Living as a family in the midst of chronic illness

Aims and objectives

The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.

Background

Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.

Design

A qualitative design with a FSN approach was chosen.

Method

Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.

Results

The phenomenon can be described as an ongoing movement towards well‐being. The results included two themes and five sub‐themes. The first theme was ‘Co‐creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co‐creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’.

Conclusions

Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co‐create a context for living with illness. They also co‐create a context for alternative ways of everyday life.

Relevance to clinical practice

Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations together, as well as highlight resources within the family.     

Comparison of self-assessed competence and experience among critical care nurses

o'leary j. (2012) Journal of Nursing Management  20, 607–614 Comparison of self-assessed competence and experience among critical care nurses Aim To determine the level of self-assessed nursing competence and the relationship to age and experience in nursing. Background Nursing competence is a concern for all health-care stakeholders. Methods to measure competence have been evaluated worldwide. There is little agreement about the development or reliable measure of competence. Exploring these relationships can identify strategies for education, retention, professional growth and potentially affect patient outcome measures. Method The Nurse Competence Scale (NCS) was completed by 101 critical care nurses. Statistical methods were used to analyse the data. Results The nurses self-assessed level of competence ranged from good to excellent along with an increased frequency of using competencies. Statistically significant relationships were found among the variables. Conclusions Measurable, significant relationships exist among the variables. The NCS proved to be a valid and reliable instrument to measure competence. Implications for nursing management Objective and reliable assessment of nursing competence is an important measure for leadership and education. Further studies to identify other factors affecting the nurses’ experience and the effect on competence will help to develop and promote supportive strategies.     

Conserving the vitality of suffering: addressing family constraints to illness conversations

When persons are confronted with life-threatening or chronic illness, there is always a possibility that family members other than the person experiencing the illness also suffer as they attempt to manage their own distress. This paper describes exemplars from a hermeneutic study that explored therapeutic conversations between nurses and families who were living with a member experiencing ischaemic heart disease. These conversations uncovered the complexity of both individual and family suffering following acute cardiac illness events, and called attention to nursing practices that addressed some of the ways that family members were constrained from having conversations about the illness. When spaces were created for these conversations to occur, possibilities for making sense of illness and suffering were revealed as vital. These understandings support the efforts of family members to sustain and conserve family relationships in the face of illness and suffering, and inform both the professional and personal lives of nurses.     

Parental experience of family resources in single-parent families having a child with cancer

Aim. The purpose of this study was to explore the essence of family experiences in terms of family resources and how these assist a single‐parent caring for a child with cancer. Background. When families face stresses caused by cancer, they need to readjust their roles, interactive patterns and relationships, both inside and outside the family. During the adaptation process, family resources may assist recovery from stress and a return to equilibrium. Most research has emphasised the support resources available to two‐parent families during the treatment process. There is a lack of information on the experiences of single‐parent families and their available resources together with the functions and roles played by family resources during the adjustment process. Design. Qualitative. Results. Five major themes were identified: (i) facing the disease with courage; (ii) hope kindled by professionals; (iii) constructing parental role ability; (iv) assisting the children to live with the illness; and (v) family flexibility. Conclusion. The results of the current study demonstrate that single‐parent families with a child suffering from cancer employ family resources to assist family adjustment and to maintain family function/equilibrium. These results explain the dynamic interactions between the multiple levels of resources available to the family. Relevance to clinical practice. The study results provide evidence‐based information that identifies the nature of family resources in single‐parent families and describes how these resources can be applied to assist the families.     

