How relatives of patients with head and neck cancer experience pain, disease progression and treatment: A qualitative interview study

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Abstract

Purpose

This study of relatives to patients with head and neck cancer (HNC) treated with radiotherapy describes how the relatives experienced the patient's situation, especially with respect to pain, and how the relatives themselves experienced the situation.

Methods

Semi-structured interviews of 21 relatives to HNC patients who suffered from pain were conducted, and a qualitative content analysis was performed.

Results

The relatives experienced that the patients suffered from physical, psychological, and social pain. A dark picture consisting of lack of participation and knowledge, psychological distress, and lack of support were reported. Thus, a main category: relatives struggle with loved one's pains related to head and neck cancer treatment and with their own demanding situation – was based on the following four categories: inability to relieve and comprehend the physical suffering of the patients; overwhelming emotions were experienced that affect the patients and the relatives themselves; in need of support from the health care service; and altered daily activities and family roles due to illness and treatment.

Conclusion

In patients physical, psychological, and social pain were prominent and in relatives psychological distress, lack of knowledge and support were experienced. Thus, to reduce pain and anxiety in patients and relatives, the health care professionals should provide relevant knowledge about pain management. The health care professionals should also provide educational interventions that address the psychological and social factors that impact pain for HNC patients and their relatives. Well-thought supporting care and easily accessible information about practical concerns should be offered to HNC patients and their relatives.

Introduction

When people suffer from cancer, there is a risk that their family members' quality of life and everyday life will also be negatively affected (Northouse, 2005, Northouse et al., 2012). It has been reported (Juarez and Ferrell, 1996) that relatives may endure a great degree of suffering when their loved one is in pain. The extensive psychosocial impacts on head and neck cancer (HNC) patients are well known (Fischer et al., 2010, Kohda et al., 2005, Verdonck-de Leeuw et al., 2007). A prospective study of patients with HNC found that living with a spouse lowered the risk of adverse changes in quality of life (Fang et al., 2004). The importance of being surrounded by family, of belonging, and of social support has been shown to contribute to good health and management of cancer diseases including HNC (Patterson et al., 2013, Pinquart and Duberstein, 2010).

Compared to population wide-levels relatives of HNC patients experience higher levels of psychological distress and lower levels of wellbeing (Ross et al., 2010). HNC patients require a considerable amount of care and support and it is difficult for their relatives to take care of them (Precious et al., 2012). To cope with this demanding situation, it may be necessary to provide psychological care for both patients and their relatives (Baghi et al., 2007). To date, however, few studies address the life situation of the relatives of HNC patients.

HNC often requires arduous treatment that causes severe adverse effects and sometimes the disease has a poor prognosis – the five-year survival for HNC is between 23% and 88%, depending on the type of HNC (Argiris et al., 2008). Painful oral mucositis (OM) is a common adverse effect of radiotherapy treatment (RT), the standard treatment for HNC. About 75% of patients with HNC experience physical pain despite pain relief treatment (Babin et al., 2008, Epstein et al., 2010).

A recent review (Longacre et al., 2012) did address several important aspects on care givers' to HNC patients situation but did not include care givers' experiences of the HNC patients' pain. This is also an issue which to our knowledge is sparsely studied and important to elucidate.

This qualitative interview study of relatives to patients with HNC treated with RT describes how the relatives perceived the experiences of the patient's situation, especially with respect to pain, and how the relatives themselves experienced the situation.

Section snippets

Participants

Relatives of curative HNC patients who had been treated with RT and were referred to the specialized pain care department at the University Hospital, Linköping in southern Sweden, north Europe participated in the study. The department is staffed by anesthesiologists and nurses specialized in pain care and treats inpatients and outpatients. Linköping is located in the county council of Östergötland. Catchment area of the University Hospital of Linköping is about one million people.

To be

Results

A main category (Fig. 1) – relatives struggle with loves one's pains related to head and neck cancer treatment and with their own demanding situation – was based on the following four categories: inability to relieve and comprehend the physical suffering of the patients; overwhelming emotions were experienced that affect the patients and the relatives themselves; in need of support from the health care service; and altered daily activities and family roles due to illness and treatment. Fig. 1

Discussion

The relatives experienced that the patients suffered from substantial physical, psychological, and social pain. This was a challenging situation to support for the relatives. A dark picture consisting of, lack of participation and knowledge, psychological distress, and lack of support from health care providers were reported to affect the relatives themselves.

Insufficient pain relief in patients was extensively reported by the relatives who additionally experienced lack of knowledge of pain

Conflict of interest statement

None declared.

We have no financial relationship to declare and we have full control of all primary data.

References (46)

  • S. Aranda et al.

    Barriers to effective cancer pain management: a survey of Australian family caregivers

    European Journal of Cancer Care

    (2004)
  • E. Babin et al.

    Quality of life in head and neck cancers patients: predictive factors, functional and psychosocial outcome

    European Archives of Oto-Rhino-Laryngology

    (2008)
  • M. Baghi et al.

    Demands on caring relatives of head and neck cancer patients

    The Laryngoscope

    (2007)
  • V.A. Brown et al.

    Patient preferences for the delivery of bad news – the experience of a UK Cancer Centre

    European Journal of Cancer Care

    (2011)
  • D. Cavers et al.

    Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study

    Canadian Medical Association Journal

    (2012)
  • S.C. Chen et al.

    Support needs of patients with oral cancer and burden to their family caregivers

    Cancer Nursing

    (2009)
  • N. Drabe et al.

    Changes in close relationships between cancer patients and their partners

    Psycho-oncology

    (2013)
  • B.M. Edhlund

    Nvivo 9 Essentials: Your Guide to the World's Most Powerful Qualitative Data Analysis Software

    (2011)
  • S. Elo et al.

    The qualitative content analysis process

    Journal of Advanced Nursing

    (2008)
  • J.B. Epstein et al.

    A systematic review of orofacial pain in patients receiving cancer therapy

    Supportive Care in Cancer

    (2010)
  • F.M. Fang et al.

    Changes in quality of life of head-and-neck cancer patients following postoperative radiotherapy

    Acta Oncologica

    (2004)
  • B.R. Ferrell et al.

    The impact of cancer pain education on family caregivers of elderly patients

    Oncology Nursing Forum

    (1995)
  • V. Fialka-Moser et al.

    Cancer rehabilitation: particularly with aspects on physical impairments

    Journal of Rehabilitation Medicine

    (2003)
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