It is clear to me that nurses working with families in crisis need to understand and develop skills to work with a maelstrom of emotions and reactions from parents. However, they also need support mechanisms to help them cope with their own emotions in order that they can continue to support the parents for as long as necessary.

Resolution

I quit my job as a graphic designer in order to aspire to something more meaningful. I wanted to help families as we were helped and so trained as a nurse. I want to share the same sort of compassion that was given to us when we needed it most.

At the age of nine, Sarah is a huge ray of sunshine in our lives. She is not without health difficulties, as you would expect, but is loved by her peers and she displays immense kindness, compassion and the sort of wisdom you would expect from a person who has lived a lifetime. Although she is only nine, she is my daughter and she humbles me.

- The names of patient and parent have been changed.

Berger, A. (1997)Narratives in Popular Culture, Media and Everyday Life. London: Sage Publications.

Koch, T., (1998)Story telling: is it really research? Journal of Advanced Nursing 28: 6, 1182-1190.

Noyes, J. (2000)Being a mother of a critically sick child: issues for nursing practice and research. In: Glasper, E., Ireland, l. (eds). Evidence-Based Child Health Care: Changes for practice. London: Macmillan.

Royal College of Nursing. (19996)Clinical Effectiveness. London: RCN.

Savage, E., Callery, P. (2000)Parental participation in the care of hospitalised children: a review of the research evidence. In: Glasper, E., Ireland, l. (eds). Evidence-Based Child Health Care: Changes for practice. London: Macmillan.

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