Attitudes of healthcare staff and patients' family members towards family presence during resuscitation in adult critical care units

Aim and objectives: This study examines the attitudes of healthcare staff and patients’ family members towards family presence during resuscitation (FPDR) in critical care units in Hong Kong. Background: A wealth of literature is available on FPDR in various hospital and healthcare settings. The findings include many anecdotal accounts of both the positive and the negative effects of family presence. There is little documentation on the comparisons of staff and family members’ perceptions and the predictors of staff attitudes towards FPDR practice. Design: Cross‐sectional survey design. Method: A convenience sample of 163 healthcare staff and 69 family members was recruited from the intensive care units. Results: There was significant difference in the attitudes of healthcare staff and patients’ families towards FPDR. The regression analysis showed that the healthcare staff would be more supportive to FPDR if family members could share the dying moments with patients, family members were accompanied by a bereavement team member, there was adequate staff to support the family and staff members were adequately trained. If healthcare staff feel that family members may have the impression that the resuscitation is chaotic, witness resuscitation is traumatic experience for the family, family presence will increase risk of litigation and colleagues will not allow family members to stay during resuscitation making them less supportive of FPDR. Nurses were more supportive to FPDR than doctors. Conclusion: The results provide information for healthcare professionals on the development of FPDR programmes for patients and their family members. Through multi‐disciplinary collaborations, the effective and safe implementation of FPDR practice can be enhanced. Relevance to clinical practice: The results could help the clinical staff to develop written guidelines to produce an integrated and consistent approach to this sensitive issue in clinical practice.     

Dimensions of informal care in Greece: the family's contribution to the care of patients hospitalized in an oncology hospital

Aims and objectives. This study aims to explore the kind and frequency of care provided to hospitalized cancer patients by relatives and the reasons for providing this care. Background. Informal care is a common phenomenon across many countries. In Greece, informal caring activities occur in most hospitals. Patients’ relatives stay by their bedside for long hours and assist with care. This phenomenon is highly correlated with the nursing staff shortage. Method. This study was carried out in a Greek oncology hospital. The sample consisted of 150 informal caregivers. We used a 37‐item questionnaire called In‐Hospital Informal Care Questionnaire Acute Care. Results. The participants provide substantial help to their patients daily. On average, they stay by their bedside for 20·23 hours in a 24‐hour period. Additionally, 104 participants stated that they hire a privately paid patient's helper. The relatives stay by their patients’ bedside for various reasons such as: (1) severity of the condition; (2) providing psychological support; (3) family tradition; (4) because they do not believe their patients are safe in the hospital without their supervision; or (5) the nursing staff shortage. Conclusions. The participants offer informal care that reflects specific nursing duties. We could argue that Greek hospitals ‘use’ relatives as unpaid labour to compensate for the nursing shortage. It is disquieting that usually someone from the hospital staff suggests to the relatives to stay at the patient's bedside even after visiting hours or to hire a private paid patient's helper. This implies that the staff considers such contribution necessary. Relevance to clinical practice. The findings show that relatives perform daily tasks that nurses should be performing. They indicate that the hospital should introduce specific staffing policies for reducing families’ burden. Our findings could influence future staffing plans of nursing managers, policy makers or health authorities.     

Family member as a hospital patient: sentiments and functioning of the family

The aim of this pilot study was to find out how families experience the hospitalization of one family member and to chart the participation of the family in the treatment of the hospitalized family member. A questionnaire was used to gather data for the study and the three open-ended questions in the questionnaire were interpreted using content analysis. The study population (n = 70) was the family members of patients in the neurological wards of Tampere University Hospital. The study demonstrated a variety of negative sentiments in the families, such as worry, fear, shock, anxiety and depression at the hospitalization of their family member. The families also expressed neutral and positive sentiments, such as approval, relief and faith in the help given. Nearly 80% of the families' statements dealt with emotional responses. Changes in the everyday life of the family caused by the hospitalization of a family member were also reported, with most changes affecting the immediate family. Hospital visits gave a rhythm to family life. There were changes in the sharing of housework and taking care of affairs, as well as in relationships within the family. Family members spoke of their loneliness, fear and longing. External changes in family life were present in 13% of statements. Helping the patient in hospital involved functions like participation in nursing care, taking the patient to the cafeteria and rehabilitation. Only 20% of statements dealt with emotional support for the patient. Future research could broaden the perspective to include the views of patients, nurses and doctors on the reality of family nursing.