Finding a wider horizon: Experiences of being a next-of-kin of a person suffering from colorectal cancer as told after having participated in a psychoeducational program
Introduction
Colorectal cancer (CRC) is the second most common cancer diagnosis in women and third most common in men worldwide (Ferlay et al., 2010). In Sweden, 6000 persons per year receive this diagnosis (The National Board of Health and Welfare, 2009). The primary treatment is surgical removal of the tumour followed by chemotherapy and radiation treatments.
The treatment and its side effects impact both the person treated for CRC and their partner because it affects everyday life as well as psychological wellbeing (Houldin, 2007). Partners of CRC patients report a higher level of psychological distress than the treated person (Northouse et al., 2000). The impact of the patient's disease can cause exhaustion and occasionally force a partner into early retirement (Ohlsson-Nevo et al., 2011). A Swedish study found partners of CRC patients to be especially vulnerable. They are more likely to suffer from additional health problems, have higher health care costs, require more frequent psychiatric diagnoses, and incur in-patient care more often, as well as utilizing a higher level of sick leave compared to the general population (Sjovall et al., 2009, Sjovall et al., 2010). Partners and relatives of cancer patients describe facing an uncertain future and being in need of information (Adams et al., 2009).
Northouse et al. (2010) have classified interventions for caregivers of cancer patients into three major types: psychoeducational group, therapeutic counselling, and skills training (Northouse et al., 2010). The focus in psychoeducational intervention is to provide information about the physical, emotional, and psychosocial needs of patients and caregivers, and about family relations. The therapeutic counselling is mainly a means to develop a therapeutic relationship and address concerns related to cancer or care giving. Intervention, including skills training, provides coping, communication, and problem-solving solutions that can be useful for the next-of-kin (Northouse et al., 2010).
A literature review revealed that partners of cancer patients who participated in a psychoeducational group reported less mood disturbance (Bultz et al., 2000), less negative appraisal of care giving, reduced distress, hopelessness, and uncertainty (Northouse et al., 2007). Following an intervention, the next of kin reported improved problem solving abilities (Caress et al., 2009), improved knowledge, as well as an improved sense of emotional support and belonging (Docherty et al., 2008). On the other hand, recent reviews (Carey et al., 2012, Glasdam et al., 2010, Ussher et al., 2009) conclude the lack of evidence for the efficacy of psycho-social interventions in reducing distress and improving coping in informal cancer careers due to methodological limitations. Nevertheless, a meta analysis of Northouse et al. (2010) reported significant positive effects on multiple outcomes after three months, such as appraising the burden of care giving, informational needs, coping strategies, self-efficacy, mental distress, anxiety, and marital–family relationships.
Previous interventions for next-of-kin were mainly designed for mixed groups of cancer patients, although interventions for next-of-kin to patients with the same cancer type have been found more effective (Ussher et al., 2009). We have not identified any studies focussing on psycho-educational interventions designed for next-of-kin to persons treated for CRC.
It has been suggested that qualitative evaluations of subjective experiences in psycho-social interventions might give other valuable information that standardized instruments in quantitative studies cannot offer. It offers possibilities to detect new variables that are overlooked or neglected in standardized instruments (Hagedoorn et al., 2008).
A deeper understanding of the next-of-kin's life experience and of the experiences of participating in a psychoeducational support group could guide the design of future interventions that are aimed to support the next-of-kin to CRC patients. The above-mentioned benefits as well as the gap in research of next-of-kin of persons treated for CRC participating in psycho-educational interventions, motivate this type of study.
The aim of this study was twofold: first, to describe the experience of being the next-of-kin of a person suffering from colorectal cancer, and second, to describe how a psychoeducational program might contribute to the next-of-kin's life experience.
Section snippets
Design
A qualitative design with interviews was chosen for this study in order to capture the subjective experience and to better understand the perspective of the next-of-kin to a person suffering from CRC who had participated in a psychoeducational program (PEP).
Participants
The definition of “next-of-kin” in this study is a person chosen and defined by the patient as a “significant other”. The 18 participants in this study were recruited from a group of 31 next-of-kins who participated in a PEP. The sampling
Results
One theme Finding a Wider Horizon emerged from the data and was supported by the sub-themes Facing a personal challenge and Obtaining New Insights and Perspectives (Table 2). The wider horizon is a metaphor of the participant's personal growth, as it was described by the next-of-kin. This personal process was possible not solely through the lectures or by meeting peers, but through the integration of both these parts as well as by the personal challenging experiences of turning into being a
Discussion
An important strength of this study is that the design offered opportunities for the participants to reflect on their lives both from the perspective of being a next-of-kin of a CRC patient in general and after having taken part in the PEP. This makes it possible to identify a process where their previous experiences as a next-of-kin blend with the information provided at the lectures and the reflections together with others in the same situation. This seems to be an important aspect as it puts
Conclusions
The next-of-kin in this study described their experience as a next-of-kin to a person treated for colorectal cancer as Facing a personal challenge and their participation in a psychoeducational program was described as a help to Obtain New Insights and Perspectives of their own life, of the patient, and of others in the same situation.
The cancer diagnosis was an existential wake up, where they had to confront that life is not infinite. They had to reflect on the possibility of life without the
Relevance to clinical practice
The findings from this study can be used when planning future psychoeducational programs for next-of-kin to patients with CRC as it offers possibilities to understand their situation and the experience of participating in a psychoeducational program. By taking the next-of-kin's perspective into account it is possible to further improve interventions tailored to meet their needs. An intervention as the one described in this study is easy to apply, because the professionals involved in the
Conflict of interest
No conflict of interests.
Acknowledgements
This study was financially supported by a grant from Örebro County Council Research Committee. The researchers wish to thank Maria Ekholm Takman for transcribing the interviews, Magnus Andersson, Colorectal surgeon and senior consultant, for his valuable advice and the Michaelisis sisters for proofreading.
References (43)
- et al.
The information needs of partners and family members of cancer patients: a systematic literature review
Patient Education and Counseling
(2009) - et al.
Understanding the experience of caregivers: a focus on transitions
Seminars in Oncology Nursing
(2010) - et al.
Cancer peer support programs – do they work?
Patient Education and Counseling
(2004) - et al.
A narrative review of interventions to support family carers who provide physical care to family members with cancer
International Journal of Nursing Studies
(2009) - et al.
Cancer in the mass print media: fear, uncertainty and the medical model
Social Science and Medicine
(2006) - et al.
Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness
Nurse Education Today
(2004) - et al.
Systematic review of peer-support programs for people with cancer
Patient Education and Counseling
(2008) - et al.
Couples' patterns of adjustment to colon cancer
Social Science and Medicine
(2000) - et al.
Generalization in quantitative and qualitative research: myths and strategies
International Journal of Nursing Studies
(2010) - et al.
Development of a theoretical framework describing relatives' involvement in palliative care
Journal of Advanced Nursing
(2001)
Self-management training for people with chronic disease: a shared learning experience
Journal of Health Psychology
How can experiences of patients and carers influence the clinical care of large bowel cancer?
European Journal of Cancer Care
A randomized controlled trial of a brief psychoeducational support group for partners of early stage breast cancer patients
Psycho-Oncology
The unfulfilled promise: a systematic review of interventions to reduce the unmet supportive care needs of cancer patients
Supportive Care in Cancer
Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review
Palliative Medicine
Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008
International Journal of Cancer
Cancer caregiver support group: a model for intervention
Clinical Gerontologist
Support efforts for caregivers of chronically ill persons
Clinical Nursing Research
Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects
Psychological Bulletin
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