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Objective
To describe how families perceive stress by investigating parental experiences after admission of their child to a paediatric intensive care unit (PICU).
Design
Phenomenology.
Setting
Medical-surgical PICU of a major children's hospital.
Participants
10 families were randomly selected from the Family Impact of Catastrophic Childhood Illness Project, which included families whose children (aged 1–14 y) presented with life threatening illnesses of acute onset. Families were excluded if they had a history of extended PICU admissions, recently immigrated from Southeast Asia, stayed <2 days in the PICU, did not speak English, or resided >120 miles from the study site. There were 8 two parent and 2 single parent families (mean age of mothers 28 y and fathers 32 y). Children (age range newborn to 9 y, 50% boys) had illnesses including acute pneumonia, acute epiglottis, congenital heart disease, epidural haematoma, status epilepticus, and acute appendicitis.
Methods
Semistructured family interviews lasting 1–2 hours were conducted privately in either a hospital room or the family's home. 3 main questions were asked: what has this experience been like for you and your family? How has this experience made you feel? What do you believe to be the kinds of things that have helped your family through this experience?. Information was gathered on the parents' collective perceptions. 5 interviews were conducted 2–7 days after admission to the PICU; and 5 were conducted 12–15 days after admission and relied on some retrospective data. Data saturation occurred after interviews with 10 families. Interviews were tape recorded, transcribed verbatim, and analysed using a 3 stage contextual analysis approach developed by Colaizzi.
Main results
4 dimensions of collective family stress perception were identified. The first dimension, initial boundary ambiguity, referred to the global experience of crisis caused by the uncertainty of the child's condition. The experience involved processing, understanding, and seeking information about the child's condition. The second dimension, parents' coping patterns, described the parents' relationships with the ill child, other children, and each other. Parents viewed participation in their child's care as important and felt helpless when their parenting roles were superseded by healthcare providers. Parents allowed other people to care for their other children so as to normalise their other children's experience, and provided mutual support for each other. The third dimension, extrafamilial resources, represented external relationships, information related to the child's condition, and primary caregiver resources. The fourth dimension, functioning of the family boundary, referred to experiences of ambiguity that prompted self regulation of the family system to maintain its boundary and keep it as a cohesive unit. Family boundary was maintained by interaction with the outside world, the help of others, and continued a relationship with the ill child.
Conclusions
Four dimensions described a collective family level perception of stress during the health crisis of a child.
Commentary
The study by Mu and Tomlinson advances our understanding of family stress, meaning construction, and coping responses during a PICU admission. Theoretically, the development of the collective family stress perception construct is consistent with the approaches of Reiss1 and Boss.2 Clinically, the findings relative to parental stress, parental role revision, and parental participation in caregiving are consistent with the works of Miles et al,3 Jay,4 and Curley.5
Limitations of the study include the use of parents alone as informants about presumed family level data. The study did not include informants from outside the family system who may have been able to provide an external perspective about the family experience. The interviews gave current and retrospective parental accounts of the PICU experience; however, the data were analysed collectively. Lastly, self report interviews are inherently limited by the subjects' conscious awareness and the amount of information that they choose to discuss, particularly when still dependent on the healthcare system.
Clinical implications are far reaching and include the importance of regular information exchange and good staff-parent communication, flexible visitation policies, reinstatement of familiar parental roles, and parental participation in child caregiving and contribution to recovery. Opportunities for families to share their “stories” with staff members can help to reduce stress, promote emotional wellbeing and family equilibrium, and enhance parent-professional relationships.
Footnotes
Sources of funding: in part, the Bean Foundation, Minneapolis Children's Medical Center, Minneapolis and University of Minnesota, School of Nursing Research Award.
For article reprint: P Mu, Associate Professor, Institute of Clinical Nursing, National Yang-Ming University, Taiwan. Fax +886 2 820 5514.