Striving to be prepared for the painful: Management strategies following a family member's diagnosis of advanced cancer

The Swedish Institute for Health Sciences, Lund University, Lund, Sweden. .
BMC Nursing 10/2011; 10(1):18. DOI: 10.1186/1472-6955-10-18
Source: PubMed


Cancer has consequences not only for the sick person but also for those who have a close relationship with that person. Greater knowledge about how family members manage the situation in the period immediately following the diagnosis means greater opportunity to provide the best possible support for the family. The purpose of this study was to explore management strategies that family members use when the patient is in the early stage of treatment for advanced cancer.
Twenty family members of cancer patients were included in the study shortly after the diagnosis. The patients had been diagnosed 8-14 weeks earlier with advanced lung cancer or gastrointestinal cancer. The data were collected in interviews with family members and subjected to qualitative latent content analysis. Through the identification of similarities and dissimilarities in the units of meaning, abstraction into codes and sub-themes became possible. The sub-themes were then brought together in one overarching theme.
The overall function of management strategies is expressed in the theme Striving to be prepared for the painful. The family members prepare themselves mentally for the anticipated tragedy. Family relationships become increasingly important, and family members want to spend all their time together. They try to banish thoughts of the impending death and want to live as normal a life as possible. It becomes important to family members to live in the present and save their energy for the time when they will need it the most. How participants handle their worries, anxiety and sadness can be categorized into seven sub-themes or management strategies: Making things easier in everyday life, Banishing thoughts about the approaching loss, Living in the present, Adjusting to the sick person's situation, Distracting oneself by being with others, Shielding the family from grief, and Attempting to maintain hope.
The findings revealed that the family members have their own resources for handling the early stage of the cancer trajectory in an acceptable way. There is a need for longitudinal studies to generate knowledge for designing evidence-based intervention programmes that can prevent future ill-health in these vulnerable family members.

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Available from: Gerd I Ahlstrom
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    • "In this updated literature review, we found two studies elaborating family caregivers' experiences of changed emotions and uncertainty that followed in the wake of cancer (Steinvall, Johansson, & Bertero, 2011; Williams & Bakitas, 2012), and eight studies showing that family caregivers experienced psychological distress, fear and uncertainty about the future as the most central emotional responses to the illness (Carter et al., 2010; Doumit, Huijer, Kelley, & Nassar, 2008; Hodges & Humphris, 2009; Molassiotis, Wilson, Blair, Howe, & Cavet, 2011; Muñoz et al., 2008; Papastavrou, Charalambous, & Tsangari, 2012; Schmer, Ward-Smith, Latham, & Salacz, 2008; Sjolander, Hedberg, & Ahlstrom, 2011). Milberg and Strang (2011) described family caregivers' perceptions of powerlessness and helplessness when faced with the patient's suffering and fading away, and feelings of inadequacy that resulted in both physical and psychological symptoms. "
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    ABSTRACT: Abstract To help family caregivers (FCs), social workers need to understand the complexity of FC's experiences and challenges. For this systematic review, several relevant, multidisciplinary electronic databases were searched. Of 1643 titles identified, 108 articles met the inclusion criteria and are included in this review. Various experiences, symptoms and burden related to caregiving responsibilities are described and discussed. The understanding evolving from this study about the FC's own health risk, caregiver burden and experiences over time can enhance social worker's awareness of FC's challenging situation and the potential impact this has on the FC's ability to provide care to the patient.
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    • "They can think of something else for a while when in the company of friends and co-workers. They find temporary solace and escape from their worries [27]. However, it is important to distinguish between “seeking social support,” which is a theoretical construct of management or coping, and (simply) “social support,” which requires other persons’ willingness to participate in a mutual exchange with the person seeking the support. "
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    ABSTRACT: Background To strengthen the mental well-being of close family of persons newly diagnosed as having cancer, it is necessary to acquire a greater understanding of their experiences of social support networks, so as to better assess what resources are available to them from such networks and what professional measures are required. The main aim of the present study was to explore the meaning of these networks for close family of adult persons in the early stage of treatment for advanced lung or gastrointestinal cancer. An additional aim was to validate the study’s empirical findings by means of the Finfgeld-Connett conceptual model for social support. The intention was to investigate whether these findings were in accordance with previous research in nursing. Methods Seventeen family members with a relative who 8–14 weeks earlier had been diagnosed as having lung or gastrointestinal cancer were interviewed. The data were subjected to qualitative latent content analysis and validated by means of identifying antecedents and critical attributes. Results The meaning or main attribute of the social support network was expressed by the theme Confirmation through togetherness, based on six subthemes covering emotional and, to a lesser extent, instrumental support. Confirmation through togetherness derived principally from information, understanding, encouragement, involvement and spiritual community. Three subthemes were identified as the antecedents to social support: Need of support, Desire for a deeper relationship with relatives, Network to turn to. Social support involves reciprocal exchange of verbal and non-verbal information provided mainly by lay persons. Conclusions The study provides knowledge of the antecedents and attributes of social support networks, particularly from the perspective of close family of adult persons with advanced lung or gastrointestinal cancer. There is a need for measurement instruments that could encourage nurses and other health-care professionals to focus on family members’ personal networks as a way to strengthen their mental health. There is also a need for further clarification of the meaning of social support versus caring during the whole illness trajectory of cancer from the family members’ perspective.
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    • "The literature reflects an interest in generating knowledge about how coping influences mental health. In a study by Sjölander and colleagues [32], findings showed that family members of a person with advanced lung or gastrointestinal cancer strive to prepare themselves mentally for the anticipated tragedy and use several different management strategies to cope with the menacing future. These results are in line with several previous studies [11,32,33]. "
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    ABSTRACT: Receiving a cancer diagnosis affects family members as well as the person diagnosed. Family members often provide support for the sick person in daily life out of duty and love, and may not always think of their own vulnerability to illness. To individualise support for them, family members who are most at risk for becoming ill must be identified. The aim of this study was to investigate health-related quality of life (HRQOL) in family members of patients with advanced lung or gastrointestinal cancer 3 to 15 months after diagnosis. Data on mental and physical dimensions of HRQOL were collected from family members of these patients in this prospective quantitative study. Five assessments using the Short Form 36 Health Survey (SF-36) and EuroQol (EQ-5D) were conducted during a 1-year period starting 3 months after diagnosis. Thirty-six family members completed the study, i.e. participated in all five data collections. No statistically significant changes in physical or mental HRQOL within the study group appeared over the 1-year follow-up. Compared with norm-based scores, family members had significantly poorer mental HRQOL scores throughout the year as measured by the SF-36. Family members also scored statistically significantly worse on the EQ-5D VAS in all five assessments compared to the norm-based score. Findings showed that older family members and partners were at higher risk for decreased physical HRQOL throughout the 1-year period, and younger family members were at higher risk for poorer mental HRQOL. It is well known that ill health is associated with poor HRQOL. By identifying family members with poor HRQOL, those at risk of ill health can be identified and supported. Future large-scale research that verifies our findings is needed before making recommendations for individualised support and creating interventions best tailored to family members at risk for illness.
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